Looking Forward Resource Guide

The Looking Forward program’s

Resource Guide to Patient Services

father michael j. mcgivney center for cancer care

Resource Guide – Table of Contents

hospital of saint raphael looking forward • 203.789.3488 • srhs.org/cancer

I. Welcome

Contactinformation...................................... 1

Registration................................................... 3

Patientinformationsheet.............................. 5

Welcomeletter.............................................. 7

Communicatingwithyourdoctors................ 8

WhatisLooking Forward?............................ 9

II. Finding your way around

Findingyourwayaround.............................. 13

Drivingdirections.......................................... 15

HospitalofSaintRaphaelmap..................... 16

III. Treatment

Whatiscancerandchemotherapy............... 19

Radiationoncology....................................... 22

Surgery.......................................................... 27

HematologyOncologyInfusion Therapyunit(H.O.I.T.)................................ 28

Verdi4WestinpatientOncologyunit............ 29

Clinicaltrials.................................................. 30

Glossary(clinicaltrialphrases)..................... 32

NecessaryNutrition...................................... 33

Managingcancerpain(PalliativeCare)......... 35

Paincontrol................................................... 37

IV. Affiliated Clinical Specialties

AffiliatedOncologies(Neuro, Thoracic,etc)............................................. 39

Women’sCenterforBreastHealth............... 40

AdditionalTherapies..................................... 41

GeneticTestingservices............................... 42

HomeCareservices...................................... 44

V. Support

Navigator....................................................... 45

Psychologicalandemotionalsupport.......... 46

CancerSurvivorshipprogram....................... 46

Caregiving..................................................... 47

Pastoralcare................................................. 49

Availableresources....................................... 50

Communityoutreach.................................... 53

Resourcelist................................................. 54

Glossaryofterms.......................................... 60

VI. Helping Out

Volunteerism................................................. 63

Philanthropy.................................................. 64

Looking Forward’s Resource Guide to Patient Services

Welcome



Resource Guide – What is Looking Forward?

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Resource Guide – Contact Information

Welcome to the

Father Michael J. McGivney Center for Cancer Care

Below are department phone numbers should you need our assistance.

Father Michael J. McGivney Center for Cancer Care ............ Toll Free: 1-866-291-HOPE (4673)

New Haven ................................................................................................................203.789.3131

Hamden .....................................................................................................................203.867.5622

Radiation Oncology Department ..............................................................................203.789.3131

CyberKnife® .................................................................................................................203.789.6639

Hematology Oncology Infusion Therapy (HOIT) ......................................................203.789.3345

Looking Forward .........................................................................................................203.789.3488

Specialty Shop

New Haven ................................................................................................................203.789.5904

Hamden .....................................................................................................................203.867.5617

Clinical Trials ...............................................................................................................203.789.3545

AcknowledgementsThis guide is the culmination of many hours of collaboration between members of a multidisciplinary team of physicians, healthcare professionals and volunteers. Thank you to the patients and family members who expressed their needs and shared their stories to help guide the development and revisions of this manual.



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Resource Guide – Registration

The Looking Forward Program is a patient support, education and wellness program for people living with cancer and their loved ones. We offer a variety of supportive and wellness services designed to reduce the anxiety and stress of the cancer journey. We are here to help in whatever way feels right. This information will be stored in a confidential area. If you choose to be on our mailing list you will only receive information regarding our programs and services.

Patient Registration Form

Name: ______________________________________________________________________________________

Address: _____________________________________________________________________________________

City, State, Zip: _______________________________________________________________________________

_____________________________________________________________________________________________

_____________________________________________________________________________________________

Phone: ______________________________________________________________________________________

Email: ______________________________________________________________________________________

Diagnosis: ___________________________________________________________________________________

Would you like to be on our mailing list? _____Y _____ N

Would you like to speak with someone about the Looking Forward Program services? _____Y _____ N

Staff Member: ___________________________________________ Date: ___________


Resource Guide – What is Looking Forward?Resource Guide – Patient Information



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Resource Guide – Patient Information

CONFIDENTIAL

Date ___________________________________________________________________________________

Patient Name _____________________________________________________________________________

Primary Care Provider ____________________________________ Telephone_________________________

Oncologist ______________________________________________ Telephone_________________________

Radiation Oncologist _____________________________________ Telephone_________________________

Allergies ___________________________________________________________________________________

Emergency Contact _________________________________________________________________________

___________________________________________________________________________________________

When to Seek Medical Attention

Cancer therapy may cause different side effects, the most serious being an increased risk of infection or bleeding, generally due to lowered blood counts. If you experience any of the following medical problems, seek medical attention.

Urgent: Call Immediately

• Oral temperature greater than 100.5° F, or shaking chills

• New onset of shortness of breath or pain with breathing

• New onset of burning, pain or blood when passing urine

• Persistent nose bleeds, bloody or black stools or increased bruising of skin

May Need Medical Attention: Call Within 24 hours

• Vomiting that does not improve by the following day

• New or increased pain that does not improve with medication

• Painful sores in your mouth following chemotherapy that prevent you from eating or drinking

• Increased phlegm or change in its color, sore throat, or more coughing than is usual for you

• New onset of constipation that does not improve with your usual laxative within 48 hours

• Diarrhea or loose, watery bowel movements lasting more than two days



Hope is like the sun,

which, as we journey

toward it, casts the

shadow of our burden behind us.

Samuel Smiles Scottish author



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Resource Guide – Welcome

Welcome to the Hospital of Saint Raphael. We appreciate the confidence you have placed in us by choosing our services at the Father Michael J. McGivney Center for Cancer Care. We understand that this is a difficult time for you and your family. We hope to help ease your way through this experience by delivering high-quality, expert clinical care while addressing your medical and emotional needs in a respectful, compassionate environment.

Christopher O’Connor

Christopher O’Connor

President and Chief Executive Officer

Hospital of Saint Raphael and Saint Raphael Healthcare System

Joseph G. Cardinale, M.D.

Chairman, Department of Radiation Oncology

Medical Director, Father Michael J. McGivney Center for Cancer Care

Our McGivney Cancer Centers in New Haven and Hamden provide a range of services which will be discussed with you by your physician and support team of medical staff. This informational guide, generously supported by the Looking Forward Program and the Auxiliary of the Hospital of Saint Raphael, will help you understand some of the treatments and services we provide. It was designed to help you navigate the medical system, store medical records, correspondence, questions for your physicians and their answers as well as any other information related to your treatment.

The Looking Forward support, education and wellness program augments the exceptional clinical care of the McGivney Cancer Centers by offering complementary services, including support groups, gentle yoga, massages, educational workshops, pet therapy, counseling services and specialty shops. All of these services are designed to help reduce the emotional challenges you may encounter on your journey as you learn the art of living well with cancer.

We welcome any suggestions you’d like to share about our programs and services and thank you for putting your care and trust in our hands.

Sincerely,

Joseph G. Cardinale, M.D.


Resource Guide – Communication

8 hospital of saint raphael looking forward • 203.789.3488 • srhs.org/cancer

Resource Guide – What is Looking Forward?Resource Guide – Communication

Talking with Your Physician

As a cancer patient, you’ll be given the most sophisticated treatments available by a team of healthcare practitioners. While this is the most effective way to treat cancer, it can be overwhelming for some patients. It is common for someone diagnosed with cancer to see several physicians throughout his or her treatment. It is a good idea to select one physician to act as the “captain” or “gatekeeper” - the physician whom you can turn to for guidance and answers.

Decide how much you want to know.

Some patients want to know everything about their illness and treatments, while others prefer a general overview.

Is it OK to ask questions?

Yes. If any member of your healthcare team uses medical terminology you don’t understand, ask them to explain what they mean.

• Ask about the risks and benefits of any proposed treatment, potential side effects and what can be done to minimize them.

• Ask about your medications and their purpose.

• Ask how treatment will affect your work life and everyday functioning.

• Find out the best time to call with questions and let members of your healthcare team know the best time to call you.

Many patients keep a list of questions that can help them focus their full attention during a doctor visit. Patients often carry a notebook for questions and information. This resource guide can help and you will find a place at the back to file your questions.

How can I keep track of all the information I receive?

It’s a good idea to have a close friend or family member accompany you to doctor’s appointments to help you keep track of what the doctor says. Some patients use tape recorders; others take notes or ask the doctor to write down instructions. This resource guide has a personal journal section where you can record questions, answers and concerns.





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LookingForward is an educational and support program for patients, families and caregivers. We recognize that regardless of your gender, age, race or diagnosis, cancer affects you physically, emotionally and spiritually. The Looking Forward services and programs aim to promote

your physical, emotional and spiritual wellness, thus completing the circle of cancer care provided at the Hospital of Saint Raphael.

What services and programs are offered by Looking Forward?

• Counseling— One-on-one support to help patients adjust to the cancer journey.

• PastoralCare— Provides spiritual support, prayer and guidance.

• SocialServices— Assists with insurance, support and financial needs.

• SupportGroups(ongoing) — Allows individuals to connect with others who face similar challenges.

– General cancer support group

– Breast cancer support group

– Head & Neck cancer support group

– Prostate cancer support group

• ACS(AmericanCancerSociety)ResourceRoom — Informational brochures and books as well as computer access to cancer information.

• NutritionalCounseling– Nutritional counseling, assessment and strategies to promote healthy eating and optimal nutrition.

• MedicalPilates – Combines elements of physical therapy with traditional pilates and stress-reducing mindfulness.

• IndividualWellnessConsultations – One-on-one sessions that explore mind-body wellness issues and solutions for healing.

• GentleYoga – Combines easy, gentle movement with breathing techniques to reduce stress and promote relaxation.

• ChairMassage – An upper body chair massage can help reduce stress, ease pain, and aid healing.

• EnergyBalancing – These sessions involve techniques that may or may not include a light touch on your body, based on your preference, to promote the balance of physical and emotional energy as well as stress and pain reduction.

• RelaxationTraining – Includes techniques like meditation, guided imagery and deep breathing to reduce stress and quiet the constant chaos of our minds.

• PetTherapy – The therapeutic use of pets to reduce stress during the cancer journey.

• Seasons – This quarterly newsletter features articles, tips on healthful living, a calendar of events and news about the latest cancer treatments and services offered at the McGivney Cancer Centers in New Haven and Hamden.

• UZITTherapy – In partnership with the Urbran Zen Integrative Therapy (UZIT) program, patients receive in-room or samll group integrative therapy that may include yoga, breath control, meditation and essential oils.





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Where can I find more information on my cancer and its treatment?

The McGivney Center and the American Cancer Society (ACS) are pleased to present our Resource Room. The Resource Room is designated to provide educational brochures, information and computer access to information about the cancer journey. There are resource rooms at the Main (New Haven) McGivney Cancer Center and in the Hamden campus center.

Looking Forward Specialty Shop

Appearance and body image changes are among the most difficult challenges that cancer patients struggle with. The shop features products and services to help patients cope with the emotional and physical changes that can occur during and after treatment. A unique gift shop is available at both the New Haven and Hamden Father Michael J. McGivney Cancer Centers and each one offers comfort accessories and medically necessary items used during treatment. Just a few of the available items are:

• Hats, scarves, turbans, wigs and other accessories

• Guided imagery, meditation and healing music CDs

• Aromatherapy oils and sprays

• Jewelry — including cancer awareness items

• Inspirational collectibles and much more!

Look Good, Feel Better

Offered in collaboration with the American Cancer Society, this fun workshop features makeovers, tips on using head-wraps, turbans, scarves and wigs. Participants also receive a free make-up kit.

I Can Cope

I Can Cope is an educational program co-sponsored by the American Cancer Society for people facing cancer, either personally or as a friend or family caregiver. Living with cancer can be one of the greatest challenges a person can face in the course of a lifetime. I Can Cope offers help so that you can meet this challenge.

I Can Cope classes help dispel cancer myths by presenting straightforward facts and answers to your cancer-related questions about:

• Diagnosis and treatment

• Side effects of treatment• Emotions and self-esteem• Cancer and intimacy



11hospital of saint raphael looking forward • 203.789.3488 • srhs.org/cancer

• Communication skills• Community resources• Financial concerns• Pain management• Nutrition• Fatigue

Care for the Caregiver: Education and Support for Cancer Family Caregivers

Care for the Caregiver is a cancer caregiver educational and support program that covers a range of information including understanding cancer and its treatment, managing common side effects such as fatigue, meeting the physical and emotional needs of patients with cancer, dealing with changing family roles and improving caregiver’s physical and mental health.

Care for the Caregiver focuses on ways to improve care at home and learn valuable problem solving and communication skills. During the workshops, caregivers are encouraged to share their experiences and learn from each other. With an enhanced understanding of cancer and knowledge of available resources, caregivers are able to provide better care to the patient, themselves and their families.

Knowledge is power and the more you know about what

is happening during cancer diagnosis and treatment

the better equipped you will be to

handle each step of the journey.


Finding your way



Resource Guide – Finding your way

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You have recently been diagnosed with cancer and are about to begin treatment. This is a time of uncertainty and you may have many questions about what to do, where to go and the location of various treatment or diagnostic services. We hope this manual will answer your questions.

The Hospital of Saint Raphael provides diagnostic and treatment services for cancer patients at various locations throughout the hospital campus.

For certain surgical procedures, the hospital has an ambulatory, Same-Day Surgery Center located within the hospital, in addition to our inpatient services. A second center for radiation and some other select treatments is located in Hamden.

Many of our cancer patients receive a variety of outpatient treatment services at the Father Michael J. McGivney Center for Cancer Care at the main campus in New Haven. Information on services and exact locations are found on the following pages.

What is the Father Michael J. McGivney Cancer Center, and where is it located?

The Father Michael J. McGivney Center for Cancer Care — opened in 1994 and funded in part by a major gift from the Knights of Columbus — is an outpatient facility within the Hospital of Saint Raphael’s main campus in New Haven. It provides state-of-the-art outpatient radiation oncology, oncology and hematology cancer treatments. A second center with the same name and the designation “Hamden Campus” is located at 2080 Whitney Avenue in Hamden. It offers radiation oncology. Directions to each center is available online at the Saint Raphael’s website at srhs.org.

Where should I park?

The Cancer Center at the Main Campus in New Haven has a special, secure, free parking lot for patients, offering convenient access to the cancer center lobby. On your first visit, pull into the cancer center entrance at 659 George Street, and check in with our security guard. If you need a wheelchair, our security guard or cancer center volunteers will be happy to assist you. The Hamden Campus at 2080 Whitney Avenue has plenty of free parking adjacent to the facility.

Where do I go when I first arrive?

At the New Haven center, proceed through the double doors at the main entrance of the cancer center and check in at the reception desk. Our receptionists or volunteers will direct you to the appropriate department. They will be happy to answer questions and help you find different departments in the cancer center or hospital.





The main cancer center lobby is beautifully designed with brick walls and stained-glass windows. There is a private, quiet chapel room off the main lobby for solitude and reflection. The Looking Forward Specialty Shop, off the lobby offers hats, wigs, jewelry, CDs and accessories for sale. The Hamden center also has a resource library and its own Looking Forward Specialty Shop off of its lobby.

What if I am unable to drive myself and cannot get a ride?

Although many patients are able to drive themselves to treatment, there are times when you may need assistance. There are several options and cancer center staff can assist you in making necessary arrangements. Cancer patients living on the Shoreline can take advantage of free, round-trip van transportation to Saint Raphael’s Father Michael J. McGivney Center for Cancer Care at the main hospital. This service is currently available to cancer patients living in East Haven, Branford, North Branford, Guilford, Madison, and Clinton. The van makes several trips to these areas weekdays. Driven by a specially-trained driver, patients are picked up and dropped off at their homes. The American Cancer Society offers a volunteer driver program as well. Call (203) 789-3131 to request a ride.

What should I bring on my first visit?

You should bring your health insurance information, Social Security card, driver’s license with photo ID, the name and address of your employer and a list of any medications you currently take. In addition, you may be asked to bring any X-rays, scans and medical records. It is a good idea to prepare a list of questions to ask your doctor during this initial consultation. Please review the “Talking with your Doctor” section in the “Introduction” of this manual.

What if I have more questions or need additional support?

Throughout this manual, you will read about the various components of treatment at the Father Michael J. McGivney Center for Cancer Care. Our staff provides exemplary clinical care and helps with the spiritual, psychological and social aspects of a cancer journey. Our Looking Forward Program provides support, education and wellness services to cancer patients and their loved ones. This program provides a bridge to many services within the cancer center and to community resources. We encourage you to ask questions and express your concerns as you deal with the roller coaster of feelings and thoughts during your treatment.

Where can I learn more about my disease?

The American Cancer Society’s Patient Resource Center, located around the corner past the lobby of the main cancer center In New Haven and just off the lobby (to the left as you enter) in the Hamden center, has a wealth of information, including books, pamphlets and computer access to materials about cancer and related issues. A listing of recommended Hospital of Saint Raphael websites is provided in the Resources section of this manual.





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Directions to the Cancer CenterFrom Hartford (North)

Leave I-91 South at Exit 1 (Downtown New Haven). Continue straight on the exit expressway which merges with Frontage Road. At the seventh traffic light, take a right on Sherman Ave. Take right at first light onto George St. Parking lot entrance is on the left.

From Shore Towns (East)

Leave I-95 South at Exit 47 (Downtown New Haven). Continue straight on the exit expressway which merges with Frontage Road. At the seventh traffic light, take a right on Sherman Ave. Take right at first light onto George St. Parking lot entrance is on the left.

From Waterbury and Upstate New York (Northwest)

Follow Route 69 South to Route 63 South (Whalley Avenue). Continue down Whalley Avenue for about two and a quarter miles and take a right onto Sherman Avenue. Take a left on George Street. Parking lot entrance is on the left.

From Bridgeport and New York City areas (West)

Leave the Wilbur Cross Parkway at Exit 57 (Route 34 East). Continue on Route 34 until you cross Ella Grasso Boulevard. Continue straight ahead onto Derby Avenue. Derby Avenue changes into George Street. Continue on George Street through the intersection with Sherman Avenue. The parking lot entrance is on the left. OR leave I-95 North at Exit 47 (Downtown New Haven). Continue straight on the exit expressway which merges with Frontage Road. At the seventh traffic light, take a right on Sherman Ave. Take right at first light onto George St. Parking lot entrance is on the left.

Parking

Parking for the McGivney Center is free to cancer patients and their families. The McGivney Center’s parking lot, accessible off George Street, is adjacent to the building, just a few steps from our entrance.

Easy access to the McGivney Center is also possible directly from the lobby inside the Hospital of Saint Raphael.

GPS Address: 659 George Street, New Haven, CT





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BUILDINGS & ELEVATORS

Ambulatory/Surgical Facility

Dr. Luca Celentano Building

Father Michael J. McGivney

Center for Cancer Care

George Street Garage

Center for Caring/Main Building

Orchard Medical Center

Sister Louise Anthony Building

Verdi Memorial Building SERVICES

Cafeteria

Cash Machine/ATM

Chapel

Hospital Entrances

Gift Shop

Information Desk (Visitor’s Pass)

Newspapers

Parking

Pharmacy

Restrooms

Telephones/TTYs (Hearing Impaired)

Thrift Shop

Lost and Found x3700

Security Escort x3800

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Treatment



Resource Guide – Treatment

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A new diagnosis of cancer can be a shock, making you feel out of control and overwhelmed. Getting informed can help alleviate these feelings. Remember, very few cancers require emergency treatment; you have time to learn about your diagnosis and treatment options, ask questions and get a second opinion. This section is designed to help you address your initial questions before you move forward with your treatment.

What is cancer?

Cancer is not one disease but many diseases that occur in different areas of the body. Each type of cancer is characterized by the uncontrolled growth of cells. Under normal conditions, cell reproduction is carefully controlled by the body. However, these controls can malfunction, resulting in abnormal cell growth and the development of a lump, mass or tumor. Some cancers involving the blood and blood-forming organs do not form tumors but circulate through other tissues where they grow.

A tumor may be benign (non-cancerous) or malignant (cancerous). Cells from cancerous tumors can spread throughout the body. This process, called metastasis, occurs when cancer cells break away from the original tumor and travel in the circulatory or lymphatic systems until they are lodged in a small capillary network in another area of the body. Common locations of metastasis are the bones, lungs, liver and central nervous system such as the brain or spine.

The type of cancer refers to the organ or area of the body where the cancer first occurred. Cancer that has metastasized to other areas of the body is named for the part of the body where it originated. For example, if breast cancer has spread to the bones, it is called “metastatic breast cancer” not bone cancer.

How did I get cancer?

Although every patient and family member wants to know the answer to this question, the reason people develop cancer is not well understood. There are some known carcinogens (materials that can cause cancer), but many are still undiscovered. We do not know why some people who are exposed to carcinogens get cancer and others do not. The length and amount of exposure are believed to affect the chances of developing a disease. For example, as exposure to cigarette smoking increases, the chance of developing lung cancer also increases. Genetics also plays an important role in whether an individual develops cancer. For example, certain types of breast cancer have a genetic component.

What’s next?

Following your diagnosis of cancer, your reaction may be one of shock and disbelief. If you have been told that chemotherapy or radiation therapy are an important part of your treatment, many unpleasant images may come to mind. But as you move beyond that initial shock to begin the journey of surviving your cancer, you have many good reasons to be optimistic. Medicine has made — and continues to make — great strides in treating cancer and in making cancer treatment more tolerable, both physically and emotionally.

What is cancer and chemotherapy?





No one would call cancer a normal experience, but by proactively managing aspects of your treatment, you can maintain a sense of normalcy in your life. Fighting cancer is not a challenge you face alone. It’s a team effort that involves family, friends and your healthcare team. Don’t overlook the strength that can come from having your support network by your side.

Chemotherapy

Chemotherapy is any treatment involving the use of drugs to kill cancer cells. Cancer chemotherapy may consist of a single drug or combinations of drugs and can be administered through a vein, injected into a body cavity or delivered orally in the form of a pill. Chemotherapy is different from surgery or radiation therapy in that the cancer-fighting drugs circulate in the blood to parts of the body where the cancer may have spread and can kill or eliminate cancers cells at sites great distances from the original cancer. As a result, chemotherapy is considered a systemic treatment.

More than half of all people diagnosed with cancer receive chemotherapy. For millions of people who have cancers that respond well to chemotherapy, this approach helps treat their cancer effectively, enabling them to enjoy full, productive lives. Furthermore, many side effects once associated with chemotherapy are now easily prevented or controlled, allowing many people to work, travel and participate in many of their other normal activities while receiving chemotherapy.

Hormonal Therapy

Hormones are naturally occurring substances in the body that stimulate the growth of hormone sensitive tissues, such as the breast or prostate gland. When cancer arises in breast or prostate tissue, its growth and spread may be caused by the body’s own hormones. Therefore, drugs that block hormone production or change the way hormones work, and/or removal of organs that secrete hormones, such as the ovaries or testicles, are ways of fighting cancer. Hormone therapy, similar to chemotherapy, is a systemic treatment in that it may affect cancer cells throughout the body.

Targeted Therapies

A targeted therapy is one that is designed to treat only the cancer cells and minimize damage to normal, healthy cells. Cancer treatments that “target” cancer cells may offer the advantage of reduced treatment-related side effects and improved outcomes.

Conventional cancer treatments, such as chemotherapy and radiation therapy, cannot distinguish between cancer cells and healthy cells. Consequently, healthy cells are commonly damaged in the process of treating the cancer, which results in side effects. Chemotherapy damages rapidly dividing cells, a hallmark trait of cancer cells. However, normal healthy cells do have the ability to repair themselves. Radiation therapy kills some healthy cells that are in the path of the radiation or near the cancer being treated. Newer radiation therapy techniques can reduce, but not eliminate this damage. Treatment-related damage to healthy cells leads to complications of treatment or side effects. These side effects may be severe, reducing a patient’s quality of life, compromising their ability to receive their full, prescribed treatment and sometimes limiting their chance for an optimal outcome from treatment.

hospital of saint raphael looking forward • 203.789.3488 • srhs.org/cancer hospital of saint raphael looking forward • 203.789.3488 • srhs.org/cancer


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Why do side effects occur?

Side effects occur because most cancer treatments cannot distinguish between cancer cells and normal, healthy cells. For example, chemotherapy damages rapidly dividing cells, a hallmark trait of cancer cells. In the process, healthy cells that are also rapidly dividing, such as blood cells and the cells lining the mouth and GI tract are also damaged.

Why are side effects important?

Side effects of treatment cause inconvenience, discomfort and occasionally even fatality to patients. Additionally and perhaps more importantly, side effects may also prevent doctors from delivering the prescribed dose of therapy at the specific time and schedule of the treatment plan. This is extremely important to understand since the expected outcome from therapy is based on delivering treatment at the dose and schedule of the treatment plan. In other words, side effects not only cause discomfort and unpleasantness, but may also limit a patient’s ability to achieve the best outcome from treatment by preventing the delivery of therapy at its optimal dose and time.

Fortunately, in the last 15 years, there has been a great deal of progress in the development of treatments to help prevent and control the side effects of cancer treatment. These compounds have led to vast improvements in the management of symptoms associated with cancer treatment, allowed for greater accuracy and consistency concerning the administration of cancer treatment and have made many cancer treatments more widely available to patients throughout the world.





What is radiation oncology?

Radiation therapy has been used to treat cancer for more than 100 years and has been shown to be one of the best ways to fight many different kinds of cancer. Many advances have been made to make the treatment safer and more effective. Approximately 50-60% of cancer patients are treated with radiation therapy at some point during their disease.

Radiation therapy is the use of high energy X-rays or particles to treat disease. It is a localized type of treatment, meaning that it is highly concentrated and focused. It affects only the part of the body where you are getting the treatment. With each radiation treatment, cancer cells are destroyed. The radiation may also harm normal cells such as skin cells, cells in the mouth and throughout the gastrointestinal tract, bone marrow and reproductive cells. Normal cells have the ability to repair themselves, whereas cancer cells are deficient in doing so. Radiation therapy treatments are given five days a week, Monday through Friday, with no treatment on weekends or holidays. You may be treated for 2-9 weeks, depending on the type of cancer you have and whether the treatment goal is for cure or comfort.

Advances in radiation oncology

Advances in radiation therapy continue to progress with advances in technology, state-of-the-art equipment and treatment planning. Examples include:

• IMRT(IntensityModulatedRadiationTherapy): High doses of radiation are delivered directly to cancer cells in a targeted way, which is much more precise than the utilization of conventional radiation therapy. IMRT can deliver higher radiation doses directly to cancer cells while sparing more of the surrounding tissue. IMRT uses computer-generated images to plan and then deliver tightly-focused radiation beams to cancerous tumors.

• IGRT(Image-GuidedRadiationTherapy): This treatment offers greater precision for targeting and treating cancer by allowing the patient to be imaged in the treatment position during the actual time of treatment. This will allow the therapist to correct for internal organ movement which can shift the position of the area needing radiation therapy. This results in less radiation to healthy tissues, fewer side effects and possible reduction in the number of radiation treatments needed.

• CyberKnife®Radiosurgery:The concept of radiosurgery is described as the delivery of a high dose of radiation to a small target area anywhere in the body. It allows the delivery of radiation to the abnormal area, while the surrounding normal tissue receives only a small dose of radiation. This treatment may be given in as few as one treatment to a maximum of five treatments depending on the type and location of the tumor treated. Your radiation oncologist and surgeon work collaboratively to provide you with the best



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quality care. Radiosurgery is used to treat benign and malignant tumors with the brain or spine as well as malignant tumors throughout the body such as the lung, liver, kidney and prostate.

• PartialBreastBrachytherapy:It is the delivery of internal radiation therapy to the breast. A select group of women with early-stage breast cancer are eligible. At the time of lumpectomy, a balloon catheter is inserted into the surgical cavity. Treatment planning is done, and then a five-day course of radiation therapy is given. A tiny radioactive seed attached to a wire is inserted into the balloon delivering prescribed levels of radiation under precise computer control to the targeted tissue surrounding the surgical cavity.

Who is in charge of my radiation therapy?

A doctor who specializes in treating cancer with radiation therapy is called a radiation oncologist. Radiation oncologists have completed four years of college, four years of medical school, one year of general medical training, then 3-4 years of residency training in the field. They have extensive expertise in the area of radiation oncology.

Your radiation oncologist will develop and prescribe your treatment plan and oversee your treatment. He or she makes sure your treatment is accurately given and will monitor and treat your side effects during and after radiation therapy. Your radiation oncologist will also monitor your progress and work closely with other physicians and all members of the radiation oncology team.

Who works with the radiation oncologist?

There are many members of the radiation oncology team:

• Radiationphysicists work under the direction of the radiation oncologist and oversee the work of the radiation therapists and dosimetrists. Radiation physicists are responsible for developing and directing quality control programs for equipment and procedures. They ensure that equipment works properly by taking precise measurements of the radiation beam and regularly performing other safety measurements. Radiation physicists have a doctorate or master’s degree and are certified by the American Board of Radiology or the American Board of Medical Physics.

• RadiationTherapists work with the radiation oncologists in treatment planning and delivery. They treat each patient under the radiation oncologist’s prescription and supervision. Radiation therapists are educated for 2-4 years following high school and must be licensed by the State of Connecticut.

• Medicaldosimetrists carefully calculate the dose of radiation to be delivered. They develop treatment plans that target the cancer cells while sparing as many normal cells as possible. They work with the radiation oncologist and medical physicist to choose the most appropriate and beneficial treatment plan.

• RadiationOncologyNursePractitioners are master’s-prepared nurses who care for individuals with cancer from diagnosis, throughout their treatment and in follow-up, as well as those with recurrent or advanced disease. Nurse practitioners function independently and in collaboration with radiation oncology physicians, focusing on health maintenance, health promotion, diagnosis and management of common health and cancer related problems, psychosocial assessment and intervention, patient and family education and symptom management. The nurse practitioner is credentialed through the medical staff office of the Hospital of Saint Raphael and certified by the American Nurse’s Credentialing Center.





• Radiationoncologynurseshelp educate the patient and family about the process of radiation therapy, provide direct patient care and recognize and manage side effects of radiation therapy. They also provide resources for emotional support to patients and their families. Radiation oncology nurses have completed a registered nurse program, passed a written examination and are licensed to practice in the State of Connecticut. Other support staff includes our oncology social worker, oncology dietitian, patient navigator, pastoral care, industrial engineer and clerical staff.

What happens before radiation therapy begins?

After your initial consultation with your radiation oncologist, you may be scheduled for some diagnostic tests such as CT scans, MRI scans or bone scans. These tests are done to determine if the cancer is localized or has started to spread. This is also referred to as the staging workup.

Sometimes cancer specialists such as surgeons, medical oncologists and radiation oncologists will meet at conferences called “tumor boards,” to discuss complex cancer cases. These cancer specialists recommend the treatment program most appropriate for, and beneficial to, the patient.

Once radiation therapy is decided upon, a simulation is scheduled. This maps the delivery of radiation treatment. The simulation usually takes about an hour to complete performing a CT scan, and may include taking measurements and using various contrasts or markers to help the treatment team visualize the area to be treated. You may require a second simulation or film to finalize the treatment plan before your treatment begins. Your radiation oncologist may obtain your previous X-rays to further assist in the treatment planning or obtain new imaging studies to define the treatment area.

Your radiation oncologist and other members of the treatment team use information on the location and size of the tumor, surrounding tissues and organs and your medical condition to develop the safest and most effective treatment plan. Specialized blocks or shields may be used to focus the radiation to the tumor, which spares normal tissue. To set you up the same way each day, you will be given permanent tattoos, usually no larger than a freckle. Temporary magic marker may also be used to mark the treatment area. Your radiation oncologist writes a treatment prescription that outlines the course of treatment and treatment plan. Many patients require another simulation halfway through their treatment,—often called the “conedown simulation”—to make the treatment area smaller.

What happens during the actual external radiation treatment?

After the simulation is completed, you will start your treatment at the discretion of your radiation oncologist. The treatment is painless and similar to having an X-ray. The delivery of radiation takes less than five minutes, but setup takes longer. You will be set up in the same position as you were during the simulation. You should not feel closed in or claustrophobic, and you are certainly not radioactive. The source of radiation delivered is outside of your body.

You will see your radiation oncologist and/or nurse practitioner on a designated day each week. However, you can see him/her as often as needed. There is always a radiation oncologist or nurse available during the day, and there is a radiation oncologist on call 24 hours per day. If you need to speak with a radiation oncologist or nurse practitioner during off-hours, please call 203.789.3131 and follow the pre-recorded instructions.



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X-rays called port films will be taken every five days. These X-rays are not diagnostic, but tell the radiation oncologist and therapist that the treatment field has not changed from the initial simulation. You also will get your blood drawn at the discretion of your radiation oncologist. Your blood will be drawn for the complete blood count (CBC), which looks at white blood and red blood cells, and platelet count.

When will my treatments be scheduled?

Our department opens at 7 a.m. and closes at 4 p.m.; hours sometimes vary. You can anticipate spending no more than 20-30 minutes per day in our department.

What types of side effects will I experience?

Side effects vary greatly and depend on what part of the body is being treated. Radiation side effects usually begin within 2-3 weeks of starting radiation therapy and can last for at least three to six weeks after treatment is completed. These side effects are usually temporary and can be treated by your radiation oncologist, oncology nurse practitioner or radiation oncology nurses. Many patients continue to work and enjoy normal activities during radiation therapy, while others may require more rest and change in daily activities.

One general symptom of radiation therapy is fatigue. The daily routine of coming to radiation can be emotionally and physically tiring, and the therapy itself can make patients feel more tired. Other causes of fatigue include decreased appetite, pain, sleep problems, depression, anxiety, anemia and when receiving chemotherapy or hormonal therapy at the same time as radiation therapy. Many patients complain of having less energy toward the middle of the treatment period. It is important to listen to your body and rest or take a nap during the day. If you have more energy, there are no restrictions or limitations to your activity including exercise.

It is important that you talk to your radiation oncologist, oncology nurse practitioner, radiation nurse and/or therapist about any symptoms you experience. You will be given information and/or medicine to help relieve side effects.

Will I be able to drive to and from my radiation therapy treatments?

Most patients receiving radiation therapy are able to drive to and from their radiation treatment. However, if you are feeling weak or not feeling well, you should have someone come with you. As mentioned earlier, we can assist you and your family with transportation needs. Please talk with any member of our staff for assistance.

Will I be radioactive?

Patients undergoing external beam radiation therapy are not radioactive. Patients undergoing internal radiation therapy or brachytherapy should discuss specific radiation precautions with their radiation oncologist, nurse practitioner or nurse.

Can radiation therapy be combined with other types of cancer treatments?

Yes. Radiation can be used in conjunction with chemotherapy, hormonal therapy and surgery.





Can radiation therapy cause another type of cancer?

The risk of developing a second tumor or cancer because of radiation therapy is extremely low. Patients who have one type of cancer have an increased risk of developing a second cancer regardless of the type of treatment received.

How will I know treatment has worked?

After the radiation therapy treatments are completed, you will return in 3-4 weeks for a follow-up visit. Your radiation oncologist may schedule follow-up tests or blood work at that time or in the near future.

Are radiation treatments safe?

The radiation oncologist customizes each treatment plan to make sure it is safe and effective. The plan is checked and confirmed before every radiation treatment begins and sophisticated, state-of-the-art equipment ensures the proper treatment is given. The entire radiation oncology team is responsible for making certain that daily treatment provides the patient with the best quality care.

In addition, state and federal government regulations and standards ensure the safety of patients treated with radiation therapy. The American Society for Therapeutic Radiology and Oncology (ASTRO), the National Comprehensive Cancer Network (NCCN) and the Nuclear Regulatory Commission (NCR) have guidelines designed to provide the best quality patient care and safety.

Is radiation therapy expensive and will it be covered by my insurance?

Yes, radiation therapy treatments are expensive because of the complex equipment and special skills of the radiation oncology team. Your costs will depend on the type and number of radiation treatments you need. Insurance carriers cover most or all charges incurred by radiation therapy. However, if you need financial assistance or counseling, you can notify one of the members of the radiation oncology team or our oncology social worker.



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Surgery

Surgical Oncology

According to the American Cancer Society, about 60 percent of people with cancer will have some form of surgery in which surgeons attempt to remove as much of the malignant (cancerous) tumor as possible. It’s the oldest form of treating cancer and is often used in combination with radiation therapy or chemotherapy. Once a suspicious lump or lymph node is detected, a biopsy (sample of the tissue is taken and tested) is performed to determine if the tissue is malignant (cancer) or benign (non-cancerous). The tissue is examined for the presence of abnormal cells by a physician called a pathologist. Sometimes, the biopsy indicates the presence of cancer, and you may need further surgery. At times, surgery alone is the treatment of cancer. Many times, cancer treatment combines surgery, chemotherapy and or radiation therapy.

Saint Raphael’s is the area’s leading surgery provider. We are pioneers in minimally invasive and robotic surgical techniques for the treatment of esophageal, lung and prostate cancers. In addition to a host of inpatient surgeries, we also offer a variety of outpatient surgery services - at the hospital in our Ambulatory Surgery Center and in our Cronin Short-Term Surgery Unit at the main hospital.

Ambulatory Surgery

More and more surgery is available on an outpatient or ambulatory basis. Outpatient surgery offers the highest standards of medical care and has many advantages for patients. It’s convenient, less stressful and often more economical than being admitted. Your physician will determine if your surgery requires an overnight stay or if outpatient surgery is right for you.

Our outpatient surgical center is for the patient who arrives the day of surgery and goes home the same day. The Cronin Short-Term Surgery Unit is open 6:00 a.m. to 7:30 p.m., Monday through Friday. The recently renovated 4,500 square-foot unit offers pleasant, comfortable areas where you can wait, relax and recuperate just steps away from sophisticated operating rooms and recovery areas. We also have special rooms designed for younger patients. While you are here, specially trained nurses and other medical professionals will care for you, answer your questions and make sure your day goes smoothly.

CyberKnife® stereotactic radiosurgery system

Saint Raphael’s is the only hospital in the region offering the remarkable CyberKnife stereotactic radiosurgery treatment. Unlike traditional surgery, there is no incision/scarring, pain, anesthesia, and virtually no recovery time. CyberKnife:

• Destroys benign and malignant tumors anywhere in the body with pinpoint accuracy

• Is used for tumors of the brain, spine, neck, lung, liver, prostate, pancreas and more

• Uses multiple beams during a single outpatient session

• Delivers treatment in one to five sessions of one to two hour durations

• Accurately tracks tumors that move with breathing (such as in the lungs) ®Registered trademark of Accuray, Incorporated





Hematology and Oncology

The Robert T. Beeman Hematology Oncology Infusion Therapy Unit (HOIT) is housed in the Father Michael J. McGivney Center for Cancer Care at the main Hospital of Saint Raphael in New Haven. This unit specializes in same-day outpatient chemotherapy, using infusions of all types of chemotherapy drugs (also called agents). Patients may also receive transfusions of packed red blood cells and all other blood products. The unit also provides intravenous fluids to patients who are having trouble drinking enough liquids each day because of radiation therapy or chemotherapy.

The unit is staffed by a medical secretary and registered nurses who have completed the chemotherapy administration course and the Oncology Core Course offered by the Hospital of Saint Raphael. These nurses undergo a yearly chemotherapy administration recertification process, which ensures that they are competent to administer chemotherapy.

All chemotherapy patients receive information sheets on the agents they are going to receive. There are more than 50 agents available for use in cancer treatment and more are being approved all the time. The unit works collaboratively with medical and radiation oncology physicians to coordinate chemotherapy treatments alone or in conjunction with radiation. Side effects can be very different for each drug.



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Inpatient Oncology UnitIn August 2001, Saint Raphael’s opened a newly renovated inpatient oncology unit for patients who require a hospital stay. This 22-bed unit on Verdi 4 West offers sophisticated cancer care, as well as social, emotional and spiritual support services in an environment that supports a positive, patient-centered focus. This state-of-the-art oncology unit allows Saint Raphael’s to provide cutting-edge technologies and therapies to patients, offer educational opportunities to house staff physicians and conduct clinical research.

The unit is staffed by highly trained specialists including physicians, nurses, case managers, pain control experts, social workers, pastoral care staff, dietitians and volunteers. It includes 12 private and isolation rooms to accommodate patients with or at risk for infection. There is also a family waiting area and consultation room with a private bathroom, enabling loved ones to remain close to severely ill patients.

A unique feature of this unit is its nurse call system. Staff members wear sensor tags, so that when a patient calls, the unit clerk who receives the call can locate the nurse or technician, via computer, and forward the call directly.

Who is admitted to the inpatient Medical Oncology unit?

Verdi 4 West is the inpatient unit for cancer patients who need round-the-clock care for a brief period. Some patients receive chemotherapy and other supportive treatments while they are on Verdi 4 West. The professional staff members have received comprehensive cancer-care training through our Oncology Core Course training program. Our nursing staff members have a broad range of skills and are particularly knowledgeable in the administration of chemotherapy. Other team members include social workers, chaplains, dietitians, nurse practitioners, volunteers and physicians from a variety of affiliated specialties.

Can family members and children visit patients on the Oncology unit?

Yes! We encourage family members to be active in the care of our patients. The model of care on Verdi 4 West is holistic -- meaning, we believe in treating the whole person: the body, the mind and the spirit. We are aware that cancer affects the patient and his or her loved ones. Visiting hours are flexible and we have a large family waiting area with a private bathroom to accommodate family members who wish to be close to their loved one.





Clinical Trials

Cancer affects all of us and although it continues to be a scary disease, cancer research now offers hope for better cures. If you or a family member has been diagnosed with cancer, you probably have many questions and want to make sure you are making the best possible decisions for your treatment. In order to make the best treatment decision you need to be fully informed about all of your treatment options. Be sure to ask your physician questions concerning available clinical trials. Choosing whether or not to take part in a clinical trial can be one of the toughest decisions facing a person with cancer.

What is a Clinical Trial?

Clinical trials are people-based studies and are used to learn whether a new treatment is safe and effective in patients and may be a treatment option that you might want to consider. Such studies are very important to the development of new treatments for diseases such as cancer.

Today’s effective standard of care for patients was once the experimental treatment of a clinical trial in the past. Patients in clinical trials, as a rule, receive excellent care and may be helped personally by the treatment they receive, although there are no guarantees. Study patients receive up-to-date care from cancer experts and either a new treatment being tested or the best available standard treatment for their type of cancer. Choosing to participate in a clinical trial is a very important personal decision.

You can find more information about clinical trials by visiting our website at srhs.org/clinical trials. It is important that you get as much information as you can before deciding whether or not to participate in a clinical trial. Be familiar with your options and ask as many questions as you need to make sure you are comfortable with your decision. The following standard questions will get you started.

Questions to Ask About Clinical Trials:

• Why is the study being done?

• What is likely to happen if I decide to participate/not to participate?

• What are other options (standard treatments, other studies)?

• What are their advantages and disadvantages?

• What were the results of any previous studies of this treatment?



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• What kinds of tests and treatments does the study involve? How often are they done?

• Will this require an extra time commitment on my part?

• Will I continue to be under the care of my doctor, or will I be seeing a different one (or both)?

• How could the study affect my daily life?

• Will I still be able to work/go to school?

• What side effects might I expect from the study treatment? (Remember that there can also be side effects from standard treatments and from the disease itself.)

• Will I have to be hospitalized? If so, how often and for how long?

There may be many reasons not to participate in clinical trials, but there are also plenty of reasons to seek them out. You will have the opportunity to get a new treatment -- years before it’s available to the general public. While it clearly won’t be a proven treatment, it will be one that knowledgeable physicians regard as promising. While you’re in the clinical trial, you’ll most likely benefit from an especially high level of medical care. And if the treatment does not help you personally, it will help other people with cancer down the road.

We don’t urge everyone with cancer to participate in clinical trials. Many of the reasons not to participate are valid, and the decision to participate in a clinical trial is a very personal one. If you have cancer, you must make that decision yourself. It is the opinion of many medical professionals, that if you have cancer, you should at least consider the available clinical trials, along with all of your other treatment options. If you are not evaluating potential experimental treatments alongside the standard treatment protocols, you’re simply making a decision without access to all the facts. Although a poor prognosis increases the chance that you’ll want to consider clinical trials, it doesn’t necessarily follow that you should ignore this option if your prognosis is good.

Are clinical trials paid for by insurance companies?

Generally patients do not pay out-of-pocket for participating in a clinical trial. Connecticut (2001) Senate Bill 324, Public Act 01-171 mandates that routine patient care costs associated with cancer clinical trials are typically paid for by private insurers, individual and group health plans in Connecticut. Before making your decision, you should call your insurance company and learn what its coverage would be for a specific clinical trial.

Other Key Criteria: Preventions clinical trials are covered only in Phase III and only if they involve a therapeutic intervention. The insurer may require documentation of the likelihood of therapeutic benefit, informed consent, protocol information and/or summary of costs.





Clinical Trial Phases.

Clinical trials are usually categorized into four phases:

PhaseI. The Initial introduction of an investigational new drug into humans. May be conducted in patients or normal subjects. Generally 15 to 30 participants.

PhaseII.Conducted to evaluate the effectiveness of the new drug for a particular indication and determine common short-term side effects and risks. Generally less than 100 participants.

PhaseIII. Performed after preliminary evidence suggests effectiveness of the drug and also to gather additional information about the drug’s effectiveness and safety. Usually includes hundreds to thousands of participants.

PhaseIV. Performed to obtain long-term additional information about the drug’s risks, benefits, and optimal use. Usually several hundred to several thousand of participants. Participant rights and safety are protected through: informed consent, scientific review, institutional review boards, data safety and monitoring boards.

InformedConsentForm. An Informed Consent Form is a document that is the basis for explaining to potential clinical trial subjects the risks and potential benefits of a study and the rights and responsibilities of the parties involved. Informed consent is an ongoing process that provides the subject with explanations that help the potential participant make educated decisions about whether or not to enroll in a clinical trial.

InstitutionalReviewBoard(IRB). A group of people consisting of both scientific and non-scientific individuals. The responsibility of this group is to ensure the protection of the rights, safety and well being of human subjects involved in a trial, by reviewing, approving and providing continuing review of the trial.

PrincipalInvestigator. Each study has a principal investigator. This physician is the keeper and the watchdog for the trial. He or she makes sure that the protocol is followed exactly.

Protocol. Every clinical trial is outlined in a document called a protocol. The protocol is like a blueprint or a recipe. This document explains exactly what the study will do, how many people will be enrolled, who is eligible to participate, what tests will be done, what study drugs will be given and on and on. Each protocol has specific objectives in mind. The reason why we can’t waiver even a little from the protocol is because all patients must be treated exactly the same way. When the findings are measured statistically at the end of the trial, the outcomes will be scientifically valid because all the patients were treated exactly the same way.

Glossary



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Attention to eating habits and food choices is very important throughout all phases of our lives. From infancy to adulthood, nutrition needs undergo remarkable changes. Diagnosis, treatments and prevention of recurrence of various illnesses and diseases can cause additional alterations in nutritional requirements. This is particularly true with cancer. Although weight loss is a goal for many people, it is not an appropriate one while undergoing cancer treatment. However, after completing treatment, achieving and maintaining a more desirable weight becomes very important for cancer survivors. Many studies have documented a link between obesity and the increase of many types of cancer recurrence. Nutrition assessment and counseling is strongly recommended and will help you to become more confident with your nutrition as a cancer survivor.For help with any nutrition questions or to make an appointment with our dietitian, pleae call 203.789.5178.

Eating well during treatment can help you:

• Feel better

• Keep up your strength and energy

• Keep up your weight and body’s store of nutrients

• Tolerate treatment-related side effects

• Decrease risk of infection

• Heal and recover quickly

Common nutritional challenges when undergoing cancer treatment:

• Undesired weight changes

• Changes in taste, smell and appetite

• Gastrointestinal problems such as nausea, vomiting, indigestion, diarrhea and constipation

• Fatigue

• Dehydration

• Sore or irritated mouth or throat

• Dry mouth

• Swallowing difficulties

Necessary Nutrition





Solutions and strategies

Don’t be too hard on yourself if side effects make it hard to eat. Try some of these suggestions:

• Eat small, frequent, balanced snacks throughout the day

• Keep healthful snacks close by for nibbling when you get the urge

• Identify foods that soothe

• Plan for “off days”

• Avoid alcohol use during treatment

Vitamins, supplements and herbal products

Along with efforts at improving health and fighting cancer, it’s natural for some people to look beyond the more traditional treatment modes. This is especially true with nutrition. Unfortunately, many nutritional products promise energy and health, but really don’t deliver. Of even greater concern is that some of these products might actually cause harm or interfere with a necessary treatment or medication. Isolating specific nutrients and taking large doses can actually cause these nutrients to become medications and not necessarily desirable ones. Our nutritionist can assess the safety and potential benefits, if any, of products like these. Mostly, our goal at the cancer center is for our patients to acquire nutrients as naturally as possible, preferably from whole and natural foods.

Once you complete your cancer treatment and begin to feel better, it’s important to develop a healthful nutrition regimen. This could include weight loss, experimenting with vegetarian meals, consuming more whole grains or a host of other choices when it comes to food and eating. With a better understanding of the dynamics of nutrition and your own personal nutrition needs, you are bound to feel more positive. You will also develop a philosophy about your own health and respect for the role of good nutrition.



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Managing Cancer Pain

It is important to understand that not everyone with cancer experiences pain. However, managing pain is an important part of care at the Hospital of Saint Raphael. Pain can occur when a tumor presses on bone, nerves or internal organs. Some cancer treatments can cause pain as well. If you experience discomfort, please seek help from your doctor or nurse. Treating mild pain is easier than managing severe pain. Pain control is an essential part of your cancer treatment because you will feel stronger, enjoy life more and be better able to cope with the disease.

If I begin to feel discomfort, what should I do?

If you develop pain or other distressing symptoms, tell your doctor or nurse right away. Your doctor wants and needs to know if you are having pain and will prescribe medication to help control it. Maintaining a pain journal -- where you record the intensity of your pain using a 1-10 rating scale and noting your activity level -- can help you understand pain patterns. In describing your pain, be as specific as you can: where you feel the pain, what it feels like, what makes it feel better or worse and how it interferes with your daily activities. This can also be useful information for your doctors when prescribing pain medication. There is a pain journal provided at the end of this section.

How can you help control your pain?

Ask your doctor or nurse what to expect. Being prepared helps put you in control. Try using relaxation exercises at the same time you take medicine for pain. This may help ease tension, reduce anxiety and manage pain.

What medicine will I receive to control my pain?

The type of pain you experience determines the type of medication you receive. Some patients get relief with over-the-counter medicines like Tylenol®, while others need prescription medications. Most pain medications are taken orally, but can also be received through skin patches or injection.

Will I become addicted to a strong prescription medication?

Research among cancer patients shows it is extremely rare to become addicted to pain medication. It is very important to take your pain medication as it is prescribed for you. If you have concerns regarding addiction to these types of medications, please speak with your doctor or nurse.

Palliative Care





Will I look like a complainer if I mention my pain?

Do not hesitate to speak to your doctor or nurse about your pain. Proper pain control can help you rest, exercise and sleep better, enjoy greater comfort while you heal and reduce anxiety.

According to the American Cancer Society, you as a person with cancer have the right:

• To have your pain believed

• To have your pain controlled

• To be treated with respect

• To have pain prevented or minimized when undergoing treatments or procedures

What else can I do?

There are several complementary therapies that may help control discomfort. Our Looking Forward Program offers several options — gentle yoga, energy balancing and meditation among them. They can also enhance the pain relief from prescribed medication. Contact our Looking Forward Program at 203.789.3488 to schedule a consultation and learn more about non-medication pain control methods.

Sources for the information contained in Managing Cancer Pain are the Hospital of Saint Raphael’s “A Patient Guide to Pain Management,” the American Cancer Society’s “Pain Control” and multiple articles available on the National Cancer Institute’s website (cancer.gov) and the U.S Department of Health and Human Services’ website (HHS.gov).



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No pain Worst pain imaginable

U.S. Department of Health and Human Services, National Institute of Health 6/2000

Pain ControlA guide for people with cancer and their families

1 3 5 7 9

Doctor’s Name

Address

Phone

Nurse’s Name

Address

Phone

Pharmacist’s Name

Address

Phone

Other

Address

Phone

Questions to ask

Date Time Pain Rating Pain medication Other pain-relief Side effects from (0-10) (name, dose, how often taken) methods tried pain medication see scale

June 6 8 a.m. 6 Morphine 30 mg every 4 hours massage constipation(Example)

Affiliated clinical

specialties




Resource Guide – Affiliated Clinical Specialties

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Neuro-oncology

The McGivney Center offers a comprehensive neuro-oncology program using the latest technologies in radiation therapy, chemotherapy and neurosurgery for the treatment of benign and malignant tumors of the brain and spinal cord. Our multidisciplinary team includes specialists in neurology, neurosurgery, neuroradiology, nuclear medicine, medical oncology, medical physics, radiation oncology, pathology and psychiatry.

Thoracic Oncology

The McGivney Center offers a comprehensive thoracic-oncology program utilizing state of the art technologies in radiation therapy and surgical techniques as well as novel chemotherapy approaches. We also offer CyberKnife® radiosurgery for the treatment of early stage lung cancers or recurrent lung tumors. Our multidisciplinary team includes specialists in thoracic surgery, medical oncology, radiation oncology,

radiology, pulmonary and pathology.

Gastrointestinal (GI) Oncology

The McGivney Center offers a comprehensive GI oncology program utilizing state-of-the-art technologies in radiation therapy and surgical techniques as well as novel chemotherapy for tumors of the colon, rectum, liver and pancreas. We also offer CyberKnife® radiosurgery for the treatment of liver and pancreatic tumors. Our multidisciplinary team includes specialists in gastroenterology, GI surgeons, liver surgeons, radiation oncology, medical oncology, radiology and pathology. We also offer colorectal genetic testing to patients and their family members.

Urology (GU) Oncology

The McGivney Center offers a comprehensive urology oncology program utilizing state-of-the-art technologies in surgery and radiation therapy as well as novel chemotherapy approaches. We also offer the daVinci® robotic surgery as well as CyberKnife® radiosurgery for the treatment of urologic cancers such as prostate and kidney cancer. We also offer a monthly Prostate Cancer Support Group for men with prostate cancer and their caregivers.

Freedom From Smoking

Freedom From Smoking, an eight-week program, was developed in 1975 by the American Lung Association (ALA) in collaboration with The American Thoracic Society and the Congress of Lung Association staff. It is a highly structured program that offers a systematic approach to quitting smoking. There is a logical progression from awareness of the smoking habit to actual behavior change. Everyone goes through the same stages at the same time. The focus is on behavior change. This program will not make people quit smoking but will offer them tools, techniques and support. It helps participants become aware of their smoking habit, build confidence, manage stress, develop relaxation techniques and incorporate long- and short-term coping strategies. For more information, visit srhs.org/stopsmoking classes.





Women’s Center for Breast Health

Our Women’s Center for Breast Health (WCBH) is accredited by the National Accreditation Program for Breast Centers (NAPBC). The McGivney Center offers a comprehensive breast cancer program utilizing state-of-the-art technologies in radiation therapy, surgical techniques as well as novel chemotherapy. We also offer Mammosite® brachytherapy and partial breast irradiation. Our multidisciplinary team includes breast surgeons, radiation oncologists, medical oncologists, plastic surgeons, breast radiologists, and breast pathologists. Our breast imaging has been designated a Breast Imaging Center of Excellence by the American College of Radiology (ACR). We also offer breast cancer (BRCA) genetic testing for patients and their families as well as a patient navigator to guide you through the breast cancer journey. For information about WCBH, call 1.888.577.WCBH (9224) or visit srhs.org/breastcenter.

WCBH Patient Navigator

Our Patient Navigator provides personalized assistance to patients, survivors, and families. The navigator guides you from the time of an abnormal mammogram through the maze of appointments with doctors, clinics and outpatient facilities to ensure timely diagnosis and treatment. Whether it is providing emotional support, answering your questions or expediting tests and getting results, our Patient Navigator is your confidential, respectful, compassionate guide on the road to recovery.

WCBH Educator

The Women’s Center for Breast Health (WCBH) has an educator who is on a mission to help women in the surrounding community take advantage of informational seminars, screenings and counseling to learn more about breast cancer, its symptoms, diagnosis and treatment. By conducting internal and outreach activities, our educator helps raise breast cancer awareness and locates women at risk, encouraging them to take advantage of available resources to get screened. Our goal is to detect cancer early when treatment can be most effective in saving women’s lives.

High-Risk Breast Health Program

You’re a woman over 40 and your mother and maternal aunt have had breast cancer. Even though you have no pain, no lumps, and no symptoms of breast irregularity, you’re guessing that your family history and your age put you at higher risk. And you’re right. The WCBH High-Risk Program at the Hospital of Saint Raphael can help put your mind at ease. Through initial counseling, diagnostic testing and education, you can learn about your risk factors which may include genetics (such as your mother, sister, daughter, grandmother or other female family members who have had breast or ovarian cancer), a past abnormal biopsy (showing LCIS or DCIS, often pre-cancerous conditions), your BMI (body mass index) and the possibility of dense breast tissue that could potentially yield a false negative on a mammogram.



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Our team of breast health specialists including breast surgeons, radiologists, oncologists, breast cancer navigator, the WCBH educator, advanced practice registered nurses and medical assistants delivers a plan of coordinated care to provide the support you need.

For more about the WCBH and its services visit: www.srhs.org/breastcenter. To schedule an appointment, call 1.888.577.9224 or email [email protected].

Occupational Therapy

Occupational therapy helps you resume activities of daily living, both at work and at home. Using a holistic approach, occupational therapy can help you make changes in your life, whether they be physical, mental, emotional or spiritual. It can also help you learn to adapt to unexpected transitions as you handle the many levels of change that cancer brings into your life.

Physical Therapy

Physical therapy helps strengthen your muscles, keep your joints flexible and helps you stay as independent as possible. Our physical therapists work with patients to help them recover as much physical functioning as possible during and after cancer treatment.

Your physical therapy program will be customized to meet your needs. Using state-of-the-art rehabilitation equipment along with hands-on assistance, our professional staff will help maximize your physical functioning.

We offer a lymphedema treatment program to address the ongoing swelling of arms, legs or lymph nodes that can occur as a result of cancer treatment. Your physical therapist will use range-of-motion exercises, compression and manual lymph drainage or massage to reduce symptoms.

Psychiatry

Complex emotions can often accompany a cancer diagnosis. Since anxiety and depressive symptoms can interfere with the ability to tolerate treatment and quality of life, obtaining assistance in coping is important. Psychiatry staff is available for consultations and follow-up for in-patients who have significant levels of distress.

To meet each patient’s unique needs, Psychiatric Services can provide treatment in collaboration with the other members of the Psychological and Emotional Services treatment team in the cancer center. Clinicians can also make referrals to our psychiatric and mental health services as well as our oncology social worker for outpatients.

Radiology

As part of diagnosis and treatment, many patients undergo X-rays or other procedures. These diagnostic procedures include CT (computerized tomography) scans, PET (Positron Emission Tomography), PET–CT scans, MRI (Magnetic Resonance Imaging) scans, bone scans, nuclear medicine and digital mammography. Radiologists maintain close working relationships with physicians from all other disciplines, regularly participating in patient conferences.





Genetic testing servicesCancer is caused by multiple factors including genetics, environmental, medical and lifestyle factors which interact to produce a given malignancy. Knowledge of cancer genetics is rapidly improving our understanding of cancer biology, which has helped us to identify patients at risk and provide appropriate surveillance, early detection and treatment as needed.

Genetic information provides a means to identify people who have an increased risk of the development of cancer. Sources of genetic information include biologic samples of DNA, which is from a blood sample, as well as information derived from a person’s family history of cancer, ages at which people were diagnosed, findings from physical examinations and medical records. DNA-based information can be gathered, stored and analyzed at any time during an individual’s life span, from before conception to after death. Family history may identify people with an increased risk of cancer or may serve as the first step in the identification of an inherited cancer predisposition that may determine someone’s increased risk of cancer development. For an increasing number of diseases, DNA-based testing can be used to identify a specific mutation as the cause of inherited risk and to determine whether family members have inherited the disease-related mutation.

Genetic cancers are responsible for up to 5-10% of all cancer diagnosed. Historically, people who carry a genetic mutation are predisposed to the development of cancer at an earlier age as well as more than one generation being affected with the same types of cancer. Most genetically linked cancers are those of autosomal dominant inheritance pattern, which means that a single, altered gene is passed down and inherited from generation to generation. Either parent can transmit a damaged gene to their children, or a child needs only one copy of a damaged gene to be at risk for cancer. An individual with an altered or mutated gene has a 50 percent chance of passing it on to their children.

Features of hereditary cancer include the following:

The hallmarks or red flags of hereditary breast/ovarian cancers include:

• Early age of onset/diagnosis, less than 50 years old

• Bilateral (both sides) breast cancer

• Ovarian cancer at any age

• Breast and ovarian cancer in the same individual

• A woman diagnosed with triple-negative breast cancer

• Male breast cancer

• Ashkenazi Jewish ancestry

• Known BRCA1 or BRCA2 mutation in the family



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The hallmarks or red flags of hereditary colorectal cancers include:

• Early age of onset/diagnosis, less than age 50

• Endometrial cancer before age 50

• Milutiple colon cancers in an individual

• Colorectal adenomas before age 40

• Relatives of an individual with a known MLH1 or MSH2 mutation

• Individuals with > 10 cumulative colon adenomas

• Individuals with > 100 cumulative colon adenomas

• Relatives of an individual with a known APC or MYH mutation

The hallmarks or red flags for malignant melanoma:

• Melanoma patients with relative(s) who have been diagnosed with melanoma

• Individuals diagnosed with multiple primary melanomas

• Melanoma and pancreatic cancer diagnosed in the same individual or family

• Patients with dysplastic nevi with family history of melanoma

Benefits of genetic testing include:

• Personalized cancer risk assessment – in other words, knowing whether you’re at risk!

• Medical management, if needed, to help reduce risk of a cancer event occurring

• Information for other family members about their risk of developing cancer

• More proactive approach

• May reduce anxiety and stress

Among the disadvantages of genetic testing is that it:

• Does not detect all causes of hereditary cancers

• Some genetic variants are of unknown clinical significance

• May increase anxiety and stress

Other issues that arise with genetic testing include insurance coverage and healthcare discrimination. Most insurance companies will cover the cost of genetic testing if one’s personal and family history indicates the medical necessity. Also, patients are protected under HIPPA and cannot be discriminated against because of a positive result.

Genetic testing is not appropriate for everyone but is tailored to the specifics of your own personal and family history. For more information, contact the Genetic Testing Coordinator at 203.789.3131.



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Home care servicesSometimes cancer patients require additional help at home with personal tasks and managing the side effects of their illness. Homecare health agencies provide such assistance. These agencies range from visiting nurses to home hospice care.

What is a Visiting Nurse Service?

Nurses, home health aides, homemakers, occupational, speech and physical therapists, medical social workers, a wound care specialist, a tele-monitoring nurse specialist and a registered dietitian work within an interdisciplinary team to provide the highest quality of care to patients in their homes. Founded in 1921, VNA Services, Inc. provides home healthcare services to area residents of Greater New Haven, lower Middlesex County and the Shoreline. For more information about VNA Services, Inc., visit thevna.com .

What is hospice?

Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Hospice stresses quality of life, comfort and dignity. A principal aim of hospice is to control pain and other symptoms so the patient can remain as alert and comfortable as possible. Anyone with a life-limiting illness is eligible for hospice care. Patients’ families are also an important focus of hospice care and services are designed to provide them with the assistance and support they need. The Connecticut Hospice offers two levels of hospice care—one for those receiving treatment (CanSupport) and another for those who have chosen to end aggressive treatment of their disease (Hospice).

CanSupport

For those people who desire control of symptoms while pursuing aggressive cancer treatment, The Connecticut Hospice provides appropriate medical, nursing and alternative interventions to decrease symptoms and discomfort through its CanSupport program.

Hospice

Choosing Hospice care is a highly personal decision and should be discussed with your healthcare team, family and friends. When you or a loved one would like to move from an aggressive treatment plan to a goal of comfort and symptom relief, the actual hospice care can be initiated. However, some patients present late in the disease process and beneficial treatments outside of relieving the symptoms (known as “palliation”) may not be available. Hospice may be introduced at this time. You should understand that embracing hospice does not mean that the doctor has “given up” on you or a loved one. It simply means that the goals of care have changed from therapy to palliation of symptoms. The physician still has an active role in the hospice process and should be as involved in patient care as he or she was during the treatment phase.


Support



Resource Guide – Support

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For most people, a cancer diagnosis means learning to adjust to, and cope with, many changes beyond physical symptoms. These changes can include concerns about finances, insurance or employment. Changes in physical appearance and functioning can also occur, each presenting an ongoing challenge to effective coping. Helping yourself and your family understand the complex physical, emotional, mental or spiritual challenges associated with a cancer diagnosis is essential.

When you need support in any aspect of dealing with cancer, the Looking Forward Program can help through individual and family counseling, patient advocacy, long-term planning, support groups and links to community resources. It may be difficult to ask for, and accept help for personal issues. But seeking assistance can help you regain a sense of control, which improves your coping and contributes to your well-being. In this section, there is a questionnaire to help identify your emotions. For further assistance, contact our Oncology Social Worker at 203.789.3946.

Cancer Patient Navigator

The Cancer Patient Navigator at Saint Raphael’s Father Michael J. McGivney Center for Cancer Care is your personal guide for accessing cancer services. The navigator will help you find your way through the complex process of tests, diagnosis and cancer treatment.

As a cancer patient, you will receive:

• Personalized attention to get your questions answered and your appointments scheduled

• Counseling & compassionate support every step of the way

• Enhanced communication with your healthcare team (oncologists, radiologists, nurses and more)

• Assistance in identifying local resources

When should you consult with a counselor?

It is best not to wait for a crisis to occur. If you have questions or concerns related to your illness, or are having a difficult time adjusting to or managing the changes and related stress, counselors can help. They can help you find information; work with you to manage feelings of anxiety or stress and aid in dealing with any practical concerns.





What about emotional support?

Many patients have difficulty coping with a cancer diagnosis. They may have trouble sleeping or concentrating. They may not know how to communicate with loved ones, friends and co-workers about their concerns. Consulting with a counselor or social worker is a good first step in finding

solutions to your concerns. In individual or family counseling sessions, we can show you how to communicate more openly, so you and your loved ones can talk together about your concerns. We can also help you provide information to children or grandchildren so they can better understand the changes you’re going through. We can connect you with community resources and provide information about the many support groups available through the Looking Forward Program.

How can a support group help?

Meeting with others who have cancer, and are dealing with similar challenges, can be very helpful.

Hearing others’ stories and sharing common concerns can help ease anxiety, frustration, fear or other feelings. Research has shown that support groups are an effective tool for linking with others establishing a safe space to share your concerns and learning the art of living with cancer. The Looking Forward Program offers several ongoing support groups facilitated by counselors, nurses and social workers. For information, call 203.789.3488 or visit www.srhs.org/cancer

Cancer Survivorship Program

Once cancer treatment has been completed and healing and recovery is underway, a patient may be left with that uneasy feeling of “What happens next?”

That’s where the Cancer Survivorship Program comes in. Designed to prevent, detect and manage complications from cancer and its treatment, the program focuses on your physical and emotional well-being as you journey to wellness.

Survivorship Program services are provided by an oncology nurse practitioner as well as an oncology social worker, nutritionist and patient navigator. Services include:• Reviewing your medical history and a physical examination

• Assessing cancer recurrence

• Identifying and managing symptoms related to cancer and/or its treatment

• Cancer screening recommendations

• A health promotion plan including nutrition, exercise, support groups and smoking cessation

Treatment summary and follow-up care plan that includes your primary care physician





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As a caregiver of a person with cancer, you are a vital member of the health care team. Family members and supportive friends assume very important roles in caring for patients struggling with the emotional and physical consequences of their diagnosis and treatment. For most caregivers this is uncharted territory, and they feel ill-prepared for the demanding duties they are to assume.

It is widely acknowledged that cancer is a family illness. The shock wave of the cancer diagnosis reverberates throughout the entire family, affecting everyone in some way. When a crisis strikes one member of the family, the balance of the family structure is disrupted. There may be role changes, financial pressures, fragmented communication, a rollercoaster of emotions, information overload, physical demands and increased stress. With illness, established patterns of family functioning and communication may change, creating additional pressures. However, we also know that this time can be a rewarding and satisfying process, when caregivers meet the many challenges presented to them by a loved one’s illness.

Optimal functioning of the caregiver is important to the overall well-being of the patient. The staff of the Father Michael J. McGivney Center for Cancer Care assists caregivers by providing them with education, information, referrals, support and guidance as they face the challenges of a family illness. The physicians, nurses, social worker and other members of the health care team acknowledge your importance in the care of the patient and are available to assist you. Please make us aware of your needs so that we may help you successfully navigate the illness experience with your loved one.

Individual and family counseling is available with our oncology social worker.

Where can I find support?

The Looking Forward program offers a General Cancer Support group for patients and family members. Both the patient and caregiver can attend.

The Looking Forward program also offers an educational and support program for caregivers, “Care for the Caregiver.” For more information, call 203.789.3131.

Are there services to help me take care of my loved one?

Yes. There are a range of home healthcare services available through visiting nurse associations and other home-care agencies. Ask your doctor or nurse for more information.

What happens if I can no longer care for my loved one at home?

Depending on an individual’s needs at any given time, hospice and palliative care services are provided in the home, in a skilled nursing facility, in a hospital or at a Hospice facility. Hospice programs provide a special form of support and care for terminally ill patients and their loved ones. At the center of the hospice philosophy is respect for the decisions of each patient and their loved ones, emphasizing control of pain. Hospice is not about dying; hospice is living every moment fully. Within these settings, patients receive continuous care. If a patient should return home, hospice or palliative care, through Hospice’s CanSupport Program care would continue at the patient’s home.

Caregiving





Caregiver Stress

Too much stress can be damaging to you and to your loved one. The following stress indicators, experienced on a regular basis, can lead to more serious health problems. Taking care of oneself is crucial in being an effective caregiver.

Signs of Caregiver Stress

Denial about the disease and its effect on the person who’s been diagnosed.

Anger at the person with the illness or others.

Anger that people don’t understand what’s going on.

Social withdrawal from friends and activities that once brought pleasure.

Anxiety about facing another day and what the future holds.

Depression begins to break your spirit and affects your ability to cope.

Exhaustion makes it nearly impossible to complete necessary tasks.

Sleeplessness caused by a never-ending list of concerns or worries.

Irritability leads to moodiness and triggers negative responses and reactions.

Lack of concentration makes it difficult to perform familiar tasks.

Health problems begin to take their toll, both mentally and physically.

If you frequently experience these stress symptoms, consult a physician or a member of our psychological and emotional support services team at 203.789.3946.

© 1995 Alzheimer’s Disease and Related Disorders Association, Inc.





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“Cancer is a life changing experience, whether it is you or a loved one facing the disease. Such a crisis naturally raises questions about the meaning of life and death and about the relationship of illness, health, and wellness. These questions are part of the need that every human person has to find meaning and purpose in life. Some of us seek these answers within a specific religious tradition and a relationship with God or a “Higher Power.” Others feel a spiritual connection to what we value most through art, music, poetry, nature, or very often through our own life experiences, especially in close and intimate personal relationships.

No matter the path we choose, we all have a spiritual side as part of being human. All of us live spiritually, either consciously or unconsciously. Our spirituality can be an important resource in coping with cancer and in living “in wellness” even when we don’t have physical health. Having a sense of meaning and connection beyond ourselves can help us or our loved one experience a better quality of life.”

Rev. Maureen Gilmore-Heber, Oncology Chaplain

The journey with cancer and striving for wellness can raise the following and many other spiritually-based questions:

• Is it God’s will that I have cancer?

• Am I supposed to be learning a lesson through this journey with illness?

• Does everything really happen for a reason?

• Is my cancer a punishment for something I did wrong?

• Why me? (or why my loved one?)

• Is it OK for me to be angry with God?

• I want to pray but can’t or don’t know how.

• If I want to talk to someone about spiritual concerns, who can I call?

Such questions are a normal part of being diagnosed and living with cancer, but each of us may ask or answer them in our own unique ways.

Chaplains of all faiths from our Department of Pastoral Care are available on site 24 hours a day, seven days a week, to help you approach such spiritual issues and concerns. As spiritual caregivers, we trust that God welcomes the honest and innermost questions and struggles of our hearts. We also affirm the preciousness of every human being in God’s eyes and trust that God desires for us — not that we suffer — but rather that we know love, healing, and wholeness, in this life and the next.

Reflections on cancer, spirituality and wellness





Available resourcesBelieving that information is empowering and can help guide a patient’s decision making, staff with the Looking Forward Program work collaboratively with the staff of the Cancer Center, SRHS Healthcare Library, Volunteer Services department and patients to design a resource area that is accessible, user friendly and diverse in its content.

In the American Cancer Society’s Resource area, you can research the latest developments in cancer treatment by accessing online databases, reviewing information from the American Cancer Society’s database, searching for information on clinical trials or investigating just about any cancer-related topic you choose. Our trained volunteers are available to assist you.

In the American Cancer Society’s Resource Area you will find:

• Pamphlets on specific types of cancer, treatments, complementary therapies, spirituality, support issues and other topics.

• Audiovisuals: Several CD’s are available for borrowing.

• Computer databases containing magazine and research articles are available online. Cancer Center volunteers and staff can complete your research in a few days; information is available for pickup in the Cancer Center or by mail.

• Pamphlets from the National Cancer Institute, American Cancer Society and other agencies provide basic information on a variety of cancer-related topics.

Resource area patrons will be asked to complete a registration form and will be allowed to borrow products for two weeks. We welcome any suggestions for additional books or audiovisuals that may be purchased as well as any donations of materials that others may find helpful.

Using the Internet

Technology has given us immediate access to more than 10,000 health-related websites. At the click of a mouse, people can find information on almost any subject - an explosion of information available at your fingertips. While the Internet can be a useful source of information, healthcare experts warn there are risks associated with sources lacking credibility or expertise. Much of the information on the Web is posted by reliable organizations and agencies and is trustworthy, but some is unreliable, misleading and inaccurate. As with anything, guidelines to evaluate the credibility and accuracy of the information are important.





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Helpful Tips for Getting Started

Find out who sponsors the site

According to the Medical Library Association, credible sources include medical associations, hospitals, medical centers and medical schools.

Check to see how often the site is updated - reliable Internet sites are updated regularly.

Is the information fact or opinion?

If opinions are offered, ask who the source is. Is it a qualified professional?

Before following medical advice on a Web page, discuss the information with your physician.

What do the endings on website addresses mean?

“.gov” – sponsored by the federal government

“.edu” – university-based sites

“.org” – nonprofit organizations

“.com” – used by commercial sites

“.net” – an additional designation for commercial sites

Where do I begin to look for information?

When doing a health-related search on the World Wide Web, you can use a search engine, a trusted source or a health directory.

Search Engine: A search engine is programmed and automated to seek out websites related to your search request. Some search engines are:

www.google.com

www.yahoo.com

www.bing.com

Health Directories: A health directory or subject guide is a listing of Internet resources selected by people and organized by subject. Some well-known, reliable health directories are:

MEDLINEplus: www.medlineplus.gov

Healthfinder: www.healthfinder.gov

Medscape: www.medscape.com





Medical word search (*fee to use this service)

www.mwsearch.com

Trusted Source: A trusted source would be an independent website such as:

Hospital of Saint Raphael: srhs.org

American Cancer Society: cancer.org

National Institutes of Health: nih.gov

What are chat rooms, message boards and newsgroups?

These provide an opportunity for people to receive support and exchange information. Chat rooms are “live” and provide immediate responses from participants. Newsgroups and message boards allow one to read and respond to previously posted information. Many chat rooms and message boards are not moderated and participants are cautioned to evaluate any information learned via these types of sources with their physicians.

What is a blog?

Blogs are personal websites or online journals where people write about their lives. For people with cancer, blogs can serve as an information source for friends and loved ones during your illness. Writing about stressful things can be therapeutic – many find it a release and relief from the distress of living with a serious illness.





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Community outreach

Caring for our community is a large part of the mission of the Hospital of Saint Raphael. We demonstrate that caring in a number of ways, with community programs geared toward early detection and treatment of cancer.Among Saint Raphael’s most popular cancer screenings and early detection programs are:

Connecticut Breast and Cervical Cancer Early Detection Program The Hospital of Saint Raphael is one of 16 provider sites in Connecticut implementing the Centers for Disease Control (CDC) and Prevention-sponsored Connecticut Breast and Cervical Cancer Early Detection Program. Saint Raphael’s was one of the four initial pilot sites and has been a provider site since 1995. The program is administered through the State of Connecticut Department of Public Health, with funding from the CDC, and offers women who meet age and financial eligibility criteria free breast and cervical cancer screening and diagnostic services. Services can include a gynecological examination, clinical breast examination, mammogram (screening and diagnostic), breast ultrasound and biopsies. For more information, please contact the program’s Case Manager at 203.867.5436.

Sister to Sister The Sister to Sister Program was developed by Saint Raphael medical oncologist Andrea Silber, M.D., in response to the disproportionately high breast cancer mortality rates among African American women. As part of the culturally sensitive initiative, a health educator conducts outreach at inner-city churches, supermarkets, hair salons, community centers and other sites to encourage women to comply with breast cancer screening guidelines. The program works in collaboration with other area agencies interested in improving the health status of area women. Eligible women are referred to the Connecticut Breast and Cervical Cancer Early Detection Program. For more information, please contact the program’s Health Educator at 203.789.3517.

WISEWOMAN WISEWOMAN is a CDC-sponsored program designed to help women 40 to 64 reduce their risk for heart disease and diabetes and promote a heart-healthy lifestyle. Women enrolled in the Connecticut Breast and Cervical Cancer Early Detection Program are eligible to participate in this initiative. Connecticut is one of only 11 states to implement the program and the Hospital of Saint Raphael Is one of only nine sites chosen by the State Department of Public Health to participate. WISEWOMAN offers free or low-cost blood pressure and cholesterol testing, diabetes testing, smoking cessation programs, referrals to physicians for follow-up care and educational programs. For information, please call 203.867.5436.

Project BrotherhoodProject Brotherhood was created to provide Greater New Haven-area men with the educational and screening tools needed to make healthy lifestyle choices and help prevent cancer. Created through a Hospital of Saint Raphael-Bayer HealthCare partnership, the program offers the education and preventive screenings needed for early cancer detection and treatment — regardless of ability to pay. Project Brotherhood offers free prostate screening, discounted smoking cessation programs and healthy lifestyle workshops. For information, please call 203.867.5479.





ResourcesNational Organizations

Aging with Dignity The Five Wishes document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It is unique among all other living will and health agent forms because it looks to all of a person’s needs: medical, personal, emotional and spiritual. Five Wishes also encourages discussing your wishes with your family and physician. You may order a copy for $5.00.

888.5WISHES 888.594.7437) Web: agingwithdignity.org E-mail: [email protected] Alliance for Lung Cancer Advocacy, Support and Education (ALCASE) 1601 Lincoln Avenue, Vancouver, WA 98660 800.298.2436 E-mail: [email protected] Web: alcase.org Services: Telephone support and information; customized information services and resources. American Cancer Society 800.ACS.2345 1599 Clifton Road, NE, Atlanta, GA 30329 Web: cancer.org Services: Research and education; resources, information, & guidance; patient and community services and ongoing patient care programs. The Brain Tumor Society 124 Watertown Street Suite 3-H, Watertown, MA 02472 800.770.8287 E-mail: [email protected] Web: tbts.org Clinical Trial Information Web: clinicaltrials.gov Cancer Care, Inc. 1180 Avenue of the Americas, New York, NY 10036 (800) 813-HOPE (1.800.813.4673) E-mail: [email protected] Web: cancercare.org Services: Telephone support and counseling; online support groups, restricted financial assistance; educational programs, workshops, and teleconferences.





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Cancer Fund of America 2901 Breezewood Lane, Knoxville, TN 37921-1099 800.578.5284 E-mail: [email protected] Services: Provides assistance with medical supplies and equipment to the cancer patient. Call for application. Candlelighters Childhood Cancer Foundation 7910 Woodmont Avenue, Suite 460, Bethesda, MD 20814 800.366.2223 E-mail: [email protected] Web: candlelighters.org Services: Peer support groups for parents; information on insurance concerns, survivorship issues, and pain management; bereavement counseling, CenterWatch A clinical trials listing service with a searchable database of clinical trials listings and resources. Web: centerwatch.com Corporate Angel Network, Inc. (CAN) Westchester County Airport, Building One, White Plains, NY 10604 914.328.1313 E-mail: [email protected] Web: www.corpangelnetwork.org Services: Finds free air transportation on corporate planes for cancer patients who need medical treatment. CyberKnife® (The Radiosurgery Society) Web: cyberknife.com or therss.org Services: Patient and professional information regarding Cyberknife radiosurgery. Dream Foundation 621 Chapala Street, Suite 304, Santa Barbara, CA 93101-7011 805.564.2131 Web: dreamfoundation.org Email: [email protected] Services: Tries to fulfill wishes of adults when life expectancy is less than one year. Kids Konnected 27071 Cabot Road, Suite 102, Laguna Hills, CA 92653 800.899.2866 E-mail: [email protected] Web: kidskonnected.org Services: Teddy Bear outreach program provides books and information with a teddy bear to each child of a parent or grandparent with cancer.





Leukemia and Lymphoma Society of America (LLSA) 914.949.5213 800.955.4572 1311 Mamaroneck Ave., White Plains, NY 10605 914.949.5213 800.955.4572 Web: leukemia-Iymphoma.org Services: Area support groups, financial assistance, educational programs for persons with leukemia, lymphoma, Hodgkin’s disease, and multiple myeloma. National Brain Tumor Foundation (NBTF) 414 Thirteenth St., Suite 700, Oakland, CA 94612-2603 510.839.9777, 800.934.2873 E-mail: [email protected] Web: braintumor.org Services: provides information, counseling and support services to patients with brain tumors and their families. National Cancer Institute (NCI) 800.4.CANCER, 1.800.422.6237, TTY for deaf and hard of hearing 1.800.332.8615 The Cancer Information Service (CIS) is the voice of the NCI, providing cancer information, education and materials to individuals affected by cancer. Web: cancer.gov Cancer Mail Service: To obtain a contents list, send e-mail to [email protected]. With the word “help” in the body of the message. CancerFax on demand service: 800.624.2511 and follow the voice prompt instructions. National Coalition for Cancer Survivorship (NCCS) 1010 Wayne Avenue, 5th floor Silver Spring, MD 20910 877.622.7937 Web: canceradvocacy.org/ Services: Patient advocacy and assistance with employment issues, job discrimination and insurance concerns. National Library of Medicine A clinical trials database sponsored by the National Institutes of Health. Web: clinicaltrials.gov Patient Advocate Foundation 700 Thimble Shoals Blvd Suite 200 Newport News, VA 23606 800.523.5274 Web: patientadvocate.org E-Mail: [email protected] Services: Patient assistance for insurance and healthcare access issues.





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Radiation Therapy Oncology Group (RTOG) 800.227.5463 1818 Market Street, Suite 1600 Philadelphia, PA 19103 Web: rtog.org

The Radiation Therapy Oncology Group (RTOG) is a multi-institutional cooperative organization and national cancer study research group funded by NCI headquartered in Philadelphia with almost 30 years of experience in running clinical trials. The Father Michael J. McGivney Center for Cancer Care is an RTOG research study location. Susan G. Komen For The Cure 5005 LBJ Freeway, Suite 250, Dallas, TX 75244 800.1M.AWARE 800.462.9273) Web: komen.org E-mail: [email protected] Wellspouse Foundation 30 East 40th Street, Suite Penthouse, New York, NY 10016 800.838.0879 212.685.8815 Web: wellspouse.org Services: Spouses of chronically ill persons help each other develop coping and survival skills through local support groups and personal outreach Local Organizations

American Cancer Society 825 Brook Street, Rocky Hill, CT 06067 203.379.4700 Web: cancer.org Services: Research and education; resources, information, & guidance; patient and community services and ongoing patient care programs

American Lung Association of Connecticut 45 Ash Street East Hartford, CT 06108 800.992.2263 Services: Provides a variety of services such as patient advocacy.

Breast Cancer Network of Strength

PO Box 692, Branford, CT 06405 203.483.8200 Web: y-me.org Services: A breast cancer support and information program





Caregiver To Caregiver Volunteer Support Network VNA Community Healthcare 753 Boston Post Road, Suite 200, Guilford, CT 06437 203.458.5926 Web: connecticuthomecare.com Services: The Caregiver Volunteer Support Network matches current family caregivers in a “buddy system” with volunteers who are former caregivers. Volunteers provide companionship, emotional support, and assistance with finding community resources. The network also sponsors a walking group, yoga class and social event for caregivers. This service is free to family caregivers.

Center for Hope 590 Post Road, Darien, CT 06820 203.655.4693 Web: familycenters.org Services: Education and support for patients and their families including children Connecticut Department of Social Services 194 Bassett Street, New Haven, CT O6511 203.974.8000 Web: ct.gov/dss/site/default.asp

ConnPACE 800.423.5026 Web: connpace.com Services: A service that helps eligible senior citizens and people with disabilities afford the cost of most prescription medicines.

Infoline Phone 211 Web: infoline.org Services: Phone-based services providing information and referral to community resources.

National Ovarian Cancer Coalition—CT 92 Limewood Avenue, Unit A 14, Branford, CT 06405 203.315.8151 Web: ovarian.org E-mail: [email protected] Ronald McDonald House of Connecticut 501 George Street, New Haven, CT 06511 203.777.5683 Web: ronaldmcdonaldhouse-ct.org Services: The Ronald McDonald House of Connecticut is a temporary home away from home for families of children who are being treated at nearby hospitals.





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Social Security Administration 800.772.1213, 203.773.5201 Web: ssa.gov Official website of the U.S. Social Security Administration. Information on Medicare, disability and supplemental security income program.

Susan G. Komen For the Cure—Connecticut Affiliate Metro Center 350 Church Street, Lobby Level Hartford, CT 06103 860.728.4955 Web: komenct.org Email: [email protected] The Connecticut Hospice 100 Double Beach Road, Branford, CT 06405 203.315.7500 Web: hospice.com Services: The Connecticut Hospice is a palliative care service provided in the home, or inpatient setting by a medically directed, nurse-coordinated, interdisciplinary team and continues throughout the period of bereavement. The Connecticut Sports Foundation Against Cancer 129 Main Street Old Saybrook, Ct 06475 860.388.0788 Web: sportsfoundation.org Email: [email protected] Services: Financial Assistance granted in form of a check one time per year. Application form must be completed along with the previousyear’s income tax return. The Cove Center for Grieving Children, Inc. Coordinating Office 250 Pomeroy Ave., Suite 107, Meriden, CT 06450 203.634.0500, 1-800-750-COVE (2683) Web: covect.org Services: Bereavement services for children grieving the death of a parent or sibling.





GlossaryAdjuvant therapy: A treatment used in addition to the primary therapy. Radiation therapy, for example, could be used as an adjuvant to surgery.

Alopecia: Hair loss.

Anemia: Having too few red blood cells. People who are anemic can feel tired, weak, or short of breath.

Antiemetic: A medicine to prevent or relieve nausea and vomiting.

Benign: Describing a tumor that is not cancerous. Biopsy: The removal of a sample of tissue to see if cancer cells are present.

Blood count: The number of red blood cells, white blood cells and platelets in a sample of blood. This is also called complete blood count (CBC). Bone marrow: The inner, spongy tissue of bones where blood cells are made. Cancer: A general name for more than 100 diseases in which abnormal cells grow out of control and invade and destroy healthy tissues. Catheter: A thin, flexible tube carrying fluids in or out of the body. Chemotherapy: Using drugs to treat cancer. Clinical trials: Medical research studies, conducted with volunteers, to answer scientific questions and find better ways to prevent or treat cancer.

CT or CAT Scan: A series of detailed pictures of areas inside the body created by a computer linked to an X-ray machine.

Dietitian: A professional, also known as a nutritionist, who plans diet programs for proper nutrition, counsels patients on how certain symptoms can be relieved through diet or eating habits, and helps patients and families adapt to changes in eating patterns. Dosimetrist: A professional who plans and calculates the proper radiation dose for treatment.

External radiation: Radiation therapy using a machine located outside the body to aim high-energy rays at cancer cells.





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Hospice: A team approach to patient care either at home or in hospitals, nursing homes, or specialized facilities — with a primary emphasis on control of pain and quality of life issues. Comfort and symptom control are paramount roles in hospice care. Hospice caregivers also support family members in caring for patients.

Infusion: Slow and/or prolonged delivery of a drug or fluids through a vein.

Internal radiation: Radiation therapy in which a small container of radioactive material is implanted into or close to the area needing treatment.

Linear accelerator: A machine creating high-energy radiation to treat cancers, using electricity to form a stream of fast-moving subatomic particles. Lymph nodes: Small, bean-shaped structures that store special cells which can trap cancer cells or bacteria traveling through the body. Malignant: Describing a cancerous tumor.

Medical oncologist: A doctor of internal medicine who has trained and specialized in the care of cancer patients, and who utilizes chemotherapy in treating cancer patients when appropriate.

Metastasis: A process during which cancer cells break away from their original site and spread to other parts of the body.

Oncologist: A doctor who specializes in treating cancer.

Palliative care: Treatment to relieve cancer symptoms, helping people live more comfortably. Platelets: Blood cells that help stop bleeding. PO: By mouth; orally. Port: A small plastic or metal container surgically placed under the skin and attached to a catheter inside a large vein. Blood and fluids can enter and leave the body through the port using a special needle.

Radiation oncologist: A doctor specializing in treating cancer with radiation therapy.

Radiation physicist: A professional who makes sure radiation machines deliver the correct amount of radiation to the area being treated, and who consults with radiation oncologists and others on a patient’s treatment plan.



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Radiation therapist: A professional who operates the radiation machines.

Red blood cells: Cells supplying oxygen to body tissues.

Subcutaneous (SQ or SC): Under the skin.

White blood cells: Cells that fight infection.



Helping Out


Resource Guide – Helping Out

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Since Saint Raphael’s opened its doors, volunteers have had an important role in caring for the special needs of patients, families, visitors and staff. Saint Raphael volunteers are individuals from many backgrounds who share a common interest in helping others. They are professionals, retirees, teenagers, former patients and their families, homemakers and college students. This dedicated group donates thousands of hours of service to the hospital and its patients.

Volunteer opportunities include:

• TLC Patient Companion Volunteers: Volunteers provide a supportive environment for patients and families. They greet, visit and escort patients into the center, as well as to various treatment areas and test sites throughout the hospital.

• Looking Forward Program Volunteers: Volunteers serve as appearance consultants, helping patients with skin changes and hair loss, and as retail associates in the Looking Forward Specialty Shop. In addition, volunteers assist patients with Internet searches and gather information through Looking Forward’s Resource Library.

• Clerical Volunteers: Volunteers provide a valuable service by filing, answering telephones, making copies and running errands.

With more than 30 volunteers donating thousands of hours to the cancer center annually, their work is invaluable. Our volunteer program is open to individuals ages 14 and older who are able to commit to approximately three hours per week for six months.

For additional information about how you can become a volunteer in the McGivney Center or elsewhere in the Hospital of Saint Raphael, please call the Volunteer Services Department at 203.789.3480.



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The battle against cancer requires many resources, demanding the most highly trained physicians, nurses and healthcare staff. It also requires philanthropy to help pay for state-of-the-art equipment for diagnosis and treatment, facilities and support programs for patients and their families. Many of our patients or their family members and friends ask how they might support Saint Raphael’s cancer programs. Here’s some ideas:

Make Donations

The Saint Raphael Foundation welcomes tax-deductible gifts of cash, stocks and/or bonds, real estate or tangible personal property. Gifts can be designated to support a specified medical area of interest.

Designate memorial or honorary gifts to the Father Michael J. McGivney Center for Cancer Care or other cancer programs, such as the Looking Forward Program at the Hospital of Saint Raphael.

Gifts can be made in honor of caregivers and patients to support cancer care in the Saint Raphael Healthcare System. Donation envelopes are available at the cancer center and throughout the hospital or you may call the Foundation at 203.789.3242.

Include the Father Michael J. McGivney Center for Cancer Care in estate plans Donors can leave a legacy that will benefit their family and future patients through a provision in their wills for a planned gift through bequests, life insurance, gift annuities, trusts or retirement assets to the Saint Raphael Foundation, designating the Father Michael J. McGivney Center for Cancer Care.

Donor Recognition A friend or loved one can be recognized on the Tree of Life in the cancer center with a donation of $5,000.

Named funds can be established with a gift of $10,000. Donors may select a specific area of cancer care to benefit from their generosity. Payments for named funds can be made over 3 to 5 years. A plaque will be placed on the wall to recognize the gift.

Call the Saint Raphael Foundation There are many other ways patients, families and friends can express gratitude to physicians, nurses and other caregivers at Saint Raphael’s. Call the Saint Raphael Foundation at 203.789.3242 for more information, or visit srhs.org/foundation or write to [email protected].

Resource Guide – Notes


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2080 Whitney Avenue, Hamden, CT 06514 • srhs.org

Sponsored by the Sisters of Charity of Saint Elizabeth

Father Michael J. McGivney Cancer Center – Hamden Campus203.867.5622srhs.org/cancer

659 George Street, New Haven, CT 06511 • srhs.org

Sponsored by the Sisters of Charity of Saint Elizabeth

Father Michael J. McGivney Center for Cancer Care203.789.3131srhs.org/cancer

Back inside cover, 4 inch pocket with 2 business card diecuts

Looking Forward Resource Guide

Documents

Transcript of Looking Forward Resource Guide