It was a memorable spring for Andrew Hedberg. The rising sophomore made the varsity golf team at his high school and was elected class president for the upcoming year.

Most importantly, the bone cancer that once threatened his left leg and life remained in remission.

These accomplishments validated the decision that Andrew’s family made seven years ago, when pain in his leg sent them to the emergency room. This led to Andrew’s diagnosis of osteosarcoma, the most common type of bone cancer among children, adolescents, and young adults. In addition to chemotherapy and radiation, orthopedic specialists in the Bone and Soft Tissue Tumor Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center proposed two surgical options: limb-salvage surgery or rotationplasty – a partial amputation that preserves a cancer-free lower leg by reattaching it to the patient’s thighbone, using the ankle as a knee joint.

Rotationplasty allows a child to maintain an active lifestyle – including the opportunity to play high-impact sports like football and hockey – because of the flexibility provided by the reattached ankle working in conjunction with a prosthesis.

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Side by SideA newsletter by and for patients and families Summer 2019

A Hole-in-One Decision for Cancer Survivor

Andrew Hedberg came to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for treatment – including surgery by Mark Gebhardt, and clinical care led by Katie Janeway.

Limb-salvage surgery preserves a leg’s function, and its pre-surgical appearance, but it also leaves the limb fragile. Because wide margins of normal tissue need to be removed in addition to the tumor, the risk of fracture increases. Although high-impact sports are not an option, a prosthesis is not needed.

Andrew was too young to fully understand and consider the choices. Consulting with his medical team, led by surgeon Mark Gebhardt, MD, and oncologist Katherine Janeway, MD, his parents decided to try the limb-salvage surgery to preserve his full leg.

“Dr. Gebhardt felt this would be the best option for Andrew,” says Karen Hedberg, Andrew’s mother. “It would be easier for him to manage while he grew up.”

The collaboration between the surgical team and the clinicians who helped Andrew get back on his feet after his cast was removed were also helpful in the months after surgery.

“There was a great partnership between Drs. Gebhardt and Janeway,” says Fred Hedberg, Andrew’s dad. “They were completely transparent with us about what to expect, and did an excellent job bringing Andrew into the discussion as much as possible.”

There were still challenges. The growth plates in Andrew’s knee – areas of developing cartilage tissue near the ends of long bones in children and adolescents – had been hampered by the nearby tumor, causing his left leg to grow more slowly than his right. Additional surgery at Dana-Farber/Boston Children’s fixed the discrepancy, and as Andrew came to understand the limitations of his limb, he came to accept them.

“Sure, there were times I wanted to play contact sports, but I am making the most of things,” he says. “I can still shoot baskets or go to the batting cage. And lately, I’ve enjoyed representing my school on our golf team.”

Fred Hedberg believes one reason Andrew has excelled at golf despite picking it up late is the time he spent hitting baseballs that Fred tossed to him before and after his surgery. Andrew developed great hand-eye coordination from swinging a baseball bat that has translated into a strong golf swing. His doctors are thrilled.

“There is still a risk of getting hurt,” Andrew says. “But you can’t live in fear.”

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I was a 74-year-old pediatrician practicing with a multi-specialty

group associated with Boston Children’s Hospital. Forty years after becoming a doctor, I still loved learning new things and sharing them with my patients. Then I was diagnosed with ovarian cancer – and suddenly, a big wall separated me from the people who filled my days.

My diagnosis came during a difficult time. I had postponed my yearly check-up with my gynecologist because I was busy with work and helping care for my ex-husband, whose health was declining. After he died, I visited our daughter, Odile, in New York City. Sharing a futon with her cat, I woke up in pain one night when it walked over my belly. The next morning, I examined my abdomen

Side by Sideand noticed something hard.

Back in Boston, I learned I had an ovarian tumor that was big enough to push my uterus up; this was the hardness I felt. When entering the ultrasound, my first thought was that it was 9 a.m. and I had more than 20 of my own patients scheduled for that day. The procedure confirmed I had stage I ovarian cancer; the tumor’s swelling had led to an early diagnosis.

The tumor was removed during surgery at Brigham and Women’s Hospital, but the cancer cells that may have spilled in my abdomen during the operation were aggressive. Chemotherapy was mandatory.

I had led a full life and initially refused to undergo chemotherapy. But Odile insisted I see the

oncologist my gynecologist recommended: Ursula

Matulonis, MD, chief of Gynecologic Oncology in the Susan F. Smith Center for Women’s Cancers

at Dana-Farber.

Luisa Stigol (right) and her daughter, Odile.

Stigol enjoys living near her daughter and grandchild (above) in New York City.

I still remember my first visit with Dr. Matulonis: the room and corridors, the light that filtered through the windows, and my fears. I was prepared to give my reasons for not having chemotherapy. To my surprise, when I left 1.5 hours later, I had agreed to the treatments.

Odile traveled to Boston for each chemotherapy session, committed in her role as my caregiver. And to help work through my diagnosis and recovery, I continued writing a memoir I had started. Whether alone or with a nurse’s aide in the apartment, my computer was my main support. I wrote every day.

I joined a support group, and it became the central activity in my life: my peers, my role models, my survival. The force, caring, solidarity, and the compassion of these women – all of them also undergoing chemotherapy – has stayed with me. So have

memories of the relaxation exercises I attended at the Leonard P. Zakim Center for Integrative Therapies and Healthy Living. They took place in a large room, with carpeting that featured an outline of a labyrinth. When I hesitantly began to walk and follow its path, I found myself forgetting my anxieties.

In time, I realized that I might not be able to return to my profession and began volunteering at a local art museum in Boston. This was a step toward my current role as an accessibility volunteer at the Metropolitan Museum of Art in New York.

Fifteen years post-diagnosis, my cancer is in remission; I no longer come in for annual checkups. Now living near Odile and her family, I have an active social life and happily greet every day. I am ready to deal with what it brings.

Facing Ovarian Cancer, A Doctor Becomes The Patient

Written by: Luisa Stigol

Ambulatory Transplant Program Launches

3Summer 2019

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(Left to right) Lauren Sullivan, Corey Cutler, and Amy Emmert are at the forefront of a new program aimed at helping some stem cell transplant patients avoid being admitted to the hospital.

This summer, Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC) implemented a new ambulatory transplant program designed to help some stem cell

transplant patients avoid hospital stays. “The aim is to give patients their transplant without needing

to step inside a hospital,” says Corey Cutler, MD, MPH, medical director of Stem Cell Transplantation and director of the Ambulatory Transplant program. “This way, they can relax and recuperate in their home or local lodging with their caregivers.”

We are moving the safest part of the process to the clinic, before the patients become immune compromised.”

Patients who qualify for the program meet key eligibility criteria and are scheduled to receive a reduced-intensity allogeneic transplant – also known as a “mini transplant.” This modified form uses lower, less toxic doses of chemotherapy and does not require radiation therapy. To qualify, patients must be clinically cleared for risks that would require hospitalization, comply with the program’s stipulations, have residency or temporary lodging close to the Institute, and prove adequate caregiver support. Cutler says it’s important to be restrictive right now because the program is in its infancy.

Patients who do not meet these initial criteria will receive their transplant as an inpatient. But, as the program grows, the aim is to offer the option to more reduced intensity conditioning (RIC) transplant patients.

Currently, patients are admitted 7 days before treatment and discharged the day after their transplant. Through the new program, however, patients receive their preparatory chemotherapy, stem cell infusion, and follow-up care in the Yawkey Center – and can return home each day. If a patient experiences complications, they will be admitted to a hospital and stay until it is resolved.

The nursing staff have been carefully adjusting the

educational materials to help patients and their caregivers feel safe at home and know when to call for help.

“Data shows these particular patients rarely get sick during the pre-transplant process, and once they’re discharged, they are rarely readmitted in the first two weeks for post-transplant complications,” adds Amy Emmert, vice president, Hematopoietic Stem Cell Transplantation and Cellular Therapies.

If proven effective, the program is expected to be available for roughly half of the DF/BWCC patients on RIC regimens.

“At the completion of therapy, they can go home, spend time with family, and sleep in their own bed,” explains Janet Bagley, MS, RN, associate chief nurse, Adult Oncology. “This sense of normalcy and independence will make the experience less restrictive and more tolerable.”

Reserved Parking for Pediatric FamiliesDid you know that pediatric patients and families visiting the Jimmy Fund Clinic can take advantage of reserved parking in Dana-Farber’s parking garage? The garage has 10 spaces reserved for pediatric families on level P3 (the first level where patients can self-park). Look for the spots adjacent to the elevators labeled with signs that say, “Reserved Pediatric Patient Parking.” Alternately, you can use the valet service on level P1 at no extra cost.

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Side by Side is dedicated to the memory of Geraldine “Geri” Hass Malter. Geri was a founding member of Dana-Farber’s Adult Patient and Family Advisory Council and the creator of Side by Side. She managed its publication from 1999 until her death in 2002.

Editor: Jessica L. CassidyDesign: Deanna L. Finlayson

What’s The Difference Between UVA and UVB Rays?

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The warmth of sunlight can be inviting after a long winter, but prolonged and frequent sun exposure without proper protection can result in an uncomfortable sunburn at best and significant skin damage at worst.

Although there are many types of rays present in sunlight, ultraviolet (UV) rays are the most harmful and play a major role in skin cancer formation.

There are two basic types of UV rays:UVA rays are more present in sunlight than UVB rays and are

less intense. They penetrate deeper into the skin than UVB rays, causing long-term damage and premature aging.

UVA also causes more genetic damage than UVB in skin cells where most skin cancers arise. This can result in the formation of cancerous cells in the body.

UVB rays’ intensity varies depending on the season, location, and time of day. The most significant amount of UVB hits the United States between 10 a.m. and 4 p.m., from April to October. Whereas UVA penetrates the skin, UVB damages the protective outer layers of the skin, resulting in sunburns or sun poisoning.

Sunburns and tans are the result of the skin’s cellular DNA’s attempt to trying to protect itself from further damage. This can increase the chance of developing melanoma or other skin cancers.

There are plenty of ways to limit UV exposure:

• Use sunscreen. Use sunblock with an SPF of 30 or more and reapply every two hours (and immediately after swimming). Replace your sunscreen every year; some ingredients become less effective over time.

• Wear protective clothing. Long sleeves or coverups are often more effective in preventing sun damage than sunscreen. A wide-brimmed hat, baseball cap, or sunglasses can also help block harmful UV rays.

• Seek the shade. When possible, avoid direct sunlight – especially between 10 a.m. and 4 p.m. If you’re going to the beach, try to go later in the day and bring an umbrella.

• Know your ABCDEs. Regularly check your skin for anything out of the ordinary. Freckles and moles are often harmless, but it is important to perform regular self-exams, following the ABCDEs (asymmetry, border, color, diameter, evolution). Contact your doctor if anything seems unusual.

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Early detection is influenced by individual behaviors – meaning those who are able to take a more active role in their health are most likely to benefit from early detection.

Newer methods of early detection include:• Biomarker/genetic test: identifies molecules or

substances found in blood, fluid, or tissue that may indicate a particular condition or disease.

• Liquid biopsy test: a noninvasive test that detects tumor cells or biomarkers that may indicate cancer.

• Population science-based testing interventions: targeted outreach to increase effective screening of certain populations at higher risk.

Cancer mortality rates have dropped significantly for some cancers over the past two decades, thanks in large part to prevention efforts. Scientists and clinicians continue to discover more early indicators to improve outcomes for all types of cancer.

Early detection of cancer may improve outcomes for some cancers, including:

• Colorectal Cancer

• Prostate Cancer

• Skin Cancer

• Screening for precancerous cells and tissue with no symptoms present, like scheduling an annual mammogram.

• Recognizing symptoms before cancer progresses to advanced stages, like getting a new mole examined.

• Brain Tumors

• Breast Cancer

• Cervical Cancer

Early detection refers to measures taken to diagnose cancer as early as possible, when it is easiest to treat. Measures include:

5 Things to Know About Early Cancer Detection