PROSTATE CANCER SUPPORT GROUP Cancer Support Centre, Jacaranda Lodge 185 Fox Valley Road, Wahroonga NSW 2076

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Programme for March/April

March 23 Let’s Dry Up Australia

Assoc Prof Pauline Chiarelli, Physiotherapist / Continence Advisor

This is a very special session on this subject which affects many people. It is open to all interested parties, especially other Prostate Cancer Support Groups.

Bookings with Nerolie on 9487 9061 April 13 No meeting—Easter Monday April 27 Consumers/Carers Presentations

Partners and family members are very welcome at all of our meetings.

Please note that the time for the Support Group Discussion Meetings is 2.30pm for a 3pm start (come & enjoy a cuppa and meet others); whilst the evening meetings commence at 7pm sharp out of courtesy to our contributing medical professionals.

MARCH 2009

Promoting Wellness—Dr Mark Moyad

Dr Moyad occupies an endowed position created and funded entirely by his patients. He is the Jenkins/Pokempner Director of Preventive and Alternative Medicine at the University of Michigan Medical Centre (Department of Urology). Hormone therapy, or androgen suppression, or LHRH treatment has been around for decades and will probably be around for a long time yet. The aim is to empower you with lifestyle suggestions to improve your health in general and then to look at the common side effects from LHRH treatment to better prevent or reduce these side effects.

The presentation will be given at the Pullman Hotel, Sydney Olympic Park, Tuesday 3rd March meeting of the Urology Oncology Programme sponsored by ABBOTT.

Dietary supplements = BIG BUSINESS. Sales of supplements in the USA exceed $32 billion! None of these supplements undergo clinical trials to establish the benefits or otherwise. It is necessary to STOP supplements prior to surgery and especially before any form of radiation therapy. Supplements reduce the efficacy of radiation treatment. The primary cause of death in men is: 1. Cardiovascular disease

2. Cancer 3. Respiratory Disease 4. Alzheimer’s disease 5. Diabetes Cont. p2

Heart healthy equals ALL healthy. As heart disease is the number one killer of men and the number one cause of death in men diagnosed with prostate can-cer, if you become more heart healthy this helps give you a “2 for 1” affect. Once you are doing the most you can to prevent some of the leading causes of death, ie reducing your risk of developing heart dis-ease, you are then promoting prostate health as well. The requirement is to reduce cardiac risk to zero by lowering blood pressure, having low cholesterol and by exercising. Over the counter dietary supplements are not heart-healthy. “Focus on the forest over the single tree!”

1. Monitor your cholesterol and blood pressure

2. Maintain a healthy weight

3. Exercise and move more – including weight lifting

4. Worry more about calories, not just fat content

5. Read nutritional labels as it’s a good way to con-trol calories and decide what is truly healthy and un-healthy.

6. Consume more Omega-3 Fatty Acids

7. Consume nuts – high in Vitamin E = helps control calories

8. Consume more fibre (soluble fibre = a good thing) Selenium is causing over anti-oxidation of the popula-tion. Don’t focus on animal studies, focus on human studies. Sources of dietary selenium include nuts (especially Brazil nuts), fish or shellfish, poultry or other lean meats, pasta or bread, eggs, garlic, mush-rooms, oatmeal, onions and rice. Dr Moyad sug-gested men take a women’s multi-vitamin, if they must, because they contain the ‘regulation’ doses of vitamins and minerals. Aspirin is a miracle drug for people who need it, but potential disaster for those that don’t. By taking aspi-rin the risk outweighs the benefit to prevent cancer as the only benefit is for those with cardiovascular dis-ease. The EPIC study shows that belly fat is the most accu-rate prediction of mortality. The researchers used two measures of abdominal obesity – waist circumference and waist-to-hip ratio – in their attempt to better un-derstand the role of belly fat in early death. The accu-mulation of excess fat around your middle can put your health at risk even if your weight is normal. Cut-ting back on 100 calories per day is equal to 10 pounds weight loss a year. Low fat diets have no impact on any disease. It just does not work! The real issue is low calorie diet. Work with your health professional to find a dietary programme that makes sense for you. If it sounds too good to be true then it probably is.

The word from Dr. Moyad is to take Vitamin D tablets ‘if you need it’. Undergo a Vitamin D blood test to establish if you have the normal level of 90 – 100 nmol/1. Calcium requirements are between 1200 – 1500mg. per day. Men are 91% - 98% deficient so it’s impor-tant to boost your daily requirements, especially when on hormone therapy. Dr Moyad indicated that the number one source of Lycopene IS NOT tomatoes but WATERMELON. Pomegranate juice is pure business as an 8oz. glass equates to 140-160 of your calorie intake per day. Statins are more beneficial than any other supple-ment, ie Pomegranate, Vitamin E, Selenium etc. be-cause of the increased risk of prostate cancer and Type II diabetes. The DASH (Dietary Approaches to Stop Hyperten-sion) trial indicated the need to reduce sodium. It’s not the salt on the table that’s the issue, but the salt in processed food! It was designed to determine the effect on blood pressure of entire dietary patterns that combine some or all of these nutrients – fibre, choles-terol, calcium, magnesium, potassium and sodium. And for those men suffering with hot flashes from hormone treatment, flax seed (linseed), in modera-tion, may be of benefit for reduction of weight and cholesterol. Exercise acts as an anti-depressant. It also im-proves bone health with weight-bearing or resistance exercises. Lifting weights just two to three times per week can improve bone health and reduce osteopo-rosis risk, reduces the risk of falls and injury, fatigue and increases energy levels. It also improves overall quality of life, cardiovascular health, the reduced risk of diabetes and a reduction in body fat, and impor-tantly, it improves your mood! TAKE HOME MESSAGES Low calorie diet Daily exercise Girth <90 cms Avoid trendy supplements

The booklet, Promoting Wellness, Second Edition, will be available shortly.

Report by Pam Sandoe 4th March, 2009

Promoting Wellness continued …….

Dr Izard elected to take questions from the floor on which to base his presentation. We were therefore given the opportunity to ask our questions so we could be clear in our minds about the various radiation treatment options, why one particular treatment is suited to one man and not another! To begin with however, Dr Izard explained the meaning of the term BRACHYTHERAPY. It is a Greek word of two parts: Brachy = close/near Therapy = treatment Brachytherapy makes use of the inverse square law relating radiation intensity inversely to the distance from the source. Radiation, like heat, dissipates with the square of the dis-tance, ie dose varies with 1/d². The graph of this exponential relationship shows that the dose declines by 96% in 5mm from the radiation source. If the source was 100 – 105mm from the target organ then there would be little difference across those 5mm. This means that with external beam ra-diation treatment (EBRT) the dose received by the adjoining rectum is potentially the same as the prostate is receiving. Treatment is, therefore, limited to the dose that the rectum can withstand. Brachytherapy can deliver much higher and thus much more effective doses that do not impact much, if at all, on adjoining tissues/organs. Brachytherapy can be used anywhere, ie oesophageal, lung cancers or skin, and as a permanent or temporary treatment. The integral dose is the total dose of radiation a patient re-ceives, not just what gets into the prostate. EBRT has a higher integral dose than brachytherapy, and IMRT higher still. This has to be borne in mind when planning a treat-ment, but is considered acceptable by some in the “older” person. Therapeutic radiation can, of course, cause cancer but the likelihood is very low (see below). The risk does de-pend upon the volume and area that receives the treatment. This may be something you need to clarify with your own doctor if it bothers you, but be assured, we wouldn’t do the treatment if it was unsafe. Side effects of radiation are 95% overcome in the first three months after treatment. A patient stabilises in 3 – 4years although a few side effects may crop up later in life. Sensi-tivity to radiation occurs in 5% of the population but this is not known until after the treatment is given. In general, a healthy 80 year old may well cope better with treatment than an un-healthy 60 year old. The prostate is remarkably mobile. A prostate will move with speaking, with respiration, with a bolus in the bowel or an empty or full bladder. To allow for this movement we want to see where the gland is, and can do this by implanting gold seeds into the prostate. These “Fiducial markers” are used so that the prostate is easily located by x-ray. Image guided radiotherapy (IGRT) allows the radiation therapists to see what is being treated by focussing on these seeds. This

technique introduces three 24 carat gold seeds into the prostate. These are inert and safe, and are not re-moved after treatment. The quality of the gold avoids all chance of an allergic reaction that occurs with lesser carats. The cost is around $120/seed with no Medicare rebate currently. Which man is suitable for which treatment? This depends upon:

1. Patient factors 2. Disease 3. Treatment

1. Patient factors include: Age, health, geography, social issues. If there is an expectation of life of more than 10 years, then aggressive “radical” treatment is often considered appropriate. Surgery is often a recommendation for patients below the age of 70. Brachytherapy is perfectly appropriate for many men between the ages of 60 – 70. Because of the lack of long term evidence (twenty years or more) brachytherapy for younger patients (under 60) is not yet considered as the treatment of first choice. However, evidence shows patients doing fine after 15 years. As this form of treatment has not been around sufficiently long enough, the side effects have to be ex-trapolated for 20 or 30 years after treatment. 2. Disease factors include the Gleason score which measures the aggression of the cancer, and the Stage, which is a measurement of the extent of the cancer. Using pathology from the biopsy, and the results of the clinical examination, as well as radiological assessment with bone scan and CT scan, the treatment choice can be defined. 3. Treatment choices include observation, hormonal treatment, surgery and radiotherapy. Success of treat-ment depends on your cancer: PSA – Stage – Aggression = Risk Factors Risk factors will define the likelihood of success or fail-ure, and so results depend upon your particular combi-nation of risks. (1) Observation or watchful waiting/active surveil-lance is a reasonable choice if the PSA is not moving. Doing nothing (ie not making a deliberate choice) with a diagnosis is not good! Choosing to do nothing is com-pletely different and may well be appropriate, but make the choice, don’t pretend nothing is the matter. (2) Hormones don’t cure but hold the cancer from a shorter period to a longer period of time (a few to many years) and is a palliative way of dealing with prostate cancer. (3) Surgery – possible side effects include inconti-nence and erectile dysfunction. Not the subject of to-day’s talk. (4) EBRT can cause incontinence but fortunately, this is very rare. Pelvic floor muscle exercises following treatment make the side effects more acceptable than surgery.

BRACHYTHERAPY Dr Michael Izard, Radiation Oncologist, Mater Hospital, North Sydney

Monday 23rd February, 2009

(5) Brachytherapy can be (a) temporary or (b) per-manent. However, as indicated previously, if the pros-tate gland is too big, the pelvic bones get in the way and therefore the edges don’t get ‘done’. Explaining brachytherapy requires a lot of information to be passed to the individual. It can take the medical practitioner an hour or more to go through the rationale of treatment choices properly with a patient. Seeds are good for slower growing and small cancers. With high grade disease (Gleason 8 – 9) Low Dose Rate (LDR) seeds are not appropriate. Fast growing cancer will regenerate faster than the radiation action of the seeds. Even with a Gleason 7 and a bulky cancer, seeds are not necessarily the best choice. Also, the anatomy and position of the pelvic bones will interfere with implanting seeds into the peripheral areas of the prostate if it is too big. A temporary (HDR) implant is done across 24 hours. EBRT is given to mop up any microscopic disease out-side the prostate or cancer missed in a large prostate. This treatment does not work on already established metastases away from the prostate, eg bones. It in-volves needles into the prostate using both an x-ray ma-chine and an ultrasound probe in the bottom to position the needles correctly. These needles are hollow and with the aid of powerful computers we can deliver a treatment dose of radiation to cover the gland but keep the dose away from the rectum. Seed brachytherapy (LDR) treatment is for low risk patients in the population and therefore has around a 80 to 90% success rate. When compared group for group brachytherapy gets a higher success rate than external beam. Seeds make use of Iodine125 and the temporary brachy uses Iridium192. Both have a similar half life of around 2 months but the dose-rate (ie the time of delivery of the dose of treatment) used is very different. Treatment costs: To establish a proper Brachytherapy unit the equipment costs $3 million and the tasks take an expensive team including two physicists and several others. Both brachytherapy treatments work out at $20,000 - $25,000 which leaves the patient $8,000 out of pocket after Medicare rebates. EBRT costs $15,000 privately but most is recovered through Medicare re-bates ($0 - $2,000 out of pocket expenses). Private Health funds do not pay for radiotherapy. Only a few public hospitals offer brachytherapy and usu-ally they are severely limited to treating only a few pa-tients each year due to cost restraints. Side effects of brachytherapy: (1) Bladder – burning, stinging and frequency, with a slowing of stream that can be alleviated by raising pH of urine with antacids, or with effective pills such as Flo-maxtra™ or Vesicare™.

Radiation treatment does not help pre-existing urinary problems whereas surgery does. Radiation can rarely cause a urethral stricture (narrowing caused by scarring) that restricts or occasionally prevents flow but this can be fairly easily opened up again. If you present to the doc-tors with continence issues before radiation you’ll leave with these issues. Frequency can be overcome with tab-lets; stinging with Ural. (2) Bowel – A change in bowel habit can occur. This may be very minor, there may be looseness and irregu-larity, occasionally slight bleeding or urgency. If bleeding continues it may be suggested that a colonoscopy be undertaken to establish cause other than radiation side effect. (3) Sex life – if it was working well it will continue. “Use it or lose it”! (If erectile dysfunction is evident prior to any form of treatment it won’t be better after treatment.) Treatments include tables (Viagra™, Cialis™, Levitra™), penile injections or a penile prosthesis. (4) General – Exercise such as walking, swimming is strongly encouraged to minimise tiredness. There is al-ways a risk of second cancers. For a man in NSW, the risk of getting a first cancer (other than skin cancer) is 1:2. The risk of getting a second cancer is 1:10, ie less than for the first time. The chance of radiotherapy causing cancer is 1:100→1:4000 Follow up is with PSA readings. <.01ng/ml is excellent; < 2.00 is good. There is often a ‘bounce’ which can oc-cur between 12 – 36 months after treatment but this usu-ally subsides below 2 again. The recommendation is to monitor PSA every 6 months for five years and thereafter annually. The PSA needs to be between 10 – 20 before restarting any further treatment, however it will take sev-eral years to get to this point. No treatment is given dur-ing this time because of the side effects of hormones. Many thanks to Dr Izard for his excellent presentation and for answering all the questions in such depth. He has kindly revised our notes for inclusion here. This presentation will be available on DVD through our Cancer Support Centre and the offices of PCFA.

Report by Pam Sandoe & John Wheeler

Dr Michael Izard

Remaining programme for 2009 May 11 Support Group Discussion Meeting 25 Dealing with Advanced Disease or Recurrence Dr Yvonne McMaster, Palliative Care (retired) & Dr Phillip Katelaris, Urologist June 8 No meeting—Queen’s Birthday Holiday 22 Cancer & Nutrition Ms Kathy Chapman, Nutritionist, Cancer Council of NSW July 13 Support Group Discussion Meeting Advanced Prostate Cancer & Clinical Trials 27 Dr Gavin Marx, Medical Oncologist Aug 10 Support Group Discussion Meeting 16-20 10th National Prostate Cancer Symposium, Melbourne 24 Heart Health—Prostate Health & Diabetes Dr Melissa Doohan, Cardiologist Sept 14 Support Group Discussion Meeting 28 Update from American Urological Association meeting Assoc. Prof. Henry Woo, Urologist Oct 12 Support Group Discussion Meeting 26 Understanding Treatment Options Dr Manish Patel, Urologist Nov 9 Support Group Discussion Meeting 23 Erectile Dysfunction Dr Phillip Katelaris, Urologist Dec 14 Christmas afternoon tea

You have Advanced Prostate Cancer: What’s Next?

An Individual disease: Advanced Prostate Cancer is almost like a different disease in each man it affects. The course of the disease is different in every man. Treatments work differently. Therapies have to be tai-lored to individuals. You will work with doctors who know a lot about the disease. But you need to get smart about your prostate cancer. It’s your body. It’s your life. The 5 things to do first: There’s a lot to learn and do. It can be overwhelming but you can tackle it all, one step at a time. 1. Learn all you can about advanced prostate cancer and your situation. You need the facts. You need to be educated about your own medical history. You need to learn all about advanced prostate cancer and your potential treatment options. 2. Build a medical team you trust. You may already have a doctor/s you work with. Advanced prostate can-cer is a complex disease. It takes a team of medical professionals, so find the best team you can. 3. Talk with other patients with prostate cancer. Join a support group and talk with people who have been down this road before. You may learn about new treatments, hear inspiring stories and practical information. You may even share a laugh with someone who understands exactly how you feel. 4. Stay healthy and fit. Good diet and exercise improves everything from heart health to mood. Get fit, you’ll feel better and have more energy. Treatments will work better. Side effects will be less bothersome. More exercise is better than less and some is better than none. 5. Find joy! Living long and enjoying your life: that’s the whole point. Help yourself by doing things you enjoy. Make big plans. Fill your days with things and people you love. Joy is not only its own reward but a powerful medicine too. Find good information on Advanced Prostate Cancer: ask your doctor. Your support group may be able to recommend recent articles and books. Subscribe to current newsletters, talk with other prostate cancer survi-vors, read from reliable web sites, attend your support group to hear from Medical professionals. Information taken from “Living with Advanced Prostate Cancer” a publication from the educational service of the INSTITUTE For Continu-ing Healthcare Education obtained through the Prostate Cancer Research Institute: www.pcri.org

Disclaimer: The information in this newsletter is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your qualified medical professional.

Prostate Cancer Support Group Details - Cancer Support Centre Jacaranda Lodge

Group Leaders: David Sandoe OAM Pam Sandoe OAM sandoe@optusnet.com.au Phone: 9983 0877 Ron Mead eppingmead@gmail.com Graham & Adele Staggs gstaggs@accsoft.com.au Cancer Support Centre:

Annette Polizois support@sah.org.au Nerolie Gate support@sah.org.au Phone Ron, Graham & Adele, Annette & Nerolie on 9487 9061 Useful websites: www.prostate.org.au www.prostatehealth.org.au www.prostatecancer.com.au www.cancercouncil.com.au www.andrologyaustralia.org www.beyondblue.com.au APCC Bio-Resource (Australian Prostate Cancer Coalition) - www.apccbioresource.org.au For rural & remote readers: www.raplink.org.au RAPLINK is a self-funded organisation linking communities with information and resources Sydney Adventist Hospital website: www.sah.org.au Previous PCSG Newsletter issues available on this website—Click on Quick links: Cancer Support & scroll to PCSG Newsletters. Reliable websites in the USA include: www.ustoo.org and www.prostatenet.org

You have received this newsletter because you have provided your contact details to us as the Prostate Cancer Support Group (PCSG) at the Sydney Adventist Hospital. The primary purpose of collecting your contact details was to enable support, resources and information to be offered to you as a person affected by or interested in prostate cancer. We do not use or disclose your details so as to ensure we comply with the Privacy Act.

As a member of an affiliated PCSG (with Prostate Cancer Foundation of Australia) you will initially receive, by post or email, our group newsletter and the national quarterly Prostate News. If you are not receiving Prostate

News please contact PCFA on www.pcfa.org.au or on the phone number listed below. You may also receive other communications from time to time such as advice on upcoming symposia, news and guidelines being re-viewed. You may ‘opt-out’ of any of these services at any time ie. you will no longer receive any material of that type, by letting us or PCFA know your wishes.

Contact Nerolie Gate on (02) 9487 9061 regarding the newsletter or PCFA on 1800 22 00 99 re: Prostate News.

VALE: It is with deep sadness we advise of the death of one of the longest serving members of this support group. Geoffrey St Clair Turner passed away peacefully on March 1, 2009. Cherished hus-band of Yvonne, devoted and loving father and fa-ther- in-law. Geoffrey was 90 years young. He will be lovingly remembered by those who knew him. To those he spoke to as a consumer he will be re-membered as a gentleman. Geoff was one of the men who ‘came with the group’ when David and I became co-facilitators. He was always willing and charming in his assistance. Graham Staggs attended the funeral service (on our behalf) held at the Northern Suburbs Crematorium on March 5th.

Geoffrey St Clair Turner 11/1/1919—1/3/09