Dear Readers - St Vincents Prostate Cancer Centre

Dear Readers - St Vincents Prostate Cancer Centre

St Vincent’s Hospital Prostate Cancer Support Group affiliated with the Prostate Cancer Foundation of Australia the I S S U E 1, 2 0 0 8 LIFEBUOY D...

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I S S U E 1, 2 0 0 8

LIFEBUOY Dear Readers

Welcome to the first newsletter for 2008. The year got off to an enthusiastic start with Dr Rosie King at our first support group meeting. Over 70 people attended and Rosie spoke for over 1½ hours, fielding over 50 questions, on “Sexuality: What to expect after prostate cancer”. Rosie is a wonderful speaker and it was one of the most interesting and enjoyable meetings we have held. In this edition of Lifebuoy there are two short stories written by the wives of men affected by prostate cancer. They are two very different stories. Mandy’s story is one of detecting cancer early whereas Lyn’s is about dealing with advanced cancer. I thank both women for their honesty and willingness to share with others their experience. We were saddened to hear the news of the passing of Dr Peter Duval at the end of last year. Peter was a radiation oncologist here at St Vincent’s. Many of you may have been treated by Peter when undergoing radiotherapy. Our thoughts go out to his family. After 30 years at St Vincent’s, Urologist Dr David Golovsky retired from the St Vincent’s urology department at the end of 2007. Dr Golovsky is now doing part time work with Sydney IVF in the area of male infertility. We wish him well with this next chapter in his life. As mentioned in the last newsletter, Dr Vip Patel – a world leader in robotic surgery was the guest speaker at a two day conference held here at St Vincent’s in November. The conference was most successful and a great deal was learnt by all those that attended. Dr Patel is conducting a world conference in Florida in March which I am attending. It will be a great experience to visit his state of the art hospital. The next support group meeting is to be held on Wednesday May 7th. The speaker is Dr Gerald Fogarty. His topic is “Modern Advances in Radiotherapy for Prostate Cancer”. I hope that many of you will be able to attend and hear what developments are occurring in radiotherapy for prostate cancer. Finally, I would like to thank the family and friends of the late Denis Fountain for the memorial gift donations given in his honour. As always these donations enable ongoing prostate cancer research here at St Vincent’s.

Jayne Matthews Co-ordinator St Vincent’s Prostate Cancer Centre

prostate cancer

centre

S

taying connected when cancer is pushing you apart

You have probably heard a great deal about the medical side of prostate cancer: surgery, radiotherapy and hormone therapy. But the emotional side of things is seldom discussed, particularly the effect of cancer on the relationship between a man and his partner. The diagnosis of prostate cancer can be a real shock, but add to that the fact that your most private masculine parts are involved and it’s no wonder so many men feel distressed at this time. Men who are upset tend to shut down and shut up, refusing to talk to anyone. This can be tough for their partners who feel rejected, miserable and isolated. Too often couples in crisis feel disconnected and lose their intimacy. This loss of intimacy can be just as painful as the grief and shock caused by the diagnosis of cancer. When you hear the word “intimacy” do you immediately think of sex? Many people confuse intimacy with sex but the two are completely different experiences. Often when people seek out sex what they really want is the comfort of intimacy; it’s not arousal and orgasm they crave but emotional closeness. Ultimately the sex proves unsatisfying because there’s no emotional foundation for it, no intimacy – just two people sharing a bed. Sexual intimacy is simply a matter of sharing your body with someone else. You can become physically intimate with a new lover in an hour, or half-hour. On the other hand genuine emotional intimacy can’t be created instantly. It is something that grows gradually over time, deepening until we experience total sharing of our selves with another person and vice versa. When we first meet someone our conversation is very superficial. We speak in clichés: “Nice day isn’t it?” or “Do you come here often?” and engage in small talk. If you want to get to know someone better, you try to find some common ground with them. You ask about their job, where they live, their family, their friends and hobbies and carry on conversation about these fairly safe subjects. However true intimacy doesn’t begin until you start to trust your friend enough to open up and self disclose. You begin by sharing the private aspects of yourself with which you feel comfortable – your achievements, your successes, the times you’ve been a winner in life. That’s the easy part. But to really get close to someone else you need to learn to trust them enough to expose what’s behind the see-how-great-I-am mask you wear for the outside world and allow them to see your vulnerabilities: your fears, your anxieties, the things you feel ashamed of. To sum up, intimacy is IN-TO-ME-SEE, letting the other person see who you truly are. Intimacy is a two way street, a bit like a game of ping pong. It requires both players to take turns in listening and speaking. The speaker’s role is to share the inner experience of self, his or her inner life - thoughts, feelings, hopes, fears and dreams. The role of the listener is to listen without judgment to what is being revealed and respond with uncritical acceptance. The listener does his/her best to grasp and understand what is being disclosed. Importantly, the listener must be aware of the emotional significance of the other person taking the risk of exposing his/her vulnerable underbelly. When a friend or lover is intimate with you, you hold their heart in your hands. Both listener and speaker must value the privilege of sharing intimate moments with each other.

by Rosie King

of solace, comfort, peace and contentment followed by elevation of mood, hope and excitement. The listener feels trusted, competent, perceptive, caring, wise and helpful. Ultimately the couple feels close, connected and uniquely known by each other. But intimacy is risky business. While we crave moments of love, closeness and tenderness, at the critical point we often draw back. We are afraid of closeness because the closer you come to somebody, the greater the potential for being rejected and getting hurt. It is our fear of pain that often prevents us from building true intimacy. Yet there is no such thing as painless, risk-free love. It is safe to assume that most of us have been hurt in relationships. Although many people say they want intimacy, they are afraid of getting too close. They say “I’ll just keep this little bit of myself back so I won’t get hurt this time.” This is the way we build walls around our hearts to protect ourselves from anyone on the outside getting in to hurt us. But that same wall which keeps pain out, keeps us stuck inside on our own. The result? Loneliness sets in and the chance for true intimacy and deep love is missed. Being intimate means taking a risk but the risk is worth it. For most men opportunities for intimacy are limited. Society doesn’t encourage males to share their intimate thoughts or show their feelings. When a diagnosis of cancer has been made, what is a man to do with his feelings of grief, fear and loss? If you ask a man who his best friend is and he is likely to reply his wife. She is the person he feels safest with. Yet many men facing cancer shut up like clams even with their wives, denying themselves the comfort and reassurance that mutual sharing brings. A crisis like this can be an opportunity for couples to open up to each other and deepen their relationship or it can tear them apart. So try to keep the lines of communication open between you and your partner. Talk about what you’ve learned about your condition and everything else besides. If you feel you aren’t coping, talk to your surgeon or your GP about getting some counselling. And of course there’s lots of support to be found at your local Prostate Cancer Support Group. Remember you don’t have to do this on your own.

Support Group Meetings for 2008. n Wednesday May 7th

Dr Gerald Fogarty “Modern advances in radiotherapy for prostate cancer” n Wednesday August 6th

Dr Lisa Horvath “What’s new in prostate cancer research” n Wednesday November 5th

According to Stephen Levine author of Demystifying Love, intimacy is ‘the transient, private pleasure of connection which occurs simultaneously in the speaker and the listener’. How do you know if you have experienced intimacy? When you are being truly intimate the person who is speaking feels known, understood and accepted with feelings

To be confirmed

Meetings from 7pm to 9pm Level 4, Function Room, St Vincent’s Clinic

Mandy’s Story The day that Martin was diagnosed with prostate cancer is a day I will never forget. He was just over 40, fit, healthy, full of life and had a great sex life (now that the kids were older), what more could a man want? How could this happen? He had no symptoms. Only older men had prostate cancer!!! Or so I thought. Many thoughts went through my mind that day, but the one that sticks out the most, was “what were we going to tell our 3 boys?” We had no idea what we were in for, what sort of treatment might be required, what the outcome may be, or even the possibility that nothing could be done at all, but I knew I had to be strong for him and what ever he was to go through. We held off telling the kids anything until we knew what was going to happen.

Good news, there was an excellent chance, because of early detection, that he would regain full bladder control and sexual function after surgery. Now we had all the facts on what was going to happen, we told our boys their father had prostate cancer. They asked the question “is Dad going to die?” and we were quite confident to tell them “absolutely not”. It still haunts me to this day if we had to tell them any different. That is why Martin is my hero, by regular PSA tests he not only saved his own life, but he saved me, and our 3 beautiful boys, from a life without him. Martin is now 45; he is fit, healthy, full of life and still has a great sex life. What more could a man want?

And so began our journey into the world of prostate cancer. The specialist appointment was made, and it was a day that I dreaded. What would he tell us? Would it be Good, Bad or Ugly? Good News, my wonderful husband had caught it early (he had regular PSA tests from 40 years of age as his grandfather died from prostate cancer) and he was able to be treated by having surgery (Radical Prostatectomy).

Lyn’s Story In 1993 at the age of 52 Michael went to the Urologist in regards to having a vasectomy. Just as he was about to leave the Urologist asked him had he ever had his prostate checked. Back then, Michael (like most men) had never heard about prostate checks or a PSA test. The Urologist performed a DRE and felt an abnormality in the prostate. He also ordered a PSA test which was to come back higher than normal. So instead of booking in for a vasectomy, Michael walked out of the surgery booked for a prostate biopsy. You can imagine the shock and disbelief, that one minute we are talking about a simple procedure and then the next, the possibility of having cancer. He had no symptoms. Michael had the biopsy which did confirm not only prostate cancer but that it was an aggressive tumour – a gleason 9. Michael’s reaction was one of anger. When Michael was diagnosed I didn’t process it immediately as I was dealing with his anger. I just went through the motions. We both agreed to tell the children and at all times include them in all discussions. I think I was fortunate as at that time I had been doing a lot of self-awareness courses and felt Michael would benefit in coming along. At first he declined but did attend and before his operation he realised that it might help. Through these courses I learnt that each of us has our own journey and unfortunately this was Michael’s. It made sense to me. I also realised that I was not responsible for his cancer, that I didn’t need to feel guilty but that I just needed to be there for him and I was. Michael underwent a radical prostatectomy. The pathology showed that the tumour had escaped the prostate and he had positive margins. Michael went onto hormone therapy but refused to have adjuvant radiotherapy. That was his decision and you live with that. As he said “it’s his body”. What could you do, I accepted his decision and didn’t argue with him. The first couple of years Michael was so angry and dealing with that was the hardest part. In those early days I never thought Michael would die but because of the cancer Michael had to change – change his attitude towards his family and his life. Once he accepted this, his anger slowly dissipated and he was able to concentrate on the disease. He went back to Tai Chi, complementary medicine, reading and talking to people who had cancer. You could see the change. We had some wonderful years travelling overseas with friends.

For me it was like a light bulb had gone on for him and it was such a relief because I believed that this turnaround would save him. I suppose the hardest part was the isolation of not knowing what to expect or what you had to do, you feel so helpless. In the early years this wasn’t a problem but as time went on and Michael got sicker I would wander around the apartment thinking there must be something I could do. I coped with the chemotherapy and the hair loss etc didn’t matter as it was part of his treatment. His last year was the year we stepped up the care and the love. I had our wonderful friends visit everyday or every other day. The last year was full of visitors and parties. Even though Michael couldn’t go they came to him. It filled my heart with joy because I knew it made Michael feel a little better to talk about old days. Our children, Clare and Nathan were there for him and he knew that, he knew they loved him. Nathan went part-time with work to be around if he needed him. Michael loved his grandson who at the age of 2 would climb all over him. Even though you could see that it probably was hurting Michael he just loved it. When his granddaughter was born at 2am, Michael showed strength and got out of bed, dressed in his pink shirt and went to the hospital to meet her. The palliative care team from St Vincent’s Hospice was my saving grace, it gave me something to hold onto. They came and reorganised our place to make it easier for Michael. I set up a bed next to him and I would be on night patrol. I didn’t want anyone else to sit with me as it was suggested from Jane, our nurse. I was totally conscious of his every movement. I would jump into his bed as some nights I was so tired but I wanted to make sure he was alright. There were some nights that I would wake up and it was so quiet I would panic and get up and just place my hand on his chest to make sure he was breathing. Those nights were hard, it made you think there will be an end. But you got up the next day and did it all over again and I would still do it and continue to do it. Michael died a lovely person. For a few months after Michael died I would wake up and feel this pressure on my arm or my back and I knew it was him. It was so reassuring, weird I know. I still miss him. Michael died on the 19th August 2006. Ironically on the day he died, “The Good Weekend” gave the latest prostate cancer statistics. In lieu of flowers, family and friends donated to the St Vincent’s Prostate Cancer Centre. By doing this I know Michael is helping other men through awareness and research of the disease.

World Leader in Robotic Surgery Visits St Vincents Dr Vip Patel, one of the world leaders in robotic radical prostatectomy surgery, was the visiting “Steggles Fellow” at a conference held at St Vincent’s Private Hospital and Clinic at the end of 2007. During the two and a half day conference Dr Patel performed several live operations as well as presenting interesting lectures. The conference, convened by A/Prof. Phillip Stricker was attended by Urologists from Australia and New Zealand. Dr Patel with A/Prof Stricker - conference convenor

Dr Patel has recently moved from Ohio to Florida where he has set up a state of the art robotic centre. He is an internationally recognised expert in minimally invasive laparoscopic and robotic urologic surgery. His experience of more than 2,000 robotic prostatectomies is one of the largest in the world. For over 20 years, the St Vincent’s Urology Department has continued the tradition of the Steggles Fellowship. This commenced after Mr Steggles made a generous donation dedicated to the education of urologists at St Vincent’s for improving the delivery of care particularly for urological cancers. The conference is held every two years and includes an international speaker who is at the forefront of their speciality.

Dr Peter Duval MB, BS, FRANZCR, FRCR 5.9.40 - 30.11.07 Dr Peter Duval graduated in Medicine in 1966 at Sydney University and proceeded onto advanced training in Radiation Oncology at Royal Prince Alfred Hospital. After working in London and again at RPA, Peter started work at St Vincent’s Hospital in 1993 where he later became Radiation Oncology Department Director of St Vincent’s Hospital and Clinic. Peter went on to develop subspecialty expertise in brachytherapy – pioneering programmes in both HDR and Iodine seed techniques for prostate cancer.

Peter truly enjoyed his specialist medical career. Nonetheless he found time for his love of cars and sailing and, his greatest passion, skiing. He was an active member of the Volunteer Thredbo Ski Patrol for 38 years; vice Captain for 9 and Captain for the last 3 years.

During this time Peter was a visiting consultant at numerous hospitals and ran outreach clinics in Orange for 31 years (reportedly a record for any visiting specialist to a regional community) and subsequently also Bathurst. He served as a director on the Can Assist Board (previously CPAS) for 35 years and prior to his retirement held the position of Vice President. Peter played an instrumental role in charitable organisations efforts to provide services to regional cancer patients – particularly education, accommodation, and support groups. He was the driving force for the development of freestanding outpatient treatment clinics in Orange (Anson Cottage) and Bathurst (Daffodil Lodge) and accommodation facilities in Wagga Wagga (Lillier Lodge).

Peter was active right up until the last week, when he was admitted to St Vincent’s Private Dr Peter Duvall Hospital. During this admission he was awarded the National Medal by the Commonwealth Government. This award is normally reserved for those in uniform and is for diligent long service in an organisation that protects life and property at risk to themselves. Peter was overwhelmed. Peter will be missed by family, colleagues and grateful patients. Dr Steven Cooper – Radiation Oncologist St Vincent’s Hospital

Prominent Urologist Retires From St Vincent’s Hospital At the end of 2007 Dr David Golovsky MB BS (Syd) FRCS FRACS retired from practising General Urology at St Vincent’s Hospital. Dr Golovsky graduated from the University of Sydney, before training at the College of Surgeons in London and returned to Australia

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in 1974 to begin work at Prince Henry Hospital. David started work at St Vincent’s over 30 years ago and as well as his role in further developing urology at St Vincent’s he has been: z Past President of the Urological Society of Australasia z Past Chairman of the Department of Urology at St Vincent’s z Past Chairman of the Division of Surgery at St Vincent’s z Convenor of the Societe International D’Urologie world congress held in Sydney in 1994 z Convenor of two national USA meetings z Experienced andrologist and an authority on male reproductive surgery z Initiated the Registrar training scheme at St Vincent’s Hospital z Part of the founding committee of the Urological Society Foundation z Past Chair of the Scientific Advisory committee of St Vincent’s Clinic Dr Golovsky has always been a fine surgeon and teacher of medical students, interns, registrars and all his colleagues. He will continue to work in the area of male infertility and be consulting with IVF Australia. We wish him well but are saddened to lose his professionalism, experience and humour. A/Prof Phillip Stricker - Urologist St Vincents Clinic Dr David Golovsky