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Community Conversations 2018, a community forum on prostate cancer.

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On the 25th of May PCFA hosted its third annual Community Conversations. This year we partnered with the Peter MacCallum Cancer Centre, a world-leading cancer treatment centre and research institute, who hosted the day in Melbourne, Victoria. Community Conversations, facilitated by MC Julie McCrossin, brought together prostate cancer patients and their families with leading scientists, clinicians and health professionals. The forum promotes a conversation about prostate cancer between all these people, so that we can learn from each other.

An important part of Community Conversations is the actual conversation between the people who attend. Starting the day with a cup of tea allowed people to connect, share experiences and learn from each other. In between the presentations from experts, we heard from patients and their carers and families, about their personal experience of life after a prostate cancer diagnosis.

Dr Ben Tran

Dr Ben Tran started the talks by giving an update on the current clinical management of prostate cancer in Australia. Dr Tran is a medical oncologist, who treats men with advanced prostate cancer at the Peter MacCallum Cancer Centre and Epworth hospital. He is also a researcher at the Walter and Eliza Hall Institute of Medical Research. Dr Tran's speciality is treating men with advanced prostate cancer and research to find better treatments for these men. His talk described the tests and treatments available, and in development ,for men with localised or advanced prostate cancer in Australia.

Dr Tran spoke about testosterone as the main feeder of prostate cancer. Prostate tumour cells rely on signalling through the testosterone receptor (androgen receptor) for their survival and growth. In the past, surgery to remove testicles was a common treatment for advanced prostate cancer. This removes the production of testosterone in the body. However, this did not cure advanced prostate cancer. Now advanced prostate cancer is treated with drugs that stop testosterone being made, or from working. But this does not cure prostate cancer either. The reason is that after a period of time, the tumours sometimes start to produce their own testosterone. In this way, prostate cancer becomes resistant to the initial drugs and treatments that normally stop testosterone from being made. This stage is called castration-resistant prostate cancer. Many of the recently discovered treatments are designed to treat castration-resistant prostate cancer. Dr Tran presented a timeline of recent drug and treatment approvals. These include Sipuleucel-T (Provenge) in 2010, Abiraterone (Zytiga) in 2011, Denosumab (Xgeva) in 2011, Enzalutamide (Xtandi) in 2012 and Radium-223 (Xofigo) in 2013. Sipuleucel-T is not available in Australia and Radium-223 is approved for use, but remains expensive until listing on the PBS. Denosumab reduces the chances of skeletal fractures and pain for men with prostate cancer spread by metastasis to their bones.

In discussing the new drugs and treatments on the horizon, Dr Tran talked about the possibility of personalised medicine. This involves a patient first undergoing tests to determine the best treatment for them, guiding the next steps in their management. His opinion was that personalised medicine is more difficult to achieve for prostate cancer than other cancers. This is due to there being few specific gene mutations to give information, the difficulty in getting up-to-date tumour specimens and the long duration between the original surgery and time when testing is needed. Dr Tran considered the drug Olaparib (Lynparza) as a potential success story, which we hope will soon result in approval for as a new prostate cancer drug.

Dr Niall Corcoran

Dr Niall Corcoran is a Urologist and prostate cancer researcher. His research interests include the molecular drivers of lethal prostate cancer. Dr Corcoran is the lead investigator of a prostate cancer clinical trial at Epworth Prostate Centre.  

Dr Corcoran spoke about genome sequencing. This refers to determining the DNA code for all the genes and DNA for one person (or for that person's tumour). This is different from genetic tests, which only determine the sequence of a few genes. Genomic sequencing research has come a long way in the past 20 years. The first genome was sequenced in 2001 by the National Institute of Health (NIH) in the US. It cost 3 billion dollars and took 15 years to complete. Today a human genome can be sequenced in approximately 3 days, costing between $1,500 to $4,500. One way that genome sequencing can supply new information about a tumour is to compare the genome of the person (their entire DNA sequence) and the DNA of their tumour. Tumour DNA is mostly identical to the person's DNA. But there are some differences - mutations in specific genes - that have caused the cancer to occur. By comparing the person's DNA to their tumour, we can ask which DNA changes have arisen in the tumour. This tells us a lot about the characteristics of that tumour.

Dr Corcoran's research uses genomic analysis to ask what drives prostate cancer's resistance to treatments. He compares tumour samples before and after treatment resistance has occurred, to see what DNA changes are associated with treatment resistance. This asks the question - what has changed within the DNA code that is driving resistance?

Dr Corcoran also described a gene called tp53. This gene gives rise to the p53 protein, that we know plays an important role in defence against cancer. He calls this the most studied protein in history. It recognises when there is damage to a cell. p53 can stop cell division and lead to cell death when damage is present. When mutations in the tp53 gene disrupt the function of the p53 protein, this allows the cell to continue dividing in the presence of damage - one of the hallmarks of cancer. Mutations in p53 are very common in prostate cancer. Dr Corcoran describes a 'secret recipe of metastasis" as being mutations in two key types of genes involved in DNA repair. This combination is common in metastatic tumours and is thought to be a key driver of resistance to treatments.

Ms Gay Corbett

Gay Corbett is a Prostate Cancer Specialist Nurse at the Ballarat Health Services. Her role is to help men navigate through the diagnosis and treatment of prostate cancer. Ms Corbett described the many challenges for sex and intimacy that arise with prostate cancer treatments. Prostate surgery and androgen deprivation therapy (ADT) usually have a debilitating effect on sex. Radiotherapy can also affect sex after treatment. Long term ADT often means the end of sex, at least as it was, before the drugs. Men often recover some sexual function after surgery and after short term ADT

After diagnosis, men are often quite worried about their tumour and are concentrating most on getting the cancer treated. But after treatment, the reality of dealing with side effects that diminish their sex life becomes apparent. While some are soon able to re-establish their sex life, similar to before treatment, many men discover that their sex life is not going back to "normal". Ms Corbett's advice is that men should expect that their sex life will not return to exactly as it was after prostate cancer treatment. They need to expect that "normal now means something different". Some of the changes after surgery include dry ejaculation, penile shrinkage, erectile dysfunction (unable to obtain complete erection), climacturia (loss of urine at orgasm), painful orgasm and loss of libido/desire.

At Community Conversations, Ms Corbett spoke in detail about the effects of prostate cancer and its treatment on intimacy between a couples. She described 5 myths about sex and intimacy after prostate cancer:

  • Men can't have an orgasm without an erection
  • Older people don't have sex
  • Communication isn't affected by lack of intimacy
  • Sex is finished when erectile dysfunction occurs
  • Erectile dysfunction only impacts on the affected person
  • Sex is only satisfying with an erect penis

Ms Corbett regularly consults with men who are being treated for sexual problems after prostate cancer treatment. She supports them as they try various treatments that can help restore some sexual function. Most of these treatments aim to restore erections. However, even with the ability to achieve an erection, this does not mean that sex has gone back to normal. Erection problems can be treated with drugs, such as Viagra, vacuum erection devices, injected drugs and surgical implants. Ms Corbett described the pros and cons of each treatment. She explained how injecting drugs into the base of the penis was surprisingly easy and painless, making this as good option for many men.

Dr Patricia Neumann

Dr Patricia Neumann is a physiotherapist with a special interest in pelvic floor exercises and exercise as medicine. Dr Neumann gave a passionate and animated talk about the benefits of exercise for men with prostate cancer, and for everyone.

Dr Neumann started with a call-to-action, encouraging everyone to exercise more. More than half of Australian adults do not exercise enough. Less than 1 in 5 people with cancer partake in the recommended level of exercise. Dr Neumann spoke about the general advantages of exercise. Regular exercise improves muscular fitness. This refers to having strong muscles that make you easily able to do day-to-day tasks - such as getting out of a chair without needing your arms or lifting a golf-bag into the car. Exercise also improves aerobic fitness. This type of fitness gets our heart pumping, giving us stamina to do physical activities. Good exercise habits involve aerobic fitness activities (walking, running, cycling, swimming) as well as some weight-training to build muscles.

Dr Neumann also describes exercise as a medicine that can prevent and help to treat a number of diseases. Exercise can decrease depression, reduce the risk of getting diabetes, high blood pressure, heart disease, colon cancer and stroke. Regular exercise is known to reduce the risk of getting cancer. For some cancers, it's been shown that regular exercise can help a person cope with side effects, improve their health and even increase life span. The good news is that exercise doesn't have nasty side effects, like many drugs. Dr Neumann also stated that the less fit that you are, the more benefit there is in starting to exercise.

Exercise has many benefits for prostate cancer patients. Physiotherapists can recommend specific exercise programs before and after prostate surgery to help the recovery. In particular, pelvic floor exercises can help promote urinary continence. Many men use these exercises to help them regain control over urination after prostate surgery. The best way to make sure pelvic floor exercises are effective is to get advice from a physiotherapist with experience in pelvis floor care for men. Exercise can also help to counteract the effects of prostate cancer treatment. Specifically, exercise can help with reducing fatigue, improving body composition and bone health for men taking androgen deprivation therapy.

A/Prof Sue Evans

A/Prof Sue Evans is the Director of the Centre for Research Excellence in Patient Safety at Monash University. She is also the convenor of the Victorian and Australian/New Zealand Prostate Cancer Outcome Registries.

To explain what a registry does, A/Prof Evans quoted Dr Ralph Brindis who said "Science tells us what we can do; Guidelines what we should do; Registries what we are actually doing". Registries provide us with essential data to track the patterns in diagnosis, treatment and outcomes from prostate cancer Australia-wide. This helps us to understand the quality of care for prostate cancer patients and detect areas that need improvement. Registries can show where there are differences in the experiences and outcomes, for example the experiences of men living in remote areas compare to living in cities. The information can also help guide policy decisions and planning for the future care of men with prostate cancer.

A/Prof Evans showed some data from the registries describing patterns of prostate cancer diagnosis, treatment and outcomes. These data showed that while transperineal biopsies were rarely done in 2013, these biopsies have become considerably more popular since then. By 2016, almost half of prostate biopsies were done using this method. Active surveillance for men with low-risk, localised disease is also becoming more popular. Since 2010, the proportion of these men choosing active surveillance has increased, with now approximately 75% choosing this option. There has also been in improvement in prostate surgery outcomes. Since 2010, the number of men with a positive surgical margin has halved. A positive surgical margin means that there is likely to be part of the tumour left behind after surgery.

The registry also tracks quality of life outcomes by phone interviews with men asking about their experiences after diagnosis. These results showed that sexual function is greatly reduced for the majority of men after surgery. Although there is some improvement by the 12-month mark, sex remains problematic for many men for years to come. Although this is something that we already knew from overseas studies and clinical trials, having data from Australia helps us to understand the extent of issues here, to plan for resources needed to address these issues, and to identify areas where men are at a greater disadvantage.

Discussion panel

The day finished with a panel discussion on the topic of living with prostate cancer. This allowed the audience to directly comment and ask questions about the everyday challenges of life after a prostate cancer diagnosis. Panel members Dr Patricia Neumann and Gay Corbett were joined by Amanda Pomery (PCFA's Director of Support and Community Outreach), Dr Bernie Crimmins (a GP with a specialist interest in men's health) and Megan Chiswell (Head of the Cancer Information and Support Service at Cancer Council Victoria).

Dr Crimmins spoke of the role that a GP plays in supporting men with prostate cancer. He described the importance of looking after general health as well as managing the cancer. A GP can help with pain management, information and referrals to support services such as physiotherapists, and discuss decisions that need to be made during prostate cancer management.

Amanda Pomery discussed the support needed for men with prostate cancer. There are over 200,000 Australian men who have been diagnosed with prostate cancer. PCFA helps these men find care and support through the Prostate Cancer Specialist Nurses, support groups, our online community, our resource packs and website, providing evidence-based information about all aspects of prostate cancer management.

Megan Chiswell spoke about the services and support offered by Cancer Council Victoria. Their 13 11 20 number is open from 9am to 5pm. This is a free and confidential service for anyone affected by cancer. Every state has the same service, but run by that state's Cancer Council. The number is staffed by oncology nurses and helps with services such as counselling and information. Cancer Council Victoria also has evidence-based information on their website about all cancers. They help connect people to support services to improve care for cancer patients.

 

This event was the third annual Community Conversations forum. The Peter MacCallum Cancer Centre partnered with PCFA to host and promote the event, ensuring a great success on the day. PCFA are particular grateful for support from the prostate cancer community in Victoria, prostate cancer support groups, and all our speakers who volunteered their time and expertise on the day. We look forward to holding this forum in other states in the coming years.

Videos of each presentation will soon be made available on the Video Gallery.

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