cancel
Showing results for 
Search instead for 
Did you mean: 

Community Conversations 2019

Content Creator
0 0 16

PCFA hosted its fourth annual Community Conversations this September during Prostate Cancer Awareness month. Hosted by MC Julie McCrossin, this year’s event was held at the Garvan Institute of Medical Research in Sydney. Community Conversations brings together prostate cancer patients and their families with leading scientists, clinicians and health professionals. The forum promotes conversations about prostate cancer between 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 with a cup of coffee or tea, people could connect, share experiences and learn from each other. In between the presentations from experts, we heard from patients and their families about their personal experience of life after a prostate cancer diagnosis.

“The information was empowering and comforting, giving us direction and confidence with which to move forward. We walked out and felt we had won lotto, that the timing was so perfect for us… we feel that the hours spent at the Garvan Institute session will be invaluable to help with the challenges ahead of us.” Partner of a man with prostate cancer who attended the event.

This week’s blog summarises key points from the invited presentations at the 2019 Community Conversations.

Management of prostate cancer – Dr Amy Hayden

The first talk of the day was an update on the clinical management of prostate cancer by Dr Amy Hayden. Dr Hayden is a radiation oncologist, working at Blacktown Cancer and Haematology Centre and Crown Princess Mary Cancer Centre in Sydney. She has published several national guidelines for radiotherapy in prostate cancer and is actively involved in teaching, research and clinical trials.

Dr Hayden believes that prostate cancer management in Australia has been improving over the recent years – but we still have further to go. In her opinion, there is more to managing prostate cancer than just the treatment given. Clinicians must support their patients with information that is clear and meaningful to them. Quality of prostate cancer care is very important, and equity is a big issue in Australia. High quality treatment should be available to all, regardless of wealth and where someone lives. Improving prostate cancer care means tackling issues of equity in Australia.

Since prostate cancer treatments can have difficult side effects, treatment decisions are a balancing act. If there is little expected benefit, then avoiding or reducing this treatment is possible. This is balanced with providing treatment that should be the best standard with as few side effects as possible. Over the past decade, research has led to improvements in this balancing act of providing best care.

Dr Hayden described the benefits of using MRI during the diagnosis of prostate cancer. MRI before a biopsy has become increasingly popular since being subsidised last year. Using MRI can help detect clinically significant tumours and reduce overdiagnosis. She also described the process of radiomics – using quantitative imaging and machine learning to predict tumour location, density and grade.

Dr Hayden then detailed the most common management options for localised prostate cancer: active surveillance, radiotherapy and surgery. Hormone therapy (androgen deprivation therapy, ADT) is use by men with both localised and advanced prostate cancer. She went on to describe the journey for men with advanced prostate cancer who often have chemotherapy and second-line hormone treatments such as Enzalutamide.

There are clinical trials run in Australia testing new imaging technologies and treatments for prostate cancer. These trials may benefit some men with prostate cancer, but it’s not always easy to join. Many of these trials are testing treatments for men with the late stage of disease and there are specific requirements for entry. Dr Hayden described ANZUP and TROG, two Australian organisations that promote clinical trials for prostate cancer.

Clinical trials recruiting patients in Australia must be registered at the Australian New Zealand Clinical Trials Registry. You can search this registry (with a bit of practice) using this link. If you find a trial that you are interested in joining, it’s best to print the details and discuss with your doctors.

Advances in Imaging and Therapy in Prostate Cancer – A/Prof Louise Emmet3661217116?profile=RESIZE_710x

A/Prof Louise Emmett is a nuclear medicine physician at St Vincent's Public Hospital and a researcher at the University of New South Wales. She is heavily involved in prostate cancer research for imaging and therapy.

A/Prof Emmett explained PET-PSMA scans for prostate cancer. This new technology is one of the most sensitive scans for prostate cancer cells. It can highlight small tumours that have spread beyond the prostate gland. PET-PSMA scans are very popular in Australia, but not so much in the US, where they remain too expensive for most. A/Prof Emmett describes PSMA as the perfect target for detecting and treating prostate cancer. 95% of prostate cancers have tumours with PSMA on their cell surface. Cancerous cells have 1000 times more PSMA than normal prostate cells, making it easier to target them with radiation treatment.

A/Prof Emmett is the Director of Theranostics at St Vincents Hospital in Sydney. Theranostics combines a diagnostic scan with a therapy. For example, the experimental Lutetium-PSMA treatment starts with a scan to detect tumours based on their production of PSMA protein, then a radioactive treatment to target and kill cells with the PSMA protein. Lutetium-PMSA is being testing in the TheraP clinical trial, funded by PCFA. This trial has finished recruiting patients, and we await the results from the 200 men who have been treated.

Salvage radiotherapy for men with prostate cancer was also described. This is radiotherapy treatment given after surgery, for men whose cancer has returned. Salvage radiotherapy works well in some men, reducing the cancer’s spread. Unfortunately, it does not work so well in all men. A/Prof Emmett’s own research has shown that a PSMA-PET scan can predict who will benefit most from salvage radiotherapy. Men whose PSA is rising after surgery but their PSMA-PET scan showed no tumours were most likely to benefit from this treatment.

A/Prof Emmett described a new clinical trial that is in the planning stage. The ENZA-p trial, run through ANZUP, will test a combination of Lutetium-PSMA and Enzalutamide. When this trial starts, it will recruit men whose metastatic prostate cancer no longer responds to hormone therapy (ADT), but who have not yet had chemotherapy. It’s anticipated that this trial will open in the next 12 months and recruit approximately 160 patients through 7 treatment centres in Australia.

Exercise medicine for prostate cancer – Prof Rob Newton

Prof Rob Newton is an accredited exercise physiologist and researcher at Edith Cowan University in Western Australia. He heads a world-leading research group who have demonstrated the benefits of exercise as a medicine to improve treatment side effects and quality-of-life for men with prostate cancer.

Prof Newton’s talk at Community Conversations described the benefits of exercise and exercise as a medicine for men with prostate cancer. He defines exercise medicine as the physical assessment and prescription of exercise specifically for the prevention or treatment of injury or illness.

Exercise medicine for prostate cancer is usually a combination of resistance training and aerobic exercise. Resistance training involves using weights to build muscle strength. Prof Newton recommends resistance training using 6 to 12 repetitions as a maximum. Aerobic exercise is activity sustained over a period of time. It involves large groups of muscles. Examples are walking, jogging, running, cycling and swimming. Prof Newton notes that aerobic exercise must be vigorous to benefit. He describes vigorous exercise as that which is borderline uncomfortable, leaving you short of breath and making it difficult to speak. Research shows that vigorous exercise is quite beneficial. Men who did 3 hours or more per week of vigorous activity have less than half the risk of dying from prostate cancer. As well as reducing side effects, it’s predicted that the right types of exercise can slow prostate tumour growth.

Prof Newton’s research has shown that exercise medicine benefits men with prostate cancer in numerous different ways. It can improve side effects from other treatments, improve quality-of-life, bone and muscle health and general fitness. In particular, exercise can mitigate some of the harmful side effects of hormone therapy. However, an exercise program will need to be specifically tailored to the needs of each man. An example is that aerobic exercise is good for general health and fitness, but by itself, is not enough to inhibit the side effects of hormone therapy.

“All exercise is beneficial, but we need to use targeted exercise to have specific benefits for the patient”. Prof Rob Newton

Aside from showing that tailored exercise programs benefit men with prostate cancer, Prof Newton’s research as been asking how exercise medicine works. Some of the possible mechanisms are improving immune function, reducing inflammation and oxidative stress, changing the way muscle cells interact with testosterone and changing the range of genes that are switched on inside cells. Studies in animals have shown that exercise has a massive effect on the progression of cancer. One reason this happens is by the actions of natural killer cells. These immune cells find and attack tumours cells. For an animal that exercises a lot (such as in experiments with mice), the natural killer cells become better at killing the tumour cells.

Prof Newton is one of the authors on the latest position statement on exercise medicine from Exercise and Sports Science Australia. This document is aimed at clinicians but contains very useful information for men with prostate cancer. The summarised conclusions made by this organisation state that:

“While for the majority, multimodal, moderate to high intensity exercise will be appropriate, there is no set prescription and total weekly dosage that would be considered evidence-based for all cancer patients. Targeted exercise prescription, which includes the provision of behaviour change advice and support, is needed to ensure greatest benefit (as defined by the patient) in the short and longer term, with low risk of harm.”

For men with prostate cancer, Prof Newton recommends an appointment with an accredited exercise physiologist to design a tailored exercise program that will make a difference whilst reducing the risks of harm. An exercise physiologist can help recommend the right types of exercise to each person who will benefit from it. This link can help to find an exercise physiologist in your area.

Psychosocial care for men with prostate cancer - Prof Suzanne Chambers3661212145?profile=RESIZE_710x

Prof Chambers is a health psychologist and registered nurse with 30 years of experience in psychological support for people with cancer. She is also a researcher and the Dean of the Faculty of Health at University of Technology Sydney. Prof Chambers’ research specialty is the fields of psycho-oncology and prostate cancer survivorship.

Prof Chambers describes the experience of cancer as a major life stress. The disease threatens survival, lifestyles, relationships and sense of self. This is particularly so for prostate cancer, which leads to many difficult life changes. One of the big surprises for men with prostate cancer is that they need to make decisions about their treatment. They must learn a lot of new medical information, including long and complicated medical terms, to help them make these decisions and understand their disease. After diagnosis men often feel shock, confusion, anxiety, depression and anger. There is a role for psychosocial care in helping these men cope with all these sudden challenges.

After treatment for localised prostate cancer, many men struggle with side effects such as incontinence and sexual problems. They feel abandoned by the health system that doesn’t have good answers for these issues. They sometimes blame themselves or their doctors for “making the wrong decision” about treatment. Psychosocial care may be of help to these men, particularly if they are distressed.

Psychosocial care is a whole-person approach to cancer care. It aims to provide psychological, social and spiritual care. A range of support services can provide psychosocial care, such as psychologists, exercise physiologists and peer support (such as support groups or online communities).

Psychosocial support can help men with prostate cancer deal with stress. Ignoring stress can lead to feelings of tiredness, loss of stamina, emotional distress and strained relationships. Relaxation techniques such as meditation can help with stress. Other enjoyable activities such as reading, golf, music or tennis can also benefit these men and their families.

Prof Chambers offered some of her coping tips:

Variety:  Use a range of coping strategies to suit different situations.

Flexibility and Experimenting:  Try to change strategies as the situation changes and try looking at new ways of coping if one way hasn’t been helping.

Balance:  Don’t overly rely on only one main way of coping, for example complete avoidance versus constant confrontation. The aim is to take a balanced approached.

“Every person (patient and family) responds to the challenge of a cancer diagnosis in their own individual way. There are no right or wrong ways to react.” Prof Suzanne Chambers

PCFA has recently released a position statement on screening for distress and psychosocial care. This statement seeks to embed distress screening and psychosocial care where appropriate into the standard management of prostate cancer in Australia. The statement is:

  1. After the diagnosis of prostate cancer and regularly through treatment and surveillance, men who have been diagnosed with prostate cancer should be screened for distress and their psychological and quality of life concerns should be explored.
  2. Men who have high levels of distress should be further evaluated for anxiety and/or depression and evidence of suicidality.
  3. Men who have high distress or need for support should be referred to evidence-based intervention matched to their individual needs and preferences for support.
  4. Research is needed to develop effective methods to identify partners of men with prostate cancer with high distress or who are at risk of high distress as well as effective interventions for partners and for couples where the man has a diagnosis of prostate cancer.
  5. Investment in prostate cancer survivorship research is a national health priority.
House Rules

To help keep this community a welcoming, supportive and caring place we have put together a small list of dos and don'ts for you to think about when posting on our forum, research blog or video gallery. For further information please see our  terms and conditions.

Adhere to PCFA’s five core values of Integrity, Optimism, Compassion, Respect and Commitment.

Our online forum is for you to share experiences with others and does not contain specific medical, counselling or legal advice.  If you require professional advice specific to your individual circumstances we encourage you to see a medical professional, legal professional or counsellor.

No commercial or promotional activity. While members may share information about resources they have found helpful, the PCFA Online Community forum should not be used for the promotion of goods and services. This includes commercial entities passing themselves off as individuals and people who frequently post links to external health professionals or other services.

Be kind to each other - many people using the community are going through a difficult time. A few kind words can go a long way. Please welcome new posters – it can be very nerve-wracking to post on the forum for the first time.

If you or someone you know is suffering from mental health issues, such as depression or anxiety, we encourage you to seek assistance and contact Beyond Blue Tel:1300 224 636 or Lifeline Tel:13 11 14

Speak your mind freely, but please be sensitive to the feelings and experiences of others - you might not always agree, but you can agree to disagree in a peaceful manner.

Don't use offensive language -if a user is found to be using offensive language during their conversations the moderators reserve the right to edit the thread, without warning.

Don't use all capital letters in your posts - it's considered ‘shouting' online and it makes posts difficult to read.

Give each other the benefit of the doubt - please remember that it is all too easy for the tone and meaning of posts to be misinterpreted. Think carefully before replying to a discussion. it It is important to remember that things written rather than said can feel much stronger, so please bear this in mind when reading other people's messages.

Please respect the moderators - their job is to keep the forum safe and constructive so that everybody gets to have his or her fair say.

Stay on topic - try to focus on the original topic. In particular, don't change subject in the middle of an existing thread - just start a new thread.

Read what's already on the forum before posting - you may be repeating what others have already said or asked.

We want PCFA's Online Community to be a secure and helpful environment for all of the community. So please remember that by using PCFA's Online Community you are agreeing to follow our terms and conditions.

Labels