Newsletter


Guest Speaker Report

for July 2019  Newsletter.

Next meeting on 9th. July will feature a presentation by Dr Tracy Brown specialising in Geriatric Medicine

Introduction

Tracy is a Staff Specialist Geriatrician working from the Rankin Park Centre of Hunter New England Health and from a clinic in Windale. Tracy has had to deal with cancer in her own family which prompted her to study the patient and family experience and how to get the best outcomes for all.

Her main topic today will focus on “Enjoying, not Enduring longevity” I am sure there will be many questions to ask since we are all on the same path of noticing changes in our behaviour and relationships so please have these ready so that we can make the best of Tracy’s time and experience and have a fruitful discussion.

Previously: June Meeting          Merlyn Joseph.    Mercy Ships.

Once more Merlyn was unable to escape her nursing duties at the John Hunter so we took the opportunity to have a longer period of announcements and discussion.


June meeting summary

After welcoming newcomers Bill Tunbridge, Brian Spruce and James Russell we moved on to acknowledge the recent work done by John Leeks in representing our group at the Dubbo conference and for initiating contact with the PCFA which in the longer term will bear much fruit. Regrettably, John now moves to the “back bench” where he will no doubt remain very vocal.

New committee members Brad Scott and Wayne Lennan were introduced and where their main roles will be Promotion of our Group and Liason with other groups such as PCFA and Procare to establish a sound working relationship.

Wayne and Brendon represented us at the 2019 Men’s Health Forum run by Hunter New England Health on 13th June and will do so at a meeting with PCFA and other local groups planned for 24th.June.

Pleasingly it was learned that profits from the Biggest ever Blokes Lunch will actually be used in support of prostate cancer patients and support groups in the Hunter.

Our strike rate in attracting new members is rather poor at say 20-30 per annum out of the 800 or so who are diagnosed each year.

According to Professor Jim Denham the Little Prick campaign of the 2007’s is well past its use by date and needs to be replaced. Brad is already working on having a slot of our own on Channel nine which will go a long way towards reaching out to newly diagnosed men.

A video clip shown on Channel 9 TV in January and featuring Professor Denham and promoting a combination of ADT before and after a shorter period of radiation therapy was shown.

The remainder of the meeting involved a lively discussion in which the new members played an important role

Come along to the meetings and offer Support to YOUR Support Group and to the generosity of our Guest Speaker.

Thanks to long-standing member Bela Sido for distributing a proposed poster to be placed on GP’s notice boards AND anywhere else where men congregate. It is now up to the committee to add identifiable logos and colour to make the poster stand out then off to printing and distribution, bearing in mind that not all GP’s will be in favour.

Finally, Arek Daniel, our long-serving webmaster, began the process of handing over maintenance of our web site to Ben Sido.


Potential Future speakers

  • BHP Port Waratah Dismantling process by the chief engineer.
  • Newcastle  Urologist  Paul  Ainsworth.,  Pathology  Douglass Hanly Moir.,

Mike Seddon  :  Guest Speaker Coordinator

Mobile : 0419 599 230

Email: [email protected]

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Promising results from the ENZAMET Clinical Trial

Enzalutamide (Xtandi) is a medicine that helps men with metastatic prostate cancer live longer. In Australia, it’s used by men with late-stage disease, called metastatic castration resistant

prostate cancer. A large Australian and New Zealand clinical trial has now shown that Enzalutamide improves survival times if taken at an earlier stage, with hormone therapy. But unfortunately adding Enzalutamide to hormone therapy brings a higher risk of side effects …

Metastatic prostate cancer is cancer that has spread from the prostate to other parts of the body which can be seen on conventional CT and/or bone scans. Patients with metastatic hormone-sensitive prostate cancer are patients who are starting treatment for metastatic disease and will most likely respond to suppression of the male sex hormone testosterone. Recent advances have shown some patients live longer when docetaxel or abiraterone (an agent that suppresses other male hormones) are added to the testosterone suppression. ENZAMET is the first trial to show a survival benefit from the addition of enzalutamide, and the first to include patients receiving docetaxel chemotherapy at the same time.

Conclusions from the ENZAMET study

The researchers concluded that Enzalutamide treatment with ADT increased survival time and time until cancer progression compared to the anti-androgen drug control. This conclusion is valid for men with metastatic hormone-sensitive prostate cancer. But adding Enzalutamide to ADT led to a higher rate of side effects.

The effects of Enzalutamide on survival were not as strong for men taking chemotherapy, and these men experienced more side effects. More research is necessary to determine whether Enzalutamide is worthwhile for these men.

What does this mean for Australians with prostate cancer?

Enzalutamide cannot yet be prescribed to men with metastatic hormone-sensitive prostate cancer. This needs a new application and approval from the TGA. Listing by the PBS will also be needed to ensure that this drug is subsidised for these men, making it affordable. Unfortunately, these wheels turn slowly; we will need to wait for all these applications to be made and approved before Australian men can be prescribed affordable Enzalutamide with ADT for this stage of prostate cancer.

Further reading:

https://onlinecommunity.pcfa.org.au/research-blog-directory/good-results-from-the-enzamet-clinical-trial


TheraP Clinical Trial

Lutetium-177 PSMA radionuclide therapy (Lu-PSMA) is a new treatment for advanced prostate cancer. Lu-PSMA is a radioactive molecule that specifically attaches to cells with high amounts of PSMA on the surface of the cells. This allows the radioactivity to be delivered mainly to the prostate cancer cells wherever they have spread while sparing most normal tissues. Previous small studies of Lu-PSMA showed promising activity in patients with advanced prostate cancer.

This randomised study will compare Lu-PSMA with a type of chemotherapy called cabazitaxel, which is the standard treatment for advanced prostate cancer when other treatments have stopped working. Half the participants will receive Lu-PSMA and half will receive cabazitaxel. This study will provide further information about the risks and benefits of Lu-PSMA compared with cabazitaxel in men with prostate cancer. We plan to enrol 200 participants in the study in Australia.

TheraP is a partnership between ANZUP Cancer Trials Group and the Prostate Cancer Foundation of Australia (PCFA) with support from the Australian Nuclear Science and Technology Organisation (ANSTO), Endocyte, It’s a Bloke Thing, Movember and CAN4CANCER.

Will this trial be suitable for anyone with prostate cancer? No. This trial is aimed specifically at men with prostate cancer that has spread to other parts of the body and has continued to grow despite standard treatment (including hormonal treatment and previous docetaxel chemotherapy), and where you and your doctor have agreed that the next best step is treatment with another chemotherapy drug called cabazitaxel.

Interested in this trial? Talk to your GP, or go to:

https://www.anzup.org.au/content.aspx?page=lutetiumprostatecancertrial

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When men say “no” to treatment for prostate cancer, they don’t walk away feeling unburdened and free of concern.

Australian Financial Review -24 May 2019

Jill Margo, Health Editor

They’ve made a difficult decision and, as the diagnosis stays with them, they live with complex consequences.

These can be profound and can affect their psychological wellbeing, family, employment, identity and life choices, according to the first study in the world to analyse the hidden experience of men who resisted recommended treatment.

These men were Australian, well educated, economically successful with high health literacy and the means and capacity to challenge medical advice. They hoped they were doing the right thing, but not all were correct. Some still have doubts and others say the sense that they were playing with fire persisted for many years.

For the study, published in the journal BMJ Open, researchers spent hours interviewing the 11 men to try to understand if and how they came to terms with their disease.

All had biopsy-confirmed prostate cancer and all initially declined surgery or radiation, devising their own strategies instead. Most felt pressured by their urologist to have surgery and suspected there was a financial motive in the mix.

In a vulnerable state, having just received a diagnosis, several were told they would soon die without treatment – a prognosis that did not eventuate.

At the time of the interviews, the men were aged between 59 and 78. They had been diagnosed at various points during the past 20 years.

Several felt they had to do something and pursued expensive alternative therapies that had little evidence to support them.

Feeling frightened

While strong enough to make independent decisions and challenge the medical advice they were given, many felt threatened and frightened by their impending death and began to finalise their affairs. Two got divorced.

In one case study a man called Jim, who was diagnosed at 54, said it took him ages to get his head around it. His encounter with the urologist was off-putting, especially as he was booked for immediate surgery without discussing alternatives.

So, he began an extensive investigation of the options, gathering information from multiple sources and having scans. At the time of the interview, eight years had passed since his diagnosis and he continues to monitor his cancer closely.

Although he’s happy with his decision not to have active treatment, there has been a cost. His wife could not accept his decision and this contributed to a debilitating divorce. For him, the psychological impact of resisting surgery is ongoing, it is “a mental thing that you have to deal with every day … it plays on your mind”.

Others concurred, saying it had been an intensely psychological experience with high anxiety and doubt.

In the aftermath of diagnosis, some men extracted themselves from business partnerships leading to loss of income and a change in financial circumstances. A few left work entirely or modified their employment to make time to research and focus on their health and pursue alternative treatments overseas.

One was Bob, who – on being diagnosed at 69 – was told he would be dead in three years if he did not have his prostate removed immediately.

“Dead in three years! That’s all I could think of,” he said. When he asked for a second opinion, he was referred to his urologist’s partner, which prompted him to look for alternative treatments.

For the next few years, he read nothing but medical books, consulted interstate and internationally and went abroad for scans.

He withdrew from part of his business, would wake at 3 am, and felt alone because he didn’t have a doctor he believed in.

At the time of his interview, seven years had passed since his diagnosis and his cancer had not changed in any way. But he’d changed: sleeplessness was still there and so was the doubt.

Side effects

Some men were more focused on the side effects of treatment rather than death. As one put it, “I was very worried about the possibility of long-term incontinence. The idea of having to wear pads in my underpants for possibly the rest of my life was not attractive.”

The study, which included men from around the country, was led by Professor Kirsten McCaffery, director of Sydney Health Literacy Lab, and one of the lead investigators at Wiser Healthcare, University of Sydney.

She says the accounts given by these men usually remain hidden partly because it is difficult to find men who feel they may have been over-diagnosed and who then decided not to be treated.

The treatment was declared a success and he was sent home. But a year later he was in trouble.

In contrast to most cancer patients, she says these men did not perceive their diagnosis as life-saving or life-affirming.

Some had their PSA (blood tested for prostate cancer) without their knowledge. They felt uninformed about their options and unsupported throughout the process of deciding what to do. Ultimately, this left them feeling disillusioned and distrustful towards the medical profession.

But for doctors on the other side of the desk, the correct decision is not always crystal clear. To reduce risk and be safe, they sometimes suggest treatment, even if it might be over-treatment.

Their difficulty predicting which cancers will not progress is reflected in current estimates drawn from the largest studies available, which say 41 per cent of prostate cancers are not destined to cause illness or death.

Uncertainty and angst

Of the 11 men, two went on to have surgery and one progressed to radiation treatment.

In their interviews, these men described significant uncertainty and angst about their decision to delay. They had a sophisticated understanding and recognised they would never know if they had made the right decision. Their guilt, questioning and uncertainty were significant and unresolvable.

One was Peter, who was diagnosed at 56. While he had resisted having a biopsy for many years, he chose to have an ultrasound and new laser treatment in New York, which cost $30,000.

If I die in the next five years of metastasis then I’ll know I waited too long.

—  One of the men who decided on surgery, who was also a medical doctor

The treatment was declared a success and he was sent home. But a year later he was in trouble. A full-body CT scan revealed potential secondary cancer in his hip. As the laser treatment had ruled out the surgical option, he struggled through hormone treatment and aggressive radiation.

Peter described the process as a rollercoaster. At the time of the interview, it had been two years since his radiation therapy and he still had side effects including some impotence and rectal bleeding.

Reducing his working hours had a big impact and he said he suffered from anxiety attacks so intense sometimes he is almost petrified with fear. He accepts that a biopsy earlier on would have changed his journey and that he probably should have had it.

Questioning decisions

One of the men who decided on surgery was a medical doctor and fully informed of his options. He made the decision after receiving a blood result showing a high level of the marker for prostate cancer.

Using frank language, he described how he couldn’t really tell if he had been over-diagnosed or whether the diagnosis and surgery saved his life.

“There’s a part of me that wonders did I f— myself up because I waited 3½ years or, did I f— myself up because I had the cleanout … I’ll never know.

“If I die in the next five years of metastasis then I’ll know I waited too long, if I die of something else, I won’t know if this never would’ve spread anyway, or they saved my life.”

He had spent much time questioning and reviewing the decisions he’d made. “I had lost a considerable amount of weight; I went to see the urologist and he didn’t say, ‘Because you waited’, but it was implied, that maybe if I had addressed this 3½ years ago …”

As the years passed, others reframed their experiences positively.

“I played that game for about three years, running around the world, then I realised nothing was happening, I was fine,” said one.

I’ve known for five and a half years that I’ve got cancer in me, and I’m still living.

Another said as time went on and he gained more knowledge and information: “Knowing how rigged the medical profession operates in this particular sphere [his anxiety had] sort of gone down.”

Changing practices

At the time of the interviews, eight of the men were suffering no related physical problems. Several reflected on their increasing awareness that their cancer had not progressed, may never do so and might not be the life-threatening scenario that had been presented to them.

Some questioned whether alternative healing had helped or whether the outcome would have been the same regardless.

“I’ve known for 5 ½ years that I’ve got cancer in me, and I’m still living, walking around, no side-effects, no nothing, perhaps I will be OK,” said one.

Professor McCaffery says policies and practices have changed over the past 20 years, and surveillance programs that are now recommended for men with low-risk disease were not a common option when some men in this study were first diagnosed.

“But still, not enough men are informed of the pros and cons by their GP before they take a blood test. Once diagnosed, they continue to be rushed into decisions that need careful consideration at all stages of the journey.

“This  has profound and life-long consequences for them and their families and has to change.”

Jill Margo is an adjunct associate professor at the University of NSW Sydney. _________________________________________________________________________________________

Maintaining positive mental wellbeing in men with prostate cancer and their partners

Excerpt from Beyond Blue publication of the same name.

Following a diagnosis of prostate cancer, you may:

  • feel anxious or nervous • feel sad or teary
  • feel forgetful, vague or numb
  • feel like you are ‘in limbo’ and your mind is in more than one place at once
  • be unable to concentrate
  • feel confused – particularly when trying to understand medical treatments and terminology
  • feel uncertain or indecisive – particularly when trying to understand, and decide between, treatment options • feel anger – “Why me?” “Why now?” “Why didn’t I find out about the cancer earlier?”
  • feel overwhelmed or fearful
  • feel out of control or powerless – experiencing strong emotions can make you feel like you have lost control of your life or are ‘going crazy’
  • lose your appetite
  • over-react to small things or have mood swings
  • have trouble getting to sleep or staying asleep (insomnia)
  • feel tired and fatigued.

How to help someone with anxiety or depression

  1. Look for warning signs – Symptoms of anxiety or depression may be more noticeable to you than to the person in question.
  1. Listen and talk – Ask how he or she is feeling, be attentive during the conversation and make it clear that you are there for support. Try to save your suggestions or advice, however helpful, until later. If he or she does not want to talk, don’t take it personally.
  1. Seek help together – Encourage your friend or loved one to seek help from a doctor or counsellor. Offer to go to the appointment if that will make them feel more comfortable.
  2. Look after yourself – Concern for your partner or friend can also result in your health and wellbeing being negatively affected. Carers need to look after themselves in order to provide the best support possible.

Things to remember:

  • Learn as much as you can about anxiety and depression
  • Monitor yourself and your partner for any symptoms
  • Speak to your doctor about any concerns and possible treatment options
  • Accept support and encouragement from family and friends
  • Continue to socialise if you are able to
  • Talk to others who are going through a similar experience, such as in a support group
  • Be kind to yourself, eat well, exercise regularly, get enough rest and avoid alcohol

Further reading: contact Beyond Blue for a copy of the 24 page publication as per the title above or go to:

http://resources.beyondblue.org.au/prism/file?token=BL/0503

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Have you heard of JimJimJimJim.com?

JimJimJimJim.com is a useful Australian based forum and resource repository. If you have ability to have a look at this site, it may be useful if you have questions that you have not been able to find answers for from other sources.

The site includes videos, many forums where you can speak to other families with interest in mens health and specifically in prostate related health, clinical trial links and information.

Forum site:

http://forums.jimjimjimjim.com/


Dry July

WHEN: July 2019

https://www.dryjuly.com/


Relay for Life – Maitland

WHEN – 28th September, 2019

WHERE – Marcellin Park, Lorn

https://www.cancercouncil.com.a u/event/relay-for-life-maitland-2019/


Outback 4WD Adventure

Driving for Prostate Cancer Research

WHEN: 7 – 14 Sept, 2019

WHERE: Lightning Ridge, NSW

https://charitycarevents.com.au/pc farally/