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Weekly Blog: What we mean by cancer survivorship

PCFA_OC_Manager
Community Manager
Community Manager
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By Tim Baker

There seems to be a great deal of discussion and academic attention being paid to cancer survivorship these days, which is a welcome development.

For many years, the focus of cancer research was on survival times without a great deal of attention paid to how well patients survived. New treatment options and research funding could be validated by increased survival times alone, while many cancer patients reported feeling lost and adrift once the period of intense treatment had past and they were left to fend for themselves.

This is particularly relevant to men with prostate cancer (and especially advanced disease) because we know first-hand that survival comes at a heavy price. The impacts of hormone therapy have been well-documented elsewhere, so I won’t go into detail. But many of you will know what we mean when researchers talk about the “survivorship abyss”, a sense of being left adrift with a suite of alarming side effects from treatment and a declining quality of life and inadequate support.

So, this new focus on the quality of survivorship and how to improve it is welcome. You can see this new focus in services like the PCFA’s telehealth nursing and counselling services, reaching patients who might ordinarily have difficulty accessing such services.

But what do we mean by cancer survivorship and what would improved survivorship look like? The answer will be different for every individual. For me, it means being able to do the things that give me the greatest enjoyment of life – surfing, music, writing. It means being able to maintain social connection and close, quality relationships with friends and family. Appropriate, ongoing psycho-social support is vital, whether that’s seeing a psychologist under a mental health care plan, joining a support group, or just having an inner circle who understand your challenges and know how best to support you.

It also means access to the kinds of supportive therapies that can help maintain quality of life and mitigate the side effects of treatment. I’ve talked and written about this before, but I think it bears repeating. Assembling a team to address needs not covered by mainstream oncology – an exercise physiologist, nutritionist, psychologist, sexual health therapist, massage, acupuncture, music and art therapy, can all play a role in improving outcomes and quality of life for those living with cancer.

I was recently asked to join a panel for the SBS TV show Insight, dedicated to the topic “Outliving Your Prognosis,” and exploring what it’s like to survive longer than your doctors predicted. This sounds like a good news story. Bonus time! A renewed appreciation of life and all its small joys. An appreciation of the everyday beauty all around us in nature, sunrises, a friend’s smile, shared meals, a hug from a loved one. But there are specific challenges to this state as well.

I find it difficult to plan for a future when I have no sense of how long that future might last. Do I plunder my superannuation and draw up an ambitious bucket list to work through? Over time, I find my discipline and commitment to my own exercise, diet and meditation regime faltering at times, without the oversight or direction of someone helping me overcome the lethargy and fatigue of hormone therapy.

Prostate cancer and the side effects of treatment have profoundly impacted my marriage, my family, my career, my mental health, my physical capabilities, and sense of self. It’s … a lot. A care plan as someone with a chronic illness entitles me to five referrals to allied health professionals a year, subsidised by Medicare. But the ongoing costs of seeking the kind of support I feel I need, particularly around exercise, are prohibitive.

Research by the Australian Cancer Survivorship Centre, based at Peter MacCallum Cancer Centre in Victoria, shows that most Australian hospitals have little in the way of specific cancer survivorship plans and services. In Victoria only one out of 18 sites described their survivorship follow up activity as “well-established” and only three out of 18 reported providing comprehensive, holistic, survivorship care “most of the time”.

So, what can we do to be proactive about good survivorship care, until such time as best survivorship practices are offered as part of standard care?  As mentioned above, join a support group, use the PCFA’s telehealth nursing and counselling services, reach out to friends and family (try and spread the load and not lean too heavily on partners or a one or two of those closest to you). Meditation, exercise and eating well can all essentially be free or low cost once you get started on the right track by someone qualified. Find your happy place – favourite locations and activities that always bring joy. Mine is the ocean, and a couple of sleepy coastal retreats that always lift my spirits. A cancer diagnosis should be carte blanche to indulge all those things that give you greatest joy. You’ll never have a greater leave pass to put you first. Use it wisely.

References

Australian Cancer Survivorship Centre. Embed and spread optimal cancer survivorship care across Victoria (2020-2022) – comparative state-wide data report. Melbourne, Australia: Australian Cancer Survivorship Centre; 2022. https://www.petermac.org/sites/default/files/media-uploads/EmbedAndSpreadProject_ComparativeDeidenti...


About the Author

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Tim Baker is an award-winning author, journalist and storyteller specialising in surfing history and culture, working across a wide variety of media from books and magazines to film, video, and theatre. Some of his most notable books include “Occy”, a national bestseller and chosen by the Australia Council as one of “50 Books You can’t Put Down” in 2008, and “The Rip Curl Story” which documents the rise of the iconic Australian surf brand to mark its 50th anniversary in 2019. Tim is a former editor of Tracks and Surfing Life magazines. He has twice won the Surfing Australia Hall of Fame Culture Award.

Tim was diagnosed with stage 4, metastatic prostate cancer in 2015 with a Gleason score 9. He was told he had just five years of reasonable health left, but seven years on, at 57, he’s still surfing, writing, and enjoying being a dad. His latest book, Patting The Shark, also documents his cancer journey and will be published in August. Tim will be sharing weekly insights into his journey to help other men who have also been impacted by prostate cancer.


Help is Available

Prostate Cancer Specialist Telenursing Service

If your life has been impacted by prostate cancer, our Specialist Telenursing Service is available to help. If you would like to reach out to the PCFA Prostate Cancer Specialist Telenurse Service for any questions you have about your prostate cancer experience, please phone 1800 22 00 99 Monday - Friday 9am - 5pm, Wednesday 10am-8pm (AEST).

Prostate Cancer Support Groups

PCFA is proud to have a national network of affiliated support groups in each state and territory of Australia consisting of men and women who have a passion for assisting others who encounter prostate cancer. This network is made up of over 170 affiliated groups who meet locally to provide one-to-one support, giving a vision of life and hope after treatment. Call us on 1800 22 00 99 to find your local group.

MatesCONNECT Telephone-based peer support

MatesCONNECT is a telephone-based peer support program for men affected by prostate cancer. If you’ve recently been diagnosed with prostate cancer, our MatesCONNECT service can connect you to a trained volunteer who understands what you’re going through. All of our volunteers have been through prostate cancer. Simply call us on 1800 22 00 99 to be connected with a volunteer.

Newly diagnosed? or need to find more information? Access the PCFA resources here.

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