“The treatment conversation needs to start with quality of life”

As the second most common cancer in men, prostate cancer is something that is likely to affect many of us – either directly or because someone we care for is diagnosed. 

The physical and emotional burden of prostate cancer and its treatments can be significant, and men should not have to choose between fighting cancer and continuing to live life on their own terms. 

The development of new treatments means there may be options to choose from that are effective while allowing men to keep doing the things they enjoy. Yet, many men with prostate cancer and their caregivers can often struggle to find their voice in treatment discussions about the things that matter most to them.

We asked Robert S. Greene, Founder & President HungerNdThirst Foundation, Board Member, European Cancer Patient Coalition why we all need to talk more about prostate cancer - drawing from his experience both as a patient advocate and as a man who has personally experienced prostate cancer.

There are many different treatment options for prostate cancer. How can healthcare professionals better support men during treatment discussions?
It is the wrong assumption that men with prostate cancer will already be informed about prostate cancer treatment and be equipped to ask the right questions about what matters to them from treatment.

I believe that healthcare professionals may need to rethink their approach in these discussions in order to better understand the individual and their personal goals. From my personal experience of receiving treatment for both my colon cancer and prostate cancer, I found that the healthcare professionals looking after me didn’t ask what I thought about my treatment, or how it was influencing what I do in my daily life. Their attention was focused on my blood results.

There was one specific appointment when I wanted to learn more about what I could expect from a particular treatment option for my prostate cancer, including how I should be prepared emotionally – but I was told that it wasn’t the appropriate time to address that type of question. Perhaps because healthcare professionals are not fully aware of the emotional and social stress that a cancer diagnosis brings, quality of life gets overlooked.

Even if there are limited treatment options for a particular individual, it is still important for men with prostate cancer to be informed about the impact of treatment on quality of life. If these open conversations don’t happen, it can affect the outcome of the treatment as well as the emotional wellbeing of a man with prostate cancer.

What role does the advocacy community play in empowering men to talk about what matters most to them from treatment?
There is a whole lot that patient organisations need to do, and that includes me as a patient advocate. We should remember that it is not enough to print a brochure or put a resource on a website as many people seeking this information already may have a diagnosis. We must start educating earlier. The point at which we are trying to intervene in the conversation may be too late if a treatment decision has already been made. 

There are also the spouses/partners, family members and close friends of men living with prostate cancer. We need to be much more dedicated to providing information to these individuals. We can’t assume they have access to all the information they need to support someone with prostate cancer.

What can the wider community do to better support men with prostate cancer?
We discuss almost anything and everything in the world we live in, and prostate cancer is something that is likely to impact many of our lives. But people often forget that it can impact them directly. 
We all must keep talking about prostate cancer and treatment choices, to ensure that any man diagnosed with prostate cancer and their loved ones are prepared ahead of treatment conversations.

References

1 American Cancer Society. Cancer Facts and Figures for African Americans. 2019-2021. Available at: https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf. Accessed September 2020.