Fresh back from the tropical environs of Cairns in sunny North Queensland, for the Australian Prostate Cancer Conference 2023. My is head swimming with all manner of prostate cancer-related research and wisdom and a renewed gratitude for the dizzying variety of work being done in this area to improve life for men with prostate cancer.
Among all the exciting advances in mainstream oncology, managing erectile dysfunction and other side effects of treatment, the admirable research from specialist prostate cancer nurses and allied health, there was one topic that really stood out to me as receiving welcome and overdue attention. That is, the impact of a prostate cancer on the partners of men with the diagnosis.
We have known for a long time that PC affects partners acutely but it is heartening to see so much new research in this area. Onco-psychologist Dr Chis Nelson, from Memorial Sloan Kettering Cancer Centre in the US, presented much compelling research around the impact on partners, particularly around sexual function, intimacy and relationship issues.
By conducting indepth interviews with the partners of PC patients and examining online posts of community support forums, Dr Nelson has built up a compelling picture of the challenges faced by partners. It would be difficult to do justice to his research here in a few hundreds words but some key take away messages stood out for me.
- Screening partners for distress and quality of life, particularly around intimacy and relationship issues is a vital part of PC care.
- Partners often feel invisible, as the medical focus is on the person with the diagnosis.
- De-centring penetrative sex and expanding sexual repertoires is a wonderful way of addressing intimacy and erectile function issues.
- Partners often feel frustrated with insufficient sexual counselling from clinicians.
- Addressing relationship concerns and erectile function issues need to be addressed early on and consistently throughout a PC diagnosis.
- Partners need to be included in appointments with sexual health specialists, to be encouraged to play an active role in managing intimacy issues.
- Peer interactions and pro-active information seeking can help address unmet sexual needs.
- Many partners and couples experience distress and loss of connection as couples, and discomfort in communicating around these issues.
Some of the strongest responses from partners in surveys included;
- I am experiencing distress related to the sexual changes from the prostate cancer diagnosis and/or treatment.
- I feel a loss of intimacy with my partner since the prostate cancer diagnosis and treatment.
- I am uncomfortable talking to my partner about our sex lives.
- I am frustrated/angry about the lack of information we received about sexual health.
Clinicians were encouraged to address these issues in early consultations with both partners and patients and to recognise that they may have different needs. Skills training was needed to assist couples with sexual communication, sharing of feelings and open expression affection.
There is a huge unmet burden in relationship breakdown, deteriorating quality of life and psychological distress and recognizing the needs of partners and empowering them to find solutions is key to achieving better outcomes.
On a personal level, listening to this research helped me resolve some of the hurt and resentment I was harbouring towards my ex about the breakdown of our marriage, releasing blame and recognising how distressing and traumatic her experience of my diagnosis must have been. Blame, of all the human emotions, is perhaps the most useless and destructive.
To find out more about the work of Dr Nelson visit:
https://www.mskcc.org/cancer-care/doctors/christian-nelson
About the Author
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 eight years on, at 58, 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.
Prostate Cancer Specialist Telenursing Service
Prostate Cancer Support Groups
MatesCONNECT Telephone-based peer support
Newly diagnosed? or need to find more information? Access the PCFA resources here.
