EAU Webinar: The Patient and Partner Perspectives on the Impact of Female Cystectomy, Penile Cancer and Prostate Cancer on Sexual Function
What are the effects that radical surgical treatment for penile, prostate and bladder cancer has on sexual function and intimacy from the patient and partner perspective? The webinar 'The patient and partner perspectives on the impact of female cystectomy, penile cancer and prostate cancer on sexual function' was organised by the EAU Patient Office and featured insights from patients, partners, and HCPS.
Psychological effects
The impact that radical surgical treatment may have on an individual’s body image and sexual intimacy can be devastating at a physical, psychological and psychosocial level, with many patients never regaining the physical or emotional confidence that their relationships enjoyed prior to treatment.
I'm not actually sure if I have completely adjusted or we have completely adjusted. The thing that really surprised me was the way in which it questioned, what I felt of myself as a man.
It was easier at first because I was single, so there was no pressure to perform, to have sex, etc. And I didn't have to explain anything to anyone. And I guess during that time again, I was kind of building my relationship with my body, how my body functioned, the weight loss, the scars, etc. But then once in a relationship, it became harder to face intimacy because it felt different. And I guess subconsciously, I avoided it.
Partners’ perspective
The impact of treatment also inevitably affects partners, who share the burden of these changes. Supporting individuals in this situation is often difficult; the full impact of treatment on sexual function and intimacy may take many months to be fully realised, while supportive information given at the time of diagnosis will often feel overwhelming.
Comprehensive support
In addition, healthcare professionals often have inadequate time or resources to provide comprehensive support or may feel unqualified to do so, especially if they have little experience of a particular disease area.
The lack of signposting to supportive information, peer and psychological support is a common unmet need experienced by GU cancer patients, despite being treated for different cancers. Signposting patients to disease-specific charities helps them connect with people who understand their challenges and can offer support outside the clinic.
In the beginning I couldn’t even think about life after treatment. The diagnosis and medical language were overwhelming. I was just trying to survive. ‘I just wanted to have known that somebody was there. I wanted a business card or someone to call without having to research it or do it myself. There was no signposting or nothing given to me whatsoever regarding any future help.
I was not offered any sort of counselling or psychological support at the beginning. I think it should be offered because it would have been extremely helpful if offered at the right time by the right people.
Support groups
Signposting to peer support groups can provide a forum for learning from those who have already been treated. Practical advice from peers and their partners can significantly reduce the challenges a patient may face in adapting to long term side effects, while speaking to someone who has been through the same experience can radically improve a patient’s psychological and psychosocial outlook.
Many healthcare professionals will have little experience with psychological support, or where to signpost patients to, but making patients and their partners aware that psychological and/or psychosexual counselling, will help them adjust to altered body image and adapt to sexual intimacy, dramatically improving their quality of life.
Psychological support needs to be offered over and over again because, we're not all the same. One size does not fit all. So, it needs to be individualised. And I think that for health professionals, always be mindful of somebody's mental health, patient and the partner.
I was offered it right after I was diagnosed in the same room within 3 to 4 minutes. I had no time to process anything and it was kind of being forced on me. But that was the only time it was offered throughout the journey. I think that that should have been something that was offered throughout the journey and not just once. And I think I should have been signposted to peer support groups.
I was not offered any sort of counselling or psychological support at the beginning. I think it should be offered because it would have been extremely helpful if offered at the right time by the right people.
A simple strategy of signposting to third sector organisations and peer support, which could be initiated by any healthcare professional at the point of diagnosis, may significantly improve the patient journey outside of the clinical setting. In addition, follow-up appointments 3–6 months after treatment, when the consequences of treatment on sexual function and intimacy are more fully realised, offer an ideal opportunity to explore the need for psychological support.
For the full story, review the webinar 'The Patient and Partner Perspectives on the Impact of Female Cystectomy, Penile Cancer and Prostate Cancer on Sexual Function' that was moderated by Rob Cornes, Male Cancer Information Nurse Specialist and Chair of the ORCHID Patient Advocacy Group.