Sexuality & PSCC
Sexuality After Penile Cancer Surgery: The Conversations We Avoid
One of the hardest things about penile cancer is that the surgery/treatments may save your life—while also changing the way you see yourself, your body, intimacy, and your relationships. If can deeply impact partners.
I could not get my urology/oncology surgeon to discuss what he called life style issues. He listened to me ask questions, but he seemed determined not to discuss anything beyond surgeries. I found that same reluctance in other doctors. We live in a world where medicine is being removed from humanity, and is guided more by money, insurance, time slots, government direction and other external demands.
The whole person does not have a role in many exam rooms today.
A small but important study titled Sexuality in Surgically Treated Carcinoma Penis Patients and Their Partners looked directly at what patients and their partners experienced after partial or total penectomy. What stood out to me wasn’t only the physical changes. It was the emotional silence surrounding them.
The study found that many patients still had sexual thoughts, desire, emotional attachment, and the need for closeness. What often changed was confidence, satisfaction, body image, and anxiety around performance.
That distinction matters.
Because sexuality is not the same thing as intercourse.
The study repeatedly points toward something larger:
touch, intimacy, closeness, communication, emotional connection, reassurance, attachment, and being wanted still matter deeply after surgery.
For many patients, the fear was not simply “Can I have sex?”
It was:
Will my partner still see me the same way?
Will I still feel masculine?
Will intimacy become awkward or disappear entirely?
Can I still experience pleasure or orgasm?
Why is nobody talking to me about this?
The study also looked at partners — something rarely discussed in PSCC literature.
Partners can experienced grief, uncertainty, reduced sexual satisfaction, and emotional strain of their own. But interestingly, many relationships remained emotionally intact even when sexuality changed. Couples often adapted over time and found new forms of intimacy that were not centered entirely around intercourse.
That may be one of the most important findings in the paper.
Not because it minimizes loss—but because it acknowledges that intimacy is more adaptable, human, and emotionally layered than ‘medicine’ sometimes recognizes.
The Questions Patients May Not
Realize They Are Allowed To Ask
A recurring theme in this study was lack of counseling.
Many patients entered surgery without detailed discussions about:
orgasm
sensation
intimacy
body image
sexual adaptation
partner adjustment
psychological support
realistic expectations after surgery
That needs to change.
This mirrors my experience. I felt like I received a death sentence in place of a diagnosis—that’s how clinically cold my first Oncologist and Urology/Oncology Surgeon were. My partner just reminded me of something I said and have probably been blocking from my memory. When told about the amputation of my penis I said “I would rather die.” That was the first, instantaneous emotion that gripped me.
It took time, months after treatments, for me to see the small room I felt trapped in actually had a door that was cracked open, with a sliver of light coming through.
From being whisked through diagnosis into surgeries—I felt like I was a number, a place holder, another notch carved in a medical scoreboard. I use the word ‘carved’ purposely—I felt like my partial and full penectomies were just events for the surgeon to cut me with no consideration for me beyond that. His follow up treatment was impersonal, deeply painful and he showed his lack of respect for two female doctors that are developing reconstructive techniques. In your journey, look a little deeper into your doctors—understand them as people, not just your assigned medical providers.
My experiences with my original surgeon caused me to feel sadness, anger, additional raw pain (beyond the surgeries) and confusion while I was supposed to be healing.
That was my experience. My partner was there for all this.
It was painful then and it’s painful to process it and write about it now.
We need to organize men and their loved ones and demand more wholistic medical care. We need to educate the medical community about our needs as human beings. I needed them to be there of me—all of me—and they were not. I sincerely hope your experience is better than mine. I want to add I advocated and found a new reconstructive urology team and urology oncologist—and they are amazing.
Below are some questions I believe patients and partners should feel fully entitled to ask. You can think of additional questions.
Questions Patients May Want To Ask Their
Medical Team Before Surgery
How might this surgery affect intimacy and sexuality?
What changes are common after partial penectomy?
What changes are common after total penectomy?
Can orgasm still occur after surgery?
What kinds of sensation may remain?
Will there be penile tissue left after a full penectomy, and what sensations might occur, once I my healing has progressed?
Are there nerve pathways or areas that may still provide pleasure?
What emotional reactions do patients commonly experience afterward? Upon waking up from surgery, and later?
How often do patients struggle with anxiety or body image changes? What was effective ways to support patients at this time? Where are the resources?
What support exists for sexual rehabilitation? At my hospital; at other hospitals; globally? Are there doctors like Dr. Anger and Dr. Lewis at UCSD in San Diego, California that are pioneering treatment, procedures and support for patients?
Questions About Recovery
When does intimacy usually resume?
What forms of sexual activity remain possible?
What should I realistically expect emotionally during recovery?
Is counselling or sex therapy available?
Are there support groups for penile cancer survivors?
How well do patients usually adapt over time?
Questions About Relationships
Should my partner attend counselling visits with me?
What emotional challenges do couples commonly face?
How do couples navigate fear, embarrassment, or avoidance?
What resources exist specifically for partners?
Who do we talk to if we have questions about possible reconstruction, and where are there doctors doing reconstructive surgeries?
Questions About Mental Health
Is it normal to feel grief, shame, anxiety, or loss? How intense can these feelings be?
How often do patients struggle psychologically after surgery?
When should I seek professional mental health support?
Are there therapists experienced with cancer-related sexuality concerns?
If the first therapist I talk to is not providing me answers or developing my trust, may I go to a different therapist?
Questions Partners May Want To Ask
Partners may carry their own uncertainty, either openly or silently.
Some questions partners may wish to ask include:
How can I support my partner without making them feel pressured?
What emotional reactions are common for partners after surgery?
How can we rebuild intimacy gradually? Gracefully?
What kinds of physical closeness may feel reassuring?
How do we communicate about fear or embarrassment?
Are there counselling resources for couples specifically?
The Conversation Medicine Still Struggles To Have
Penile cancer treatment understandably focuses on survival.
But survival alone is not the entire story.
Patients also carry:
identity
dignity
confidence
relationships
touch
vulnerability
fear
hope
and other feelings
And these deserve supportive medical attention too. Realistically, how much support will there be, or not be? What is reasonable to expect?
One sentence from the study stayed with me:
Sexuality is more than intercourse alone.
That may sound obvious. But I now see this as a door to open. For me, there is room beyond that door to explore with my partner.
Medical professionals have an opportunity to significantly improve outcomes of life-saving procedures when they include discussions and provide resources about sexuality, sensuality, and other emotional support. This may be more rare now that even this tragic cancer is—but we have to start somewhere. Start with good questions and advocate for meaningful answers.
— Ty
Reference:
Bhat GS, Nelivigi G, Barude V, Shastry A. Sexuality in Surgically Treated Carcinoma Penis Patients and Their Partners. Indian Journal of Psychological Medicine. 2018;40(6):580–586.