Sex and cancer - Let's talk

I have been with my partner since 2006 though we never married, We met when i was caring for her husband who had terminal lung cancer, we kept in touch, and got together 18 months later. Our love life was good for 15 years until just before my diagnosis when physical changes started due to prostate cancer. The important one being a slight loss of bladder control which at first and only very occasionally meant if i relaxed at the wrong time i would dribble a few drops of urine which happened while making love, and not just intercourse which was too much for me, i couldn't  do this to my partner, though she played it down telling me it didn't matter, Had been trying to see my GP for 3 weeks at this time and finally got an appointment, Sample given, bloods and DRE done he told me straight away i had prostate cancer. I had been in healthcare for 15 years and knew PCa was one of the better ones to get regarding management and cure so stupidly thought i could go through treatment, hopefully cured and i wouldn't need to put my partner through what she had been through with her husband 17 years earlier. Anyway because of the diagnosis and the incontinence slowly getting worse our love life came to a halt. After all tests were done and i had my full diagnosis, treatable but not curable i told her everything, My incontinence continued to get worse in many ways and needed surgery a TURP, at this time we hadn't made love for 6 months but had become even closer though i think hormone therapy may have played a part as it had changed me emotionally making me much more empathetic and tearful which we both liked. Incontinence at it's worst with bleeding as well and radiotherapy due plus side effects especially fatigue and no libido, i didn't get erectile dysfunction though part of me at the time wished i had, making love looked like history. Two months post RT things were getting better our relationship was still wonderful, incontinence 90% better, no blood, no fatigue and libido back so we found ways to be intimate without penetration while things improved further and a few weeks later started having intercourse again after 14 months. which after a couple of unwanted moments was better than it had ever been. Today love making is incident free we are as close as any couple could be and despite the rapid deterioration of my cancer i am a happy man, who can't thank the woman I love enough for all she gives me. Eddie

Thank you for sharing your experience here so openly and honestly, eddiel. I think that's going to be very helpful for a lot of people to hear.

Hi Matthew, I'm not surprised mine is the only post, I'm a really open guy, though if it helps anyone just by reading it, that's good. take care.

Eddie

I appreciate eddiel's honest and openness, and I can be open as well because I use a pseudonym here.

Before I had surgery for prostate cancer I was told of the three most common side effects - infertility, incontinence and impotence. (I wasn't told about other side effect such as lymphoedema, but that's another story.)

Infertility didn't bother me - our children are already adults, thank you very much. Incontinence sounded a bit worrying, but I was told that it usually got less severe over time, which turned out to be true (although it has got worse again after recent bladder surgery). 

Impotence - erectile dysfunction or ED - also didn't worry me too much. Having been married for 35 years our sex lives had somewhat tailed off into a comfortable routine, with mutual touching and rubbing rather than penetrative sex.

I was wrong not to be worried. I was told that my prostate surgery had been "non-nerve sparing" (which is a medical euphemism for "nerve-damaging") because of the location of the tumour in the prostate. The damage to the nerves meant that achieving an erection naturally would be impossible. For ever. Pills and creams didn't work for me, and I didn't fancy injections and certainly not an implant. I do have a vacuum pump, and that gets a sort of soft erection, but not firm enough for intercourse. Orgasm is possible (after prolonged manual stimulation) but it feels very different to what it was before the surgery, and obviously there is no ejaculation. 

My wife is happy with our current levels of intimacy. She has been an absolute legend since my diagnosis and supported me in every way possible. I know I am a very lucky man.

But I do miss getting erections, and "proper" orgasms and ejaculation, which I never thought I would. I don't find penis or sexual performance related jokes funny anymore. I have had several rounds of professional counselling since my cancer diagnosis, and I have discussed the fact that somehow after cancer I sometimes feel less "me", and the ED is an aspect of that.

I don't want to put anyone off getting treatment for prostate cancer, it is important to listen to the advice you get from your doctors. But ED has affected me much more severely than I had anticipated.

best wishes to all

Angus P. (not my real name)

Hello eddiel and angusP2 

Well another Prostate Cancer forum member here - yes, I am on hormone therapy and this reduces testosterone in your body - the first side effect ED.

I am married, 68 (66 on diagnosis) 4 adult children and what I assume was a normal sex life (just what is a normal sex life??). 

Honest opinion - we can't have sexual intercourse as I can't get an erection (not even a twinge) my penis has shrunk and my sex drive has tapered off - BUT it's brought us closer together. We have fun - yes we have found ways to "amuse" one another and yes the Big C has improved our relationship - it wasn't bad to start off with though!!

For me the loss of intercourse has been no big deal - but the two words uttered by my oncologist "Curative Pathway" have been a game changer - my outlook on life has changed.

I finish hormone therapy later this year - will my "bits" grow back (yes my balls have shrunk too) - will I get the "urge, the feeling" who knows BUT - if all goes well I will be cancer free.

A small price to pay.

Good luck to you all on your own journey.

Best wishes - Brian.

Hi Angus and Brian thanks for sharing, it helps me that you did, as we have been saying on the prostate cancer forum for some time it really is a couples disease and we have been so lucky to have the partners we have, Eddie

I’m currently 67, have been very happily married since 1978, and have had 2 completely separate cancers.

First was lung cancer for which I had surgery (right lung removed) followed by 4 cycles of chemo over 3 months. Side effects and recovery meant I lost inclination and ability to have sex for several months but as I recovered these returned to normal.

I’m sure many others who successfully complete treatments and recover will experience a similar situation and hopefully some will feel able to share their experiences so there are some more non-prostate related examples posted on here.

Then came prostate cancer about 2 years later for which I had radiotherapy and hormone treatment. I experienced the usual ED and complete loss of sex drive soon after treatment started which continued until after it was completed, then slowly recovered until we resumed some sexual activity. Still affected by partial ED and finding it difficult to access professional help in my area we researched all options from reliable sources (Macmillan, Prostate Cancer UK etc.) and after trial and error settled on use of a vacuum device (VED) in conjunction with sildenafil (generic viagra). Sildenafil is prescribed by my GP but I had to buy the VED because the health authority for my area does not provide these on prescription (although I believe some others do so it’s worth checking). We were both delighted and have been enjoying the new normal for a good long time now.

My message here is don't despair, prostate cancer may not always mean an end to your sex life forever, although it is most likely to be interrupted for some time and might well be different in future so be prepared for that and try to be patient while things improve.

Fast forward to January 2024 and my PSA level has, after very slowly increasing over 2 years, reached the level for referral back to hospital and I’m currently being investigated for possible recurrence - if so, I might be back to square one so best to make the best of things while we can.

Hello excavator 

So sorry to read about the increase in your PSA - let's hope for the best for you.

Best wishes and thanks for sharing - Brian.

Hello Stephend - What a cracking, honest, helpful and to the point post

Stephend said:

For men reading this out of curiosity,  pay attention to your little friend, if it doesn’t look or feel right, talk to doctor.

and that, gentlemen sums it up!!

Thanks for posting and best wishes - Brian.