Sex and cancer - Let's talk

What we all might benefit from is more counselling - before surgery as well as after - and sadly that's rarely available. (I do know Macmillan offers counselling).

I realise that when hospitals are falling down and the number of vacancies for doctors and nurses is growing all the time, counselling cancer patients on the consequences of their treatment on their sex lives may feel like a low priority for the NHS. But it is important.

I do know that counselling won't cure my ED or help Sarah either, physically, but being listened to and having the opportunity to express your feelings can be helpful.

Hello angusP2 

Thanks for that post - it raises some very good points. I am working away from the Community on another project for Macmillan and your comments are very relevant to what we are doing so thanks for that - I will make sure that what you have said is acted on.

Best wishes - Brian.

Hi Brian,When I met the surgeon he explained I was in a serious condition.I had advanced muscle invasive bladder cancer and would need urgent bladder removal in order to survive.He said he would be removing the womb and other gynae organs.All he said about sex was that I would still have a vagina but it would be much shorter.This would probably make intercourse painful.I know how different everything feels internally now.It’s been so difficult to find any time for intimacy due to a number of reasons.Even before cancer we were so busy with family commitments when we did get any time alone we would fall asleep as soon as we lay down.Since then my mother has died,my partner has been in and out of hospital and he is now caring for his frail mother.Luckily we do have a good stable relationship and are able to discuss everything openly.We are working on trying to spend more time together.Whether we can back to a full physical relationship I don’t know yet.It took so long to recover and I never saw my partner during the lockdowns as he had to shield as he is disabled.It has been a strange few years but we have stuck together and supported one another through various difficulties.I do feel that more attention should be given to this issue and medics could be more forthcoming with information and guidance.Love Jane x

Aw thanks Jane - you have had an awful time but I am so pleased you have stuck together. It's amazing if you have a partner who understands just where you are with everything.

We do need to get the message out there that your treatment comes first but you do need the full details of ALL side effects and things to consider post treatment. I know sex isn't always top of the list BUT it needs to be up there on the list.

You and your partner have a great Easter - Kindest Regards - Brian xx

You addressed your reply to Jane, Brian, so I’m not certain which one of us you meant! 

Reconstructive surgery is an option for many women who have had their vagina completely removed so in that respect it can be perfectly possible. I made a conscious decision not to choose that option, as I already had 3 surgeons involved in my surgery, and reconstruction would have probably doubled an already long surgery time and of course involved at least one plastic surgeon.

In the experiences of friends in my support group who have had this done, it has been largely unsuccessful for them, so I’m ok with my decision.

I’ve not ever heard it said that there should be more investment in reconstructive surgery for women-is that something you’ve read about somewhere? it would be interesting to see if there has been research about that I haven’t read about yet as I do speak to women off the forum who are facing exenteration surgery.

I have to disagree that looks do matter, with respect. I would rather be alive with no vagina than dead, which is certainly what would I have been with my stage 4 cancer progressing by the week. I’ve just asked my partner for their opinion on my lack of a vagina. The answer was “irrelevant because you are alive”. 

I would never for an instant personally consider looks above removing cancer-for this woman it was the last thing on my mind! Maybe some people have done who were not faced with the imminent prospect of dying which I was.

Sarah xx 

Hi Sarah, It really is an illuminating thread and long overdue, I hope it stays up for a long time and gets people to open up and understand fully, how being unable to have intercourse, whether male or female is as you say is a huge deal. take care.

Eddie

Hi Sarah - Busy day, that post should have been addressed to you, sorry!

I am not quite in the same boat as you as after my 3 years on Hormone Therapy I may well recover enough to have intercourse - with the lack of activity over the 3 years plus the time it takes to get out of my system - it might not be possible. I have talked to Mrs Millibob about the prospect of no further intercourse and I have had the answer - "it's you I want and that's what matters".

It's a purely personal thought about reconstructive surgery for a woman - I am aware that for some people this is important - no where near as important as your life of course.

Kind regards - Brian xx

Thanks Brian,I’m very fortunate to have such a special partner.Happy Easter to you and your family.Jane x

If I had been in your situation I wouldn’t have thought of reconstruction either Sarah.All I was worried about was surviving the surgery.Thanks for posting.Love Jane x

Well said angusP2. 

My counselling in the past has been good in some ways, but it’s never quite “right” because for me I haven’t come across a psychosexual counsellor which I believe would be a critical factor in success.

I am starting another round of counselling next week with a different therapist which may or not be helpful for me. My counsellor has been up front in her introduction to me that she is not a specialist in cancer counselling and that’s before we even touch on the surgery I’ve had. But I’m open minded and will give it my best try in an attempt to improve myself and reach a better place. I think I owe it to myself.

You are right Angus-being listened to will be very important and being able to express how I actually feel without fear of judgement.

Sarah xx