A TABOO SUBJECT FOR MEN

Hi everyone,

I want to talk about a taboo subject for men. I recently attended a workshop for Macmillan Cancer and I was the only man there apart from three guys from Macmillan. Most of the talk centred around women's problems like hair loss and wigs until the guy in charge of our table said that men also have problems particularly with sex and cancer and these had not been mentioned. He then looked at me, so I spoke up and when I had finished, I was thanked for talking about it as openly as I had.

When men have hormone therapy for prostate cancer, I think 97% of men have problems with loss of libido and erectile dysfunction to differing degrees. We men  don't like talking about it even to our wives/partners as we see it as affecting our masculinity. Since having had prostate cancer, I have read many books and articles about prostate cancer and have read that because of a mans inability to get an erection, it has caused many relationships to break up. The way it was written, the women seemed to be blamed for this which I felt was unfair.

I think the problem occurs mainly because we men don't talk openly and honestly about it. If a man has been sexually active and then suddenly he has no interest, I think his partner may well believe he has found someone else and that's why the relationship is put under pressure. At my age it has not been a problem and I have often joked about it with my wife as my way of dealing with it. I look at it this way, I truly believe that hormone therapy has saved my life so it a small price to pay for the result I have had with my cancer. But for someone younger than me I can understand it must be a big problem.  There are aids/medication to help men with erectile dysfunction but I was never asked outright if I had this problem while undergoing treatment so kept quiet. I believe most men unless they are asked, would react much like me and keep quiet about it. Everyone on my table at the meeting was surprised I had not been asked about this while having treatment. Because diabetes also cause's the same problems, under new rules, my diabetic nurse now has to ask me if I have problems in this area so I think the same should apply when asking patients undergoing hormone therapy.

I hope I have not embarrassed anyone by writing about this, if so I apologise for it's not what I intended, but I would ask men to talk more about any side effects of treatment even if it is embarrassing for them. It is also why more men are needed on cancer committees to put men's viewpoints across.

Best wishes to you all, Brian.

 

  • Hello Brian,

    I dont think you post will embarrass anyone.  I must sat that it disappoints but does not surprise me that you were never asked whether the side effects of your treatment were affecting your life - in this case your sex life.  A recent post on this site that really struck me was Patsy55's post, a lady who had recent facial surgery for cancer of the nose.  I asked her if she was offered any support in coming to terms with her surgery, as it was not surgery that could easily be covered up and she said that she hadn't (she is happy dealing with things herself with the help of her family, but it seems that it was just assumed she would be).

    I am beginning to suspect that this lack of emotional support boils down to lack of money - it seems that the doctors do the 'physical work' to treat the cancer, but so much more needs to be done regarding the emotions people are going through - I am not suggesting this is the doctors fault, they probably have lots of people to treat, and limited time to do this.  I suppose this is where macmillan nursing etc comes into it, but from my own family experience as well as from what I have read here, there is so much more that could be offered to people in terms of the quality of life they have during / after treatment - they might not choose to accept it, but they should at the very least be offered some support I think.

    In danger of going on a rant here, but with my Dad, one of the most difficult times we had was when the treatment had finished - all was supposed to go back to normal, but it felt far far from it, and not one bit of support seemed to be offered, we were just left to muddle through ourselves.  I could see my Dad was very anxious, as was I.

    Well done for being the only man at the Macmillan group though,  without you there would have been none at all.

    I will also share something that made me laugh in my Dads last few weeks at our local hospice (as you know his cancer did come back) - he joked to his wife (my Dad always had a joke about things) that 'its been a while dear' when there was something about sex on the radio or telly - don't remember exactly how it happened now.  As so many Men do, he used humour to soften what must have been a very difficult issue between them.    Kathryn

  • Well done Brian for bringing this up - I agree with you completely that this should be discussed by health profressionals with their patients and hellp given if needed.  Two of my immediate family have suffered with prostrate cancer - one in their forties and the other early fifty and I know that they have suffered badly and it has ended intimacy in their marriages.  This has caused them great distress and loss of confidence, plus put a strain on their relationships as they are still very young.  One has also had problems with incontinency which is another side effect which goes unmentioned.

    These are all very embarrassing symptoms for a person and a lot of guys feel too ashamed to discuss them.  Lets hope you have encouraged a few to not see this as a taboo subject and be able to talk about it openly.  x

  • Hi Katheryn and Max,

    I thought long and hard before writing about this subject. Different treatments have so many side effects and  a lot of them are not easy to talk about. At the Macmillan meeting, I surprised myself by talking about this subject in front of everyone and was the first time I had done so. We always seem to have trouble talking about sex, yet is is a part of life that should not be ignored. I have been building up the courage to talk about this since a lady on here said her husband had this problem and felt less of a man because of it. But she said she loved him for what he was, not for his lack of functuality or words to that effect. But I feel a good loving relationship should be able to cope with this situation provided the man feels he can open up and explain how it effects his self esteem although I accept it will not be easy situation for either partner.

    Thank you both for you kind words as I didnt know how this would be recieved.

    Hugs to you both, Brian.

  • It was very brave of you to speak up at the meeting Brian - and on here too although I think you know us well enough to know how much we all admire you and value your openess.  To be honest, I think cancer treatments affect both men and women's libido - although sadly it is more obvious for a man. Hormone treatments bring on an early menopause for us ladies with night sweats, vaginal dryness, all not too attractive to our still youngish partners. For both men and women weight gain, hair loss, scarring, boobies missing, colostomy bags/catheters etc are all part of this journey for many of us and its no wonder that the physical side of a partnership is damaged.  Cancer affects every part of our lives and like you say, it takes a very strong marriage to survive. Being able to talk about this would help us all and I really hope others find the strength to do so, if needed, because of your openess. Take care lovely man x

  • Well done Brian  (and then Max!), As the "other half" I would gladly have dealt with any "inconveniences" rather than not have Ray around.

    Having said that,  very often the physical changes do have a knock on effect on the the sufferer personality.  It's often this subsequent change in character that can be more damaging. Being able to talk about it openly - well done Brian! - is the thing that really makes a difference. I had no doubt that my man still loved me to bits, and I him,  despite all the battle scars and consquences of treatments, but lucky for me he would talk about it.  Maybe not "going on" about it, like us girls sometimes do - but enough to make me feel needed and wanted. Closeness doesn't have to be just about sex, it can still be hugs and cuddles, even just holding hands can say it all.


    Brave Girl Max for flagging up girl stuff - that's often taboo even in the "real world" ... I haven't ever found a girl friend willing to own up up to even "normal" post menopausal dryness and it's dire consequences if you pretend it's not there.


    As this CC website has proved time and time again communication is an amazing thing, providing support and care even in the darkest hours.


    sueps

  • Hi Max,

    Thanks for writing about the problems women get, I had rather selfishly not considered that side of things so thank you for that. I hope you are keeping well and that the new addition to your family is behaving and providing lots of joy.

    Sue,

    Thank you for your reply and kind words too and it was nice to hear from you again. Having had cancer has opened my eyes to the suffering it causes so many families. Like you, I think this forum is a great place to talk to others.

    Take care ladies, best wishes to you both, Brian.

  • Brian,

    Thanks again for raising an interesting subject. Setting aside any physical symptoms, or whether someone is male or female, being handed what often seems like a death sentence is likely to have an impact on how we feel psychologically with a fall in libido almost inevitable as we adjust to our new reality. In an ideal World we would be receiving holistic health care, including cognitive based therapy to help us come to terms with our situation - but that rarely happens. At best people are offered counselling, at worst they are left to cope on their own.

    Sadly, due to the way the NHS was reorganised under this and the previous government, physical and mental health services within the NHS are almost without exception working in virtual isolation to each other. There have been pilots which show how useful psychological therapies can be, but they never seem to get embedded into the mainstream, possibly because Trusts are paid on the volumes of patients with specific conditions who have been treated on a cost model which doesn't include psychological therapy.

    Another factor is the fact that Mental Health services are a cinderella service - always the first to have its funding cut - with massive waiting times for psychology service due to under-funding and increasing demand. Services also tend to be prioritised by suicide risk, so if you appear to be coping you are a low priority.

    For what it's worth, the nearest I've ever been asked about my libido, or anything else remotely psychological is "how are you coping?". Luckily I am in a very supportive relationship with friends and family helping me along - I dread to think how anyone without such support would get along.

    Best wishes

    Dave

  • Hi Brian. Thank you for asking - yep I'm stable at the moment, so all ok. Alfie is doing fine - it is my hubby and I that are worn out, it's like having another baby in the house!  I was hoping you would get more feedback on this thread Brian but maybe it just goes to show how difficult people find this subject. Hope you and Mrs B are keeping well. Take care lovely man x

  • Hi Max,

    So pleased to hear you are stable. I can understand what you say about Alfie being tiring but animals do give us a lot of love, fun and laughter, so it makes it all worthwhile. As regards about the feedback, I had more responses than I was expecting but there have also been a lot of people reading this thread. My main ain was to get this delicate subject out into the open which I think has been achieved.

    I would like to thank you, Dave, Sue and Kathryn for your contributions to this thread.

    Wishing you and your family all the very best, Brian.

  • Brian, 

    Just getting familiar with this site.  Your comments appropriate for men who are freaked by diagnosis.  I had no other medical issues..am a lucky guy...but still worried about dydfunction..prime reason I researched as much as I did...only 2 weeks out since implantation but feel less  r her adical procedures give best chance for quality of sex life....so far erectile function for me OK..just dispell blood..so am being cool...think seeds for some may be an answer for intermediate stage ...but we are all so different....each of us have a natu ral healing and personal constitution that conditions how we react to any medical procecure...main main thing is to keep a positive outlook and get support from those who care.