Support for Wives/Partners whose husbands are on Hormone Therapy

Hello trudging59, welcome to the community. Sorry to hear that your husband is having treatment for prostate cancer and the effects it is having on you both.

Could you perhaps give more details e.g. your husband's age, general health, PSA at diagnosis, scans and biopsies, treatment history and PSA now?

How long has he been on HT?

I am currently on Leuprorelin Acetate (PROSTAP) HT. The hot flushes, fatigue and lack of libido are common side effects. Some men get large emotional swings too and can get angry or upset more easily.

I have had a radical prostatectomy in July 2015, salvage radiotherapy March/April 2017 and have been on HT since the end of December 2016 with that set to continue until next year for now.

I'll be frank, I also have no libido, cannot get an erection and have little of no interest in sex or intimate contact. I do have mood swings from time to time but they aren't massive.

Everyone is different and acts differently. A friend of mine had radiotherapy and two years of HT and had incredible low points and fatigue. he and his wife fell out because he wouldn't communicate. He came home from work, had a bath and went to bed leaving the dinner his wife had cooked for him lying without even telling her! 

He eventually opened up a bit more and attended a local support group with me a couple of times and things settled down. He is now off HT.

The side effects of PROSTAP are listed here.

I personally have telephoned Prostate Cancer UK and attended workshops at Maggie's.

These places are there for partners, friends and other members of families too.

Maggie's runs very good workshops for partners and sufferers on how to deal with cancer and it's treatment. They also offer relaxation classes, one to one chats etc.

I highly recommend that you and your husband if he is willing use some of that support.

I often think my wife suffers more from my diagnosis and treatment than I do so I would recommend you spending time on you so that you can better cope with the fallout from this terrible disease and its treatment.

You can telephone PCUK on 0800 074 8383 or Macmillan on 0808 808 0000.

Here is some information on Maggie's.

Hopefully others will come along and answer your post too.

Best wishes to you both, Ian

Hi there, I'm so sorry to hear about what you are going through, but I completely understand. My husband was diagnosed 5 years ago and our sex life finished soon after when he had a prostatectomy, followed by lots more treatment over the years and he is now on palliative care. (He's been very unlucky with an aggressive strain of cancer). I agree, it is the intimacy that I miss too. Although his illness had brought us closer together in many ways it is a completely celibate relationship with just a cuddle and brief kiss - I would love a sexy snog again! I grieve for the changes in our relationship and feel I am losing my sexuality too and although I can't see myself ever being interested in another relationship I do feel sad that that part of my life is over.

I'm sorry I can't offer any suggestions, but I thought it might help if you knew others feel just the same. The only thing I can think of is whether some counselling would help. Relate (certainly in our area) offer funded counselling for couples suffering from prostate cancer. Don't feel ungrateful or guilty - it is a huge part of your life that is affected too.

Take care xx

Hi trudgeing,  you didnt sal how long he has been on adt but ill tell you how it went for me.  Immeadiatly after getting the shots i lost all intrest in sex and any fform of intamacy.  Like you said not just sex.  I could not hug, kiss or anything.  My wife and i were big cuddlelers but i could not after that.  Mostly because of the horrible hot flashes.  Your husband truly cannot help it.  He is in major metapause.

There is hope though.  After about 18 months i regained the desire but could not do anything major.  I got the pump but that didnt last long.  Viagra no good.  If i would have tried the injections at that time they would have probably worked.  Now they wont.  I was a scared of the needles but no need to be.  As soon as he can bear the thought of sex try the injecti ons or pump...anything.  because if you dont use it you will lose it.  I have.

Call the nurses on this site to guode you through this time.  It will pass for him.

Thomas

Hi trudging59

I felt so sad reading your post, my husband and I are in a very similar position.  He has been on hormone therapy for nine months now, has also had 37 treatments of radiotherapy, and just last week we learnt that his PDA is down to .03, which is wonderful, but his oncologist wants him to remain on HT for three years in total.  We should be thrilled by the success of the RT, but the hormone therapy has completely removed all his libido, and while we still have a close and loving relationship, he does not want to be cuddled in bed, or to cuddle me really, although he does try, and will hug me during the day.  We still kiss, but it s affection rather than passion!  For the first time in our 30 year marriage he has taken to wearing pyjamas, which feels very significant to me.

I think we both feel as if a big chunk of our lives has disappeared, although I feel he is more accepting of this than I am.

He does not find it easy to discuss the situation, he tends to joke that he is becoming a "lady", can't reverse park, or walk past a shoe shop, but in truth I know he is as sad as I am for what we have lost.  

Like you I feel I am being selfish, and try to concentrate on how glad I am that we have at least a partial recovery from the cancer.  All I can say to you is carry on talking as much as possible about everything, and remember that laughter is a great help  but don't completely hide your feelings because that won't help either of you.

Palmersgirl

Dear Trudging,

I am so sorry you are having such a difficult time. The effects of HT are indeed profound and reach far beyond ED. The official warnings underplay the effect that HT has. Every facet of what it is to be male are lost so that sexuality, thinking, emotions and physical properties including body odour are changed.  I know of no support group for wives yet they are all profoundly affected by the the changes to their OH.

Watch out for depression in your OH; it is a common problem as the months go by yet not officially acknowledged and that is dangerous. GPs are commonly unaware of the risk.

After HT there may be some abaiting of ED but the return of the original sexuality, thinking, emotions and physical properties are slow, uneven and rather odd at times.

I wish I could help other than by being frank about how it is from within. 

After 6 months of finishing 3 years of hormone treatment my intrest in sex and intimacy  has returned but with no erections or ejaculations im hoping in time there may be progress in that direction, meanwhile my Wife is continuing to be patient and understanding. Will update if there is futher progress also should mention some bodily hair is returning but unfortunately not on my head 

Hi Trudging59

Like a few who have replied, I have been on Prostap for 18 months, I have incurable PC ( unless a wonder drug appears ) I liked the chance of sex with my wife but all that went with the hormone effects.

My wife is terrified of my condition and how long I will be battling this desease to be with her. We have always been close and knowing I cannot do what I used to, I make up for it with comforting words out of the blue I'll just say how much I love her, giving har a cuddle and kiss, trying to include my wife in things I do as well as vice versa.

It's not easy for people like me knowing there's no cure, my wife knows this and I realise how much it affects us both, the stress she is under each day seeing how I used to walk like a normal person but now I have a slight hunch when I wake up and get out of bed,until a few pain killers and moving round for a while ( I have it in my skeleton ) makes me more human.

We all know you wives look after us and I speak for many when I say we really apreciate it more than we say, also knowing that the stress and strain you go under plays on our minds as well. 

This horrible desease rips many couples families apart but some go into a shell others cope as best as possible, it all takes time living with this hopefully he will at some stage realise being togeather is more important than going into a shell.

Joe

Wise words Joe, well written and thoughtful. im in a similar position but my doctor has given me viagra which has helped enormously for my wife and l to be intimate which has bought us even closer and it's a lovely, welcome escape from all the cancer related stress we are both going through. 

Best wishes to you both. 

MarlowRob. 

Hi Trudging59,

      Bees from the States here.  I was diagnosed in 2009, had the prostate removed same year.  2010 I went through 13 weeks of Radiation Therapy, and took prostap for the first time.  (We call it Lupron here in the states).  For 2 years I was clean and then in 2012 it returned.  I've been on the Lupron since then, and in 2016 had to supplement with Zytiga.  

    Lupron had me lose all hair under my arms, now with the Zytiga as well I am a lot like your husband.  I'm just not even interested.  This from a man whose libido just about ruined my marriage earlier in life.  We are luckier than you in that because my wife must take a medication for seizures she too has no interest.  

    Here is what I want you to know, that I think you husband is experiencing;  All his life an erection was a foregone conclusion, and now he must face the ultimate of male insults... the inability to get an erection, and worst of all he knows that he is letting you down.  He feels defeated, and so much less than a man.   These are all emotional reactions to a tough situation.  Not the actual truth.  The more he keeps it to himself the harder it will be for him to deal with, and by extension you as well.  

  In any event, my blessings to you both, and my sincere wishes for you to have happy times in the future!

Peace and love,

Michael

Thank you so much, Ian, for taking the time to reply and also for the links.

My husband is 60, good health and fitness before diagnosis (lost some of the fitness with the HT), PSA 11 at diagnosis.  Gleeson 4 plus 4 = 8.  The Consultant wasn't happy with doing a prostectomy because the cancer had started to spread outside the prostate (but not the bones or lymph nodes), so he went for a month of daily radiotherapy, brachytherapy and HT (yet to find out exactly how long the HT is for).  His recent PSA is 0.04 - so we are extremely grateful that the treatment appears to be working.  Has been on HT since September last year.

I am going to follow up some of the links which you have given.  I know that everyone is always affected by a family member's cancer diagnosis, but I do feel that in the case of men on HT there are particular problems which the wives/partners struggle with.  Your recognition of the effect on your wife is admirable and I am sure of great help to her.

I wish you all the best. Jackie