Time is running out, please help me to help him understand

Hi I'm back. My partner still has not made a decision regarding his cancer, recently he managed to get another MRI done which has come back that the 12mm growth is now, 18mnths later, 20mm he has a small prostate 14cl which is apparently a third of the size of a normal average prostate and the cancer is backed up against the nerve bundle...time is running out but still he cannot make a decision on his treatment because of his fear of losing his erection.

I have begged him to get it sorted as it can be sorted, a vacum pump will enable him toget an erection and even tho he will not ejaculate he will have that same intense feeling as tho he has ejaculated, dry ejejaculation. Please can anyone help me to help him understand. He will need to have prostate removed as radiotherapy can then be used as a back up. Thank u

39 Replies

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  • I think the single most important thing is to get the best of the best in whatever treatment you decide, so if surgery, find out who has the best record of least side effects, same with radiation or adt. Most bad side effects are a result of the lack of skill of the surgeon, others may recommend a good surgeon. There are some good ones out there. And yes there is the little blue pills and certainly vacuum pumps, if an erection is that important, for me after 10 plus years deprived of testosterone, I do not even think of it, and no problem for my wife, she considers it time off for good behavior.

  • I have not had a natural erection in nearly ten years, but I have a pretty good life. Tell him no matter what, he has you. No matter what, you love him. No matter what, your life is better with him than without him. Tell him how worried you are that if he doesn't undertake some primary treatment, you are afraid for him (for the damage and pain this could cause untreated) and for yourself (because your life would be lousy without him).

    I hope that helps.

  • Thank you

  • It might be helpful for both of you watch some videos about possible sexual side effects following prostate and related cancer treatment procedures that may carry varying risks of either urinary incontinence or erectile dysfunction. Such knowledge can really help reduce many fears of the unknown, and help in managing expections. And it's Free!

    One excellent source is Dr. John P. Mulhall at Memorial Sloan Kettering Cancer Center.

    Here's a link to his page. Look for the link to his on-line videos there at the bottom of the page for "Sexual Problems in the Male Cancer Patient".

    mskcc.org/cancer-care/docto...

    There are also similar videos from him on YouTube ... you can search by his name + prostate, or whatever.

    If you guys Google Search for "prostate cancer sexual intimacy" you will also get several good sources to explore, learn, and hopefully relieve some anxieties and help manage expectations before doing any treatments or procedures. There are also books on the topic.

    google.com/?gws_rd=ssl#q=pr...

    Communication is really a big factor. I can personally attest that my wife and I are closer and more loving now than before I went on ADT, and stopped having typical erections and the kind of sex and affection that we had for many years before. And, after all, 95% of sex and love and affection is actually "between the ears", and in the heart, isn't it?.

  • Thank you for the links I feel they have helped a lot. I didn't say before but he has already had a battle with this problem before as 10yrs ago he ended up wiith caudia equina. I think he's so fed up as he's already faced this battle, he still has problems with getting and maintaining an erection due to caudia equina and has to take viagra etc. We as a couple have always said even though penerative sex is rare we have great sex, loving sex and your links have reminded him of this.

  • With love you can maintain intimacy.

  • Please tell him that the side effects of treatment can cause intimacy issues. However, the side effect of not doing anything has the biggest impact on intimacy. You can not be intimate if you are dead. In addition, the longer he waits for treatment the more agressive the doctors will have to be.

    Who says anyway that the only way to be intimate is physical? Since I have been diagnosed with advanced cancer I have never been closer to my wife.

  • Hi. Thank u for your reply to my post. I think his discission has been made more difficult as he faced this battle with ED before as 10yrs ago he had caudia equina so he already spent 5yrs regaining some sort of normality to his sex life. I have reminded him that we made it through that and even though penerative sex is rare we do have a good, loving sex life which he completely agrees with in fact he is far more forthcoming verbally, he has been the one that has always said our sex life is good, than I am. He's just so deflated, upset, angry that again he has to face this battle if I'm completely honest I think he's more worried about me as I am 10yrs younger than him. I have told him so many times that I'm not worried, I too suffer with caudia equina, and I love him. I have been thinking that maybe I should walk away so he then would have the worry of me off his mind and it will make it easier for him to deal with. It's the last thing I want to do but I'm starting to think it would be best for him

  • It is so hard for the caregivers. You do what you think is best, not only for him but also for you. That said, please do not walk away in the hopes that then he will seek treatment. He may instead just let the cancer and nature take its course.

    There is so much more to love than just the physical. In fact, physical is the smallest part. Perhaps he just needs assurance of that fact. I do wish that he realizes that, cancer or not, our time where on earth is so short. None of us should make it shorter just for temporary physical pleasure.

  • Dr who...I reread you comments and they uplift me every time.Thank you!

  • Thank you for your words. Truth be known, some days it is very hard to get up. That said, I am and continue to be amazed by the strength of people at this sight. Let's all raise a toast to not only the warriors but their caregivers. Their strength amazes me and give me hope!

  • Great answers!

    Thanks

    Victor

  • A break may be good,but your integrity is telling you to stay and help.He sounds like I have sounded at times.At times you just want to curl up and say forget it.Give up.But if you do you are through.All of this has nothing to do with you.aonly your love can cure him, if he allows it.stsy healthy yourself ..No matter what, you want what's best for him.How fortunate he is to have you.Keep faith you'll need it during this test for both of you.You are not alone .Everybody here has a similar story and we all can relate..

  • Please know that it is so much harder being a caregiver than the one with cancer. Please know that there are thousands wishing you the strength to carry on. While my cancer is advanced, I thank a God that I have it and not my wife. I am not as strong as she is. I would break under the load placed on caregivers feet.

    Please remember to also take care of yourself. Unfortunately as you know, cancer does not only effect the ones that have it, but those who love them.

    Please know we all are praying for the two of you.

  • Thank you for your kind words. I have been in this position before as when I was 16 I helped my nan look after my grandad who started with lung cancer that quickly spread, unfortunately the cancer won. 8yrs ago my mum was diagnosed with lung cancer which 6yrs ago won again and I lost my mum, she was a v important part of my life as I had already lost my dad and my brother was killed at work so my mum and my daughter and my grandson, I have 2 more grandchildren now, were/are all the family I had and we are v close.

    I just hope, pray that this time the cancer will not win but I know the longer he leaves it the chance of it spreading increases.

    At the moment my partner is waiting for the results of an MRI and bone scan which is taking a very long time as he's not yet had appointment through, scans were done 6wks ago. He still says he don't think he will be able to go for a prostatectomy he just won't be able to lay on that trolley going to theatre knowing all the side effects that surgery entails. He has same attitude towards radiotherapy. I just want him to be a survivor and not end up like my mum n grandad....in a graveyard

  • So sorry. Most (<90%) regain control and are able to be intimate. Those are good odds. Perhaps you could get him to take something for anxiety?

    We are all pulling for the both of you!

  • Amen

  • I have to agree with Dan and Yost. After 7+ years the urge just went away for me. Too long on ADT does a good job of killing any sexual feelings. I always said, I could have a dozen naked ladies dancing in front of me, and nothing. Nil, null.

    Now, about his decision, what gives? If I had the chance to do it again, RP, chemo and follow up from there. Men are being cured now with this approach. I'd rather just be alive than live for an erection.

    Joe

  • We are all human beings no doubt. How many thousands of men are there, impotent without being affected by prostate cancer? Nothing is more important than life ( mere survival ) in face of death. If he is not ready to fight for life because he craves for sex - he is making a big mistake. When you have a prostate cancer, your destiny has changed. Cancer treatment should be the primary and all the rest should assume things of secondary importance. The price for not understanding this early enough can be very costly and self defeating to the extent of a very painful death due to mCRPC. On the other hand taking "Sex" out of our mind may not be that easy. Some of the replies contain good advice and devices one can try to mitigate the sexual issues. Oh boy! this is a battle. Where is the brave soldier in you? Sorry, I should have asked first - how old is your husband?

  • I agree with several of the comments as per RP. i was told I had a very aggressive cancer and I wanted it out and it is, via my RP at age 65. And yes ED is part of that choice. But life is precious and it is my choice to live it. There most certainly are other intimacies a couple may share without penetration or performance. If you are dead there is nothing to share (though presently there isn't any one to share with !). I understand the feeling women may have after a mastectomy and feeling as though they are not a complete woman. Believe me, I have had those same feelings with all the "alterations" in the equipment that have occurred to me. I am presently getting lupron injections and am on my third one. Lots of things change with that med! but I feel better every day, feel stronger every day. and that is better than feeling that I am not complete. I am still me. My sons still have a living father and I get to be with them. If I am dead...... not a choice I want to consider. Good luck! I hope he chooses life.

    David

  • I suppose I should mention HIFU as an alternative to conventional surgery. It boasts fewer 'quality of life' side effects. Insurance / medicare does not yet cover it and it isn't cheap but it is now available in the US. That is the choice I made.

  • Thank u. Unfortunately we live in England and a lot of treatments mentioned sent available here it's basically radiotherapy or prostate removal, nerve sparing surgery isn't even available so we limited in our choice

  • I poked around. I saw some mention of HIFU as possibly being available in a clinical trial. cancerresearchuk.org/about-...

  • I am surprised "nerve sparing" surgery isn't available in England as it is standard procedure these days. That said, it depends on where the cancer is, whether nerves are spared. Even if not spared, there are a n of options for a "complete" sex life.

    Here are some "nerve sparing" centers in England (via Google)-

    birminghamprostateclinic.co...

    dailymail.co.uk/health/arti...

    Regards,

    Craig

  • Tell him to think with his big head, the little one always got me into trouble... Trust me, Life is better than Lust...

    j-o-h-n Friday April 21, 2017 4:42 PM EST

  • Agree

    Victor

  • If you live in England - look up Dr. Mark Emberton at the College of London Hospital. He is one of the leading Prostate surgeons and the top HIFU doctor in the world. You do have some leading edge things going on in the Prostate world in the UK. Also a very active and progressive support community in the UK Prostate Cancer Foundation.

    pkafka

  • If you live in the UK, this resource with lots of information, videos and referral links is good to explore in depth: "Living With Prostate Cancer - Sex and Relationships"

    prostatecanceruk.org/prosta...

    Charles

  • I can only say that feelings don't change. Ability to have sex is altered but not as much as it will be if the cancer progresses . I say go for it now, don't wait

  • Dieing to have sex is not a legitimate reason to commit suicide by cancer. I have been married 51 years and have never loved my wife more. The life we share, my son's and grand children and great grand son are my world. It is foolish to give them all up for a few erections. What would happen to my family if I died tomorrow? Would sex today be worth death? Tell him to stop thinking only of his pleasure and start thinking about his loved ones. Cancer doesn't care what he chooses any treatment will extend his life. Cancer isn't waiting for him to make up his mind it is rotting his insides now. His procrastination is killing him.

    I am sorry this is a tough response but he really needs to crap or get off the lou.

    Dennis

  • What a strong and good advice Dennis, well written! I copied it for a print.

    Sisira

  • Sex isn't everything but life is. Desire wains after ADT but I believe surgery has the worst SEs re: impotence. If his PCa is contained RT seems best anyway. If he's young I see his concern. Even so he needs to get on with life and put sex in the background . I was really concerned about sex pre treatment as well, had nerve sparing RP, then SRT etc. now sex is a distant memory.

    Bob

  • Impotence, while being alive at 72, is not a big deal.

    INCONTINENCE IS !

    I researched my options ,after being diagnosed with PC,

    asked not only specialists,but the men who had radical prostate removal by surgery.

    Result: I opted for Radiation (EBRT).

    Too many men were IMPOTENT and INCONTINENT after surgery.

    My PC came back after 3 years ,than I opted for intermittent ADT.

    I had another 10 years of quality life,

    including great sex.

    Now the desire to have erections is close to zero.

    I have alternative and great intimate options.

    AND SO FAR NO INCONTINENCE ISSUES.

    Every PC is different.

    May be I was just lucky.

    And I am lucky to be in this forum.

    Cheers

    Victor

  • If it breaks through the capsule that incases it (the prostate) then he will not only lose his erections...he will lose his life at some point...a lot sooner than he naturally would. And...the treatments to keep him alive while on him of his testosterone and his ability to build and keep muscle...as well as many things that he sees as maintaining his physical masculinity. I am there. And I never had the chance to make that decision. I was diagnosed at 54 and was in excellent physical shape...and now I look years older and I've lost my muscular physique. Tell him to get rid of it or have it irradiated and under go temporary treatment until cancer has been reduced and is under control. He is resisting and the clock is ticking.

  • He must let go of those thoughts about sex or no sex and address living a new life style..We all have had to change.Out of a desire to live ,the priority is life. He is in The nile river right now .He has your love.Thats everything.personally I didn't have a choice to wait and see.But from my experience I say ". Don't hesitate to fight aggressively for your health.There is much he can do to help himself.I believe early action is key if he is advanced.If not you don't want it to get worse.Bless you the wife the caregiver our saviors.Partners suffer along with the patient.You "must " take care of yourself and vent positively throughout this trip you are on..I believe that you are thinking right.For him " Sir, follow this advice from your wife" Because she is the one loving and caring,worrying .Take action and continue to do so and you can do things to improve you status. Good luck! Think positive! ....It paramount!

  • You could tell him he still has choices. My husband was diagnosed at Stage IV -- no surgery, no radiation, so he immediately faced chemical castration and chemo and Xgeva, and a limited life expectancy (maybe 5-8 years from diagnosis at age 52). If he doesn't act now, that is what he will face. Oh, and without testosterone, my husband's genitals have shrunk and he has almost no body hair, and he has male menopause with hot flashes. We are OK with this -- he's alive and actually doing well otherwise But if your husband is that worried about losing his sexual function -- you might clue him in on where he's headed if he does *not* do something. Right now - seems like he still has a chance to come through it with a sex life, with help perhaps, but he might be able to avoid chemical castration and testosterone deprivation.

    Good luck.

    Also suggest that maybe he try UsToo support group -- men (and some women) in the same position. There is likely someone there who has been in a similar position and may be able to share with him.

  • Good morning Caring7. Your description of your husband's situation is a mirror image of mine. Your understanding and approach is so similar to that of my partner. Yes sex brought us together....but we have grown closer in the past four years as we share this bloody disease and the problems with ADT effects. I love her not her individual bits and she loves me for what I am not me the ever shrinking genital holder.

  • Still evening here -- I live in Hawai`i (I know, less pity for me now!) I'm glad to hear that I come across that way. I think mostly because of the hormones and also because we are nearing the end of Xtandi effectiveness, we've had a lot of ups and downs lately, and it's been hard. So thanks for writing. My philosophy -- always give a warm fuzzy because you don't know just how much it will be appreciated! So thanks! And keep appreciating your wife -- she needs it more than you may realize.

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