56 year old husband diagnosed with prostate cancer

Hi everyone, so bit different as community arranged for one of these pop up voluntary PSA testing centres in November last year so my sister’s and I thought it would be a good idea to book husband’s in (ages ranging from 56 to 59) No symptoms what so ever so shocked when my husband’s results came back with reading of 7.9. The last two months he’s had two DRE’s, an MRI and finally biopsy on 4th Jan. Results now confirmed as Gleason score 7 (3 & 4), T2 possibly a T3a, N0, M0 so luckily caught early. He’s been offered two choices radiotherapy or radical prostatectomy. On Monday we spoke to Oncologist re Brachytherapy who actually thinks radical prostatectomy is more advisable for his circumstances, due to age and good health/fitness. Husband was actually swaying towards Brachytherapy before this meeting and now head spinning a bit. Radical prostatectomy all seems a bit scary. Hoping maybe anyone can help with sharing their experiences of surgery and the dreaded side effects, especially being incontinent and erectile dysfunction. 
Thanks for reading x

  • Hi Bill, yes I think you are correct about both treatments being as good as each other. We assumed that because the cancer is localised we could opt for Brachytherapy alone but this isn't the case, he would have to have hormone treatment and external beam radiotherapy of which the oncologist didn't recommend? 

  • In the last 2yrs I had firstly 2 x trus biopsy’s which showed nothing, they left me for 6 months after then I had a trans perennial biopsy and I got told in July 21, I had cancer, and would need to have a prostectomy at some point but I could go on active surveillance if I wanted, I opted for surgery which the surgeon wouldn’t do till I’d had another mri as it had been 14 months since my last one. It showed the cancer was still within my prostate but had spread a bit to the right hand side, so then I had to have a bone scan which was clear. The surgeon told me I’d have to have it removed now. (He said I was too young for radiotherapy, as it could give me problems later on in life ! ) I chose to have nerve sparing on left side, so hopefully be able to get an erection again. Hope this helps in your husband’s decision. I’m quite happy to keep in touch and let you/ him know how things progress. Tell him to keep smiling and stay positive all the way through.

  • HI Dave,

    Right yes that would make sense as to why they recommended surgery for my husband. Yes please keep in touch with any updates on your progress and I'll keep updating my thread with my husbands experience. I will remind him to stay positive thanks. Take it easy for now. 

  • Awe thank you lovely! Yes he is a trouper and I know it’s early days but we are hopeful of living together with PC stage 4 for many years to come.

    Following …x

    Louli

  • Hi LH.

    Your husband’s numbers are very similar to mine when I was diagnosed last year. I had surgery in October and don’t regret my decision for one second. Take a look at my profile - there’s plenty there which may give you both peace of mind.

    Your husband may not realise it yet, but given the absence of symptoms he had actually been exceptionally lucky. Given his age and diagnosis he is very, very treatable.

    All the very best with your journey - I’m happy to answer any questions you may have.

    HH

  • Hi HH, thanks for your reply. We’ve read your profile and it really does give us hope. I think we are now seeing the plus’s of the radical surgery. So pleased you are doing so well. 

  • I had exact same Gleeson numbers as your husband and elected to have RP on 2nd July, 2020 aged 62 at the time. Whilst the operation is robotic and keyhole I think too many people think that because of this it is a minor procedure. A lot of the discussion - particularly from the US where private healthcare is the norm - they tend to play down the seriousness of the surgery.  Believe me it is not to be taken lightly. I've given first hand advice to a number of people who have since had RP - some heeded it and recovered well; others didn't and later suffered the consequences from overdoing things particularly in the first few days at home. One guy was so euphoric after the op he did a bit of gardening the day after he got home. That person was later in dire trouble and when he is up for it will require further surgical intervention.

    Your husband is quite young and fit so I think he could if he wished go for a RP but it is his choice. Only he can decide. If he was older, unfit and had other health issues, I would perhaps advise against RP and try something else. 

    In my case I had the op on 2nd July and went home the following day. The first few days can be difficult - getting out of bed, mobility, dealing with the catheter (which really is no big deal). Each day you make some progress. I remember the achievement I felt when I could get out of bed on my own. At the beginning I started with walks around the perimeter of the garden. Started at a couple morning and at night and worked this up to about 20 laps after a few weeks. Tiredness was an issue and I went to bed each day at about 1pm for an hour or so. You must trust your body and not overdo it. 

    Leakage can be an issue for many. I was fortunate that by Day 30 I was leak free. And I didn't do any of the recommended exercises.

    Recovery time. My surgeon said 6 weeks. I don't think this was correct. By mid-September - say 10 weeks after the op I would say I was 80%.

    Set backs

    Constipation is very common. You can get dissolvable sachets to encourage movement. 

    It is common to get a UTI because of the catheter and antibiotics will sort that.

    I got a Colon Infection - again antibiotics sorted this. This is common.  

    Sex Life

    In my opinion there is a lot of tosh discussed about so called 'nerve sparing surgery' to enable normal sex to take place. Erectile Dysfunction (ED) is an issue for the vast majority of people (including me).

    There are PDE5 drugs such as sildenafil (Viagra), vardenafil (Levitra), and tadalafil (Cialis). None worked for me.  Nasty side effects of these drugs which I got - and many people get - are your face becoming flushed (red), stuffed up nose, and sometimes a mild headache. The side effects were the same for all but the duration and intensity varied - I found the sildenafil to be the least and the tadalafil to be the worse (felt bad all day). I also tried the injection drug Alprostadil - this didn't work either and was a bit of a palaver. For ED best to plan for the worst outcome and hope you get a lucky surprise.

    Key points to take home from this. Only your husband can decide. And if you go for RP don't think of it as a minor procedure. Rest, rest and aftercare is very important.

        

      

  • Hi Pumps100, thanks for your message. We appreciate your honesty and advise. 
    i think once we’ve had the discussion with the surgeon we can decide on next steps. 
    Wishing you all the best with your continued journey. 

  • No problem. If he does decide to go for it please come back to me as I have a few tips that you won't find in the glossy MacMillan literature.

  • First off you are lucky to have found this forum. 

    While I am older than your husband at 67 I consider myself very fit. My Gl score was 9 and cancer classed as aggressive. MRI  and bone scans confirmed cancer hsd not spread but in stage 3. The tumour was big. I chose the radical prostectemy route because I believed it would give me the best chance of a complete cure, of course not guarenteed.

    I had my operation early January and recovering well. Everyone is different and radical route is better the earlier its done. In my case my tumour was so large that the surgeon told me he would need to cut the nerves on one side. I accepted this. The reality is that radiotherapy would have provided a similiar outcome. I would advise talking to the surgeon. If tumour is small and he is good you will have a good outcome.

    My tumour when removed was 25 mm and they also dissected a number of lymph nodes on both sides. They came back negative for cancer. I reckon if my diagnosis had been earlier the operation would not have been so deep.

    Talk to the sugeon and prostate cancer nurses who can advise the after path

    Good luck