Husband (41yo) diagnosed bladder cancer

  • 18 replies
  • 48 subscribers
  • 1049 views

Hello, I am new here and don’t really know where to put my question. Here is my story - Last year on October my husband (41yo) has been diagnosed with bladder cancer. His diagnose has been very unique for his age, he got the tumor located outside of bladder in diverticulum. He went through the partial cystectomy, hoping that it will be enough thanks to the diverticulum, even though tumour was micro affecting fat around the diverticulum   docs managed to “take it all out”, unfortunately results of biopsy came back as partial low, partial high risk tumour and also Tis.

So now we are standing in front of decision - chemo + radical cystectomy or chemo + radiotherapy. 
My first question is if there is someone who went through similar diagnosis?

my second question is - how normal can life be after radical cystectomy with neobladder? We are one year after wedding, very active, I am 34yo, very scared how we will be able to handle all this. 
Sorry for long text and thank you all!

  • Hello  and welcome to the group although sorry to hear about your husband. I did not have the diverticulum complication but had a similar decision to make for muscle invasive BC. I went the chemoradiation route but many here have had cystectomies and I am sure will be along to share experiences. Best wishes. 

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Hi Eli Pet,
    I will have a go at answering question 2.

    Q: How normal can life be after RC and Neo?
    A: very normal.

    you wisely used the word “can” because every surgeon and every person is different.

    I had RC and Neobladder in 2020 when I was 53 and life is hardly any different.

    I have zero incontinence day or night.
    I played football within 4 months of surgery, golf within 9 weeks and was back at work (office based job) after 8 weeks.
    It’s hard to be sensitive here, speaking about intimacy, but my prostate was removed so I cannot ejaculate.  Apart from that no difference. I can get and keep erections as before and have same feelings at the end.

    Not wanting to alarm you, but being totally honest, unfortunately for me BC came back in summer of 2023 in my pelvic lymph nodes. But caught early due to regular scans and being treated with a trial drug. I’m doing extremely well and all of the above comments about Neo are still true.

    I am happy to answer any specific questions you have about Neo Bladder. I have no regrets whatsoever. Having said that Neo is not possible for everyone and the stoma alternative has many fans too.

    cheers,
    Chasam

  • Can i ask you how long ago and if you dont mind the question then also what is your age and what made you choose this route?

  • Hello, thank you so much for you reply! I really appreciate also the answer about intimacy part, which is quite important for us as well. From what we read and what doc said, its 50/50 chance to get something damaged during surgery.

    Can I ask you what is your experience with incontinence with NeoBladder? How long did it take to get used to it and function "normally"? 

    Thank you

    Eli

  • Hi  . In my case I was given the choice of bladder removal or radiotherapy with chemo. The surgeon wanted to remove my bladder but my oncologist was an advocate of bladder preservation where possible for muscle invasive BC. I chose the radiotherapy route to keep my bladder. I was 63 at the time. It was my 73rd birthday last week. Without wishing to tempt fate, everything still working normally down there. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • That is amazing that you managed to get through it without bladder removal! We had those two options on the table first as well, but then after 2 consiliums all docs said they recommend the surgery. What was your stage? Husband is T3a N0 M0 while the T3a was only that case bcs it was located in diverticulum which doesn’t have solid wall. 

  • Hi  . RT is not suitable for everyone. I was T3/G3 but had one large mass which was a good target. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Hi Eli,
    You have to stretch the Neo once catheter is removed by emptying every hour for a day, then every 2 hours etc.
    I followed the instructions to the letter and maybe I’m benefitting from that ?

    I was fully continent during the day a few weeks after catheter was removed.
    Nighttimes are more of a challenge. 
    I used Tena pads and set an alarm to go to the loo a couple of times a night.
    Also had a waterproof sheet for the bed, just in case.

    I think by Christmas ( 6 months after surgery) I stopped the alarms and began waking up naturally if I needed a wee. That is still the case. 

    I do wake every night but I used to anyway.

    Chasam

  • Welcome Eli.

    I was diagnosed just before xmas. I don't have a choice. It's bladder and prostate removal for me. Just waiting for a date.

    The doctor didn't explain anything regarding the prostate removal "it just something we do". I'm in my 50s and don't expect to want to start a family now so it's not a huge concern to me. (Not sure about my partner though)

    If a prostate removal becomes a reality for your partner then you need to be aware of the consequences of that, particularly given how young you are.

    It sounds like you have options though. So that's a positive thing.

    This is great place to talk, and it has certainly helped me, everyone here totally understands the emotions and fears that go along with such a diagnosis. So don't be shy. Ask questions, or just share how you are feeling. Believe me, it helps.

  • Hi Eli Pet,Welcome to this friendly group.I hope you will find plenty of advice and support on here.Best wishes Jane