Newly diagnosed T1G3 or worse... beginning to navigate the minefield.

  • 23 replies
  • 62 subscribers
  • 953 views

Hi all,

I'm a 55yr old man, had my 1st TURBT 3 weeks ago. Afterwards the consultant informed me that it did not seem to have gone into the muscle, but lots of CIS around, so I felt fairly positive and expected to start BCG or sign up for the KEYNOTE-676 trial. Had a meeting with the nurse yesterday where they informed me that it looked very aggressive (G3) and didn't have enough muscle in the biopsy to be sure it hasn't invaded. Also, apparently I had a bladder contraction during resection, which perforated the balder meaning they couldn't do the MitoC afterwards.

I will go back for another deeper biopsy to check - I was told that happens regularly, is that true? 

Now my head is spinning with so many questions and uncertainty and I'd really appreciate some insights form all you lovely people:

1. Even if they don't see cells in the muscle, I guess that doesn't prove it didn't invade, so still very worrying, but I guess if that's the case. I'd start BCG.

2. It seems quite a few people had failed BCG but then mitomycin C seemed to help - is that mostly for lower grade or has anyone with G3 had good outcomes with mitoC?

3. The biggest worry is if it is invasive, it seems the preferred treatment of that is a dose of chemo and radical cystectomy which is freaking me out a bit - how bad is it, is anyone happy to share there experience post cystectomy with bag or pouch?

On the one hand I feel I shouldn't even be thinking about 3 above yet, but it seems that if it is found to be invasive, I would need to have my mind clear about my options?

Thank you!

  • Hi  and a warm welcome to the group although sorry to hear you have bladder cancer. The early days of uncertainty can be worrying and we understand. As regards a follow up TURBT, this is common in nearly all cases so try not to read anything sinister in it. It is to double check to make sure they have missed nothing and to get a more accurate diagnosis to plan the way forward. As regards BCG failing we need to bear in mind that people come to forums like this only when they have problems. We rarely hear from the many people who sail through it successfully. A bit early to be thinking of removal, but many here can reassure you if it comes to that. Mine was muscle invasive and I still have my bladder. Try and take things one step at a time. Lots of experience here so always someone with an answer to any questions . Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Thanks a lot Rily, you've helped put my mind at ease somewhat, which is very much appreciated. Can I ask, what treatment did you receive that has managed to keep the muscle invasive cancer in check?

    All the best.

  • Hi  . I had chemoradiation which is an alternative for cystectomy for muscle invasive. Just add about the follow up TURBT. They are usually a lot less severe and quicker than the original. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Hi mikeyaba68,

    Sorry to hear about your diagnosis. 

    I had the same problem, in that they couldn't get a clear result after the 1st TURBT so they had to go back in. Reading others experiences on this forum it does seem this is very common.

    Why they just don't say you'll probably need two to begin with I'm not really sure.

    My biopsy came back grade 3 and non muscle evasive and have been put on the BCG treatment (27 instillations).

    I've had 12 and not wanting to tempt fate all is going well.

    I can't comment on the other treatments personally but I've read many of posts with positive outcomes for both.

    Wishing you the best of luck.

    Trevor 

  • Hi mikeyab68 and welcome from me too. My OH, the one with bc, had "only" Pta but a whole bladder-full, too any to count, and G3. he had 6BCG, another cystoscopy revealed a single new growth so turned into a TURBT as he was under GA [gen anaesthetic]. Then he had a course of Mitomycin and has had no recurrences in five plus years.

  • Hi Mikeyab68, welcome to a safe space where you will get good advice and plenty of support, both practical and emotional. I totally understand your distress and all the ‘what ifs ‘ , I did the same myself last year. The lovely  Rily and others reassured me that once a treatment plan was in place following my 2nd turbt to check the grading, that I would feel calmer and more focussed. They were absolutely right. If you click on my profile you can see my journey so far. All is well and i am about to have my bcg follow up to check for recurrence. Fingers crossed it will be clear.

    I understand you are trying to be fully informed but my advise is stay off google, it has out of date information alot of the time. Try to take one day at a time, keep yourself occupied . The lovely folk on here will hold you steady through all this. You are among friends. Stay in touch

    much love Angela 

    Much love Angela x

  • Hi

    Firstly, Welcome to the group, which I hope you will find very supportive.

    Now, secondly, bladder cancer has a history of being successfully and effectively treated and there an increasng number of treatments. I was diagnosed seven years ago with muscle invasive bladder cancer and underwent a RC. Since then, I've lived quite a normal life and dare I say, one with a high quality. Yes, you have to make adjustments, both physically and mentally, but it's not the end of the world, fa4 from it!

    You've recently been diagnosed and that's one hell of a shock. You're just beginning to understand the jargon and terms that go along with it and it's frightening, which is understandable. Now your specialists will come up with a treatment plan and whatever it is, it will be to give you best route to get back to good health.

    In the meantime, try and take easy steps, ask questions on here, no matter how silly they may seem to you and don't be afraid to vent your spleen. I would advise you to avoid Dr Google and go back to your CSN with any queries, or talk to one of Nurses and experts on this site.

    You are not alone.

    It doesn't matter where you go, there you are
  • Hi mikeyab68,Welcome to this friendly group.I hope you will find it helpful and supportive.Best wishes Jane x

  • Hi, as others have said, the second look is standard with G3. Not have mitomycin is not a problem - that's often at discretion of the surgeon anyway. I quite understand you looking ahead at possible scenarios, I was the same in your position. Whatever you try & guess, you will probably be wrong, but I think it's good to have some idea of what they might propose. That way it wouldn't be quite such a shock, and you can have questions ready - pros/cons, risks/benefits etc, although they should explain everything to you in terms of options (unless only one course of action recommended). Take heart that there is usually someone here who has been the same route.

    Yes, they might understage (your pt 1.), I was told that around 25% patients having bladder removal are restaged via path report. That would mean chemo recommended after surgery, rather than before. Be prepared that with G3 and CIS as well, they may well recommend surgery rather than BCG. The combination makes it more risky that a recurrence could be invasive.

    I'm female, which is a bit different in terms of effects of surgery, but I actually chose that rather than BCG. I was able to have neobladder (a new bladder made out of piece of intestine) & am very happy with it. 

    Take a deep breath, take things one step at a time. Hope all goes well for you.

  • Hi Mike,

    Please accept this heartfelt welcome :-)

    I started my journey on July last year, resulting in a very similar set of diagnostic presentations, my Consultant informing as follows:

    "After the robotic cystoprostatectomy and lymph node dissection and ileal conduit, I discussed with him today his histology which revealed a significant amount of grade 3 urothelial carcinoma with extensive squamous differentiation and sarcomatoid differentiation invading the lamina propria, with multifocal CIS but no involvement of the muscle Ti b. There were 10 lymph nodes in the sample and none of them were involved. There was a tiny amount of Gleason 3+3 prostate cancer which is insignificant. I explained that we only need to monitor him closely now and I arranged for him to have some blood tests and a CT scan in April and I will see him with the results in May next year."

    My Consultant said at the time of the proposed treatment "who needs a bladder like that?" So, in answer to your query on "experience post cystectomy with bag or pouch?", it's just a part of life now, but a life without those ghastly symptoms pre-treatment, & not having to have regular cystoscopy appointments. 

    If your DO get advised to have the full 'cystoprostatectomy', make sure you ask the surgeon to apply 'nerve sparing', as that's essential if you have concerns over sexual function after the event!