Newly diagnosed: Invasive urothelial carcinoma with glandular differentiation.

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Dear Community Group Members

This week following a TURBT I was informed that they had found a (1.2cm) Tumour originally they had thought it was in the inner lining but during the TURBT had discovered some attached to the muscle.

After the TURBT I had been told "we are confident we have taken it all out"

So my confusion is - if it has been taken out why it appears that only option given is 3 Chemo sessions (for Preventative Measures) throughout my body followed by Bladder Removal with Stoma. When I said I did not want that, I was told Chemo/Radiotherapy might be an option or Neobladder. I understand my case is being reviewed by a team before they decide treatment plans.

Is there anyone in the group who may have had a similar diagnosis and what choices were you given and what were the steps you took for treatment choices?

Also if supposedly the tumour was taken out - why is it a jump to bladder removal? When it appears there is no cancer anywhere else that can be detected.

Has anyone chosen to have Neobladder? Seems to have less uptake than the bladder removal with Stoma. Is there a reason for this?

Might anyone know whether Immunotherapy could be used for my diagnosis? Or other alternative treatments? 

I am so very sorry to ask so many questions but I am completely lost. 

Thank you in advance for any responses to any of my questions, help, suggestions or support.

  • Hello Das,

    I am very sorry to hear about your diagnosis.There is lots of support and help that you can get from members of this forum, who are a very friendly bunch. You might find this document useful in learning about your diagnosis https://fightbladdercancer.co.uk/sites/default/files/downloads/FBCMuscle-Invasive-PIB-Digital.pdf all the best Leo

  • Hi Das,
    I’ll give you my opinion to a couple of your questions:

    1. Has anyone chosen to have Neobladder? Seems to have less uptake than the bladder removal with Stoma. Is there a reason for this?

    I had a NeoBladder in 2020 and it has been amazing. Same as old bladder really.
    The downsides can be incontinence and having to wake up by an alarm a couple of times a night forever. Lots of people are happy with stoma because they can attached an overnight bag and have a full nights sleep.
    Also there is a period after surgery when you have to train the Neo and that is a tiring week or so. You have to be very disciplined to gradually stretch Neo to size.

    I had nighttime incontinence for maybe 6 months but then my body and its body clock seemed to adjust and I no longer need an alarm to wake. Yes, I do wake naturally once or twice every night for a wee but imagine most 57 year old men with their original bladder do.


    2. Might anyone know whether Immunotherapy could be used for my diagnosis? Or other alternative treatments? 


    Unfortunately for me (and nothing to do with Neo or stoma) I had a recurrence in my pelvic lymph nodes in 2022.
    For that I was extremely lucky to get on a clinical trial that uses immunotherapy (pembroluzimab) and the trial drug,antigen, chemo carrying drug (Enfortumab Vedotin).
    The trial is ongoing (EV-300) although I am no longer having the immunotherapy due to side effects. But its work was done and as part of my trial a have 9-12 week scans, and latest results last week show NED (no evidence of disease).
    The results of the trial are so promising, phrases like “game changer” are used. Really hopeful that it gets past the NHS spending watchdogs later this year.

    The fact is bladder cancers treatments are getting better.

    cheers
    Chasam

  • Thank you Dan - will read and review.

  • Chasam

    Thank you so much for clarifying some of the information. May I ask one more question please.

    I appreciate everyone is different but once you had the Neobladder how much time off work did you need to take. In some of the comments I have read online some say 2-4 weeks and some 2-3 months. Clearly quite different. I work from home so would not necessarily have the worry of travel etc. What are your thoughts? How much time did you take off?

    Thanks

    Das

  • Hi Das,Welcome to our friendly group.It is natural that you will be feeling lost but hopefully we can help.Bladder removal is usually suggested for muscle invasive cancer.Once the TURBTS are done ( it’s common to have a second a few weeks after the first ) and the results are reviewed by the team they will come up with a treatment plan.If surgery is suggested then you will meet with the surgeon who will discuss options regarding neo bladder or Ileal conduit ( stoma) Neo bladder surgery is a bit more complicated than stoma and it is not suitable for everyone.My only option was a stoma but I manage well with it and nearly 5 years on I’m cancer free.Feel free to ask questions there is usually someone with the relevant experience to answer.I’m sure you will get plenty of support here moving forward.These early days following diagnosis are the worst.People tend to feel better mentally once they have a treatment plan.Best wishes Jane 

  • Hi Das,

    It takes as long as it takes. I had a little setback in recovery with a neobladder leak, but even including that I was back at work after 2 months.

    I did a blog which is uploaded to Macmillan somewhere and they last post had my timeline:

    4th April 2020 – Spotted blood in wee for first time.
    11th April – 2nd sight of blood in wee.
    14th April – called GP
    21st April – CT scan
    23rd April – Flexible Cystoscopy
    30th April – Rigid Cystoscopy (removed tumours)
    12th May – surgeon confirmed S2 G3 Muscle Invasive Bladder Cancer
    8th June – Rigid Cystoscopy to determine if Neo Bladder possible (it was)
    15th June – Radical Cystectomy and Neo Bladder (2 months after first call to GP)
    24th June – setback with Neo Bladder stitch
    30th July – catheter removed (after 6 weeks) and started to use Neo Bladder
    3rd August – resumed driving
    17th August – back to work (2 months after operation)
    30th August – played a round of golf (11 weeks after operation)
    17th September – 3 monthly scan and results (all good).

  • Hi Chasam,So pleased to hear you are NED.Jane x

  • Thank you so.much Jane guess you are rightI re the early days. I was diagnosed 4 days ago and my life feels like it is now stuck with nowhere to go and I just cannot function as I did last week.

  • Chassam huge thanks for explaining it all in such detail it has been immensely helpful. I am so glad for you that everything progrssed quickly for you and was/has been successful for you.

  • Hi Das,It does take a little while to sink in and adjust to the diagnosis.I guessed I had cancer but it was still a shock to be told.This is a lovely group and I hope you will find it helpful.Just knowing there is someone who has been or is going something similar does help.It does become clearer and easier to focus once you know what treatment you will be getting.Jane