Limited options after recurrence

I can understand that this is terribly disappointing for you. When you say other treatments, was mitomycin mentioned? Some people have gone on to have success with that. You can ask to be refered to another hospital, but consider if any extra travel/waiting for more tests etc is worthwhile. 

If the consultant is willing to do more BCG, then the recurrences cannot be muscle invasive. If you are happy to gamble, more BCG is an option. The risk is that another recurrence is muscle invasive, possibly even becoming incurable. Only you can weigh up the pros and cons, risks and benefits in relation to your personal circumstances. Best wishes making your decision.

Hello Zak, I would advise you to talk to your cancer nurse if you have one, a Macmillan nurse or request an appointment with your consultant so that, one way or another, a medical professional can give you greater insight to the limited choices you've been given for future treatment. Your team will have had access to path lab results which, together with your age and general health, provide them with reasons for proposing further treatment types. There are of course technical terms used in the 'grading and staging' of your cancer. They basically sum up aspects such as the degree of muscle invasiveness i.e. whether the cancer has penetrated the bladder wall, the position of the lesions (tumours) and the level of activity/cell types retrieved in biopsies (aggressiveness). A cystoscopy is a big operation, often requiring a recovery period running into several months. It also affects the function of associated parts of your anatomy particularly if male. However, if the op is successful it is probably the most effective treatment for long term remission, whereas further TURBTs or BCG, chemo and radiotherapy often performed in combinations may give long term relief but often have the risk of recurrence. All of us on here have been steered in certain directions by the variables I've mentioned, quite often given options which we have to choose after digesting the pros and cons. I'm sure if you can pin down one of your team for a detailed question and answer session you'll feel better able to assess your current position. Best wishes, Ray (diagnosed 2017: 7cm non muscle invasive lesion: Radiotherapy then two TURBTs 2017/18, palliative, symptom driven treatment ever since...plus having a Folely urethral catheter from late 2018 until present date).    

Hi Zak71,

Mine was muscle-invasive so I had a cystectomy. But just to make sure I also had a second opinion (privately). 

After your next meeting with the consultant and depending what he says you might want to raise that as a possibilty - you can ask for one within the NHS - before deciding. Going private avoids that chat of course.

Alternatively you might ask if there are any trials relevant to your position. Or about a transfer to a hospital where more options are available.

I haven't had BCG but I have read in this forum of those who did have recurrences during it (sometimes several times) before they were given the all-clear.

All the best,

Latestart

ps I and others have coped well with losing our bladder. For us it was 'no big deal' as another patient on the stoma forum once said. Aside from particularly male concerns it has the merit of getting the cancer out of one. Of course, recurrences can still happen, just not in our bladder

Thank you all for the reassurance and advice. I will explore your suggestions. Not muscle invasive at present. The doctor who did my last Cystoscopy was quite positive and the lesions were superficial and treatable hence my surprise at the 2 extremes of treatment….more BCG (which I tolerated very well) or cystectomy which I don’t fancy despite the better chance of eradicating the cancer. I researched other options such as mitomycin, anktiva, radio chemotherapy,EV Pembro regimen and MDA. My consultant asked if I had a medical background , but explained the thise treatments were unavailable or that I didn’t fulfil the criteria. We are off to Canada for a couple of weeks from the end of next week so I’ll do some ruminating before any final decision. Thank you all again.