Hello

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Hi, I am looking for some advise re next steps. in the last 7 wks I have had two TURBT ops along with numerous MRI’s, CT scans and Ultrasounds. My tumour was 3.8cm long and have been diagnosed as TA grade 3. I am also a Type1 diabetic reliant on Insulin four times a day and have psoriatic arthritis for 28 years that has been treated since 2005 by biological fortnightly injections etc. My Rheumatologist has stopped all arthritic medication last week and I have a meeting to discuss next steps for the bladder next week. I am considering the 6 wks BCG with 3 wks BCG every quarter for upto 2 yrs or bladder removal. Is there anyone who has similar illnesses, are there any other cancer treatments in the UK with less side effects that may be suitable? Currently I play golf three times a wk and visit the gym a couple of times a week which I am keen to maintain.  Can anyone advise please options to consider? DJ1711

  • Hi DJ1711 and welcome. Your grade and stage match my OH's exactly.

    His comorbidities are epilepsy [heavy meds] and Asperger's [tho no meds for that currently]. I admit ignorance of your Type 1 diabetes and psoriatic arthritis.

    But my OH, when the bc recurred after one TURBT and 6 BCG, was offered " More BCG, bladder removal oh and by the way Mitomycin " as "3 equal options". Very eager to keep his bladder and associated functions intact, he opted for the Mitomycin. It has worked very well for him, no recurrences only a couple of 'red patch scares' in five years. He couldn't even tolerate it warm nor hold it for as long as supposed to, but it has still worked. His only side effect was feeling wiped out next day, but that was no issue being retired anyway. He didn't miss a single day of being with me on grandson duty throughout.

    Hope this helps, those of us who have benefited from Mitomycin [in my case as partner] are stumped as to why not all NHS centres even mention it. A big reason why I still stay on this forum, to be able to pass on the mention to seekers like yourself. By the way, for bc it goes into the bladder similarly to BCG so you do not get the major side effects seen with intravenous systemic chemo.

    best wishes, 

    Denby

  • Thanks Denby, will ask next week

  • I too was diagnosed with G3 TA1 in July 2022 and they were keen for bladder removal, I opted for 6 bcg and 3 heated mitomycin to start with, after completing without too much bother, clear scan and have continued on the bcg route, I am 63 and continued working for NHS admin role 4 days a week, keep an eye on my 93 year old mum and have 3 granddaughters so always bit exhausted but happy to be here. I feel with help from advice on here I chose the right chi ce for me, so far so good and long may it continue. Good luck. 

  • Hi DJ1711,Welcome to this friendly group.Best wishes for your meeting and in making a treatment decision.Jane