My father (78) was recently diagnosed with bladder cancer. The tumor was large (5 cm), mixed papillary-solid and located on the left posterior-lateral bladder wall, but they couldn’t remove everything during the first TURBT because he had severe macrohematuria with blood clots.
The pathology report (just one page) says:
"Multiple fragments of high-grade urothelial carcinoma (ISUP-WHO, 2004) G3 (WHO, 1973), diffusely infiltrating the subepithelial connective tissue and the muscularis propria fragments present in the sample. (pT2)"
The report doesn’t mention any immunohistochemistry, so I assume it wasn’t performed. I don’t know if this is standard practice, but how can they be so precise with the diagnosis based only on tissue fragments and without immunohistochemistry?
Anyway, these fragments were analyzed by a relatively young pathologist, who from what I found online seems to be a resident doctor or a specialty trainee in the final year or recently finished. Because of this, and the fact that no immunohistochemistry was done, we are considering seeking a complete TURBT and a second opinion elsewhere. Did any of you have your pathology report changed after a second opinion?
We talked to our oncologist and he only offered chemo plus radical cystectomy, but only after doing another chest CT scan to double-check for lymph node metastases. He didn’t explain why RC is the only option, nor did he discuss prognosis or surgery risks and side effects. When I asked about bladder preservation with turbt, chemo and radiation (trimodality therapy), he said the tumor was too big (it was 5 cm before TURBT, no idea about the size now) and that radiation would be ineffective. Recently I learned about a promising and less invasive therapy for bladder cancer called photodynamic therapy (PDT), but I can’t find much information online, probably because it’s not widely offered to most patients.
I’ve read that RC is only about 50% effective and that, in some cases, it might even contribute to spreading cancer cells or cause sepsis, which really scares me. My dad has told me he doesn’t want his bladder removed because he doesn’t want to spend his remaining time with a stoma bag or in worse physical condition. He would also likely refuse chemo and radiation, because 13 years ago he was wrongly diagnosed with Non-Hodgkin B-cell lymphoma (Grade 3, Stage 2A). He refused chemotherapy back then and lived without any issues for all these years, although his left kidney was permanently damaged. Now, coincidentally, it’s G3 T2 again, but this time in the bladder.
Did anyone here refuse treatment for G3 MIBC? What was your experience?
Hello Jayk and welcome to the group although sorry to hear about your father. In most cases there will be a follow up TURBT to clear up any residue and give a more accurate diagnosis. If you mean your father did not have a mitomycin chemo wash after the TURBT, this is not unusual. If the cut is deep, they cannot use chemo in case it seeps through the wall and in to the bloodstream. Many here have had successful bladder removal and should be along to offer their experience. I was T3/G3 and went the chemoradiation route. Has your father been allocated a CNS (Cancer/clinical nurse specialist? If so. these are the best people to get information. I hope all goes well. Best wishes.
I don’t know if immunohistochemistry would really have given them any more useful information in terms of recommending treatment. PDT is only useful for non muscle invasive BC. With T2, it’s possible that a complete TURBT is not possible and maybe not useful, given that aggressive treatment is needed anyway. Something I was told is that 25% cases are upstaged at time of bladder removal. Good news that the CT didn’t show any metastases.
There are plenty of us here who have had bladder removal and living happily, but at your father’s age, I can understand him not wanting that with stats indicate only 50% of T2 patients are cured. Is he otherwise fit and active? Unfortunately not having any treatment at all would mean that his condition will become terminal, though you would have to ask the doctors for a likely timescale. I can’t comment on whether or not chemo radiotherapy would be appropriate. The damaged kidney may be a factor.
Plenty here have had surgery successfully and are living happily. They have to inform you of all possible complications which can sound scary. Might be worth asking if they can give your father a more personal outlook. The decision must be his, but should be an informed one. Best wishes to you both.
Hi Jayk,
I had my bladder removed aged 70 (3 years ago) after Gem/Cis chemo (4 cycles) and have a stoma and bag. My quality of life is high and no-one ever realises I have had my bladder removed unless I tell them (which I often do, if I think they may have the wrong idea about it). I have lost count of those who have talked to me and realised there is life after the op.
Tell your father that although it may sound unpleasant, it's easy to manage once you get the hang of it and there is local support at home from experienced stoma nurses. One of the best benefits is that using a night bag we generally sleep through the night. My 81 year old husband would love not to need to get up in the small hours to urinate.
I am fit and well, walk everywhere - the best exercise - and intend to keep going to at least your father's age if not more.
I know what happens if you don't treat bladder cancer as my mother died of it in 1974 having ignored it until she had visible tumours from bladder and lung. That's why I jumped at the operation when diagnosed with mucle-invasive bladder cancer and have not regretted it for one moment.
I suggest you have a look on the Urostomy Association website where you will find plenty of older (and younger) people telling how many things they do to have an interesting life.
If you click on our names on this site you will find fuller descriptions of our treatments in case you are interested.
All the best,
Latestart
ps, I can't be bothered with medical terminology, numbers, grades etc, but did have a second opinion before the bladder removal - remaining with my original hospital when the opinions coincided. Urologists are more interested in the figures while my oncologist tells me more about quality and length of life. I still see /have reviews with both and will do for a few more years. I can talk to the CNSs whenever I have a query.
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