First post - partner has bladder cancer

Hi, happened to pass by & see your post. I'll try to answer what I can. 

It's not unusual to be referred to a more specialist centre for tests/expert opinion etc. Not every hosp has a urologist specialist proficient in every aspect of bladder cancer. The second TURBT is standard with high grade, to ensure that the staging is correct, as muscle invasive can otherwise be missed. Can't comment on why the mixed messages on that, but these sort of problems do seem to crop up when more than one hosp is involved.

The chemo at the time of TURBT is a one-off, usually at the discretion of the surgeon. I don't think it is a clear cut whether or not it makes a difference in the long term. Waiting a while before starting BCG is to let the bladder heal from the TURBT, again not necessarily a problem. However, normally there is a cysto after the first 6 weeks of BCG, so that is unusual. Hopefully now things are not so hectic with COVID, he may have the opportunity to sit down & discuss matters with the consultant. Must be really difficult doing consultations remotely.

Take heart that TaG3 is very treatable, but will entail regular checks, as BC is prone to recur. I had my diagnosis 10 yrs ago & am still here fit & well - I did opt for cystectomy. 

May be worth finding out if there is a local cancer support group, but feel free to come & chat here. Hope things go more smoothly from now on.

Hi Catfan. I hope this will be of some help. my husband [has Asperger's, doesn't do forums] had exactly the same as your partner, G3pTa. He saw the first cystoscopy and said the whole inside of his bladder looked like inside out cauliflower; we are sure he had had it a long time. No one ever said any locations and sizes of the tumours, though I think there were a mixture of papillary and CIS. Nor admittedly did anyone mention hydronephrosis. or hydro-ureter. 

He had a TURBT, six BCG, six weeks for healing before a cystoscopy to check - all that well before Covid. At that check there was already a new papilloma. Not then having found this forum, we had no idea that for many people BCG is like weed-killer on a path, you just have to keep redoing it every time another one pops up but they tend to lessen. So when the surgeon [clue in the job title, person whose chosen role in life is doing scalpel work] offered "as equal choices" "more BCG, Radical Cystectomy or er, or Mitomycin" we were horrified* and we thought the BCG had failed. So went for the Mitomycin.  For him it has worked effectively despite it being supposed to be delivered into the bladder with a heating pump [his bladder ejected it instantly] So he had it at room temperature; he still couldn't keep it in for the proper length of time but since then he is varying between 3 and six monthly check-ups. This due to a couple of instances of the infamous red patches. I do remember one time he was supposed to have the single installation of Mitomycin after a rigid cystoscopy under GA [due to stricture issues he has struggled with for years] - and it didn't happen because of an admitted admin mix-up in the hospital. That time they just had him back for another 3 weekly outpatient ones so it was not a big deal.

*horrified because he was NOT ready to likely lose all sexual ability, and by his own admission would be hopeless at dealing with a stoma -though many on here have no problem at all.

Any questions do ask, best wishes, 

Denby

Hi Teaswill, 

Thanks so much for taking the time to reply and it is very reassuring to hear that it is considered treatable and so encouraging to hear that you are fit and well after 10 years. 

My partner is relatively young (55) and was not ready to consider a cystectomy as the surgeon told him it would be the end of his sex life. He is also very anxious about surgery, hospital stays etc and worried about either having a stoma or neobladder but I know this remains a possibility. The surgeon said in one of the letters that he 'may well need cystectomy' but this was before they did the second TURBT. I think because we were in a bit of a blackhole as far as communication was concerned during the initial phases, we are both scared that we are in for another shock when he has his cystoscopy and biopsy. 

Hi Denby, 

Thanks so much for your kind reply. My partner feels the same and was not ready to hear that a cystectomy would mean the loss of his sex life - we are in our 50s but hadn't expected it to be ended with surgery! It's good to hear that there are some other options - I guess some of this will depend on whether it spreads into the muscle - my main fear. I just have this horrible feeling that because it is so long since his second TURBT (9 months) and no cystoscopy during that time, that something will have recurred. I also feel unhappy that he didn't have the chemotherapy drug at the time of surgery which seems to be a NICE recommendation - I guess we should ask about this but he has his consultations on his own by phone and is wary of asking too many questions as he can't deal with negative news. Best wishes to you and your husband.    

Thanks Catfan, this sort of thing is what forums are for I think. If your partner were happy to give authority to the surgeon to discuss his case with you, you could speak to the surgeon separately to ask those nagging questions. And since it concerns you so intimately, why shouldn't you know asap what you could be dealing with? I am older than you and my husband more than 10 years older still. But we are still having a lot of fun if you get my drift, and even if he had to have what is sometimes called salvage surgery [ ie cystectomy after the cancer has become muscle invasive despite other treatments] sometime in the future we would both be glad to look back on the extra years we have had this,

Best wishes to you both too, do think about seeing what your partner thinks about your discussing the situation separately. Of course you might then be landed with explaining anything said to you, to him. But perhaps this would be easier in a way?

Denby

Hi Catfan. Just to add to the above. Your partner should be entitled to the notes of any procedures. I have hard copies of all my procedures and consultation notes from both my urologist and oncologist. The consultants should sent records to the GP and I was copied in to everything. It makes things so much easier when you have things in black and white. We also know that different hospitals do not talk to each other. I had treatment at different hospitals which were on different computer systems which could not access each other for records. As regard the post TURBT wash, this can be at the discretion of the doctor as mentioned before. It is also possible this could have been done without knowing. I wasn't told about mine, but when I got the TURBT results, it said I had had a Mitomycin wash during the procedure. In most cases this is done afterwards. If any reassurance, I was muscle invasive and still have everything in working order (touch wood). Best wishes.

Hello again Catfan. Just wondering if you have any news on the check date? People sometimes chase dates with secretaries, or ask for cancellations. Hope the communications are improving....

Denby

Thanks so  much Riley for your reply - that is really helpful. We didn't receive any copies of correspondence from the original hospital but we did get them from the bigger hospital. It's a shame there isn't a consistent approach across the NHS. (We had to go to A&E after the second TURBT and the receptionist said bluntly that the doctors would not be able to access his medical records as his surgery was at another hospital - it seems unbelievable that there is no national database). 

It is interesting to know that you weren't told about the Mytomycin at the time. I only have a discharge summary for the second TURBT and there is no mention of it, so if it was done, I assume it must have been during the first procedure. 

It's good to hear you still have everything in working order - best wishes for the future.  

Hello Denby,

Thanks for your messages - it's really encouraging to hear that things aren't perhaps as black and white as we were led to believe. Our sex life has suffered through the stress of diagnosis and my husband has said that he has suffered some loss of sensation through the various procedures but perhaps that improves over time. 

I've been a bit pre-occupied as he has been for his first cystoscopy and biopsy - it seemed to go as well as can be expected. I was disappointed that the doctor didn't visit him afterwards with any feedback - I think they sometimes have a quick chat?  He asked one of the nurses and she said not to worry, and that they had taken a biopsy and he would need to wait for the results. They didn't do TURBT which they said they would do if they saw a tumour so I am taking that as a positive  - I'd like to think they would have spoken to him if they were very concerned by the appearence but who knows? I'm just hoping things are looking positive and he can continue with the next three BCG treatments.  

Well Catfan it sounds as good as could be for now. My husband had some quite major dentistry privately years ago and realised next day when he went to shave, that he could not feel part of his lower cheek - nerve damage. We contacted the dentist who posted out a tiny plastic bottle of some very high intensity Vitamin B drops. Unfortunately I don't know which exact B Vitamins were in it [and the dentist retired a while back]. But it worked, as he soon regained the sensation in his face after taking the course, even though in the first few days he'd also had an NHS maxillo-facial appointment and they hadn't a clue how to help. So it could be worth checking with your pharmacist/hospital team to see if they have any objection, and getting some B Vitamins to help nerve recovery. 

You could also ask for a referral to the local andrology team [likely actually part of urology dept] for help.

best wishes, 

Denby