My 93 year old dad was misdiagnosed over last 5 years and had a few benign tumors removed from bladder by old school urologist who never communicated with us. Combo of Dad not wanting to deal or tell us anything and very poor management by one man show doc.
A resection was done last fall once dad was a bit safer getting out with covid restrictions(and he had been peeing blood and also had retention...) Doc had told him it was likely kidney stones and dad told us that.Seemed unlikely, but iia world I was terrified to take my parents out, much less even visit them here we are.. ......Dad had told us that he was uncomfortable and I finally was able to take him for what I thought/was told was to be a lithotripsy.
That's what we were "told" so imagine my surprise when doctor called from a not great hospitat ( Privileges revoked elsewhere we later learned) and said "Your dad is having a hard time coming out of anesthesia- oh, and we took a piece of a tumor out.. what should we do with him? He doesn't want to go home with a catheter... "
WHAT? and WHAT?? ( I rushed out there and said he has to spend night- my 90 year old mom can't handle this.)
Anyway I guess said doctor wanted to go back in and remove more and install "something" in his bladder for six weeks and he would be fine.. I said "BCG?" cause I have been learning all along ( he was surprised I has a brain in my head.)
Anyway my dad did not follow up . My brother is angry, but I can't really blame my father after all that. And he "fired" him after a lifetime (too long) of loyalty...He even wrote him a polite formal letter saying he needed to part ways.
He met with a great oncologist and had a decent PET scan, and started monthly immunotherapy. Also saw a new GOOD urologist who is very committed and caring. He did a second TURB and it is muscle invasive.
Bladder removal would not work at this this age and with this person. Dad just wants normal urination.. He is besides himself. SO has been receiving radiation of bladder for 16 days to help stop bleeding and kill left over cancer cells. He is generally miserable with side effects. He will have a CT scan tomorrow to see how things are going and meet with urologist.
Sorry for ramble- I believe "standard practice is 6 weeks of radiation/five days a week. We are halfway thru, but not sure he can handle the urination frequency, bowel effects etc. Oh and he gets massive UTIs which I know he is getting when he gets super crazy angry at us. Hard to tell if still bleeding as he takes azo tablets.
Blessings to all of you amazing folks, So helpful actually to simply write this out.
So sorry to hear about your father and his mis-treatment. I really don't know what to say about that. I just wish that he had seen someone competent 5 years ago. I would really be interested in seeing the path report on those "benign tumors" from five years ago!
Not sure about the protocol for radiation for someone in your dad's situation as this is not the usual treatment as you know. Will hope that it helps him.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Thank-you! I don't really know- I just know it is too risky to remove his bladder, and he mentally could not manage. I believe the radiation was to help stop his bleeding and kill cancer cells. Though it could now contribute... I kinda hope he stops and just continues with Immunotherapy. Its thru IV. At least we dodged the "do an MRI with a pacemaker chapter. (we aren't!)
update- on my 93 year old dad. I think we are calling a halt to radiation , but continuing immunotherapy. He had about 9 days to go of a 6 wk standard treatment plan, but he is so worn down. And his legs started swelling, BUN and creatinine slightly elevated. which could be the radiation, not drinking enough, lack of exercise- or kidney issue ( which some of the radiation was for.He stopped all coffee and OJ etc as it was a bladder irritant and hard to get a 93 year to remember to drink water when he would rather not pee as it hurts But that was more fluid he was getting. One nurse jumped to lasiks, a doctor went to putting a tube in kidney... Its too much. We have been playing detective to just get doctors to read results before they go crazy. We want to let him just regain some strength, hydrate, rebuild as best he can. I guess I explore palliative care which I don;t really understand.
We'll prob do a another CT to check on things and recheck blood.
Fyi this is standard protocol for a person of his age. The immunothherapy has been good. The radiation I am not so sure.
From my perspective, you are asking and hitting all of the key issues. Nothing says you must finish treatments; BCG, and or radiation to be effective. When the "cure becomes worse than the problem" you have hit the stopping point.
Dehydration, as simple as it sounds, affects many people. Someone told me as we age, the part of the brain that tells us to drink water does not work as well leading to not drink enough. Makes sense to me.
"Palliative care" does sound like something to explore. Often times it is lumped in with hospice care groups but, it is not end-of-life care. The jist of it is to help make the recipient comfortable and help with some everyday medical chores. Perhaps light exercise, med checks, wellness checks etc. Most cities have 1 or more groups so some might be better than others. In my limited experience, they are wonderful and caring people.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.