Every patient needs an advocate to help sort out the choices and evaluate the possible outcomes. It can be overwhelming for the patient to do it alone.
You will need to ask all the questions about possible options - what it involves, recovery time, changes in every day life after each option, rehabilitation, quality of life after, etc.
Fair to say that many of us here are willing to try most anything to keep our bladders; it sounds like dad has passed over that line, and the goal changes to seeking the best outcome that matches the lifestyle dad planned for his future.
I suggest the following for backgrpound reading, making the assumption of a bladder removal, to provide some background.There are many areas to explore in that file.
We hope for the best for you dad. He will need your support. You can post any specific questions in this forum, and receive answers from others with bladder cancer (and their supporters).
Remember to take care of yourself as you take care of you dad.
What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back...
3 years 5 months ago - 3 years 5 months ago#52154by LewisAK
Well folks it's been quite a ride since January 2016 my dad started having to go to the bathroom a lot but no blood in his urine at all. I thought it was his prostate he never had problems before. So being 76 his doctor referred him to a urologist. Did the finger up the butt prostate was great and did a urine test and the doctor said there was microscopic blood in the urine not visible to the human eye and it's his job to find out what is causing it.
Doctor did a CT and a cystoscopy in February told us my Dad had a tumor but on the CT it looked fully contained.
TURBT done March 2016 doctor perforated my Dad's bladder. Two days later my Dad ends up in the hospital six days.
Path report comes back week my Dad is in the hospital as high grade
Dad gets out of hospital 136lbs down from 152lbs on the day of his TURBT. Was 162lbs to start the year.
Referred to one of the best oncologists in Arizona specializing in bladder cancer in April. Started my Dad on chemo cisplatin/gemcitabine.
My Dad completes four rounds of chemo, ends up in the hospital in July during the third round with sepsis for five days and beats it. Also during chemo a nephrostomy tube was put in, in May because the tumor was causing hydro on his left kidney.
His oncologist told us in June my dad responded well to chemo and the tumor shrank, but my Dad's bladder needs to come out, referred us to mayo phoenix said a doctor is fantastic up there does them all the time.
We drove up, they did a CT at mayo cancer is in my Dad's pelvis said he needs radiation before surgery.
Started radiation Aug 30 finished October 4th 25 treatments done. Dad's weight 149/150lbs tired after radiation very bad bowel cramps. Told the cramps would calm down after a few weeks.
PET scan this week at mayo if no spread a Radical cystectomy first week November at age 77 but can't be done robotically because his surgeon says he needs to see every thing and my Dad will be given intraoperative radiation when he's opened up.
Doctor is giving my Dad a 10 percent chance of full cure said he could get in there and it could look great and go to 100 percent maybe. My Dad is on no prescription medication at all, has a healthy heart, and has been active his whole life,.
This surgery scares us all, apparently 80 year olds do this all the time but it's a big surgery for my Dad at 77 and the doctor told my dad he's going to be bringing the pain because my Dad has to be fully opened up. My Dad does not do well with pain. Doctor said if he does not do surgery the cancer could get very bad and painful over time because that is they way this disease is and my Dad would have wished he had surgery and at that point it would be way to late. Said if it was his Dad he'd have him do it 100 percent.