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Am I moving to fast?

2 years 5 months ago - 2 years 5 months ago #52751 by Jack R
Leon,

Congrats on earning a big "A". ;) Maintaining a sense of humor can be a big asset (pun intended) while dealing with bladder cancer; I'd guess you are ready to jump on this speeding train.

As to finding supplies, etc, may I suggest that you use every resource the doctors, nurses and hospital have to offer. Many cancer centers have 'nurse navigators' he/r duties are to guide you through the WHOLE process and make your transition to your new normal as smooth as possible. You may also find that you will be working with a special 'nurse educator' as you learn to take care of your new bladder - it works different fron the old one. And of course, you will have lots of visits and will become best of friends with your urologist over the next couple of years.

Ask all these people ANYTHING that comes up - there are no subject too embarrasing or off the wall (believe me, I tested this out). When I meet new people on my care team, I like to ask, "How do I get hold of you when I have questions ? May I have your card ? Do you prefer a phone call or email. Who is the emergency contact, should I panic over something?, and how do you like to be addressed - Dr Jones or Jim?" I ask this of ALL of the care team members - I want a village to remember me and help care of my bladder.

Spill your guts to the care team about any concerns right up front. ASK until you have a good answer. You are entering uncharted territory, you need a map of the 'hood. No one blinked an eye at my questions, they have heard it all, and they know where the answers are. Even if it seems strange to ask the 20 something (male or female) nurse about sex or how to gracefully pee in the woods on the back 9, ASK. No more holding back until you 'finally break down and go to the doc'.

I think you are going to do fine. Ask here too. Remember to write and let us know how you are doing. Other will want to know, there are lots of lurkers here.

Best
Jack

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 , round 3
Begin year 4 with cis

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2 years 5 months ago #52750 by Pineapplekid
Makes me feel better that all posters so far don't think I am moving to fast, I was trying to outguess myself about the speed this was going.
Passed my colonoscopy with no problems a few hours ago ( guess that makes me a perfect A** hole) and that was the last roadblock to having the Cystectomy
I believe my choice will be an ileal conduit especially at my age it would create the least problems.
Thanks to all for responding, now I have to do some research on where to get supplies once the operation is over, no place on this Island ( Kauai ) has or sells the bags or any other supplies I will need so I will have to get them online which sometimes takes some time here in the Islands.
Thanks again and Aloha
Leon

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2 years 5 months ago #52749 by mammoth3128
Iwas diagnosed with high grade non invasive BC 1.5 years ago. 3 Turbts later and 15 BCG treatments did not work well. I ski 70 days a year, work out, never smoked. Had my prostate out 3 years ago with no side affects. Will be having bladder removed in march and going indiana pouch as I had a small invasion of the urethra. Surgery at UCLA by DRs. Raz and Reiter
since you are dealing with high grade w/o muscle invasion it is best to get it out. Please make sure you are at a major medical center and surgeons that ARE HIGHLY experienced in this surgery
The following user(s) said Thank You: Pineapplekid

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2 years 5 months ago - 2 years 5 months ago #52745 by Jack R
Leon,

I would support your decision to proceed with bladder removal, given the facts as you have presented them. The only metric I would question is a 99% chance of recurrence; highly likely, yes.

I am skirting the edge of BCG treatment failure, and decided to keep on with BCG as long as progression was not found. At the first sign of the cancer moving toward invasive my bladder will have to go. Not a real easy decision, but given the alternative, it is the one I can live with. Thus my agreement with your plan.

Time for you to make a quick decision on what sort of bladder replacement you might wish for, and be prepared to discuss that with the doctor. Check the files here for continent diversions (Neobladder, Indiana pouch, etc).

Check this link for more on diversions.

my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion

Best
Jack

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 , round 3
Begin year 4 with cis
The following user(s) said Thank You: Pineapplekid

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2 years 5 months ago #52744 by sara.anne
IMHO, I don't think you are moving too fast. If it has invaded the muscle and is as large as you said, and is high grade, my decision would be the same as yours.

Many people live very full lives without a bladder!

Wishing you the very best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: lotech35, Pineapplekid

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2 years 5 months ago #52743 by Pineapplekid
After years of believing the prostate was the problem and doing the herbal medications for relief the problem became unbearable and I broke down and went to a urologist.
Lucky my GP had just sent me through a ultrasound of my bladder area so with that information the urologist sent me for a CT scan of the pelvis which showed abnormal appearance and complete obstruction of the left ureter.
A Cystoscopy was preformed which clearly showed the bladder tumor, I was scheduled for a TURBT the next week
in next day surgery but had to spend that night in the Hospital.
Pathology report came back very bad tumor had been as large as the palm of my hand and very deep. It read Urothelial Carcinoma high grade with papillary, micropapillary, squamos, glandular differentiation and focal undifferentatiated.
it suggested muscularis propria invasion
However no Lymphatic invasion or vascular invasion
The Urologist told me she went as deep as she could with out penetration of the bladder wall she was able to clear the left ureter.
I was sent for a complete CT Thorax with contrast and a nuclear bone Scan which both came back clean indicating the cancer is confined to my bladder.
I met with the Urologist and she suggested I may have to have a 2nd TURBT to try and remove the remaining part of the tumor and for more pathology samples. I asked why since we knew the cancer was a high grade with a 99% return factor and at this point the rest of my body showed it had not spread why wait and give it a chance.
The Urologist said she felt the same way and since I live on Kauai Island and the Hospital here lacked the facility to preform a Cystectomy she would contact the Urologist at Queens medical center in Honolulu to get their opinion .
I will hear from her tomorrow on what the Honolulu people have to say ( Queens Cancer center is affiliated with MD Anderson Cancer center in Texas.) My Urologist worked for many years at a Veterans Hospital and has seen more than her share of Bladder cancer from the Vietnam Vets she treated there.

Am I missing something and moving to fast ?? I am 75 years old and want the cancer out of my body the rest of me looks and acts like I am much younger ( everyone says anyway).
Aloha from Hawaii
Leon

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