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Desparate for some input

2 years 5 months ago #53104 by Jack R
Gil,

It is of course good that you got on this soon after noticing the bleeding. I am awed by the speed with which your care team makes things happen. I would have great faith in them simply because of their responsiveness.

I offer my thoughts as one who is on the final attempt to avoid the RC, and who has had time to ask the forward questions of my care team; here is MY take, based on MY situation.

Chemo before or after RC is a decision for the oncologist to make - s/he can best evaluate which is better or possible in your situation. It can be critical because there can be a high chance that some cancer cells have escaped the bladder, settled elsewhere, and will respond to the chemo. I have been strongly advised to let the oncologist decide.

I find that everybody reacts differently to the drugs and procedures that are applied. My BIG #1 question is, "Who can I call, with authority to act, 24/7 if I suddenly need assistance dealing with treatments". I have been in the situation of needing immediate help and I am greatly comforted knowing that a Named Person is going to be available and understand how important s/he is to me..

As to other questions, I say, "Spill your guts" to your care team, upfront, about your concerns, needs, desires and fears. Do not be shy about asking for specif assistance or reminding the team if "someone forgets". I freely hand out copies of my list of the issues that are important to me - if there is going to be a change in plans, I want to know about it as early as possible, and be involved in the decisions.

Care team includes doctors, technicians, nurses, hospital staff, surgery staff, etc - everyone with whom you will interact on this journey.. I want everyone on board.

It does sound like you have a good team on your side, already aggressively moving in the direction of treatment. That is a really good start !

Please let us know how you are doing,

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 #53103 by Gil80
I had Proton Radiation 7 years ago for prostate Cancer at MD Anderson in Houston
I live in Arizona and about 5 years ago Banner MD Anderson opened here and close to home and so I have had my follow up care here. My PSA has been doing so great that I have been on 6 month visits for last 2 yrs .06 PSA
Three weeks ago I started to pass blood in urine and had difficulty voiding and some discomfort
and with a little nagging from my wife I started drinking a lot. I went to my 6 month visit which was already scheduled and had urinalysis and usual ton of blood work and the doctor put me on 5 days of antibiotic and sent urine for culture. My labs were all normal and PSA was .06 The 5 days passed and bleeding about stopped and I got call from nurse saying urine urine culture was negative and I was back to see the Urologist Oncologist 2 days later who did and exam and ordered CT Scans of abdomen and pelvis and I had those done the next day and that afternoon got a call from urologists saying I had a tumor in my bladder to large for the cystoscopy he was planning and now I am scheduled for TUR in 3 days.
I know he can't Stage or Grade the tumor till biopsy is complete but looks like it has invaded the bladder muscle and removing the bladder is a given. I can not have radiation because of the Proton Radiation I had to the Prostate Cancer so I will need Chemo
I am 80 yrs old and very healthy and active and enjoy travelling, driving and cruising. Recently had full cardiac work up and excellent results, had upper and lower GI studies and all good
CT Scan doesn't show cancer any place else--we hope but know lymp glands need biopsied
So my questions are
1. Any experience with chemo before or after bladder was removed?
2. Side effects of chemo and how often daily or weekly
3.What option worked the best
4.Any thoughts or question or thing I should ask or read?
Appreciate any and all input, Thanks

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