Newbie

7 years 5 months ago - 7 years 5 months ago #52325 by Alan
Replied by Alan on topic Newbie
Bob,

First welcome. I concur with Jack and also second that maybe a set of "fresh eyes" as a second opinion might be good considering your previous cancer. Noting that 10 years ago what happened this is probably unrelated. IF you do a second opinion be sure to hook up with someone that does most if not all bladder cancer. So many URO's see a majority of prostate cases and this is a unique cancer. A major teaching or research hospital such as Cleveland Clinic, MD Anderson, Sloan Kettering etc. Also, a CT scan is often done as an added diagnostic tool to be sure there isn't anything else affected in the urinary tract.

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.

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7 years 5 months ago #52320 by Jack R
Replied by Jack R on topic Newbie
Bob,

Welcome to the site. No doctors here, just people caring for or with bladder cancer, so no medical advice. This is a great place to get a patient's perspective on issues, either by asking or from reading the files.

Seems that you have a cancer care team already, and you may have good reason to accept their judgment.

There may be a variety of opinions heard here - you have to decide what is best for you.

Caught early, bladder cancer can be quite treatable. Sometimes a TURBT and regular observation, watching for the highly likely return, is the course for BC.

I would (and did) be asking for some further investigation, both at the start and regularly. I confess to feeling uncomfortable trusting a pair of eyes looking into my bladder to be the only diagnostic tool deciding what the cancer is doing. That's just me.

Bladder cancer can move up and down the urinary tract. Additional tests might be a waste of time and money OR they might catch a problem early. I'd like to catch anything early.

Below is a link to the American Cancer Society (ACS) file on BC diagnostic tools. This file has good background information.

www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-diagnosis

I have been through the full set of tests, except the bone scan, but my situation is most likely different from yours. I presented with symptoms, and there was confusion as to the cause at first. Finally, a complete workup, as described in the file, provided good information.

People here report a variety of treatment plans for similarly described situations. Clearly there is a lot of variation between care teams. You may or may not want to consider getting a second opinion from a major cancer center, given your history - you call.

Again, this is not medical advice, but a description of other possibilities. Talk to your doctors about any of your concerns, and be prepared with good information.

Best,
Jack

6/2015 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
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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7 years 5 months ago #52318 by bobafett67
Newbie was created by bobafett67
Hi - new to this forum. Nice to meet you all. I'm a married 49 year-old male with 3 kids. I was recently diagnosed after a routine check-up at my urologists office. Had no symptoms or signs. Just a fluke finding. On the ultrasound, my doctor saw what he thought was a low-grade tumor in my bladder. He then did a cystoscopy a few mins later to check and low and behold there it was. He said it was probably low grade and not lethal. I had a TURBT with mytomicin on 11/1 and got the results last week. He said it was about 8 mm, "a step above a wart" and was graded 0a. He said it was low grade. I am of course freaked out as I was diagnosed with testicular cancer 10 years ago and thought I was done with all of this. I asked if they were going to do any scans or bloodwork and my urologist said no, just come back in 3 mos for another cystoscopy, and 3 months after that an so on, which is very familiar to me as I did a similar type of surveillance after my TC. My only concern is they don't seemed concerned. After my TC surgery 10 years ago, I had a CT scan right after surgery and blood work. My oncologist spoke to a specialist and she said that the TURBT with mitomycin was the protocol and that she wouldn't do anything more at this time. Does that seem in line for this kind of thing? I consider myself to be lucky to have the doctors I have and they didn't steer me wrong last time, so I think I should listen to what they're telling me. Just very anxious that I have to deal with this all over again. Would appreciate any advice and support at this time. Thank you!

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