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Help! Shellshocked once again!!!

13 years 3 months ago #8652 by Nix
thank you for the information - for sure I will be on the phone with the Moffitt Cancer Center tomorrow at 9AM Sharp!
thank you to everyone who took the time to write, I do not know how I would have gotten thru this weekend without all of you

Nancy S
dx Ta 11/06
dx Ta CIS 10/07

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13 years 3 months ago #8649 by dmartin12358
Hi Nancy,
You've received good info from others, here are my thoughts.

BCG has been showen to reduce recurrences and progression. The key word is reduce, not prevent. With intravesical therapy (BCG), there are a number of possible outcomes. The best outcome is no recurrence. The next best outcome is recurrence that remains localized to the bladder, where intravesical therapy can be continued (perhaps with interferon) or the bladder removed. The least favorable outcome is that CIS progresses to the urethra or ureters or pelvis of the kidney.

CIS is considered dangerous because it is less predictable than other types of blc. I had CIS along with T1G3; this is how I looked at the predictability aspect of CIS.

Low grade cancers (such as TaG1) can progress to TaG2 or TaG3. Should this happen the cancer most likely remains localized in the bladder and other treatments can be very successful. There is some predictability here which both doctor and patient prefer, obviously.

One thing to understand is that the cells that line your bladder also are the same type of cells that line your urethrea and ureters and pelvis of the kidney, and CIS can also invade these cells. If CIS appears outside your bladder (urethra/ureter/kidney), this prognosis is less favorable.

Please get a second opinion. While there are many doctors who practice conservative treatment, be sure to get an opinion by someone who treats CIS aggressively. These doctors practice at the major cancer centers. That way, you can decide for yourself which treatment you prefer.

I am so upset I did not do the history. Last Nov I had Ta - I did 6 wks of BCG first cysto clear - second some red spots - dr did biopsy in office came back clear - dr did a fish test to be sure. Fish test came back neg. At the same time he did one more biopsy - last week it came back very low grade cancer. He did the next cysto a few days later in the hospital and everything came back CIS. Even my urine tests were neg. So when i heard CIS today - I was/am speechless. Can anyone help me? He is suggesting 6 wks of BCG - but I am afraid in the meantime the CIS will become invasive. Right no it is not.

Dx 7/04, CIS + T1G3, Age 50
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)

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13 years 3 months ago #8641 by Nix
thank you fearandfight for your listing. I have Moffitt cancer center on my schedule to call tomorrow morning. Do you feel it is better going thru a cancer center rather than a general Uro?
And also = thank you for your patience. I am just a little spastic right now - I really don't want to sound like a whinner.

Nancy S
dx Ta 11/06
dx Ta CIS 10/07

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13 years 3 months ago #8640 by Mike
Nancy here a good link with some good cancer and oncology centers down in the Tampa area. I hope this helps you some dear. Joe ;)


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13 years 3 months ago #8637 by Nix
I am trying to get names of dr in my tampa area for second opinions now. We are not real familiar with this area, haveing just moved here three yrs ago. Up to now I am pleased with my dr however, I know it is important to have more insight than one dr.
Thank you for your kindness.

Nancy S
dx Ta 11/06
dx Ta CIS 10/07

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13 years 3 months ago #8635 by wendy

I am just not sure I want to waste time on BCG or go straight for the My...(sp)(not sure of all the spellings yet.
Thanks for your reply, I am trying to gather as much info as I can the next 2 wks.

Hi again Nancy,
Mitomycin or any other intravesical chemo is considered less effective for CIS than BCG is. The new guidelines in Europe and the USA state that the best time to have mitomycin or another chemo drug instilled in the bladder is within 24 hours of the TUR, to delay recurs; this is being done now whether BCG is planned or not. Although it's becoming standard, it takes years for these changes to trickle down, so I wouldn't be surprised or upset if your doctor didn't follow it.

State of the art info on the subject say that administering a buffer (I think it's done by drinking sodium bicarbonate) and draining the urine increase the effectiveness of the treatment:
http://blcwebcafe.org/mitomycinprotocol.asp , and this simple innovation can be applied to whatever chemo drug gets instilled. I heard an expert say it may be the most important aspect of giving intravesical chemo, more important than which drug is used or how long it's held!

Believe it or not, it isn't considered a failure if someone has a recur a year after BCG, and treatment is usually given again or with the addition of Interferon. If CIS is present at the dx, then maintenance BCG or BCG+IFN is added to the 6 rounds. You can read up on it under 'treatment options: immunotherapy' on WebCafe.

There's a ton of studies comparing Mito to BCG, all of them say the two treatments are about equal...except in case of CIS-then immuontherapy is proven to be more effective. And it's now known that only BCG can prevent progression of stage with high grade blc (about 75% of the time), while the chemo drugs only delay recurrences but work better for lower grade cancer.

If you need articles on the subject I'm sure I have some stored.

I'm sure that the second path opinion from Johns Hopkins will help you and your uro decide on the best path, are you getting a second opinion on treatment options as well?


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