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Need some guidance

1 year 8 months ago - 1 year 8 months ago #53037 by Alan
Palm Bay,

I am sorry for your turn of events. Sara Anne and Jack have offered really good advice even if it is not what we want to hear. A cystectomy is the best alternative under muscle invasive scenarios. Your URO of 27 years gave you good advice and he isshowing the way to continue living. Ask away further as other questions arise.

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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1 year 8 months ago - 1 year 8 months ago #53035 by Jack R
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Mr Palmbay,

My opinion, you need a third opinion. I suggest a university medical center with recognized urological cancer program. You have the diagnosis many of us hope to avoid - the difference is that we have had time to look ahead.

Pre op chemo is NOT to save the bladder, but to be an early attack on any cancer cells that may have escaped the bladder. Dismissing chemo because "the bladder will have to be removed" seems out of touch with frequent recommendations. Perhaps there is more to the story, or not.

Time is not your friend right now. Let an oncologist opine on a course of treatment.

Below is a list of major cancer centers - listed by the Nation Cancer institute. One or more are likely to be fairly near you.

https://www.cancer.gov/research/nci-role/cancer-centers/find

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 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

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1 year 8 months ago #53034 by Jack R
Here is the Cleveland Clinic link that Sara Anne mentioned. It describes the replacement options for the original bladder, and the limitations on choice at surgery.

http://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion also, http://my.clevelandclinic.org/health/articles/bladder-surgery.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 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

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1 year 8 months ago #53031 by sara.anne
So sorry to hear your diagnosis. Once the cancer has gone into the muscle the only effective treatment is radical cystectomy...removal of the bladder. And this can be life saving. The only question you should be researching is whether you should have chemo before the surgery.
Radiation is not the best treatment for bladder cancer and often causes even more trouble.

If you have any questions about the recommendations of your new urologist now is the time to seek a second opinion ASAP at a place that treats LOTS of bladder cancer patients. You will be making some important decisions about the type of diversion you will have. The most important factor in the success of this surgery is the expertise of the surgeon. You must have a surgeon---urologist who does MANY of these a year and who can offer, if possible the type of diversion best for you...not just the only one he knows how to do! There is an excellent discussion of diversions at the Cleveland Clinic web site. I am not at my usual computer right now, but I am sure that someone will provide it for you very soon.

Your third alternative is not an alternative...it is a death sentence.

Again, sorry you are facing this. I am sure you are in a state of shock. However, you can win this battle. There are many people on this Forum who have been where you are today. They are living full lives.Even driving race cars and scuba diving.

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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1 year 8 months ago #53030 by MrPalmBay
I need some guidance. I have been living under the shadow of bladder cancer for a year now. Initially I was told that it's a good thing because we caught it early, as it appears to be only on the lining of the bladder. Six weeks of BCG, then was scoped & resected only to find out that the cancer was not gone. Had six weeks of Mitomycin, then re-scoped & resected. The doctor said it was all gone & we will re-scope again in 3 months.

Now, 3 months later, I get re-scoped and he says that it looks good, but we need to wait for the biopsy report. That comes back saying that I now have cancer in the muscle of the bladder. He cannot do any further treatment for me because of the local small hospital's limitations, and sent me to see a urologist in Orlando, FL.

Looking at the lab results, this new doctor says I need to have the bladder completely removed. He said that if I try chemo or radiation, I'll just end up having removed anyway. This is based on his 27 years of experience.

I'm guessing that if I call an oncologist, they'll tell me the opposite & want me to start treatments instead of surgery.

So? Which way should I go? Try treatments instead of surgery to see what happens? Or is that a waste of time, and let them take the bladder (and prostate & other stuff) out? Or a third alternative - treat with hemp oils (CBD & THC), or Essiac, and change my diet?

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