Recurrences Every Three Months

6 years 9 months ago #53515 by Alan
Replied by Alan on topic Recurrences Every Three Months
To add and agree with Sara Anne's observations. I have seen where low grade has morphed into high with the mushroom/flower (papillary) types of tumors. Plus, adding a fresh set of eyes may have some new insight. I'd aim for one of the major bladder cancer such as MD Anderson, Northwestern U, Sloan Kettering etc or a large teaching hospital setting.

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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6 years 9 months ago #53514 by sara.anne
Replied by sara.anne on topic Recurrences Every Three Months
Your analysis is "right on." Something has gone haywire with the immune response in the bladder lining so that it is not responding appropriately to whatever is initiating the cancer. That is one reason that BCG is effective since it is infused into the entire bladder, not just on one particular spot.

Your mom needs a new urologist!! (Just my opinion)

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 9 months ago #53513 by bypeep
Replied by bypeep on topic Recurrences Every Three Months
Okay. We will get a 2nd opinion. And just to clarify about the "whole bladder involvement" concept...

Her urologist told her that these cancers were like dandelion seeds and they would keep plucking them until they were all gone and then it would eventually stop. Am I correct to assume that indefinitely "plucking them" will not prevent new ones from forming in tissue that is in some way damaged at the cellular level? I am under the impression that her cells are just going awry over the entire surface and it's not a simple matter of ridding it of seed cells as he has described.

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6 years 9 months ago #53512 by sara.anne
Replied by sara.anne on topic Recurrences Every Three Months
You are absolutely correct when you say that "the whole bladder" is involved. That is why bladder cancer comes back so often. The situation is unstable. And while occasionally a small piece of tissue is removed during cystoscopy without anesthesia (I had it ONCE) that is not the usual procedure for multiple samples.

The primary problem with multiple recurrences is that this can lead to a point where bladder removal is the only option. While many patients lead full lives without a bladder, it is best to avoid this if it is possible.

Please get her to a second opinion!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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6 years 9 months ago #53511 by bypeep
Replied by bypeep on topic Recurrences Every Three Months
Thank you, Jack. Yes, the constant recurrences are frustrating and very concerning to both myself and my mother. The first surgery was in Dec of 2015 to remove the main tumor and cauterize satellites. She was clear in March and June of 2016 for her first two quarterly scopes. She went in October (at the 4-month mark) and had several new "tumors" which they cauterized in the office causing her extreme pain and anxiety because of how many had appeared. They removed several for biopsy - again a very painful procedure with no anesthetic. They called her to tell her they weren't cancer but inflammation. She went in January of 2017 for her next scope and they found another new tumor by her urethra. The location of it required general anesthesia to remove. That was done on 2/14/17. That turned out to be cancer again. She went in for her next three month scope in May and now has another tumor/tumors. She was so depressed she didn't even ask about the size and number. She's going in Tuesday for another TURBT. She asked him during the May scope why he wasn't doing more and he just told her they'd keep cutting them out as they appeared and unless the grade changes, this is all they will ever do. It just seems like for these tumors to be so frequent and appear so rapidly (seemingly?) that it her entire bladder must be covered in dysplasia or something. I can't imagine a low-grade, slow-growing disease process to sprout entirely new tumors the size of a fingernail in just three months (like clockwork). There must be something already there and because these are always in new locations my mind keeps telling me that her whole bladder must be involved.

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6 years 9 months ago #53509 by Jack R
Replied by Jack R on topic Recurrences Every Three Months
Bypeep,

IMHO, you are taking the right proactive approach is trying to get a second opinion.

While there is general agreement among the various urological societies that low grade BC is best treated by tumor removal, the point at which actual treatment of the underlying disease should be started is less clear. The recurrence of tumors in a short time is an event of concern recognized to trigger consideration of more aggressive treatment.

Some people worry that obtaining a second opinion will "hurt their current doctor's feelings". A second opinion may actually support the first doctors recommendation. Second opinions are standard when cure or control of any disease ceases to be a simple matter.

Bladder cancer is highly treatable when caught and treated early. Don't let time slip away; make sure that you have a viable treatment plan.

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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