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Recurrences Every Three Months
My mother was diagnosed with low-grade non-invasive papillary bladder cancer in the fall of 2015. She had a TURBT to remove a large 2″ tumor and had numerous satellite tumors cauterized during the procedure. She was clear for her next two scopes. Since then she’s had a recurrence of a completely new tumor in a completely new location every three months since October of 2016.
What I guess I’m wondering is how these are growing so fast and so often when this is supposedly a slow-growing cancer? How does she go from no tumors and three months later has a new tumor (like clockwork) every three months – all growing from microscopic and undetectable to the size of a fingernail or larger in the span of just three months.
Are there other treatment options other than being sliced up every three months? Has anyone had this type of cancer knocked back by using some other method? Is she a candidate for the intravesical chemo? There has to something out there that will keep her from surgery every three months. Any ideas or suggestions?
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10 Replies
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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.
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
Forum Moderator
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.
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
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.
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
Thank you for the advice. I haven’t been happy about the slice and dice solution, especially with the constant nature of it. I have found another hospital and team of fellowship-trained bladder cancer specialists and I’m trying to convince her to get a second opinion.
I very much doubt that any competent urologist would simply remove tumors every three months. There are several options for additional treatments. The urologist is partly correct inthat BCG is not used with low grade UNLESS it continues to recur. Your mother needs to get a qualified second opinion ASAP.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
All the recurrences (3x since initial surgery in Dec of 2015) have been low-grade. We had asked about BCG treatments after the first operation but her urologist said that unless the grade changes he will just keep doing surgery every time it comes back. The trouble is that it’s come back every visit since last October.
I have suggested going to another hospital and a urologist with a specialty in bladder cancer to see if they have other ideas.
Will this be the norm from here on out? New tumors every three months indefinitely?
So sorry to hear of your mother’s experience. Have the new tumors also been low grade?
One of the nasty little secrets of bladder cancer is its habit of coming back.Has your mother’s urologist discussed the possibility of BCG treatments? That is often recommended for recurring low grade bladder cancer. It also would be a good idea to get a second opinion from a place that has serious expertise in bladder cancer treatment. This isn’t something to take lightly. Too many urologists are not up on the best current treatments and you really want that for her. If you let us know where you are located I am sure that some of our members will have good suggestions for you.
Wishing you all the best
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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