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Micro Papillary
I had my first procedure (TURB) on 20 Aug and was told a few days later that there were 4 small tumors all in the same area. They were small, about a 1/10 of an inch in size which had gotten to the interconnecting tissue and thus I was being diagnosed with Stage1, but that it was High Grade (T1hg). Of course I started reading everything I could find and eventually convinced myself I’ll probable be able to survive. However, there were a couple of details that were left out of the phone call giving me these results and when I actually got the pathology report and read it there were 2 things that I read and have since tried to research that really made me think that that things are much worse than just T1hg and most of the treatment options for this stage/grade are really not applicable to me. Now I’m in a panic and do not know what to believe ….
The first thing a read was “invasive high-grade papillary urothelial carcinoma with micropapillary features (approximately 25% of the tumor). The next sentence read “Tumor extensively invades lamina propria. Muscularis propria (detrusor muscle) is not present for evaluation – multiple levels were examined.”
On 5 Sept I went back in for a 2nd resection (which is when I got a copy of the pathology report) and during the procedure they were able to confirm that there was muscle tissue in the specimens and I’m waiting for these results as I sit here typing.
It is VERY difficult to find much about micropapillary, but what I can find says it’s BAD and given the extensive invasion of the lamina propria notation I’m worried sick that it’s more than T1 and I’m going to be told next week to go home and get my affairs in order.
Does ANYONE know where I can find ANYTHING about micropapillary tumors and the what happens if it’s not just Stage 1 ?? Help !
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4 Replies
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One More Flight,
Being rather uncommon, micro papillary bladder cancer (MPBC) information can only be drawn from a small pool of original investigation. The following is based on the 2016 article linked below. It is heavy on small sample statistics, followed by understandable summaries.
Frequently noted in articles about MPBC is a “poor outcome”. That statement requires a bit of explanation. If the comparison is made between “all” cases of bladder cancer and “just MPBC”, the statement is supported. However, if “all” and “just MPBC” are compared based on Stage and Grade, the overall survival stats are nearly identical.
MPBC is generally detected a later stage than general bladder cancer; there in lies the explanation for the misunderstanding. T1 or T2 MPBC can not be compared with other forms of T0 bladder cancers.
MD Anderson is frequently cited as the largest reporter on MPBC treatment and outcome.
It is my impression that authors do the public a disservice when the outcome of rare forms of bladder cancer are describe as having “poor outcomes” without explaining the reasoning.
See table 2 “Overall Survival” for an apples to apples comparison.
Everyone, with aggressive advanced bladder cancer of any etiology, should be seeking the best treatment and outcome possible There is no benefit to being told that a particular variant is worse than others. Be prepared to seek the best advice available.
“Micropapillary Bladder Cancer: Insights from the National Cancer Database”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5181670/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
I am sorry for the reason to be here however, there are many stories of success!
As I live in Texas, MD Anderson has always been my backup should I need them plus I have had several friends/aquaintences use them. The whole department is world renowned. Dr. Kamat seems to be the one I am most familiar with. As I understand it, one can self refer to them. See: https://my.mdanderson.org/RequestAppointment.
Should you go there, Hobby airport is probably the closest. There are also several close by motels with shuttle service and the J.C. Rotary House/Motel run by Marriott that is right on campus. See: https://www.mdanderson.org/patients-family/becoming-our-patient/getting-to-md-anderson/traveling-to-houston/rotary-house-international.html
Good luck wherever you go and ask away as someone will have a “been there and conquered” help.
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.
Thank you for your response,
I am located in Central Florida, but am willing to travel to be wherever I have to, to be where I’ll have the best chance to receive treatment that can save my life.Thanks again, I will start with the list of institutions in your email.
If anyone else knows where I can locate information or people/doctors/institutions that specialize in this, I sure would appreciate hearing from you.Thank you !
As you have probably discovered from your reading micropapillary bladder cancer is relatively rare It is not something that you would want to fool around with. I would definitely recommend that you get yourself to a place that specializes in complicated bladder cancer cases such as Memorial Sloan-Kettering in New York City, Johns Hopkins in Baltimore , M.D. Anderson in Houston or the national Cancer institute in Bethesda Maryland . There are several other places you might consider and if you tell us where you’re located geographically someone may have other suggestions for you .
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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