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Bladder plaque calcification

6 years 1 month ago #43471 by sara.anne
I would second (third?) the suggestions that you seek a second opinion at a MAJOR center for treatment of bladder cancer. You obviously have a condition that is not that common. You aren't far from Mass General or even MSK in NYC.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 1 month ago #43468 by 3strikes
I have been finding a little more info. Other research by same group has found similar but distinct DNA in calcifications in other body parts. Getting my head around it slowly.

For a little light reading on the bladder; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2626932/pdf/IJN-3-385.pdf

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6 years 1 month ago #43467 by pemquid
I don't have anything to add, as I've never head of calcification like this, but just wanted to say I live in Maine too (Bangor). I've just been treated by a local urologist, as I've got a very uncomplicated situation with regard to bladder cancer. However, if I were in your shoes I wouldn't hesitate to go out of state to get some answers. Best of luck finding out the source of this and getting rid of it. Is calcification of this type something that happens only in the bladder, or does it occur elsewhere as well?

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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6 years 1 month ago #43464 by 3strikes
Thank you for your responses. I have been to the big one in Maine, Maine Medical Center as well as other local. Boston is a possibility.
In many ways I may be looking for a lab more than a physician. The most detailed paper I have found simply says an extended culture in a "special medium" is required to get a successful culture of a nano type of bacteria. It is not that I am convinced that I have this type, I just do not see any other possibility with a treatment option.

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6 years 1 month ago #43457 by sara.anne
I would strongly second Catherine's suggestion that this is the time to get a second opinion at a TOP bladder cancer site. Once something such as this, which is not the routine, hits, you need to get care at a place that sees enough cases to have experience in the unusual/untypical.

If you give us an idea of where you are located, some of our members will no doubt have suggestions for just such a place.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 1 month ago #43454 by CatherineH
I don't know anything about calcification except the few articles I found on the internet. The only comment I have to offer is to seek out a new doctor/hospital for a second opinion, especially if this is posing a risk to your kidneys. There are some top hospitals in New York and Boston if that is an option for you. Wherever you choose, please make sure it is a top hospital in urology.

If you let us know which area you would be able to get to, there are people here who can recommend further as to medical centers and/or doctors. So sorry you are experiencing this kind of complication and pain.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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