Bladder plaque calcification

8 months 2 weeks ago #61887 by Cloudy2
Replied by Cloudy2 on topic Bladder plaque calcification
I’m sorry you have to go through that on a continuous basis. I had one shot of Mytomycin and had severe bladder calcification. I was in severe pain and burning, frequent urination, and urethral pain. If I have to go i when there is no bathroom available I have to go outside (I am a woman, age 63). I get up several times a night. My pain has alleviated mostly except in the urethra. But my bladder is damaged, I have to go a lot and my bladder holds very little.
In my case, I went to Sloan Kettering in NY (I live in NY) and they seemed to not know what to do. There was no scraping or removal. I was told I may lose my bladder. They told me to wait and see what happens. Fortunately it mostly healed , I believe. I wish you the best and I hope your cancer does not recur. Mine hasn’t after 1.5 years. Please let me know how you are doing

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11 years 4 months ago #43471 by sara.anne
Replied by sara.anne on topic Bladder plaque calcification
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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11 years 4 months ago #43468 by 3strikes
Replied by 3strikes on topic Bladder plaque calcification
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; www.ncbi.nlm.nih.gov/pmc/articles/PMC2626932/pdf/IJN-3-385.pdf
The following user(s) said Thank You: goldraph

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11 years 4 months ago #43467 by pemquid
Replied by pemquid on topic Bladder plaque calcification
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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11 years 4 months ago #43464 by 3strikes
Replied by 3strikes on topic Bladder plaque calcification
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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11 years 5 months ago #43457 by sara.anne
Replied by sara.anne on topic Bladder plaque calcification
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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