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9 months 3 weeks ago #54753 by sara.anne
Perhaps my choice of the words "garden variety" was a bit off....What I meant was that the type that you have,
urothelial carcinoma, is the most common. This link describes the types (doesn't mention melanoma)

https://bladdercancersupport.org/information/types-of-bladder-cancer.html

If you go to our home page and click on SHOW ALL on the box at the top left, you will find a wealth of information on bladder cancer.

Since you have high grade now, BCG is the way to go. It has been shown to be highly effective in high grade bladder cancer.

It would be interesting if you could obtain the records from your initial diagnosis so many years ago!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 months 3 weeks ago #54752 by Robair
Wow, I did not know of this related to melanoma. I did a quick search and found that .2% of the cases are primary melanoma. When the urologist explained it years ago I am certain that he named the type as melanoma but there was nothing relayed to me about it being rare or the bleak prognosis - not even a mention of it. Not sure why but perhaps it is just my lack of knowledge. It did not seem real and I hesitated to say cancer because my situation was not like what I knew cancer could be like. I showed up, did the cystoscopy, and followed all instructions. I will pursue this with the specialist when I see him after the treatments.

The 9/17 procedure which showed the first 'high grade' report came out as follows:
Bladder biopsy, Trigone:
1- non-invasive high grade papillary urothelial carcinoma. Muscularis propria is present
2- non-invasive high grade papillary urothelial carcinoma. Muscularis propria is present

2 slides.

This report came from Johns Hopkins in MD as a second opinion. Is this more reflective of a 'garden variety' type?

In any case, I am headed to the first treatment this afternoon, hoping.

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9 months 3 weeks ago #54749 by sara.anne
Wow! Yours is a very interesting story! Primary melanoma of the bladder is exceedingly rare, as you probably know. A friend of mine who was a urologist in the army had one such case in her career....got a publication about it. And usually the prognosis is NOT good for bladder melanoma.

I assume that what you have now is "garden variety" bladder cancer for which you will be having BCG? Do you have your pathology report? While there are side effects to BCG treatment, it is usually very do-able and is a life saver for those of us with high grade bladder cancer.

You will do well!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 months 3 weeks ago #54747 by Robair
Greetings,

I am not newly diagnosed, but begin my first BCG treatment tomorrow and this forum has provided something that no other resource has done. I don't know how I will tolerate the treatment and having people who are willing to share their experience helps. Please excuse spelling or inaccuracy of procedure names. Still learning.

I am a 60 year old man who was diagnosed about 12 years ago after a CT scan (for diverticulitis) found a small abnormality in the bladder. It turned out to be melanoma that was non-invasive and low grade. This was managed by removal of the material/biopsy. My Urologist has been keeping up every 3-6 months. I have had up to almost 5 years clean during this time and then it came back about 3 years ago.

My doctor retired and I the new one continued the management. He recommended mitomycin post surgery (9/17) and sent me to the BC specialist in his group. BCG was discussed. I didn't want to do this due to urethra stricture issues from a very hard parachute landing so catheters are irritating and I thought the risk was too high. The results of the biopsy on 9/17 showed we moved from low grade to high grade and BCG was back on the table. It became real at that time.

The BC specialist performed the last surgery and removed some material on 11/30/17 but it was clean. More mitomycin and this time I had side effects that were very tough. They left a catheter in as there was a risk of closing up where the tissue was removed. The mitomycin decided to come out about 15 minutes short of the 2 hours due to bladder spasms - never happened before. It just exploded and I could not stop it, nor could the catheter. I had frequent urination, painful, and minimal output for weeks. I had no energy or motivation and was extremely discouraged because in my 15 plus surgeries I was usually playing tennis the next day. The only exception to that is when they removed tissue from the ureter to ensure it wasn't getting in the kidneys (it wasn't).

It took 6-8 weeks before I saw significant improvement. I am still experiencing some discomfort from the surgery nearly 3 months ago but don't know if it was from the spasms or mitomycin or aggressive surgeon.

So here we are today with the first BCG taking place tomorrow. I post to say thanks for the information and positivity, and in hopes that I can help pay this forward in some small way. This forum has really helped.

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