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Diagnosed with PUNLMP in July, it is back

5 years 11 months ago #47495 by apb
Many thanks for the helpful guidance. The tumor was discovered in July during a kidney stone surgery. At the time he sent it to pathology and took a wait and see attitude when he got the pathology results ("favor benign").
Now that it returned, he intends to do a Turb, add Mitomycin C after surgery while under. Followed by BCG. Time for the full out assault.

It makes sense that the immune system would be less effective when triggered to attack a cell that is more benign. I understand now why the PUNLMP may be hard to treat to prevent to reoccur. But I realize if you have to pick one, this is the one... so certainly not having a pity party. I know I am fortunate.

Thank you for the education. I am trying to not let emotions take over rational thinking...

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5 years 11 months ago #47494 by sara.anne
Cancer cells do slough off into the urine and are expelled this way. This is the basis for the urine cytology tests which are often used, along with cystoscopy, to monitor the return of bladder cancer. It is unlikely that they would "reattach" and cause cancer to reform.

Bladder cancer tumors form on the lining of the bladder partly because the immune system in the bladder lining fails to destroy them. Bladder cancer tends to come back because of the failure of the immune system. BCG is used to stimulate the immune system in the bladder lining so that it does react appropriately to any new formation of tumor cells. I admit that this is a very simple summary of what is probably going on!! :laugh:

If the initial diagnosis is that the tumor is small and low grade, BCG is normally not recommended. Rather a "watch and wait" approach is used. With a little luck the tumor does not return. However, if it does, then BCG is considered. It tends to be a bit more effective with high grade tumors which are more rapidly dividing but if the cancer is returning, there is activity in the cancerous areas and it may be effective.

Hope this "explanation" helps

Sara Anne

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

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5 years 11 months ago #47493 by fighterm
I maybe wrong but I think that cancer cells are present in the urine and can stick to the bladder surface in new places. That is why the bcg treatment I'd so important, because it causes the shedding of the lining of the bladder. Also the cancer cells can proliferate via blood and lymph vessels. I guess that's why some doctors don't want to do a big scoop of tumor in the first turb. If they get good margins without going into muscle and into blood vessels there will be a lesser spread. As I said I can be wrong, as I am reading now a lot and trying to understand about this cancer and preparing for my first pre operative appointment with my uro. I am wondering why he did not do bcg for you in July after the turb. I would ask him this question.

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5 years 11 months ago #47490 by sara.anne
Well, yes it can be considered a "nuisance." It is low grade, which means that if it is going to spread it it going to do it slowly. BUT the big deal about low grade bladder cancer is that DOES comes back. And that is no doubt what happened to you, which is why the frequent checkups are so important. Since it did return your urologist is considering a series of BCG treatments after you heal from your next TURB. He is probably planning to use a wash of Mitomycin C after the TURB.

If you are in Houston you are at the mecca of second opinions, MD Anderson.

Good luck to you

Sara Anne

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

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5 years 11 months ago #47489 by apb
Same location.
It was a small tumor back in July (<1cm). and it is a small one again (<1cm).

What does this mean? My urologist says not to lose sleep over it, to consider it more of a nuisance. We are scheduling another surgery, this time he may put some type of treatment in bladder after surgery, and he says we may do BCG.

I feel fortunate to have a very low stage diagnosis. What would you speculate happened? Some cells were left behind and they managed to grow back?

I am in Houston. The doctor is a urologist. Should I get a second opinion, and if so do you have a recommendation?

Btw, I am 46 yo

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