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Good news and a question for fellow fighters

11 years 10 months ago #3362 by wendy
Hi,

How many tumors were removed? Ta, G1 tumors are starting to become known as 'PNLMP" or papillary neoplasms of low malignant potential. They are still working on it though, and want to find a name that doesn't use the words 'cancer' or malignant'. But...these tumors are still a form of cancer due to the clonal nature of them, so there is always a small risk of less than 5%, that it could change.

Rosie makes a very good point, but there is more to your situation. You had more than one neoplasm. Guidelines consider 3 or less low risk, but more than 3 high risk.

It's a good sign that there was no actual recurrence. Recurs in the first year put one in a higher risk category, thus close follow up of 3 months until a year has gone by with no tumor occurence.

I suppose your doctor is VERY confident in his diagnosis. It's the pathologist that must be the expert here, though.

Many early recurrences are things that were missed the first time or the result of re-seeding of cancer cells. Thankfully there's a new product in the pipeline that can see much more than a regular cystoscopy can and it improves detection by a large margin, http://blcwebcafe.org/hexvix.asp It's scary to think that our gold standard can miss so many tumors! This diagnostic tool is in phase III trials in the US, and is approved already in Europe.

The re-seeding problem has been addressed with the recent addition to the guidelines which recommends an instillation of chemo into the bladder, post TUR, even for low grade tumors. They say this delays recurrences. It's about making the field more cost efficient and saving even one TUR per patient adds up to big bucks.

I have my own reservations about this approach with Ta,Grade1 tumors...and I'm glad that my sister's doctor did not do this, even though she had 2 recurs the first year. All were single, less than 3 cm (lowest risk). They could have been leftovers, or re-seeded by the TUR itself. And intravesical chemotherapy has its own side effects on the bladder both long and short term. So the benefit should REALLY outweigh the risk; as somebody who doesn't care about cost effectiveness (it's out of my field of interest!), I would rather skip the chemo. As your doctor did...

I hope you are one of those whose tumors just stop coming. It happens.
Good luck,
Wendy

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11 years 10 months ago #3346 by Rosie
Many specialists in bladder cancer believe the every 3 months cysto is excessive with those who have a low grade papillary tumor(s). That protocal was established many years ago prior to the newest long term test trials on people with low grade papillary tumors. It seems so many of the less informed urologist are still requiring a 3 month cysto and/or immediate removal of even the tiniest non-threatening growth rather than waiting. I would be a bit angry if I was put through another surgery because the doctor did not wait to verify that a growth was inflammation.

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11 years 10 months ago #3297 by timb
When I had low grade tumours that were very small, the gaps between cystos were 6 months to a year. I think my largest gap was 2 years. I think you can probably relax but make sure you keep your appointments. As I found out , things can change. However, I think you'd be unlucky. Many of these low grade papillary tumours carry on being just that and are more of a nuisance than a threat.

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11 years 10 months ago #3294 by Bob_P
Bob,
That's great news on the Cystoscope!  (Yay is right!)
My Uro. says every 3 months for me after my initial TURB. I'm facing my first one in about 6 weeks.
I'm sure Wendy and Rosemary and the other great people in here will weigh in with some sound advice any minute now.....................

Bob P.

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11 years 10 months ago #3287 by bobledrew
Hi all:

First the quick back-story. I'm a 40yo male, never smoked, fit, healthy, father with bladder (and four other) cancers. After macrohematuria, I started testing and in July was diagnosed with BC. August, had a TURBT in which several "papillary urothelial neoplasms of low malignant potential" were removed. 3 month followup found one small growth (2mm). Removed via second TURBT in December. Just returned from a followup with my uro, where I was told the second growth was not malignant tissue, but was inflammation. (yay!). So right now, I'm cancer-free. :D

Uro's recommending a 1-year followup cysto, and no further followups if that one is clear as well.

I'm happy, but a little worried that a year may be too long to wait. (I was braced for three month cystos for a year or two minimum) Six months? Anyone have thoughts?

Thanks in advance.

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