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Biopsy Results - what does it mean - help

5 years 7 months ago #44580 by sara.anne
Sort of chiming in here late, but really echo what Alan and Mike have told you. Will also comment on your stating that your urologist is not a "good communicator." You and your urologist will becoming best of friends in the next few years, as you will be seeing him/her every three months for a while and you will be depending on him for advice and treatment. It is important that you have someone in whom you have confidence and rapport. It is easier to find someone new now, if that is what you wish, than further down the road.

I was also diagnosed with low grade on my first TURB. However, there were areas of "irritation" identified. My uro did the recommended second TURB, paying special attention to those areas, and found that I also had high grade CIS. I had the full range of BCG treatments and am now five years out with no recurrence.

As Mike stated, bladder cancer is very often understaged, which is why a second TURB is recommended. The six weeks or so you wait can give you time to arrange a consultation at a place like Sloan Kettering. You are so fortunate to be close to such a center.

Best of luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 7 months ago #44578 by Wicket1
Thanks Mike and Alan.

Yes it was Mitomycin after my Turb. I think I may feel more confident going to Sloan. Not much trust or faith in my urologist, he's not a good communicator. Thanks again for you input.

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5 years 7 months ago #44577 by mmc
Welcome to the site. As you've already heard, if you have any high grade at all you want to treat it as high grade. Also, Sloan is THE top hospital for bladder cancer treatment in the world so that's the place to go. Your uro should be happy to refer you there.

They should do the follow up TURB and that is typically 6-8 weeks after the first. Bladder cancer is often understated which is why it is so important to double check.

Found early, as yours seems to be, this is VERY treatable. Typically, mitomycin is what is given after/during the TURB procedure.

We are here for you!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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5 years 7 months ago - 5 years 7 months ago #44576 by Alan
You will want to heal before the second TURB. Heck, I must have Elmer's disease (a little humor here) I can't remember if it was 4 or 6 weeks later. With "some" aggresive cells you definetly want have that done. A CT scan is probably in order also to be sure there is no other urinary tract involvement. I have learned to ask lots of questions. What, why, what if, how etc. Keep this board posted some others will eventually chime in.

Also, learn as much as you can about your situation from your URO. Was it papillary (mushroom like sticks) or CIS, a flat reddish like lesion. How big? Your path records are yours. Possibly even a copy of the path report would be good if you want a second opinion from another pathologist-which I would do with "some" aggresive cells. My URO said I might of been called grade 2 instead of 3 (most aggresive) years ago but, he didn't want to take any chances. Like any cancer, this is serious but also treatable, beatable and achive peace of mind.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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5 years 7 months ago #44574 by Wicket1
Thank you Alan. If our insurance will allow me, I could go to Sloan or Dana Farber, we are in between both. Insurance gets sticky about going out of state but I will look into it. I want to talk to my dr next week to get more details, as he's on vacation this week and I got the call from his partner. How soon is the 2nd Turb usually done - I had my first one week ago today.

Congrats for being 5 years cancer free. Thanks again. Deb

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5 years 7 months ago - 5 years 7 months ago #44573 by Alan
1st, as most of us would say, sorry you joined our club but, glad you found us. Also, there are a lot of positive and long living survivors here.

The normal protocol is a 2nd TURB because you want to be sure "margins" are clean and be sure this hasn't progressed. While it sounds that is the situation you WANT to be sure. No matter what with your DX I would want a 2nd opinion pathology wise. Second, with "some" high grade cells many URO's would rate you as high grade (I am not a doctor but I am just echoeing mine). BCG is a standard treatment for high grade, stage TA, T1 cancers. Stage 2, 3, or 4 most will encourage a cystectomy. BCG is certainly a viable option from what you have described.

Personally, I would get a second TURB and possibly have it done at a major cancer bladder center. While this is very treatable, many URO's see far more prostate cancers than bladder. I got lucky with mine in the fact he does a lot of BC and actually interned under Dr. Lamm many years ago. If your insurance and accessability travel wise make that possible let the board know what area you live, someone can recommend a good center. I live in Texas and my backup has always been MD Anderson in Houston. I won't hesitate should I have more problems. I am 5 years cancer free so I may be one of the lucky ones, remembering everyone is different and my aggresive tumor was found early.

Keep asking/posting! We all have been down this road with many forks. You'll find help!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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