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2nd opinions/pathology slides

9 years 1 month ago #36485 by BillM
Hi worried,

The T1 is good, noninvasive. The G3 is what has to be watched. You have to be aggressive with the high grade cancers and never let them get the upper hand. My doctor told me that G3 can be risky. From the onset my urologist pushed on learning about radical cystectomy between the first and second TURBT’s. Ask your doctor how they feel about a second opinion, most of the doctors I talked to didn’t even hesitate. You may never get to see the slides, but if you have referrals they can get them, just be sure to have the contact information for the lab that did the studies.

It’s good to see that you understand BCG is hit and miss. As Mike suggested, start reading about hospitals and bladder cancer specialists during the BCG. You want the best of the best if things don’t work out with the BCG and being informed is vital. Just be sure your husband realizes he needs a doctor with long term experience with bladder cancer if you have to go to the next level. Everyone here has “been there, done that” so don’t hesitate to ask about anything.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...

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9 years 1 month ago #36479 by mmc
Worried,

This is the right category. All you have to do to get the slides is call to request them.. Your husband will need to sign a release.
John's Hopkins has a place on their website with instructions on how to send the slides and request a review.

T1G3 is a tricky one. Hopefully, the BCG is all that is needed but close surveillance is in order.

Here is an article that another member posted previously. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2684254/

I pretty much ALWAYS recommend a 2nd opinion. Doesn't mean the first urologist has a problem or anything. The doctors at the top bladder cancer centers deal with bladder cancer day and day out. They could confirm the diagnosis and the treatment plan or they may not. It's good to go to the top experts in the country. If they concur with the BCG treatment plan, nothing says the local uro can't do that. If the decision is made at any time that a cystectomy is needed, then there is no question at all. He MUST do that at a top bladder cancer hospital with a top surgeon who does a MINIMUM of 50 cystectomies a year with the type of diversion that your husband prefers.

Do the research now on the top doctors. Let us know where you are located. Patricia is world's top expert on knowing the best surgeons in the country. She can point you to one of the places closest to you.

I had two years between my first non-invasive case of bladder cancer and when it came back and I needed a cystectomy. I had plenty of time to do research. However, I got most of my information from the good folks on this site.

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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9 years 1 month ago #36473 by worried
Hi, my husband, age 61 and VERY active & otherwise VERY healthy, was diagnosed with T1G3 4 weeks ago. He's had the TURBT and has had the first of the BCG treatments. I've read and read and read (even more) and am satisfied that his urologist is doing what is recommended in the medical literature. (He told us we could go with a 2nd opinion, but my husband is satisfied-one of the doc's partners trained at MD Anderson). But, of course, as my name implies, I'm worried.

The doc wants the 6 BCGs then he's going to TURBT again, this time probably using mytomycen (sp?)He didn't before because the tumor was covering one of the ureters. Because he had no blockage, my understanding is that the doc believes his kidney is draining properly (the other checked out as having no cancer--I will ask if he's going to check the one he couldn't check when he redoes the TURBT). If he has T1G3 again, doc recommends cystectomy. If it's less, then BCG again and watch.
Reading a post in another category, I saw that someone said they'd had their "slides" send to 3 different hospitals/labs. How can we do this? Do we just ask?
Also, presuming my husband makes it through all 6 BCGs (we were expecting gallons of the stuff and were relieved there was so little, still he could only hold it for 45 min this time), I want to be prepared when the results of 2nd TURBT come in. Questions will be: is it too late for a 2nd opinion at that point? Will he be able to find the best urologist to do the cystectomy in a timely manner given that he's already started with this one doc? I'm concerned about getting the best results for this procedure with the least impact on quality of life.

If I should post this to another category, please let me know which to choose. The one for men was my other choice at this point.

Thanks,

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