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Diagnosed w/ High-Grade - Need 2nd Check

4 years 9 months ago #47916 by sara.anne
It is very common, and considered good medical practice, to do a second TURB. Often, during the first one, the urologist does not get enough tissue, or from the right place, for a complete diagnosis. The second time he/she knows exactly where and how deep the samples need to be taken. In my case, the first TURB showed papillary, low grade, tumors with some areas of irritation. The second, with special attention to the "irritative" areas, resulted in a diagnosis of CIS.
AND it is important to note that a definitive diagnosis of bladder cancer, as well as its grade and stage, CANNOT be made without the TURB and pathology reports.

If you and your father feel that a second opinion would be a good idea, and that you would feel more comfortable at a place with a lot of expertise in bladder cancer treatment, this would be a good time to make that move. You are fortunate that there are several excellent choices relatively close. You mentioned Memorial Sloan Kettering in NYC, There are also, a little farther away, Mass General in Boston, and Johns Hopkins in Baltimore. Of course you want to get this situation settled sooner rather than later, but a few weeks will not make a difference since this has probably been there for quite some time.

Should it come to a radical cystectomy (bladder removal) you would want him to be at a place that does LOTS of these. A neobladder is the most complicated surgery; when it works it can be a great option, but if it doesn't, not so much. And his age might complicate things. IF it comes to the point that he is considering bladder removal, there is a lot of information available. However, at this point, it might be "information overload."

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 9 months ago #47915 by fighterm
Hi Schmancer, I cannot help you with your questions, as I have no personal experience yet. I am awaiting my first turb. I thought that urologists can tell the grade from looking at the tumor. My uro also said that my tumor looks low grade. That was in back in October. Next week I have a pre-op appointment and he will tell me about the surgery. I never smoked, but I had twice radiation in my pelvis and chemo over 23 years that I fight a lymphoma. Just this month I finished my last cycle of the lymphoma treatment. That's why my turb was postponed, but I so believe my doc that the tumor is low grade.
I believe that smoking can cause mutations in the bladder cells that accumulate more with time. The body takes care of some cells with mutations but not all of them. So, yes, his smoking for 30 years played a big role in his cancer. There is a risk of cancer due to his age (the longer we live the more mutations we accumulate), but smoke carcinogens increase that risk many times. Is his tumor papillary? My tumor looked like petals of a flower. What I understood from reading on this forum, that a doc normally does a turb and if he does not see clear margin on pathology he does another turb in a month. I saw the procedure on YouTube, it's not an easy procedure to resect with a wire loop and then catch all pieces of the tumor. I put up some papers on bladder cancer in the Articles section. If you want to read more about it. I hope other people with experience will help you.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 9 months ago - 4 years 9 months ago #47912 by Schmancer
Hi, everyone, thanks for operating this forum. I've already seen some good advice on here. I'm trying to find out what we need to do about pursuing a second opinion and the best place for treatment and how fast we need to make these decisions.

My father, age 72, was diagnosed with high-grade bladder cancer on December 31st, after having a resection on December 18th. The doctor said they did not get a sample that could determine whether the cancer was muscle-invasive and therefore scheduled him for another resection to determine that on January 29th.

My feeling is we should get to a major cancer center to get that second exam done. Is that a better idea than letting the same physician do this the second time? It sounds like getting a second opinion after the second exam might require a third exam which would then delay treatment yet another 4-6 weeks, which doesn't seem wise. Is getting to a major cancer center important for this part of the process or is that important just for neo-bladder surgery?

Did this doctor already make a mistake by not getting the full diagnosis the first time or is doing this in two exams standard practice? The doctor told him he thought the cancer was low-grade after the first exam, but he proved to be wrong after it was tested.

Do we have to wait that long to get the second resection or should it be being done sooner?

Some other notes on his symptoms. He had blood in the urine for the first time soon before the first resection. He MAY have had a very small amount months ago going by his memory. Blood in the urine has now RETURNED as of 2 weeks after the resection. He also has some swelling in the lower left leg about a week after the resection. However, he had leg swelling several months ago due to lyme disease, which was treated with antibiotics at the time and went away. So we're as yet unclear if that symptom might still be related to the lyme disease (I've read it can be due to cancer in the lymph nodes or a blood clot or 40 other reasons).

What is anyone's advice on which cancer center to go to for someone in eastern Pennsylvania? It seems to me Memorial Sloan in NYC is considered top of the line for sure. If we can't go there for some reason, what is another good choice? Any opinions on Fox Chase and Penn Medicine in Philadelphia? Philadelphia is a more convenient location, so if you can tell me one of those places is just as good as Memorial Sloan I would probably choose that one.

Has anyone had bladder removal surgery and the neo-bladder done in their 70s, or would that be considered too old to successfully perform that operation? In this case there are general health issues in play but nothing as major as a prior heart attack or stroke.

A footnote, he quit smoking 30 years ago, with 100% no relapse, but did smoke for 30 years before that. It still seems surprising to me that a smoking-related cancer would show up at this point. There is no known family history of bladder cancer and no regular exposure to secondhand smoke. His only exposure to exhaust or chemical fumes was back in Vietnam.

Thanks for your advice.

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