Superficial BC vs. Metastatic BC

Kim...i just know they used the blue light on me when i went there for my second TURB. And i really don't know every major cancer center....4 yrs ago when i was facing my cystectomy i did a lot of research on who was specifically targeting women and bladder cancer and i came up with 6 major centers and 6 surgeons that deal with women and i went to see all of them and truthfully i wouldn't have gone wrong with any of them...they all impressed me. They all got me in in a very timely fashion...within 4 weeks i had seen all of them. The only center that did not respond was MD Anderson in Texas...and truthfully they're were not as many surgeons there that dealt specifically with women. I'm sure that list has grown since my research. There are many capable surgeons out there that can perform this surgery. I was willing to travel anywhere...its my only shot and my life ... so it was on hold for a while......i'm here. Thats why i'm such an advocate for everyone doing their homework...finding a surgeon that does this all the time....a surgeon who deals with women. I found that all of these people knew each other...were fans of each other....and did not resent in the least that i was doing many consults. The major cancer centers have the best of everything....they don't get rated that way unless they do.... I live in an area with the worst uro's and oncologists in the country......and everyone i went to see knew that....its a tight knit little community. I feel fortunate that i had a few brain cells kicking around in there after my panic at my one and only symptom..gross hematura..and let a local do a botched up TUR. I'm far from writing a book...i just want to help people seek the best available to them. Pat

When I say "uterine mass" I mean it's in the area where the uterus use to be -- the adnexa I think they call it. One doc called it the "vaginal vault". Good to know that Sloan uses the blue light. Haven't called Johns Hopkins yet, waiting to see what happens on Monday. We're going to the local uro who will be doing the BCG treatments -- we asked him to review everything and give us an opinion. We are hoping he will give us some straight answers and if things still aren't adding up the next step will be Johns Hopkins. Since my mom wanted to meet with this local uro anyway to get the BCG rolling, we figured we'd see what he had to say about everything.

Good to know that Sloan uses the blue light. Pat, you seem to know everything about every major cancer center! You should write a book!

Kim

Kim .. i thought you said your mother had a hysterectomy thus no uterus. The diagnostic radiologists do know what cancer looks like. They do use the blue light at Sloan. I hope your next opinion with Johns Hopkins confirms what the others have been saying. Make sure you take all the scans, x-rays, and lab samples with you or they'll want to do it all over again. Pat

Wendy wrote:
"Not necessarily, because cystoscopy can miss tumors and CIS a scaryingly large amount of the time, "no apparent invasion.." means to the best of the ability, with the tools at hand, there is no apparent invasion of the bladder lining into the muscle. CIS is famous for being invisible, beneath the bladder lining.  The results of the new blue-light cystoscopy systems make me feel it's unethical not to be using this technique. ( blcwebcafe.org/hexvix.asp ) It makes CIS light up like a psychedelic mushroom in a 60's black light poster."

I just re-read this thread again, and given what Wendy said, how can my mom's doc say with such certainty that the uterine mass is NOT BC???  Everyone at Sloan agrees that this mass may even be ATTACHED to the bladder -- can't tell from MRI, CT or ultrasound.  Hopefully we'll know for sure after the needle biopsy of this mass next Friday.  Of course the reports are also indicating that there is still something in the bladder, but the Sloan uro disagrees with my reading of the reports -- going for yet another opinion on Monday!  I know everyone is telling me to trust Sloan -- they're tops! But they did miss the uterine mass -- we only found out about that when I forced my mom to go to her local ob/gyn -- he's the one who found it not the Sloan doc!

Kim

Well, I got my initial diagnosis path reports back yesterday from 2006.
(See "My Story" in Storyboard Contributions)

This is the deal as I see it....

The local pathologists could not determine if my tumor was an inverted papillary carcinoma (very low risk) or an invasive urothelial carcinoma  (agressive and progressive).  It sounds like the opinion was leaning toward inverted papillary.   But since there was a question, they wanted a second opinion....

...the sample was referred to pathologists at UNC-Chapel Hill.  The benign opinion was determined to not be the favored diagnosis.

It almost sounded like a flip of a coin could have made the difference in opinion.

So, in only 6 weeks from initial diagnosis of low grade Ta G1 my cancer jumped high to T1 G3.   Then, the six weeks following T1 G3, the cancer was "poof" gone.

I want to give cancer it's due respect, but part of me wonders if I've gone through all this misery with BCG's for nothing. (As now, I am probably semi-crippled for the rest of my life)

But, it is a chance that one just doesn't want to take.

Have a good day everyone,
Rosemary

When we are referring to a T1 type, it is also relevent to know the T1 level of invasion in the lamina propria there is T1a, T1b and the highest invasion level of T1c. Also of note is the fact that a high percentage of initial T1 pathology reports are downgraded to a TA. Some T1 are also upgraded but the higher percentage is downgraded. It is important to confirm the pathology report before any drastic action, like a cystectomy is done. One urologist told me that patients vary greatly when told they have bladder cancer. Some never come back after initial TURB and superficial low grade diagnosis, others want everything cut out immediately. It seems Cancer is still considered a terminal condition by many of those when first diagnosed. I saw a interview with a woman who has survived stage 4 pancreatic cancer many years beyond anyone else and all medical data. Pancreatic cancer, unfortunately, is often a death sentence. She said, "we patients need to do lots of research, find the newest and best treatment, go to the specialist of that cancer and don't get caught up in statistics. I think that excellent advice and what I have been doing the past seven years. I have learned a lot and continue to learn. Hopefully what I have learned can benefit others on this forum. Some of you have benefitted me. Rosie