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Dad having trouble getting treatment
My dad was diagnosed this august with superficial bladder cancer and had a resection. After the resection, he was given a ct scan and told that it may be muscle invasive, even though the biopsy from the resection came back as high grade, superficial. He was told by the doctor who did the resection that she could no longer help him and my dad began searching for a new doctor. He received two opinions-one doctor suggested surgery and the other suggested chemo followed by surgery and even scheduled him to begin the chemo. When my father approached the former hospital about the chemo, asking why they didnt suggest it like the other did, they said that his heart was not strong enough for it. My father then told the latter hospital, who had scheduled him for chemo, what the former hospital had said. Suddenly they said “oh you are right, your heart is too weak for the chemo” (very disturbing that this doctor did not check him out himself first). Therefore, my father decided to steer away from this doctor and stay with the former who had suggested only surgery. However, now this group of doctors is giving him a hard time getting cleared for the surgery. I am wondering, if they deny him of this, what other options does my father have? I am so worried about the cancer spreading…nothing has been done for him and the clock is ticking! Shouldnt it be the choice of the patient/family to undergo the surgery as long as we are told of the risks? Doesnt he need this surgery to survive? I am so upset and confused. These doctors have him running around all over the place getting all sorts of tests done and every time he is hopeful and thinks they are ready to clear him they find another reason to cancel the surgery. He is becoming so frustrated and depressed. I just lost my father in law to renal cancer and can’t bear any more loss-especially since bladder cancer is supposed to be curable. Please help me.
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8 Replies
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Njordan….OK you’re with one of the best if its with Dr. Herr. He actually was my second opinion after a pretty botched TURB where i live. Dr. Herr insisted on a second TURB and pathology report and wanted his own tests done. I would absolutely trust whatever he has to say regarding this BC. If you haven’t seen him already just request it…he’s pretty accessible. I was in in less than a week. This is what he does everyday. Please let us know what their pathology says and CT scans. Please keep your trust in this institution. What one doctor can’t get believe me Dr. Herr can……Pat
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GeneBene-They are not 100% sure if it is muscle invasive because they said that they would have to do another resection in order to get another biopsy. The original biopsy did not come back muscle invasive, however the doctor said that my dad has so much cancer in the bladder, it is difficult to biopsy everything. The reason they suspect muscle invasive is because of what they see in the ct scan-but they cannot confirm this.
Patricia-the pathology report was done by the first doctor -the one who did the turb-she is also the one who said that she could no longer help him bc it was beyond her expertise. Therefore, my father went on to receive two more opinions-one from sloan kettering and another from north shore located on long island. My father is trying to get the surgery at sloan kettering with Dr. Herr. I am hoping he will get cleared for it-I believe it is dependent on tomorrow’s angiogram. BTW-when I said “she” in my post, I meant the cardiologist who works with sloan kettering-she has to clear him (sorry i know the post was confusing)
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Hi,
Sorry for the situation. If distant spread is found before surgery, it is not done. If he is not up to chemo, radiation is the only option. Still, radiation can buy him quality time. The best case scenario would be surgery and lymph node removal, the surgeon knows this and I’m sure is hopeful that this will be an option. But a person must be clear of mets before a cystectomy can be done. Sometimes chemo can clear up lymph node spread pre-op (and sometimes even distant spread). I’m sure the surgeon wants to give your father the best chance at a cure, but of course no doctor or institution wants to do a treatment that might cause harm instead of help.
Please keep us posted.
Good luck with everything.
Wendy -
Njordan….first of all you are at a great facility ..Memorial Sloan. Was the original TURB or resection done there and if so what did the pathology report say…you have a right to have that..just ask for it. May i ask if Dr. Donat is his doctor at Memorial as you said she? Given his history it is prudent to do a complete cardio check up prior to cystectomy or even chemo. Its a bit confusing reading your post….i would be very surprised if the surgeon at Memorial didn’t insist on doing their own TURB and pathology report Please help clear this up for me…..and which doctor said they could do nothing more for him? Memorial or the other place…..Pat
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The other thing is they usually don’t advise bladder removal unless it is muscle invasive, my husbands was Stage 3 T-2 muscle invasive, its important to know if it is muscle invasive or not, not could be or might be. You need afirm answer on this to get on with a plan. Ginger
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Theres many here that have gone to Sloan Kettering, I would think with there reputation that they are guiding you in the right direction. Did your dad have a turb where they went in and took the tumor and got a path report? Our surgeon at the Cleveland Clinic said 3 months from the diagnosis is usual. Ours started in April 2007,diagmosed July 3rd, bladder removed Sept. 14th, no cancer elsewhere, lymph nodes or prostate. They can do scans to see if it has spread, they always do them pre surgery, so you may want to ask to get those done. It would help to know. Wendy will chime in here soon I am sure with some advice, as well as others.
Your b/c friend, Ginger Beane -
Ginger Beane,
Thanks for your quick reply. My father is 67 years old and he is trying to have the surgery at Sloan-Kettering. The surgeon there is supposed to be one of the best. The cardiologist at the facility said that my father did not pass the stress test last week but also said it may have been a “false positive”. She now wants him to get an angiogram to check his arteries…he’s getting that on thursday.
In 1995, my father had an aortic aneurysm, therefore I know his heart may not be 100% but I would never think he wouldnt be strong enough to endure the surgery. I am so scared that he is not going to get treatment in time…what will he do if it spreads since chemo is apparently not an option.
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Welcome to the forum, theres lots of help for you here, we need to know some things first, where is your father going for treatment? How old is he and what kind of heart ailment does he have. You need to be at a major facility that has done many of these procedures. We can recommend facilites and Doctors that some of us have used for our surgerys. Talk to you soon, Ginger Beane
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