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Doctor\'s Response and Heartbreaking!!

8 years 3 months ago #42936 by sara.anne
I think that the doctor is being quite honest with you. It sounds as if you have a 50/50 chance, statistically.
HOWEVER and it is a big HOWEVER there is a lot more to it than statistics. The patient's attitude and will to fight this thing are very important, as is the will and strength of his support system, you!

This is a serious disease and you are doing everything you can to get the best outcome, starting with chemo.

Some doctors don't tell the patient everything; I am one of those who wants/needs to know exactly what is going on, so I respect a doctor who will tell me. You asked your questions, and he did not "blow you off" but answered them to the best of his knowledge.

We all wish you the very best, and are here for you.
We will be thinking the very best thoughts, and you should also. An optimistic attitude goes a long way now.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 3 months ago #42935 by GKLINE
I have never known Drs. to be the most optomistic people. It appears as though they have been more attuned to the negatives lately (My surgeon had a list of 10 steps we were going to go through.... and the last was "contact hospice".... And this was on the first visit!!!!) So maybe he wanted to make you aware of the possible downsides. And as we know there are downsides.

But it appears as though the protocol for bladder cancer that has spread outside the bladder is to do Chemo first and then remove the bladder. The tumor in the bladder is still there of course and has got to come out. But the bladder cancer cells floating in free space has got to be taken care of first.

I know it is extremely worriesome. And it should be. This is tough stuff. I am sorry you all have to go through this. But it is not the end of the world.

It seems as though some of the best Dr. lack a little bedside manner and compassion. But they are more factual and that is sometimes nto what we want to hear. We would like a little more comfort at times like this..... But that is why we are here, I guess.

Best of luck to you and your husband. Try and keep this on an even keel. Stay optomistic and keep centered. And keep us in the loop.

We are worried too.


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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8 years 3 months ago #42934 by jaxmad13
We go in on Thursday for hubby's first chemo treatment and hoping that everything goes well. I'm having a hard time today because I sent an e-mail to the doctor asking him some questions and this is basically what he said.
My first question was how long before the pain from surgery went away and he said he doesn't know if his bladder pain will improve as there is still a large mass in the bladder area which may be causing the pain. He would give it a 50/50 chance of getting better with chemo. I thought our urologist had gotten most of the tumor out so for him to say there is still a large mass is a shocker to me. I knew there was still tumor in the wall but didn't think of it as a mass. I asked if there was still tumor and cancer in the bladder and he said yes there is based on CT scans.
I asked him what the chance is of the cancer spreading outside of the bladder before the surgery and he said there is a 50% chance it has already spread outside the bladder at this time. Chemo does not work for about 30% of cases in which case the scans before surgery may look worse. I asked what the grade and stage of the tumor is and he said his tumor is High Grade, clinical stage T3 (worst). I asked if there is a chance that the cancer will return once he has his bladder/prostate removed and he said there is a 50/50 chance that the cancer will return after surgery but they hope to decrease that chance by about 10% by using chemo prior to surgery.
I was once feeling really good about this and the fact that our urologist said we need to get the bladder out before it starts to spread and now I'm being told there's a 50% chance it already has. I feel like I'm being given the run around. Maybe not but we'll see what happens on Thursday.
Thanks for listening!

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