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Please help! My father was recently diagnosed

9 years 2 months ago #32784 by Patricia
DITTO..what Mike said
The most successful chemo radiation program in the US is being done at Mass General and their success rate is maybe 48% and if you read between the lines you might come up with something different. It will play havoc with your blood cells, your kidneys, your liver and the radiation will make any semblance of his intestines look like mince meat and if he survives he can maybe look forward to a radical anyway and an ileal conduit.
Why would you think that chemo and radiation is even a good idea..so you can have a functioning penis perhaps? Won't do him any good if he's 6 ft. under. And if he goes to a top notch bladder specialist and hospital they can actually do nerve sparing ...oh and yeah..save his life.
Your father has his head stuck in the sand...and yes he actually thinks you're about 10yrs old. I had the same thing with my father. Any chance your mother can assimilate some of this information?
Doctors actually expect you to get a second opinion. Insurance companies expect you to get a second opinion..even the bad ones.
Its just a bladder....if your mom had breast cancer would she not have surgery...would she cut off a breast to save her life?
ok i'm ranting now....can't save them all.
pat

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9 years 2 months ago #32782 by mmc
Ask him: "What if it was me, Dad? Wouldn't you be insisting that I get to the best doctors at the best hospitals that specialize in the exact disease? Or would you think it is just fine for me to go to a local doctor who tells me what I want to hear even though the scientific studies say otherwise?"

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 2 months ago #32781 by Dee Ann
Mike,

I hope he changes his mind soon too. This whole thing with his doctor stinks and sends up red flags with me. I don't understand how he can't see it or maybe he just doesn't want to see it especially since the doctor has come up with a way to avoid the surgery.

His doctor has also warned him from seeking information online. He says that there is too much information, it is overwhelming and some of it incorrect. I do see that to a point but being limited to a few websites your doctor "approves" of seems a bit much.

No one WANTS the surgery. Heck, I don't want him to have the surgery, but if it will save his life then you have to do what you have to do.

My first thought about the Chemo was how much damage will THAT do? Second, was I don't recall anyone saying that stage 2 could be treated with chemo/radiation alone. Or what if it doesn't help and the cancer apreads further during the time they may be wasting on chemo/radiation? I've been to tons of websites staying up to midnight or later every night looking up information.

I've read that even if they do manage to kill the cancer with Chemo sometimes the bladder still has to go because of the damage. I didn't know that it may prevent the possibility of cystecomy/neobladder in the future.

Even though he seems irritated with me I'm going to keep trying to get him to a second opinion at MD Anderson. It was like talking to a brick wall last night. He kept repeating that he appreciated what I was doing. No dialogue, nothing. Sometimes I wonder if he still thinks of me as a child instead of a 40 year old woman. :laugh:

Thank you so much for all your help and advice!

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9 years 2 months ago #32780 by mmc
He's T2 and his doctor says he doesn't need surgery?
Well, his doctor is an idiot!

Often times radiation can cause enough damage that a cystectomy/neobladder won't even be possible when it comes back again.

Did his doctor happen to mention that?

It's kind of like your dad has a transmission problem and he's asking the guys at grease monkey to fix it rather than going to AAMCO.

Sorry to be so blunt but obviously that print out you gave him about top bladder cancer hospital not being optional didn't sink in.

IF the person is so ill or has major complications that would prevent them from being able to get the surgery, then the options on the table are kind of "the best we can do" (chemo/radiation).

However, I guess I've been through this before with other people who insist their local urologist knows more than the bladder cancer doctors at the research centers. It's their life to do with what they please, including ignoring common sense.

I hope he soon changes his mind.

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 2 months ago #32777 by Dee Ann
I spoke with him last night and encouraged him to get a second opinion and also stressed that he deserved the best. He wanted to wait and see what the doctor had to say today and take it from there. Now that the doctor has decided that there is no need for surgery at this point my Dad is so relieved and happy. I still have my doubts though. First the doctor says he think he got it all in the turbt, then later in the week says that the bladder, etc. has to go.....now a week later it goes another direction. If that's not a reason for a second opinion I don't know what is. Is it possible that stage 2 be treated successfully with chemo and radiation alone?

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9 years 2 months ago #32774 by sara.anne
Dee Ann, my thoughts are that your father NEEDS to seek a second opinion, preferably at a place like MD Anderson. Then he can consider all his options and make an educated decision. My husband was retired military, well over 65. He was therefore covered by Medicare and able to get consultations/second opinions whereever he wished.

Please encourage him to get a second opinion. Tell him he deserves the best.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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