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PET scan results

7 years 1 month ago - 7 years 1 month ago #44122 by CatherineH
Mike... I am hoping the place in your chest is NOT EVEN cancer. My friend I spoke about had a PET scan that lit up a spot on her lungs along with some lymph nodes and after a biopsy, it was NOT cancerous.

I know your anticipation is at DEFCON 5 right now waiting to get everything identified and going. We are all on pins and needles right along with you but then, you know that already because you would be the same for us!

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 1 month ago #44121 by mmc
Thanks everyone. All three docs at UCH are doing research and clinical trials in the brief bios I have seen so far.

Just sent my doc (he's working on getting me in with one of them asap) saying have fast I can get there so even if someone has a cancellation to have them call me.

You are all correct that my plan is to attack this thing head on! I'm kind of hoping that the one in the chest is from so other new "more treatable" cancer and not bladder cancer mets. Who knows if that would be better or not.

Since we moved out to the boonies on our little farm, I'm an hour and half away from anyplace to get chemo.

Fine with me as this makes it easier to pick the better place which is UCH. Otherwise, we may have picked the one in Fort Collins. That's a great hospital but UCH is NCI and they are an excellent teaching hospital and very high on the oncology ratings.

Thanks again everyone! Again, as I know more, I will update everyone here.

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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7 years 1 month ago #44120 by sara.anne
Well, Mike. Not what we wanted to hear at all. If anyone can figure this one out, you will.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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7 years 1 month ago #44119 by Markq
This is not what we were waiting to hear. At least you have a plan and are going to a top specalist. I wish I could off you more than well wishes, but as of yet I haven't been in your position. I do know if anybody is capable of winning this fight it's you.

47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.

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7 years 1 month ago - 7 years 1 month ago #44118 by Cynthia
Not what I wanted to hear either. I have been quietly in the background waiting to hear what you found out. I no longer worry about what could be in bladder cancer I only handle the known anything else is a waste of energy, now we know.

You are not even two steps ahead here you are miles ahead. You know how to do your research how to find the best and make informed decisions. You are not a victim you are a survivor,you know how to go into battle mode and fight.

When will you hear from the U of C? Have you thought of maybe another opinion from say M D Anderson?

I have been to the infusion unit 20 times so as you go along I am here to help if you need me as is everyone in our community.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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7 years 1 month ago - 7 years 1 month ago #44117 by CatherineH
So not the news we wanted to hear either. It's now time to go into "seek out and destroy" mode and get those cells out of your body. In your usual bold style, you will learn all there is to know about chemotherapy in your prep for treatment. The good news on your CT report were all those "unremarkables" that were noted. In general we never want to be thought of as "unremarkable", but on a CT report... that's a good thing!

A friend of a close friend has recently been diagnosed with T2 high grade bc. She is in her mid-70's and has chosen a bladder-sparing route of chemo-radiation with her oncologist. She called yesterday and said he was going to do a 5FU regimen so I googled that. It's been around some 40 years. I found a study where combining it with other agents ups the effectiveness. I know you will soon be a walking encyclopedia on chemo!

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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