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Telling teenagers about cancer cx

12 years 1 week ago #21289 by Flamenco.
you have definitely come to the right place. There are other people here who have been in your situation, have had the same doubts and questions that you have, and stick on in here because we are all now part of a community who have needed support , information, advice, whatever, at some time. And now want to help in whatever way we can to help others in the same boat.
Please keep in touch with us .
kind regards,

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12 years 1 week ago #21264 by eddiek

How are you and your family doing? Please know that we are thinking about you and your family. The folks on this site are a great source for information and support. Please let us know how you are doing.

Ed K.

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Secretary/Clerk

& Caregiver

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12 years 2 weeks ago #21189 by mmc

So sorry to hear about your situation. I think you've found the right place though.

First, get a second opinion on your treatment plan from a top cancer institute. Like you said, east coast certainly has some top centers.

It's nothing against your doctor, and my urologist actually recommended 2nd opinion. You want one from a major center because they are the ones with the most experience with less common situations.

Also, while it is scary as all get out when you first get diagnosed, you will also find a LOT of people on this site who were diagnosed years ago. There are lots of options and some kinds of chemo for bladder cancer are VERY different. For example, they often instill the chemo in the bladder which does not cause all the side effects of in the vein kinds of chemo. It is localized to just in the bladder and not your blood system.

Thousands have had cycstectomies and are doing just great. Getting a cystectomy prevents it from being able to spread to other parts of the body.

I was just at UCCC (University of Colorado Cancer Center) this morning because I have CIS that spread to both kidneys. Was also going to go the MD Anderson (in Houston) but because of Hurrican Ike, they closed tomorrow.
So, in my case, my uroligist recommended getting to a cancer center because he's not dealt with it spreading to both kidneys.

I picked the one closest to where I live to go to first and then I picked MD Anderson because they are on the top of the list in the U.S.

I'm just saying this so you understand why it is important to get second opinions from the best place you can get to (if not the best 2 you can get to).

My first bout with bladder cancer was 2 years ago. They knocked it out and then it came back again just last month. I am planning on getting mine taken care of and being here to give advice to others in five years or so.

A bladder cancer diagnosis is not necessarily a death sentence. Catching it early gives you a chance to get it taken care of quickly. Getting rid of your bladder makes sure it doesn't come back.

Hang in there! Have a nice glass of wine and hot bath. Read all you can here on the site from others. Most importantly, get yourself to the best centers you can as quickly as you can so you can get information, a treatment plan, and reassurance.

You do those things and there is a good chance that you will also be telling your story and helping others years from now.

Best of luck and keep us posted on what you do.

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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12 years 2 weeks ago #21188 by Cynthia
Moved for more attention originally posted by cf944

I was just diagnosised last wk. have both tranistional/small cell bladder cancer, which is not common. only symptom i had were 2 UTI's with some blood in it few months ago. nothing else. have been recomended to have chemo then radical cystectomy. i am so scarred. had to tell teen sons, and daughter. they did not take it well, but wanted me to keep it honest with them. like me the unknown to them how every bad, it even worst. will begin chemo in 4 days. live in US, in the medical meca... northeast... have the world class care.
waiting for some other test results and I am so scared...not for me.. for the unknown and for my children. to see them suffer is the worst of all. i just love them so much. to see my husband hurt and sufferring is the worse then then diagnois of cancer. i am in my 40's don't smoke, drink, or work with any chemicals. no family hx, to say why do i have this?? i don't know.
does anyone else have both these types of bladder cancer? if so what was your outcome? just want to know what to expect.
thank you

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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