Newbie-34 year old malT1G3 w/cis...scared to death

17 years 4 months ago #2318 by Mike
Hi,

when you have time to catch up - read Bubbles' story and how her husband Mr. Woodie The Carpenter is doing - he is 46 but only recently diagnosed with vigerous BC - You both live in or near Boston and I'm sure Bubbles and your wife can give you both support better if they can support each other ;)

Send her a PM as she needs all the help available just at the moment and one great thing is how you can put your own fears in perspective helping others along what is NEVER an easy road!

We all learn together from each other - tricks, techniques, sites and details that we need to know or can afford to ignore.

PM her when you get a chance - I'm sure with so much in common you can all help each other.

regards,
Greg L-W.

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17 years 4 months ago #2312 by pweization
Hi all,
I have been married to an extremely supportive women for four years and we've just had our first child (Madeline) 8 mos. ago. We live in Massachusetts near Boston so for that I am extremely fortunate. I have a local urologist who I have been working with mostly but have second and third opinion options from the big guns at Mass General Hospital and Dana Farber in the city. The plan was the standard BCG 6 followed by biopsy and BCG maintenance (repeat as necessary). My local urologist would like to resume that plan after the second TUR is complete but I haven't confirmed that by second or third opinion yet as most doctors won't be back to work until Monday. I do have Blue Cross/Shield coverage through my wife's policy.

Thanks so much for the speedy replies. I can tell already this forum is going to become a mainstay for me.

Any advice or stories anyone has to share will be greatly appreciated.

Thanks to all and good luck,
-Vin


34 yr old male
diagnosed 10/13/06
T1G3 CIS

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17 years 4 months ago #2311 by Mike
Hi Vin,

just to show nothing tends to be as bad as it looks up front!

I've just downloaded this from Steve Dunn's web site:

I was diagnosed with kidney cancer in late 1989, at age 32. I had my kidney out, and then a month later was horrified to learn that the cancer has spread to both lungs and to multiple bones in my spine. After several weeks of frantically searching for options and stumbling awkwardly through the system, I found a clinical trial of High Dose Interleukin-2, a powerful immune stimulant, combined with Interferon Alpha, another immune stimulating drug. I traveled across the country to get the treatment that I thought was best, and was very fortunate in that I have gained a long term remission from my disease. I have been well enough to return to work, get married, father a child and climb the high peaks of the Colorado Rockies. Cancer is a strange and terrifying land but nonetheless my motto has become, "Anything can happen in this country." If you'd like to read about my experience in more detail, see my story in CancerGuide's patient stories section.

Following my recovery, I realized that I had been fortunate to be able to figure out how to negotiate the system, and that actually I had hardly done a good job, but I also realized that many people with cancer never find out about promising new options for their cancers, and that many doctors offer only what is available locally, so I did some more homework, and started to teach a class on clinical trials for other patients. I absolutely believe that "Knowledge is Power", and have become an information pack rat on my own behalf, as well as providing information to other patients in any way I can.

FOR MORE from his site:
cancerguide.org/

Remember the Big C stands for Challenge ;)

When the night is full of dark thoughts tune in to your favourite Talk Radio station and run it quiet enough that you have to concentrate - it is surprising how soon the most interesting of subjects can put you to sleep ;D

Regards,
Greg L-W.

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17 years 4 months ago #2310 by vervidj
Always check with your doctor for answers and sometimes the staff can be of some help.
I was told at 52 I was too young to have this problem so when I hear of someone much younger I really feel for your concerns. My stage is the same as yours.

Don

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17 years 4 months ago #2309 by vervidj
Vin,
last year I had a 1cm tumor removed approx 1 month after surgury -- which was believed to be there and missed during surgury. not a problem since it was taken care of with an in office procedure. I had some extra bleeding which I was concerned about and called the doctor -- went back to office and had to cauterized to stop the bleeding.
Another time after a BCG treatment I had been bleeding more into the afternoon and evening of the same day. I checked with the doctors office and learned that I needed to drink more water to flush. It was fine after that.
Hope this helps.

Don

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17 years 4 months ago #2307 by wendy
Here's something encouraging, unless you're very unlucky you can survive this diagnosis. With the help of a good doctor. I hope you're seeing someone familiar with the territory, treatment approaches can vary widely according to where you go/ who you see. There are options for you. When BCG doesn't work, and in the face of CIS and an aggressive cancer, cystectomy will probably get mentioned to you.

I know a lot of men in your position, not as young as you, to be sure, though you'll meet a few here. It's a very hard position to be in. But there is plenty of room for hope so don't lose heart.

Please let us know what the doctor advises. I'm sure it's occured to you to get a second opinion, if you haven't arranged it, start thinking about it. If you mention your area maybe we could recommend some patient=favored doctors nearby.

All the best,
Wendy

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