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twice bitten!

cssquared
Posts: 4
Joined: Mar 2003

anyone out there ever have T/C twice??? I think I'm pretty rare. Had it twice and they were not related-got two beautiful kids,1 before and 1 between diagnosis...Lance ain't got nothing on me!!!But he sure can ride a bike!!

spikekati
Posts: 4
Joined: Apr 2002

Have you looked at the TCRC (Testicular Cancer Resource Center) website? It is by and for the TC community, and it has a page devoted to special guys like you! As the wife of a TC survivor, you are one heck of a guy to do it 2 times!!!!!!!!!!!!!!!

abartender's picture
abartender
Posts: 25
Joined: Mar 2003

? did it spread 2 any other areas
Lances spread to his lungs n brain and not only went on to become one of the greatest bike riders this world has and will ever know ,but has helped millions make it threw this horrible experince at no cost.
As for myself iam finishing up treatment as we speak & wouldn't have made it threw it without the lance armstrong foundation!!!{ thank you Lance}
Mark a.k.a abartender
mick @easyriders.com

cssquared
Posts: 4
Joined: Mar 2003

LUCKILY I HAVE HAD NOT OTHER METASTATIST TO THIS DATE-I STILL HAVE THE FOLLOW-UP TESTS-NOT OUT OF THE WOODS YET-BUT I WILL BE 5 YEARS OUT FROM MY SECOND EVENT JAN 2004.

wifeofTCx2
Posts: 4
Joined: May 2003

Hi, my husband is rare like you too. He had a pure seminoma about 6 yrs ago and a mixed germ-cell (stage 1) this past year. Radiation the first time, chemo (BEPx3) the second. Congratulations on the kiddos! We had one in between naturally too, we knew we were lucky but we didn't have to be hit over the head! Hubby is struggling with getting the right Androgel dose. How about you? What are you using for hormones?
I also check out www.tc-cancer.com they have a great board to post too.

cssquared
Posts: 4
Joined: Mar 2003

sorry I have not answered this sooner-at this time I am using androgel...but what is normal levels??-I did not have a baseline test for testosterone before my last surgery...I started with injections every 10 days-but not very effective-i have been on androgel for about 3 years-the only thing I know is how I feel now-not bad-no problems with anything-but is it where I was before? I will never know-I am tired a lot and have gone fron 210lbs in 1994 with my first-to almost 260lbs now-I am 6'5" and work out allthe time-will be 40 next year--.Any suggestions?

willbefine
Posts: 1
Joined: Feb 2004

I WAS DIAGNOSED ALL MOST FOUR YEARS AGO, HAD LEFT SIDE TAKEN OUT AND WENT THROUGH RADIATION ONLY ,FOR 4 STRAIGHT WEEKS. THEN(SEMINOMA) CAME BACK ON OTHER SIDE ABOUT THREE YEARS LATER , HAD IT TOO TAKEN OUT, BUT NO CHEMO OR RADIATION TREATMENTS. (DUE TO QUANTITY OF RADS) THEN UNDER JUST A YEAR FROM THAT,IT SPREAD TO TWO OF MY LIMPH NODES(BY HEART) STARTED CHEMO (CISPLATIAN AND VP/16)I DID THAT ONCE A WEEK FOR FOUR MONTHS. ALL WAS WELL DURING CHEMO, BUT ITS THE CRAP AFTER CHEMO THE DOCS AND OTHERS DONT TELL YOU ABOUT. TASTE, LOW LEVELS OF POTASSIUM, CALCIUM, AND MAGNESIUM, BODY CRAMPED AND SHRIVELED UP, (POSSIBLE HEART PROBS. FOR THAT)
I WAS IN AND OUT OF HOSPITAL 5 TIMES DUE TO LOW LEVELS AND DEHYDRATION. NOW IM FEELING FINE (SEVEN MONTHS LATER) NOW ONLY PROBLEM IS NUMB HANDS AND FEET. CANT FEEL EITHER, BUT YET BOTH VERY SENCITIVE TO SHARP TOUCH , IF THAT MAKES ANY SINCE.
I HOPE THINGS ARE WELL FOR YOU , EMAIL ME IF YOU HAVE ANY MORE Q'S I FEEL LIKE ONE OF THE RARE ONES TOO.
IM 31 AND HAVE A YEAR 1/2 OLD SON. GIVEN TO US BY DONER PROGRAM. HE MEANS THE WORLD TO ME, BUT DR.S DIDNT GIVE ME MUCH INFO ABOUT "BANKING" MY OWN UNTILL AFTER MY FIRST OPERATION AND RADIATION. BY THEN THE RADIAION PRETTY MUCH WIPED ME OUT AS FAR AS HAVING MY "OWN"SON. AND WAS TO LATE TO SAVE . BUT I HAVE NO REGRETS, I COULDNT ASK FOR A BETTER, FUN LOVIN,HAPPY PERFECT LITTLE BOY I CALL MY BUD.

wayout1
Posts: 1
Joined: Jan 2006

Hi I have had it twice and I feel like a freak as well it came back in the same lymph nodes which it had spread to initially. How are you doing now. i get scared but believe I have good chances still

swoop91
Posts: 1
Joined: Sep 2009

I've had it twice, first in 1998 and then again in 2004. The first time around was just surgeries, lost the right one and had my lymph nodes removed by the U.S. Army at Landstuhl, Germany. Second time around, I found what felt like a pimple on my left one. Had it removed and six months later a CT scan showed it had spread into my lymph. Underwent four cycles of chemo, oh the joys.

I do know there is a high rate of T/C in the military and for the past ten years there has been an ongoing study between the DOD and John Hopkins to find out the cause.

I would like to know the odds of getting a second time, they have to be high.

On the plus side, I ride bike and don't have to worry about any discomfort to that region from pressure of the saddle. Though I get to deal with neuropathy instead, but at least I'm here.

Seaview525
Posts: 1
Joined: Feb 2011

I am concerned,

I had testicular cancer of the left testicle about 20 years ago and I went through raditIton to eliminate a growth in my diaphram. I am 51 and I have had melonoma about 13 years ago, I had stage 2 and I had to go through a very tough schedule of injections of interferon for a year. 3 years ago I had a visually assisted surgical removal of a lymph node near my diaphram and they had to deflated a lung to get at the swollen lymph node that turned out to be small cell non Hodgkin lymphoma, this was a very difficult surgery, they diagnosed me wth the small cell lymphoma, but they said there was no treatment with out a tumor to treat. I had a born marrow test and it came back clean. I was just checked and my blood came back with some irregular blood test that told the doctor that my other testicle might be in question, I had an ultra sound done and they said I have calcium deposits in my other testicle. They also did a PET scan and they now have found an issue with my colon. All I can say is, are the tests worth it? I am tiredofthe tests, I am tired of the treatments, all I want is good news. Is there any?

Seaview

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Yeah I had it 35 years ago & got it again in 2009.While it is indeed rare, there are more of us than one4 might think...

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