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UPSC - Any survivors greater than 5years?

Catmalogen
Posts: 19
Joined: Jul 2012

Hello Fellow UPSC sisters.. I would like to start a discussion on looking at recurrance rates and survival from the USPC group. This may sound depressing, but I think it would be positive to put light on this "Rare Agressive Cancer".

I had surgery (TAH + BSO and pelvic node clearance Aug 2010). Surgical staging IIIC. (Node involvement). Followed by 8 cycles of Taxol/Carbo and 4 Treaments of Vag Brachytherapy.

Now 2+years later and many scans (PET + CT scans).. No recurrance...Thank God.

I feel from reading some of the stories on this site that it is a given that one will have recurrance ??? Or are women who are now USPC cancer free, not on this site?? Anyone out there 5 years on who has had an all clear? Also would like to here if there is anyone with successful clear scans post treatment for recurrance. Cat

lawyerserv
Posts: 5
Joined: May 2011

Hi Cat, I have been watching this board for nearly two years.  I was diagnosed with stage lllc UPSC on 5/5/11.  I had davinci surgery, followed by 6 chemos of carboplatin/taxol delivered in a "sandwich" with 5 weeks of pelvic ratiation and 2 brachytherapies.  I have been NED ever since.  When you read all the stuff on-line its very depressing, but you need to know that there are survivors.  My radiation oncologist said he knows survivors of this cancer, and a top researcher in UPSC told me he has a patient who is into her 7th year. On 5/5/13 I will be two years NED.  Two years is a big anniversary, then three, then five.  I have done lots of research into this and will try to post more, but right now I am at work!  Best of luck to everyone and LONG LIFE. Arlene

beila
Posts: 97
Joined: Sep 2012

thank you for your uplifting note

I'm sure I am not the only one curious...who and where is this UPSC top researcher???

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

It's hard not to be discouraged. Don't give up hope that carboplatin will not work in future. It has worked for me with multiple recurrences.

mary Ann

tequila
Posts: 2
Joined: Apr 2013

I am new to this site but I have been reading your comments for months. Thank you for contributing, I have learned so much from all of you.

I was diagnosed last fall with UPSC grade3 Stage 3A in a routine pap test. I had no symptoms. I am 67 years old but very active - aerobics, inline skating, curling, walk 4-5 miles a day. I am also a DES daughter, and strangely enough my brother also has a very rare form of cancer. I had surgery in October 2012 - the cancer was 1 out of 11 mm invasion into  the wall of the uterus but had gone into the right fallopian tube - all lymph nodes and washing were negative. I did not have any treatment after the surgery. My CA125 was 13.3 prior to the surgery, it was 8.9 four months after the surgery and two months later it is now 10.4. Prior to the last CA125 I pushed for a CT skan, which showed an enlarged lymph node in the pelvic area. I then had a PET skan which shows a 1.1 cm left external iliac lymph node that is intensely hypermetabolic. My doctor has recommended 6 rounds of dose dense chemotheraphy which I am scheduled to start next week.

In the province that I live in Canada they only do chemo for UPSC but yet in another province they do chemo and radiation. In all the studies that I have read it seems that the best chance for the least amount of recurrences is with chemo and radiation. It appears that most of you on this site had this type of treatment as well. I am hoping to go to the Mayo Clinic in Scottsdale for a second opinion.

I would like to know if those of you who did chemo and radiation did standard chemo or dose dense chemo and what type of radiation that you had.

I know that this type of cancer is closer to ovarian cancer than any other type of endrometrial cancer, and I think I am being treated as if it was ovarian cancer. I don't feel that my doctor gives me enough information and I often wonder if this is because they don't often see this type of cancer.

Cathy in Canada

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