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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

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I'm so happy for you and know you're on cloud 9!!!!  5 years NED...now that great news is worth yelling from the roof tops, ya think?

 

I know over the years we've exchanged emails and postings and you as well have given great support to others here....we thank you!!  

 

Few things I'd add to your list of diet changes --

.  Probiotics -- be it supplements, raw dairy, fermented foods or kefir (These repair the gut and the compromised villi)

.  Meat/poultry -- organic, hormone-free, antibiotic-free, only free-range, grass fed.  Commercially raised meats contain hormones and antibiotics and the animals are fed grains, results in meath that are high in Omega 6's which cause inflammation and  cancer growth.  

.  9-10 cups/day organic veggies (or follow the DIRTY DOZEN list for which MUST be organic)  Make a green smoothie and ingest 4-5 cups...easy!

.  Eat healthy fats from coconut oil, olive oil, avacado oil, and nuts (especially macadamia and hazelnuts) 

 

When in doubt remember our #1 seller --  THE ANTI CANCER book, by Dr, David Servan-Schreiber

 

I'd love to see more topics on keeping our terrains in healthy working order....

Hugs and best to you Jill~

Jan

 

 

 

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

It's hard to live on Cloud 9 when so many in our community are struggling, but I am feeling much more peaceful that I did even a week ago.

Still, I take nothing for granted and continue to watch my diet, stress level, and daily exercise. It's gorgeous where I live--in a community called Carroll Gardens, Brooklyn, which certainly lives up to its name with the magnolias, mimosas, cherry blossoms, and pear trees--and I enjoy walking and exploring.

Kathy, thank you SO much for remembering my dog. Trixie is such a wonderful dog and has been affectionately and attentively by my side through this whole process. She is so smart and playful and was always able to keep my spirits up when I was at my lowest point.

Jan, thank you so much for your suggested dietary changes; I am right there with you! I don't eat meat and always choose free-range, hormone-free chicken. I take a daily probiotic called PB8, eat a big bowl of homemade organic vegetable soup and a huge salad with lots of fresh vegetables and 1/2 avocado each day, use plenty of olive and coconut oil, snack on a handful of nuts and make a great kale salad with toasted hazelnuts, make either a fresh vegetable or a yogurt and banana smoothie each day...I have major OCD when it comes to eating healthy food, but I take GREAT pleasure in preparing my meals.

I, too, would love to hear how other women are keeping themselves healthy. BEST of health to everyone.

 

Love,

Jill

 

 

 

 

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: 13
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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