Uterine Papillary Serous Carcinoma (UPSC): anyone else out there???

NoTimeForCancer · August 2013

Panie1o160 said:
Just diagnosed & just found this site
Hello, my name is Diane and I have just been diagnosed; my surgery is scheduled for 8/21. I just found this site yesterday and registered. I was wondering how you are doing. Hope all is well. That is a great picture- those kids are adorable.

Please come over to the UTERINE chat board

Panie 1o160,

Please check out the cancer specific: UTERINE. I am one of the other UPSC women over there and you will find lots of wise warriors can be of assistance.
Sadly, I believe I read that Linda had left us from this world, but has given us all so much. I only found this site by googling something and getting her thread on this board.

There are WONDERFUL loving and giving women over there and would ask that you visit us to chat.

Panie1o160 · May 2014

NoTimeForCancer said:
Please come over to the UTERINE chat board
Panie 1o160,

Please check out the cancer specific: UTERINE. I am one of the other UPSC women over there and you will find lots of wise warriors can be of assistance.
Sadly, I believe I read that Linda had left us from this world, but has given us all so much. I only found this site by googling something and getting her thread on this board.

There are WONDERFUL loving and giving women over there and would ask that you visit us to chat.

Uterine Chat Board

I don't know how to get to the Uterine Chat board you noted. How are you doing? I had my surgery on 8/21/13- everything removed, stage 2 grade 3, now have recurrance.

Alexandra · May 2014

Panie1o160 said:
Uterine Chat Board
I don't know how to get to the Uterine Chat board you noted. How are you doing? I had my surgery on 8/21/13- everything removed, stage 2 grade 3, now have recurrance.

Panie,

Here's the link to the UPSC discussion on Uterine cancer board http://csn.cancer.org/node/163120

Click on the Discussion Boards (first line of the pink menu on the left) and click on Uterine Cancer to get to the board.

Sorry about your recurrence.

libby.sparks · November 2015

New member

Hi Everyone.

It's lonely isn't it? so many uncertainties and not much information coming forth from the medical team. And of course, there isn't one soul I know personally that has been diagnosed with serous endometrial cancer.

My story:

April 2015 rand the Paris marathon. Traveled the south of France for the next 2-3 weeks with an acquaintance, whom I did not know well. Had bowel difficulties, which I chalked up to being on vacation. The bowel issues worsened. I saw a couple of doctors in early June, who diagnosed constipation. A GI doctor thought I had pelvic floor dysfunction. By early July I was unable to pass more than a very small stool and by the end of July only small amounts of liquid stool. Pelvic pressure intensified. MRI pelvis late July showed uterine and ovarian tissue abnormalities. CT abdomen and pelvis showed uterine mass (11 cm) growing posteriorly, obstructing the bowel. CA-125 1218 (normal 0-30).

Early August saw GYN ONC surgeon. Three days later hysterectomy, bilateral oophorectomy (ovaries), Fallopian tubes, bowel and bladder resection, ileostomy, omentumectomy, carcinomatous implants resected from diaphragm.

Two weeks later developed e coli bacterial peritonitis. Hospitalized. Drain placed to remove infected fluid from abdomen. Lost 20 pounds and tons of proteins.

High output from ileostomy required three times a week IV hydration at the local hospital.

6 weeks postop developed severe abdominal pain, nausea vomiting, dehydration worsened. Diagnosed with small bowel obstruction.

4 weeks later underwent bowel resection to relieve bowel obstruction. Am left with 9 feet of small intestine (normal is 27 feet). The small bowel is the site of nutrient absorption. The terminal part of the ileum (small bowel) is the site of bile being reabsorbed into the gut. Since I no longer have a terminal ileum, the bile passes to my colon. This caused bilious diarrhea. Since bile is acidic, this was associated with burning. While still in the hospital recovering this surgery, I learned on my own that there is a drug that exchanges ions in the bile. This is cholestyramine (aka Questran). Once i started taking this, the painful diarrhea resolved. I am now having formed clay colored bowel movements.

I underwent 2 cycles of Paclotaxel and Carboplatin chemo; the chemo was interrupted by the 2nd surgery. After the first cycle of chemo the CA-125 fell to 26; and after the 2nd cycle of chemo the CA-125 fell to 13. I am scheduled for cycle 3 this Tuesday.

I am so afraid to read much about UPSC. The prognosis I am reading about is based on older literature, which isn't good. Just curious if anyone has more hopeful information following extensive surgery/debulking and chemotherapy.

Thanks for your time.
Libby

NoTimeForCancer · November 2015

libby.sparks said:
New member
Hi Everyone.

It's lonely isn't it? so many uncertainties and not much information coming forth from the medical team. And of course, there isn't one soul I know personally that has been diagnosed with serous endometrial cancer.

My story:

April 2015 rand the Paris marathon. Traveled the south of France for the next 2-3 weeks with an acquaintance, whom I did not know well. Had bowel difficulties, which I chalked up to being on vacation. The bowel issues worsened. I saw a couple of doctors in early June, who diagnosed constipation. A GI doctor thought I had pelvic floor dysfunction. By early July I was unable to pass more than a very small stool and by the end of July only small amounts of liquid stool. Pelvic pressure intensified. MRI pelvis late July showed uterine and ovarian tissue abnormalities. CT abdomen and pelvis showed uterine mass (11 cm) growing posteriorly, obstructing the bowel. CA-125 1218 (normal 0-30).

Early August saw GYN ONC surgeon. Three days later hysterectomy, bilateral oophorectomy (ovaries), Fallopian tubes, bowel and bladder resection, ileostomy, omentumectomy, carcinomatous implants resected from diaphragm.

Two weeks later developed e coli bacterial peritonitis. Hospitalized. Drain placed to remove infected fluid from abdomen. Lost 20 pounds and tons of proteins.

High output from ileostomy required three times a week IV hydration at the local hospital.

6 weeks postop developed severe abdominal pain, nausea vomiting, dehydration worsened. Diagnosed with small bowel obstruction.

4 weeks later underwent bowel resection to relieve bowel obstruction. Am left with 9 feet of small intestine (normal is 27 feet). The small bowel is the site of nutrient absorption. The terminal part of the ileum (small bowel) is the site of bile being reabsorbed into the gut. Since I no longer have a terminal ileum, the bile passes to my colon. This caused bilious diarrhea. Since bile is acidic, this was associated with burning. While still in the hospital recovering this surgery, I learned on my own that there is a drug that exchanges ions in the bile. This is cholestyramine (aka Questran). Once i started taking this, the painful diarrhea resolved. I am now having formed clay colored bowel movements.

I underwent 2 cycles of Paclotaxel and Carboplatin chemo; the chemo was interrupted by the 2nd surgery. After the first cycle of chemo the CA-125 fell to 26; and after the 2nd cycle of chemo the CA-125 fell to 13. I am scheduled for cycle 3 this Tuesday.

I am so afraid to read much about UPSC. The prognosis I am reading about is based on older literature, which isn't good. Just curious if anyone has more hopeful information following extensive surgery/debulking and chemotherapy.

Thanks for your time.
Libby

Libby - PLEASE visit the

Libby - PLEASE visit the Uterine board!!! There are other women there who have UPSC. You are not alone and can meet the other beautfiul warriors.

http://csn.cancer.org/forum/189

Uterine Papillary Serous Carcinoma (UPSC): anyone else out there???

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