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UPSC long-term survivors

Posts: 3
Joined: Jul 2018

Hello everyone, 

I discovered this forum while helping a close friend to research her recent UPSC diagnosis. A couple of days ago she had her surgical staging and was diagnosed Stage IV. 

There is a lot of helpful information on these boards, but I am curious to know whether anyone can point me to any examples of long-term survival with a Stage IV UPSC diagnosis. If there are any active members reading or anyone who knows of active members in this situation, please help me to find them. I would be very grateful to be able to connect with anyone who can share hope for a favorable outcome. 

In appreciation, 




NoTimeForCancer's picture
Posts: 2915
Joined: Mar 2013

Angel, please know that no one knows how long they have on this earth.  All the women here have very different stories, so I would hope your friend is working with a gynecologic oncologist who is going to make a plan for her to work.  None of us fight this beast alone.  The love and support of our friends and family is so important, and you are a good friend to be searching for answers.  UPSC is an agressive cancer, I won't sugar coat that, but stay away from Dr Google and come here with questions.  The ladies have walked in the shoes of your friend and will share thier knowledge and support. 

Posts: 3
Joined: Jul 2018

Thank you for your response. :) My friend lives quite far away from where the GYN-ONC is located, so he's not very available to her, and seems to think we're a bit pushy already because of all the questions I have asked on her behalf. Thankfully she has quite a few friends who are knowledgeable doctors, but nevertheless I know it would help her a lot to hear others' stories. I would love to hear from some of the women who have the UPSC diagnosis, especially those with an advanced stage. 

cmb's picture
Posts: 730
Joined: Jan 2018

I don't have your friend's type of cancer, but there is one member who was diagnosed as Stage IV UPSC several years ago and who still posts regularly. If you go to the link https://csn.cancer.org/node/316954 you can read the post from pinky104. Clicking on the username in the blue box next to posts will also give you more information about her cancer experience. You can also read about the experiences from other members who responded to this "roll call."

Many women post on this board when they are first diagnosed or through their active treatment period, but stop as their cancer experience recedes into the past. So we really appreciate long-term survivors like pinky104 who continue to participate in these discussions.

Posts: 574
Joined: Feb 2013

Yes, I'm the long term survivor.  I was first diagnosed in May, 2010.  My cancer was in the uterus, both ovaries, the omentum, and the small intestine.  I did surgery and chemo.  The chemo consisted of Carboplatin and Taxol.  I was found to have no evidence of disease when I completed that in Sept., 2010.  My CA-125's were in the 8's, then the 7's and 6's for many years.  In 2016, I had a result in the 9's, but I was told not to worry, it was still normal.  Then it went up to the 14's in Feb., 2017, and was told the same thing. Of course, I did worry.  In the next two months, it skyrocketed up to the 129's.  In the meantime, I did a hemoccult test and blood was found in one of three stool smears I provided.  I had to go for a colonoscopy, where the camera placed inside me showed cancer growing on the outside of my ascending colon (apparently, the colon was thin, so the cancer showed through).  I had a CT scan and a PET scan and was rushed to surgery the following week before I ended up with a bowel obstruction (the cancer was pressing inward on the colon).  I had two resections of my intestines, one for the cancer and another because my intestines had grown into the mesh I'd had put in me for an incisional hernia back in 2012. Cancer had spread to a few other areas nearby.  I again underwent chemo.  I started off with Carboplatin and Gemzar.  Gemzar was a worse chemo for me than Taxol was, although I didn't lose as much of my hair with it.  The doctor had to knock the dose down a lot after the first one, as it lowered my blood counts much faster than the Taxol had.  He said that's what it normally does.  I had to skip a week of chemo a couple of times because my blood was in such poor shape that I couldn't have it.  On my next to last chemo, I developed an allergy to Carboplatin after my 11th time having it over the years, so I was changed to Cisplatin (along with the Gemzar) for the last round.  I was again found to have no evidence of disease after I finished chemo in Sept., 2017. 

I just had another CT scan recently.  One of my symptoms when my cancer started coming back in 2016 was numbness in my right thigh.  I'd gone for testing with a neurologist who said I had paresthetica meralgia, which basically came down to a pinched nerve from wearing my clothes too tight.  It turned out that wasn't what was causing it.  I had a tumor in my muscle fast approaching the bone in my pelvis.  The tumor was pinching the nerve that goes over the pelvis.  My GYN/onc. couldn't get it all in my cancer surgery without affecting my walking, so he hoped chemo would take care of the tumor, which it did.  However, the numbness remained.  It seems to have gotten worse this year (more layers of the thigh feel numb), so I've been afraid the cancer might have come back in the same place again.  My CA-125 had gone from the 10's after my chemo this time to the 14's again, so that had me worried.  But my recent CT scan showed no cancer, and my oncologist told me it was read by the hospital's best radiologist.  He told me that CT scans don't always pick up everything, so he'll be keeping a close watch on me.  I alternate going to my GYN/onc (my surgeon) in one hospital and my oncologist in another hospital closer to home every 3 mos.  If my CA-125 continues to go up, I'll have to have another scan.  My CA-125's do tend to be accurate.  I'm just very grateful the cancer isn't back.  I've had to go thru a number of surgeries since I turned 60, not just the cancer surgery, and I was hoping that if the cancer was back, I could catch it earlier this time.  For each of my cancer surgeries, I was in the hospital for 6 very painful days with a couple of weeks of severe pain following surgery.  The chemo was definitely better than the surgeries, although I did end up fatigued and short of breath from it.  I had transfusions of two units of blood right after the first surgery and two units of blood about halfway or a little more thru my two courses of chemo treatments.  The second time around, I didn't feel as short of breath as I did the first, in spite of my blood counts being lower.  I still have chemo-induced anemia 10 mos. after completing chemo.  My oncologist says that as long as it doesn't get any worse, he won't treat it.  I wonder if he said that because there are so many blood shortages in this area in the summer.  With the college students from the local colleges being off for the summer and people going away on vacation, they just aren't getting enough donations.   Maybe transfusions wouldn't even help.  He almost made it sound like chemo had deformed my red blood cells.  I hope this cancer doesn't come back a third time.  He acted like I was very lucky it had come back all in one general area where he could get most of it and lucky that chemo works so well on me.  He told me a lot of people aren't so lucky.

If you need any more info., feel free to contact me.  I'm not on here every day, but I usually get on once or twice a week.

Posts: 3
Joined: Jul 2018

Dear Pinky,

I can't thank you enough for taking the time to write a response, and for telling me so much about your experience. It is beyond kind of you to share your story with strangers like myself, and it is inspiring and encouraging for me to hear from you and to learn that you have come so far. My heart and gratitude go out to all who are here sharing their own stories.

I am sending you my very best wishes for your CA-125 results. Thank you again. 

derMaus's picture
Posts: 561
Joined: Nov 2016

Pinky that's just too ironic - your doctor said you'd given yourself a pinched nerve by wearing tight clothes ?? What a******** ! I always appreciate your chiming in but especially today, as we need all the long term survivor stories we can get. I'm grateful that you always take the time to post, in detail, and provide us so much useful information. It sounds like my latest tumor is at the same spot as yours, and my thigh numbness continues to be bad...but reading about yours makes me realize I can live with this just fine. Be well and thank you again for the informative posts. 

NoTimeForCancer's picture
Posts: 2915
Joined: Mar 2013

B, I SO agree with your comment regarding our sweet pinky!  

pato58's picture
Posts: 120
Joined: Jun 2018

I thought the same!
Sometimes Drs treat us as incapable of logical reasoningUndecided

Take care Pinky!

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