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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer, jumping my diagnosis to Stage 3-C. So now I have another 2 weeks to heal from my surgery before radiation and chemo begin. I had absolutely NO symptoms; this was originally caught during a routine annual PAP test this July, (which apparently never happens). UPSC is very resistant to treatment with a high incidence of recurrance. I guess I was hoping to find someone else here with the same cancer type that would tell me that the upcoming long months and months of aggressive radiation/chemo will allow me to greet the spring cancer-free. I can't find anyone who has this rare cancer. (UPDATE: PLEASE SEE THREAD UNDER 'GYNECOLOGIC CANCERS OTHER THAN OVARIAN' DISCUSSION BOARD, WHERE UPSC SURVIVORS ARE NOW POSTING!)

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I was diagnosised on Sept. 8th. I had a hysterectomy and full cancer staging surgery on 10/23. I go back to the oncologist on Nov. 11 to find out about the pathology report. So far it looks as if I only had 1 small tumor and my oncologist feels that I will not need chemo.

Let's stay in touch. I will let you know how my doctors visit goes.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Hi! Although I wouldn't wish this heartache on anyone, still I welcome you to our sad little 'club'. With you, there are now 4 of us with UPSC on this Board. PLEASE STAY IN TOUCH! It is so easy to feel you are alone when you have a rare cancer. (If you look for my post on UPSC on the 'Gynecologic Cancers' discussion board, you can 'meet' the other 2 UPSC survivors here and hear their stories. One was diagnosed 2 years ago; the other a month before me.) Please let me know how your pathology turns out. How did you find out you had cancer? I had NO symptoms and mine was discovered after a routine annual PAP test showed 'abnormal highly suspicious cells'. After a series of 'nondignostic' biopsies, I had a D&C that included the removal of a small polyp that turns out to have the UPSC. A hysterectomy followed (October 10th) and the pathology showed microscopic cancer cells in 1 of the 25 lymph nodes they removed, making mine Stage 3C, with radiation and chemo a must. How are you doing following the surgery? I had some trouble the first couple of weeks with my digestion, but that is almost 100% normal now. I am 2 weeks further into this than you, so I hope that I can be a resource for you, and give you a 'heads up' about what is happening with my treatment. I see you made me a 'buddy' how did you do that? I would like to do the same with you and the other 2 UPSC women.

susan rose
Posts: 6
Joined: Jun 2012

Dear Linda
I joined this site in hopes of talking with survivors of this rare type of cancer. My sister was diagnosed with stage 3 after her hysterectomy surgery because it had spread outside of the uterus and the ovaries. She started chemo just 2 weeks ago and so far she is doing pretty good except for some neuropathy pain. We are both frightened but we are also hopeful for a cancer free ct scan following the chemo. I would very much like to hear from you and find out how you are doing today.
God Bless
Susan

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Hi, Marge! Any chance we can take this thread over to the 'Gynecology Cancers' discussion board where there is a thread entitled the same 'UPSC'? I want to pull you into the small club of 'UPSC sisters' here, as there are now 4 of us. I think reading what Deanna's treatment schedule is like will be good information for you, and we have a UPSC survivor posting there that is now free from disease, so that will be uplifting for you. So please pop over there and post under that thread.

I had my initial consultation with my radiology oncologist, and he thinks I should have my chemo 1st before my radiation. He says that radiation sometimes compromises the bone marrow to the point where you are then unable to complete all of the chemo rounds. He said he almost never does full abdominal radiation anymore because the side effects are so extreme, and that he would want to do pelvic radiation initially after the chemo, followed by internal radiation. (I guess he saves full abdominal radiation for reoccurance or something!) He also said that my higher post-surgery CA125 was probably a reaction to the surgery itself and that I shouldn't worry about that. So now I wait for the chemo oncologist to call for a consultation. (I'm no good at waiting; I'll call him if many days go by!) Meanwhile the radiology doc ordered an abdominal, pelvis CAT scan, & chest Xray for this Thursday. Oh, and I never expected the radiation doctor to do an internal exam, but he DID! (even a rectal poke around! EW!) I really wanted to come out of today's appointment with a treatment schedule so that I could plan Thanksgiving and Christmas and know if I will be well enough to cook and entertain. Ah, well. I can do a 'take out' Thanksgiving dinner from a restaurant if I have to.

Panie1o160
Posts: 2
Joined: Jul 2013

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. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 464
Joined: Mar 2013

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
Posts: 2
Joined: Jul 2013

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's picture
Alexandra
Posts: 1221
Joined: Jul 2012

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.

gretchencuffe
Posts: 2
Joined: Aug 2007

I was so happy to find others with UPSC . AM not sure how to use a blog but I have a lot of questions about reatment of recurring UPSC. At 18 months I have a recurrance in the upper right quadrant of the peritoneum. They gave me Taxatere and after 3 treatments the tumor no longer showed on the CT scan and my CA-125 was down to 30. I was thrilled and they wanted to do 3 more for good measure and then turn me loose. After 5 treatments I ended up in hospital with anemia and neutropenia (sp?) and face 6th Taxatere on April 8. Terrified I'll end up in hospital again. Once that happens, does it usually happen again? Also the CA125 has gone back up to 37 and the sense I got from my onc was that I might be on Taxatere indefinately. Do you know if anyone out there has been on it long term and what happens? Also what other chemo other than paclitaxol and carboplatin has anyone with UPSC been put on and did it worK? Also has anyone had any intraperitoneal treatments? I'd like tp know more about that.

To add to things my husband of 12 years decided to bolt, the cancer too much for him. We are in our 70's and he feels like his time is running out so defected to his sailboat in the Bahamas two months ago. Went thru 2 chemos without him and wonder if other men tend to run away from others' distress. He's a Brit, not an American tho I cant say that all Brits would be like him. I have wonderful friends and my kids who are rallying, so loving and supportive but it is still a shock. Am envious of those of you with compassionate mates. You are very very blessed so let them know how appreciated they are!!

deanna14
Posts: 734
Joined: Oct 2008

Glad to see you found us here. Most of the UPSC sisters post on the uterine cancer thread, so you may get more response there. I was diagnosed Stage IIIC in September last year. I have finished radiation and am currently taking chemo. 6 or 7 cycles of carbo and taxol. I made it through the first three easily, then my counts tanked and I am currently 2 weeks behind on treatment #4. Hopefully I will get that on Monday. I don't know, but I am hoping that just because you have difficulty once, doesn't make the problems routine. Please let me know if you find out differently. I haven't heard any of those posting on the uterine board that are on maintainence doses of chemo, but you read about it frequently on the ovarian cancer board. Same with the IP chemo, I've read about it on the ovarian board, but not the uterine board. I have been told that UPSC acts more like ovca and is frequently treated the same way. I would ask about the IP and long term treatments on the ovarian board. I think one of the big problems with UPSC is the lack of long term data as it is so rare.
Sorry to hear that your husband couldn't handle the pressure, I guess some men can't. I have been very lucky and this experience has made my relationship with my husband stronger. We have been together for about 10 years and finally got married in November. I was still taking radiation treatments at the time. I guess if he can't handle the pressure, you are better off without him. I hope that your other family and friends are taking extra special care of you now. Sorry not many answers, but I hope this helps some.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

((((Gretchen)))). So sorry about your disappointing husband. Make sure you get that sailboat in any settlement!

CONGRATULATIONS ON THE GREAT CA-125! I don't know about Taxatere, but I also experienced low white blood counts, platelets, and red blood counts for the last 3 of my 6 chemo rounds. I had my last (FINAL!) chemo on March 26th and am on 'safety' monitoring now where I have to go in every 7 days for blood work to make sure I don't need another transfusion. (I had to have 2 blood transfusions over my 6 rounds of chemo, and had 3 1/2 weeks of DELAYS where I was unable to get my chemo due to poor blood counts.) You may get your last round of Taxatere and be put on this close-monitoring 'safety watch' regime I am on, and not have to be hospitalized.

If you look down the list where you found this 'Rare Cancers' Discussion Board, you'll see a 'UTERINE CANCER' Discussion Board. Please click on that and you'll find the rest of the UPSC Sisters waiting there to support you and help you understand your treatments and side effects, etc. It's not a club any of us want to be in, but you will be glad to have women to walk this journey with who are experiencing it themselves.

Most of us are on our initial chemo rounds and getting Carboplatin/Pacitaxol. But there are a couple of women with recurrance who may be able to shed some light on the Taxatere. The 'Ovarian Cancer' Discussion Board is a great place to ask about chemo drugs, as those women have been on just about anything that would be prescribed for UPSC, as our cancers are so similar, and they are generous and knowledgeable, and we with UPSC rely on them a lot. There is also a SEARCH feature (if you scroll up to the top of the page after logging in), and you can type in TAXATERE in that box and it will provide you with a list of postings to cleick on to read what others have written about taking Taxatere. I will try to do some research for you also. ((((Gretchen))))

judim
Posts: 2
Joined: May 2009

My 1st round was Taxol IV with cisplatnim IP. I had violent side effects including neuropathy of both feet and hands and 6 hours of vomiting. Had to go back for IV hydration and different anti emetic. My treatment is now IV cisplatinim for a total of 6 rounds. I then go back for 2 days for IV hydration & medication. I have tolerated this well No longer use the port. I will then have 5 more Taxol IV but in weekly doses so that the neuropathy does not return. When all of this is done, I go for radiation. The platinim based chemo seem to be the most effective as they are cell cycle non specific and can stop abberent cell growth. Not a lot of info out there due to rarity of the diagnosis

papyper36
Posts: 1
Joined: Jul 2009

My name is Patricia. I am 73 y.o. single and beginning my journey into recovering from a full abdominal hysterectomy. my son found this website to help me fnd some women who have already been through what I am facing. I was showing discharge for 5 months before I mentioned it to my doctor. He did a pap smear and informed me that I had a rare form of uterine cancer called "serous carcinoma" and recommended the hysterectomy. I was in the hosptal for 5 days and am now home recuperating with many questions. The pathology report has not been issued and I am at a loss as to what the diagnosis might be. but I am prepared to accept the worst scenerio, I think.

I thank my lucky stars will have some friends to help me understand what s happening. Your blogs are so welcome, and I know I will learn a lot from all of you.

Is there an address for the website I could join?

Hope someone out there can lend a compassionate hand, and heart.

Patrca

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

To be on the Uterine Cancer Discussion Board, just paste this URL in your browser:

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

Then, if you put 'UPSC' in the Search box, it will pull up more CURRENT statistical and practical information on your very rare cancer than probably any the place on the internet. There are at least a dozen of us with Uterine Papillary Serous Carcinoma that are posting on that blog. You would be very welcome. ((((BIG HUGS))))).

Peggy Davis
Posts: 7
Joined: May 2012

How are you now?

hope_floats
Posts: 5
Joined: Aug 2011

Hello to all,

I have a sister who was recently diagnosed with this rare form of cancer and was hoping to find someone that might be able to shed some light on the types of treatment you've gone through, or maybe even what to expect.

I would truly appreciate any responses.

allarts
Posts: 3
Joined: Feb 2012

Like yourself (for your sister - hope she is dong as well as possible), I am seeking contact w/those who might offer infomation (specific to UPSC) advice, and possilbe encouragement.
I am esp. concerned about chemo as I am allery prone and very sensitive to a mumber of common chemicals-to say nothing of the kind used for chemo.

allarts
Posts: 3
Joined: Feb 2012

Your blogs are wonderful!
Thank you for initiating this site.

Pat51
Posts: 111
Joined: Feb 2011

I am a UPSC sister. There are more of us on the uterine cancer board. Please join us.

Maggie_mac
Posts: 5
Joined: Mar 2012

I was diagnosed and had surgery in November 2011. Yesterday I had chemo #4 and my final is scheduled for March 30th. After that there will be some tests and my oncologist anticipates a recommendation to start oral chemo. I am interested in hearing from others who have had oral chemo following the IV route.

Thankfully, we are a small sisterhood, and I understand treatment options will not be the same for all of us, but sharing information could be helpful.

God Bless you all. Maggie_mac

Peggy Davis
Posts: 7
Joined: May 2012

How are you doing now? Any new cancer?

Cindy Bear
Posts: 563
Joined: Jul 2009

I don't know if your question is directed to Linda Procopio (how are you doing now?) but sadly, I wanted to inform you that Linda passed away. It was sometime Mid-November 2011 I believe. She posted more on the ovarian boards in her later days. I think because her cancer (a rarer form of uterine) was aggressive like ovarian. Plus there was some drama on the uterine boards she probably wanted to avoid. If you go to the ovarian boards and search, you can probably find her later posts. As aggressive as Linda was, her cancer was more so. She had mets to her liver, and endured that y-sphere radiation to the liver. She gives a detailed account of what it entails. She had both sides done, one , then the other. But sadly her liver ended up shutting down. It's such a shock to believe she's gone.. she was such a vibrant, full of life person. I am sorry to bring bad news to this board.

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