Uterine Papillary Serous Carcinoma (UPSC): any others here???

EmilyL said:

UPSC

Just joining this prestigious club:).  Went for annual exam May 2013.  Biopsied July2013. UPSC.   Radical hysterectomy July 2013.  Stage II. Back in hospital 10 days later for abdominal blood clot.  Awaiting "review" & treatment options in two weeks.  You have all been an encouragement to me.  Frustrated a bit with friends/family who say "just stage 2?...that means they got it all and I don't know what you're even concerned about.". I don't consder myself a worrier, & even find myself sugar-coating the pain & fatigue.  Anyone else have ths experience?  

Nobody wants to join us.  Hearing that you have cancer is quite unsettling.  It takes a while for it to sink in.  Sorry you had to go back into the hospital after your initial surgery.  Hope you are recovering now.  Feel free to ask questions, express frustrations or other feelings you may have.  Good luck with you treatment options.   We are here to support you.  In peace and caring.

vbpeterson13 said:

My Mom, Stage IIIC2

My mother was diagnosed 2 weeks ago with UPSC and was told today that she is in stage IIIC2.  This has been devastating to me and I am scared beyond belief.  She will begin chemo in 2 weeks and then radiation after the chemo is completed.  Any feedback or advice on what to expect would be very helpful for me. 

Thank you,

Carrie

hello vbpeterson,i am sorry to hear this & my heart goes out to u & your family,my mother was also diagnosed with upsc sept.9,2013.i like you was floored.i could not believe this is happening to us,but after the initial shock all we can do is fight & never give up.our dr. is dr.stringer out of dallas.he ordered a catscan to see how severe it is.after that bhe said he will probably order her to have the robotic davinci (laser)to remve the cancerous tumor.this will be good since my mom is a diabetic.after that he will see what treatment is best suited for her.i have done some research and came across a fruit called "soursop fruit".i've heard some good stuff about it,bothon the internet & from people who have actually tried it.they said it does help them to feel better.i am looking in to getting mom some,you never know.just hang in there & i try to keep mom busy with activities,she loves the 9 liners(video machines)like slot machines,so that helps keep her mind occupied.remember stress is a terrible thing so i do the stressing for mom.hang in there and know that you are in our prayers.

frodolass said:

I'm going to go back and read all the posts...I'm sure there is a ton of helpful information found in this thread. I just wanted to introduce myself. I'm 52 years-old and was diagnosed with UPSC with clear cell features in early August. I had a total abdominal hysterectomy with ovaries and fallopian tubes removed as well. I hadn't been to the doctor in a decade, but was having some weird bleeding and awful pain. It's the pain that finally got me to the ER where everything else followed. There was no cancer found in the lymph nodes or outside the uterus. I haven't yet been told my stage, but I was told today that the cancer had grown deeply into the wall of the uterus and that the cervix was also involved in some way.

Today I met with the radiation oncologist and I will meet with the chemo guy on Monday. I know NOTHING about any of this. I feel completly overwhlemed and not sure what's going on. The radiation doc said that I'd need 5.5 weeks of radiation to the pelvis and 3 weeks of vaginal something-or-other. This would be everyday for 8-9 weeks. We won't start radiation therapy until after I finish chemo.

What is the "typical" regimen for the chemo? They said something about every three weeks for four or five months. Would that be one visit every three weeks or several days every three weeks? I'm a teacher and am very anxious to get back to work.

Oh, and to add to the "fun," I was also just diagnosed with HBP and diabetes.

Thanks for reading. I'm scared and uninformed and it's driving me nuts :-)

 

 

Frodolass,

I was diagnosed in late June w UPSC CC , surgery (similar) in July.  StartedTC chemo 8 days ago.  I am having chemo once a week for 3 weeks, then off. Week, then another 3 weeks, for 4 "rounds", which will be 4 months, involving 12 treatments.  After that we will do scans & re-evaluate.  So far I am amazed at the effectiveness of the anti-nausea drugs...take them as directed even when you feel well!  I realize I'm early into treatment, & it will get worse, but I am grateful for my time in the "chemo lounge" as you meet wonderful people, both patients & staff.  I am always grateful for my health as you see so many who are so much sicker.  Again, I'm new to this but a word of advice:  there are no guarantees with UPSC CC, but you are given this gift of time to tell the people around you how much they mean to you, then stay positive & fight!

daisy366 said:

Loneville
Hi. I am a upsc sister - originally stage 3a 3 years ago. My initial treatment following surgery was the typical 6 rounds of carboplatin and taxol (I has a functional profile of biopsied tissue which confirmed that these were best chemos for me). I did NOT get adjuvent radiation as many/most others seem to get - my doctor did not recommend radiation for me. However I had recurrence in supraclavicular lymph nodes 15 months after completion of chemo. I then had carboplatin and radiation for that. I've been almost a year NED.

I learned something from you. When I checked the NCCN guidelines which my doctor uses, I did not realize that radiation alone is an option listed there. I'm just curious what made your doctor choose this rather than chemo - let us know if you ask him.

If I were you, I would discuss all this with my doctor. I also would change my thinking and don't "assume or expect" it will recur. That only puts a subconscious message in your brain and body.

Even though you did not ask this, I will throw in my 2 cents about exercise. I have read that MODERATE exercise helps our immune system and discourages cancer. However vigorous exercise stresses the body which in turn lowers the immune system. Hence, I would encourage you to not overstress your body while training for your race. I applaud your exercise and will be cheering for you from the States!!!

All the best. Mary Ann

My mom was diagnised with UPSC stage 3c, the tumour extended to uterus and lymph nodes. She has just finished her first cycle of chemo and the tumour has shurnk as well as the lymph nodes. But they still refuse to do the surgery. They recommonded 5 weeks of radiation then decide about the surgery. There is also a 6 weeks wait after the radiation for any inflmmation. I want to know when did you do the surgery? 

debrajo said:

Daisy

Hi Goldheart, Just wanted to let you know that Daisy 366, our dear Mary Ann, passed away some months ago.  She was a true fighter.  Ro on this site I think has been batttleing this monster probably longer than anyone and could probably answer all your question.  Several survivers of long standing don't post too often.  Try Ro here or by her email through this site.   Best, debra   

I  am so sad sad sad by this news. I read all the posts and was inspired by Daisy's story. It's so hard to keep my hops up.

Goldheart said:

Hi Emily,
Can I ask what

Hi Emily,

Can I ask what stage were you when diagosed? my mom has UPSC stage 3c, it has spread to lymph nodes nods and the tumour extended to uterus. She has had 3 cycle of chemo and the tumour has shrunk but still outsite uterus. They are refusing to do the surgery. They want to put her in 5 weeks of radiation and then chemo and then decide for surgery. I think her surgen is young and not confidence. That's whay the surgery is been delayed. 

Mine was UPSC Grade 3, with clear cell, stage 2.  I had hysterectomy & then started chemo T/C, & just finished first round, 3 to go.  After that, not sure what we'll do.  The surgery isn't that bad...unless you get a blood clot:(.  Don't hesitate to get a 2nd opinion if you have any doubts!

psk said:

New to Board

Hi Everyone, I am new to this board and so glad to find you all.  There aren't many of us rare UPSC types I understand.  I was diagnosed with UPSC last November 2012, had my Merry Christmas/Happy New Year surgery on December 28th, where I was opened from pelvis to rib cage and put back together with 40 staples. Then went on to carbo/taxol chemo, six rounds from early Feb until June, followed by 28 radiation treatments which I just completed last month.  Wow!  I made it through it all.  I will be getting a ct scan this coming Monday to see if everything is clear.  It was NED with my last ct scan in June following chemo. My CA-125 has risen with my last lab work, but the doctor is suspecting/hoping that it is due to the radiation.  I guess things like infections and other bodily irritations can affect the CA-125 levels.  I am keeping my fingers crossed. I feel great and am having no other symptoms. Starting to get over the side effects of radiation which did a major job on my urinary tract and bladder.  Anyways, I just wanted to introduce myself and become part of the discussion board.  We have to hang in this journey together.  I live in Columbus, OH, and am being seen at the Ohio State James Cancer Hospital. Oh yeah, I am UPSC Stage IVB.  Paula 

I have the other Grade 3 cancer uterine carcinoma sarcoma or old MMMT.  I was stage 3c1 because it had spread to 1 lymph node.  I had 6 rounds of carbo/taxol but no radiation.  Different drs treat it differently.  I use to worry about it but so far so good NED for 2 years now.  Finished last treatment on 22 Aug 2011.  I was happy I found the board to  so many helpful caring women and their families supporting and understanding what you are going through.  It is a great place to come.  trish

Ro10 said:

Welcome Paula

Glad you made it through your chemo and radiation.  Hope all comes out well with your CAT scan.   My CA125 has always started to rise after I stopped chemo.  So follow up scans indicate when I need to have chemo again.  Luckily I have responded to the taxol/ platinum drugs each time.  during my  9th Carbo treatment I had a severe reaction, so they switched me to cisplatin .  

Will look forward to further posts as you share your experiences.  In peace and caring.

Well the ct scan results came back. Everything is clear in the pelvic area but the doctor noted some "irregularity" in the abdominal lining. He wants to do another ct scan and ca-125 in two months To see if there is any change. He said at this point he can't say if it is cancer or not. I'm having difficulty just waiting and seeing. I'm thinking about getting a second opinion on treatment, perhaps MD Anderson or Dana Farber. I want to go somewhere that is on the cutting edge of women's gynecologic cancers. I trust my doctor and my hospital, but I'm thinking that I get 2nd opinions all the time on my car and repair, why would I not do the same for my health Where the stakes are so much higher? Your thoughts???

frodolass said:

I'm going to go back and read all the posts...I'm sure there is a ton of helpful information found in this thread. I just wanted to introduce myself. I'm 52 years-old and was diagnosed with UPSC with clear cell features in early August. I had a total abdominal hysterectomy with ovaries and fallopian tubes removed as well. I hadn't been to the doctor in a decade, but was having some weird bleeding and awful pain. It's the pain that finally got me to the ER where everything else followed. There was no cancer found in the lymph nodes or outside the uterus. I haven't yet been told my stage, but I was told today that the cancer had grown deeply into the wall of the uterus and that the cervix was also involved in some way.

Today I met with the radiation oncologist and I will meet with the chemo guy on Monday. I know NOTHING about any of this. I feel completly overwhlemed and not sure what's going on. The radiation doc said that I'd need 5.5 weeks of radiation to the pelvis and 3 weeks of vaginal something-or-other. This would be everyday for 8-9 weeks. We won't start radiation therapy until after I finish chemo.

What is the "typical" regimen for the chemo? They said something about every three weeks for four or five months. Would that be one visit every three weeks or several days every three weeks? I'm a teacher and am very anxious to get back to work.

Oh, and to add to the "fun," I was also just diagnosed with HBP and diabetes.

Thanks for reading. I'm scared and uninformed and it's driving me nuts :-)

 

 

C:\UPSC & mda\Compass Early Uterine Papillary Serous Carcinoma.mht

C:\UPSC & mda\Frequently Asked Questions (FAQ) about the CA-125 Test good.mht

I like this brief info on CA-125... When the methodology changed using one type product by my hospital; the next type product increased my baseline from a CA-125- 14 to 21... quickly...just by using the different maufacturer of CA125....this article and my doctor helped me understand.... caused a new baseline to be figured out over several months. CA-125 has been studied  mostly for ovarian and was targeted for this cancer (as my understanding & been told); yet, it is the only thing out there right now for USPC. At time I had surgery & had USPC diagnosed with UPSC, mine CA 125 was in the 'normal' range...

This article really helped me. Perhaps it will be of some use to you and others. The first article has been posted before. I haven't been on line in a while, so it might be a recent post by someone.  I'm 4 1/2 (1A stage 3) years out with USPC (my doctor says it is now being called USC by some). This is  aggressive cancer, I was informed it gets classifed stage 3 ASAP.  I had the 'sandwich method' and glad I went this route. Each person needs to feel comfortable with their health care people and what is happening to them. We share this diagnosis; yet, we each are individuals with different history/ages, etc.

 I did not have good luck with my regular Ob-GYN when I thought something was wrong. She dropped the ball with a test that I requested. Eight months later, I went back and restated I had a new symptom...anyway...the cover-up started and she had missed a 17mm stripe thickness in my uterus.   I changed doctors and hospitals and right away with new tests, I was suspected to have UPSC, and at time of staging during surgery, it was confirmed. I found my own Gyn-Onc who has been my link to sound medical information and always giving me the opportunity to ask anything and discuss what research I read. 

My emotions changed it seemed sometimes hourly or many days in between those first months and then slowly a little less as time went forward. I had some great friends who let me feel those emoitons and were truthful to listen and respond to me.

I worked through all the treatments.  I've studied really good medical info sites and only the most recent...many times it was so hard to read...yet, because I did, I set a path that worked for helping me ask those questions of the medical people...

Hang in there everyone...so many of you got me through this and continue to provide support...I sometimes take a break as one person gave me this advice on this site... so I still do..

I think of my 'sisters' and know we are out there asking questions, desiring more research and money, and to get the information out to more women of this disease that sneaks up on so many of us...

Bless you all

frodolass said:

I'm going to go back and read all the posts...I'm sure there is a ton of helpful information found in this thread. I just wanted to introduce myself. I'm 52 years-old and was diagnosed with UPSC with clear cell features in early August. I had a total abdominal hysterectomy with ovaries and fallopian tubes removed as well. I hadn't been to the doctor in a decade, but was having some weird bleeding and awful pain. It's the pain that finally got me to the ER where everything else followed. There was no cancer found in the lymph nodes or outside the uterus. I haven't yet been told my stage, but I was told today that the cancer had grown deeply into the wall of the uterus and that the cervix was also involved in some way.

Today I met with the radiation oncologist and I will meet with the chemo guy on Monday. I know NOTHING about any of this. I feel completly overwhlemed and not sure what's going on. The radiation doc said that I'd need 5.5 weeks of radiation to the pelvis and 3 weeks of vaginal something-or-other. This would be everyday for 8-9 weeks. We won't start radiation therapy until after I finish chemo.

What is the "typical" regimen for the chemo? They said something about every three weeks for four or five months. Would that be one visit every three weeks or several days every three weeks? I'm a teacher and am very anxious to get back to work.

Oh, and to add to the "fun," I was also just diagnosed with HBP and diabetes.

Thanks for reading. I'm scared and uninformed and it's driving me nuts :-)

 

 

Frodolass,

I just found this web site a few days ago. Your situation is much like mine. I had a robotic total hysterectomy the end of July 2011 followed by 6 rounds of chemo and three sessions of internal radiation. I am a small school principal and worked through all but radiation due to my distance from treatment. You are in my thoughts- I hope treatment is going well.