CSN Login
Members Online: 10

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

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.

forida
Posts: 3
Joined: Feb 2013

Thank you all for your kind words and advice. The pathology lab estimates that they will have a report in 4 days. I'm requesting an appointment from MSK today. Is the best way to do this through their referral system or should I be researching specific doctors?

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 577
Joined: Mar 2013

Sorry Florida, I saw your questions after I posted.  You want a Gynecological Oncologist!!  I never thought I would have one of these but now I do!  I still can't wrap my head around it somedays, but I will talk to anyone anytime about this. 

I was diagnosed April 2012, 10 days after I buried my father.  2012 was not a good year for me or my family but I am BLESSED with fantastic friends and learned what FAITH is all about.  I finished my last chemo in December and am growing my hair, and more exciting, my EYELASHES back! 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 577
Joined: Mar 2013

Dear Florida,

While my UPSC was luckily caught early, stage 1A, and I had hoped that since it was early that I wouldn't have to have the chemo/radiation/chemo sandwich, I did.  Looking back and not knowing anything about cancer I am so happy I did!! 

While I was VERY fortunate to have mild side effects, my radiologist even said to me, "you don't understand, people don't do as well as you did", I know it is what I had to do to beat this evil, beast down. Yes, I did lose my hair and my friends and I all cried when it got shaved, and then I took a picture, bald, surrounded by bald men I work with. 

I can't wait to participate in the National Race to End Women's Cancer in DC this November and meet some of the sisters who have battled this disease like me. http://www.foundationforwomenscancer.org

 

"Never, ever, ever, ever, ever, ever, ever, give up."  - Winston Churchill

Good luck and God bless.

MTheresa
Posts: 6
Joined: Mar 2013

I've had one chemo and will have 2nd brachytherapy this week.  I was diagnosed Stage IA and have 2 more brachytherapy and 2 more chemo.  I had a very achy foot for 3 or 4 days about 4 days after chemo.  They gave me pain medication that took care of it.  I think I'm going to shave/clip my hair myself and not look at myself until I think I can handle it.  I'm not worrying about it, though I JUST finished growing all the color out of my hair when I got the diagnosis.  I have a pretty wig.  It's stuff we have to do so I guess we might as well do it, huh?  I'm being treated at the University of Iowa hospitals and they have been wonderful.

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

I, too, had just  finished growing the color out of my hair when I was diagnosed.  I decided that at least it allowed me to compare per and post chemo hair.  It was exactly the same before and after unlike the experience of so many of you.  However, I am currently visiting family in SE ohio and my hair becomes more wavy and actually curly in the summer months here.

Therev21
Posts: 4
Joined: Feb 2013

Just wanted to share that I got my PET results today and it shows no metastisis!  Surgery scheduled for 2/19---I am believing this is a very good sign that we have caught it early.

Rebecca

GabbyMaude's picture
GabbyMaude
Posts: 4
Joined: Dec 2009

Hi friend - I was diagnosed with stage IV UPSC 3.5 years ago.  I have had 18 months of chemo and 45 radiation treatments.  I am currently in a clinical trial as I have a thrid recurrence.  The good news is that I am doing okay, still working full time and able to handle the treatment.  It's so important to stay as positive as possible, and to live each day to the fullest.  Friends, activities, artwork, church - these are all things that have helped me.  I talk to my cancer (your lease is up!  I want to evict you!!!)  I also keep a blog to communicate with friends and relatives not close by - my blog is www.Apopsal.blogspot.com.  Let me know if you need any other thought or suggestions.  My thoughts and meditations are with you!!

.  

elpasorudy's picture
elpasorudy
Posts: 81
Joined: Jan 2013

Good luck with the clinical trial. Where can I find information about it? - Rudy

nancynutri's picture
nancynutri
Posts: 1
Joined: May 2013

Your comments are so encouraging. I just got my dianosis of stage 2 UPSC yesterday but didn't have any idea what it was until I went online to look it up. I am shell-shocked. My doc had told me when he first examined me that he could probably just remove my uterus and I would have a great life thereafter. That was before the biopsy and PET scan. This is a very serious and aggressive cancer. I am still in shock. I am 67 and My husband, friends and family have been very supportive. My faith is strong and I will continue to have faith that everything will turn out OK in the end.

nohair
Posts: 1
Joined: May 2013

When I was first diagnosed April 3, I went to the internet and couldn't find a thing on this.  My story is different, I had complete hysterectomy 1987, Thought I would skip this part...guess not. I am 65, have trusted Christ for 30 years, but this is a spiritual bootcamp I hadn't counted on.  I finished my 2 chemo (out of 6) I hope I can finish....the week after chemo makes me long for heaven!

EmilyL
Posts: 9
Joined: Aug 2013

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?  

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

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.

EmilyL
Posts: 9
Joined: Aug 2013

Thanks all, for encouragement & practical tips.  Just finished my first round & next week is my week off...yay!  Started "shedding" after my 3rd treatment.  The scalp burn was driving me nuts, & had trouble sleeping so shaved it.  I feel so much better..can put lotion on to ease scalp burn.  Still adjusting to the hat/wig thing, but I'll get there. fatigue is my biggest frustration since I was so active before this visitor came to live in my body.  My Dr is suggesting 4 rounds of Taxol/Carbo, then maybe stop. From you experienced warriors, what would you do? 

Tentoumushi
Posts: 3
Joined: Mar 2013

Hello everyone.  I went through menopause early (40).  Every thing was going fine until 6/2004 when I started bleeding.    After 12 years I knew this was bad, set up gyn appointment for 7/2004.  She did a uterine biopsy ( which by the way, hurt like hell!). The pathology report came back in one week, the big "C", bummer.  Met with oncologist 11/2 weeks later, hysterectomy 8/28/04.  The pathology report from surgery said " endometreoid carcinoma AND high grade serous papillary carcinoma".  Had a horrible time with incision not healing ( didn't completely close for 4 months). End of Sept I started 3 once a week internal radiation treatments.  The onc nor his nurse could tell me exactly what to expect boy was that an eye opening experience!  Then I started chemo.  Onc had originally verbally said 8 monthly treatments, 2 weeks before I started the " chemo councilor" gave me papers that explained what drugs I would be given.  This sheet said 6 treatments.  After only 4 treatments onc stopped them without any explanation.  2 weeks after my 4 month checkup the onc called " I am soooo sorry, the cancer has returned......." The cancer was in my vagina this time.   Not a happy camper!  I endured 25 external radiation treatments, even though I received 2nd degree burns inside and out.  The following week I started  3 more internal radiations.  They  REALLY should have done the internal first!  This procedure was uncomfortable and embarrassing the first time but now with the radiation burns it was almost unbearable.  My last treatment was in 2006 but I am still seeing the onc because of the permanent damage caused by the radiation.  The onc had to switch to a pediatric speculum a couple of years ago and last year she couldn't use one at all.  Sex is out of the question now and I have severe problems with my bowels.  I wish my journey had been a lot smoother.  The onc still does a pap ( without the speculum).  I told her I didn't expect to have cancer come back there,  it has become a burn't pot roast!  If I were a cancer cell I'd find a nice juicy T- bone somewhere else on my body!

Lesa Plano's picture
Lesa Plano
Posts: 12
Joined: Dec 2012

I am so happy to see your post but so sorry for the horrible time you have had.  Know that your ordeal has given me hope to live 8 years and not let this beast of a cnacer win.  We are here to kick its ugly self out!!  best wishes for you always. 

fanniemay
Posts: 52
Joined: Nov 2011

Hi, Glad you are 8 years out.  Sorry for your burning.  I had internal radiaiton and also had some burning.  I would be interested to know what stage you were when they originally diagnosed you?  Thank you..God Bless

Maggie_mac
Posts: 13
Joined: Mar 2012

It's been a while since I logged-on, but I would really like to know if someone has gone before me on this.  I had surgery in November 2011 with stage 3 UPSC.  Post surgical CA-125 was 814.  after 6 rounds of chemo it came all the way down to 60.  In May 2012 I started on megestrol 160 mg/day and by late December it was 49, up from 30 in October.  By late January I felt something wasn't right.  I had some blood work done and my CA 125 was back to 365 so I started another series of chemo...same drugs, taxol and carboplatin.  I've completed 5 treatments and my CA 125 after 4 has gone down to about 75.  One more to go.

This chemo has been different.  More fatigue with low red counts.  Has anyone gone from remission back to chemo?  Then what?  I'd really appreciate hearing from you.

God bless you all.

 

 

Honordon's picture
Honordon
Posts: 49
Joined: Jun 2011

I was  diagnoised in 2011 with  this  cancer  but in  the  cervic stage 4  then  ovarian  cancer  stage  3   , been  going well  and was stable  and  undercontrol  but  about  8  weeks ago  started  getting  back  pain  ,  seems  its  wrapped a  tumour around  my  Urethea am having a  stint in  tomorrow and was started on  carbo / Lipsomal Doxorubicin  ( its pink chemo )  will have  4  rounds   once amonth   then  they will  check  me  and  see  how  we  go  my  ca  125  numbers  are  much  lower  than yours   they had gone to  188 but now are  165  ..... Fight  hard and stay  strong  Maggie  this  cancer needs  to  evacuate  ............big  hugs Donna :)

KETrey5
Posts: 2
Joined: Jun 2013

Cry

Hello all, I am Keaton and my grandma (who is my best friend) was diagnosed with (they never have us a stage) USunderstands stand the chances of her surving and getting to see me be married are slim, but I want to know what you guys have to say. We just saw her onocologist wed. And she told us that the taxol/Carboplatin chemo is NOT stopping the cancer from spreading. she said that her cancer is in curable and signed us up for a phase I clinical trial. She will be taking the TAS-102 chemo instead. Do any of you know anymore options we may have? She is not weak. She can walk and laugh and work without any problems, and when she does put on her beautiful wig & makeup you wouldn't even me able to tell she has cancer. I am at a loss. I love her so much and this has broken my heart. She is only 62 and so full of life. What do we do now? 

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

I am sorry that you and your Grandma are going through this.  I do not know anything about the clinical trial she will be entering. I hope. She does well with it and it shrinks her tumors.  Try to find some joy in each day and make some wonderful memories.  Come back with any questions you may have.  You might want to start a new post, as this loooong thread can be hard to find new posts sometimes.  We will be here to support you and you Grandma.  In peace and caring.

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Don't give up, Keaton.  Incurable is not the same as untreatable.  Hopefully your grandma has many years left.

KETrey5
Posts: 2
Joined: Jun 2013

Thank you both for replying. She is very strong and even the doctor said she has a very strong body. I hope maybe a miracle can happen, as the CT scan showed her pancreas, kidneys, gallbladder, & liver were all unremarkablShe they said the ct scan showed that her lymph nodes were enlarged. Is there still any hope? Thanks to all. 

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

I too was told in 1/09 that my cancer was not curable,but treatable.  My lymph nodes have been enlarged and then the chemo stinks them.  As I said earlier keep positive thoughts.  Take one day at a time.

Golov003@gmail.com
Posts: 12
Joined: Jul 2013

my mom is 62 years old and was recently diagnosed with this terrible cancer. Her onc apt is for today. The ct showed a carcinomatosis with omental involvement but ln, liver spleen kidneys pancreas seem to be ok. I'm so scared about what the oncologist will say. Any advice will be appreciated

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Will you be going with her?  Someone needs to take good notes.  Emotions make it hard to take in and remember everything that is said.    After that, come back here with your info and we'll help you with questions, support, etc.  We've all been there and we understand what you are going through.  

Golov003@gmail.com
Posts: 12
Joined: Jul 2013

My sister who is an md will be going today 

vbpeterson13
Posts: 6
Joined: Aug 2013

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

ael111
Posts: 4
Joined: Sep 2013

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
Posts: 29
Joined: Sep 2013

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 :-)

 

 

EmilyL
Posts: 9
Joined: Aug 2013

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!

Goldheart
Posts: 36
Joined: Sep 2013

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. 

EmilyL
Posts: 9
Joined: Aug 2013

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
Posts: 4
Joined: Mar 2013

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 

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

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's picture
Ro10
Posts: 1482
Joined: Jan 2009

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.

psk
Posts: 4
Joined: Mar 2013

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???

psk
Posts: 4
Joined: Mar 2013

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???

sleem
Posts: 92
Joined: Feb 2010

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

northwestalaska
Posts: 8
Joined: Nov 2013

I just found this site last night. Your situation is similar to mine- never had an elevated CA-125, even with the tumor. I am now two years four months out of surgery. In February, it will be two years out of chemo and radiation. NED at this time, but it's a long journey with many flights back and forth to access doctors. I am inspired to read about women who are doing well and continuing the flight under all conditions.

northwestalaska
Posts: 8
Joined: Nov 2013

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.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network