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UPsc diagnosis ... Need help!

Daughters3
Posts: 7
Joined: Mar 2013

My prayers go out to each of you facing this horrible disease! My mother was recently diagnosed after a  d& c for a fibroid. She had a complete hysterectomy, lymph node removal & omentum removed. We were told stage 1, only a few cells "encapsulated" in the fibroid. Her biopsies all came back clear as well as the wash. Can this be? My Mom was happy to hear "no further treatment", but I'm very uneasy. Can you guys tell me where the top docs are for this type of cancer? Has anyone been observation only with blood work? I want to get her a second opinion and just don't know where to turn. There's no consistant info online & it mostly is outdated. Please share any opinions you might have. And a blessed & healthy Easter to all!!!

debrajo's picture
debrajo
Posts: 743
Joined: Sep 2011

I am not familar with USPS, I have UPSC.  It is possible not to need any more treatment, and some of the other ladies will be here to help soon, but for ME, I'd get a second opinion from a gyn/onc to be on the for sure side.  Happy Easter to you and your's also, Best, Debrajo

OhioK8's picture
OhioK8
Posts: 1
Joined: Apr 2013

I am so sorry you and your mom are going through this journey.  It is tough but you will get through it!  You don't mention the grade of your mom's cancer, only the stage.  It is important to know the grade and details like was it undifferentiated or well differentiated , because those 'details" make a difference in whether the cancer is slow growing or aggressive.  The omentum being removed seems odd to me - I have never heard of that being removed unless cancer was found there and then it wouldn't be Stage I.    I definitely agree with the prior answer that your mom should seek a second opinion from a gynocological oncologist, and ask a lot more questions.  I have been reading a lot of books and web sites and have found that it is pretty common for stage I grade I gyn cancer that has been removed to have only follow up exams and blood work.  My prayers are with you and your mom as you navigate this confusing new world. 

susangr
Posts: 62
Joined: Oct 2010

UPSC is a rarer form of uterine cancer treated a lot like ovarian cancer.It is grade 3. My docs at MD Anderson indicate that in this case the grade trumps the stage. It is very common to remove the omentum and at least 20+ lymph nodes as well as do pelvic washings to determine stage. Even one positive lymph node can change the stage from 1 to 3. It use to be thought that it depended on what percent of the tumor was made out of clear/ serous cells would determine the follow up treatment. Since this cancer makes up the majority of uterine cancer deaths women with any clear cell components should be treated aggressively. This means at a minimum surgery and chemo with some internal brachytherapy radiation. Some centers also treat with targeted pelvic radiation. I had them all. I would recommend MD Anderson or Sloan Kettering for second opinions. They hit it hard to start because if it recurs it is considered not curable. 2 years NED and counting. If it is going to recur it most likely will in first 3 years. Keep asking questions. This is a great spot for support.  The treatments are doable.   Take it a day at a time.   Sincerely Susan

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I agree with Susan's comments. You might also check nccn guidelines which show standard treatment recommendations. Check out nccn.com

Mary Ann

Daughters3
Posts: 7
Joined: Mar 2013

Thank you everyone for taking the time to respond. The biopsy results all came back "no malignancy". They took 12 lymph nodes in three areas and her omentum- as well as all female organs. There is really no info on the paperwork at all... No grade, no cells, etc. The obgyn did the female portion, the oncologist did the rest of the surgery. They came up with the "monitor every 6 months" conclusion. The original upsc diagnosis was obtained from her laparoscopic surgery to remove a "fibroid" that barely penetrated her lining. There were a few cells found encapsulated and the tumor was removed with a newer procedure that "scooped" the tumor rather than filing it. I'm told that's the reason no treatment needed. I also had her ob consult with a 2nd ongologist- who concurred. We live close to Roswell Park cancer institute. In my gut I feel we need a third opinion. Can anyone point me toward a doctor with true experience in this type of cancer? I'm not trying to be negative ! I am really the opposite always positive type of person. Just scared....

thank you all again for your time & advice! 

susangr
Posts: 62
Joined: Oct 2010

I go to Dr Levenbach at MD Anderson. He is experienced and answers any and all of your questions frankly and compassionately.  A 3 rd opinion may be worth the peace of mind.   

 

Keep in touch....so far it sounds like good news......something we always like to hear here. Sincerely Susan

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

A gynecological oncologist is the specialist you need. Many oncologists don't even know about upsc.

get copies of your reports

.

MA

sunflash's picture
sunflash
Posts: 150
Joined: Aug 2011

 I agree with Mary Ann in getting a third opinion via a gynecological oncologist. My doctor told me she would never recommend observation only after performing a hysterectomy and finding UPSC. It's too aggressive of a cancer. I'd definitely talk to a doctor who has treated this type of cancer.

Daughters3
Posts: 7
Joined: Mar 2013

I wanted to post an update on my Mom & thank all of you wonderful ladies who led me to get a 3rd opinion. I found a gyn oncologist at Roswell Park Cancer Institute that has dealt with this type of cancer & has done much research. He feels strongly about going forward with treatment. While I never want to see anyone go through chemo, etc. I feel a bit relieved that my mom will have a better chance at beating this horrible disease following treatment. She's a wreck- understandably so after 2 gyn oncologists told her no treatment! I'm just praying it won't be too hard on her & she will have good results in the end. Not sure I would have pushed so hard without the words of wisdom from many of you girls. Ty, Ty, Ty! I pray for you all often!

 

Ps- on a side note she is doing amazing after her surgery!! Healed quickly, never took pain meds, back walking on her treadmill! 

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