UPsc diagnosis ... Need help!

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 said:

UPSC

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

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

Mary Ann

Daughters3 said:

Thank you

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! 

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 said:

Daughters3

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

get copies of your reports

.

MA

 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.