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waiting for final diagnosis on UPSC--preliminary diagnosis stage IVB

lmede64
Posts: 32
Joined: Dec 2009

My sister, 64, was recently given a "drive-by" diagnosis of UPSC stage IVB by the nurse of the gyn/onc who did her LAVH. This came as quite a shock not only because of the cavalier delivery, again, by his nurse and over the phone, but also because before the operation the doctor thought it might be early stage as she had no prior sypmtoms. Additionally, they refused to give her an appointment until 4 weeks had passed. With her faith totally shaken with this supposedly good doctor, she made arrangements to go to MD Anderson for a second (in my view first) opinion. Despite the fact that they were understaffed due to the SGO, Society of Gynecologial Oncology, conference in Orlando, Dr. Sood made her feel that she was his only patient. She had a lovely patient advocate and felt she was in good hands. My sister and brother-in-law were there and attended appointments and information sessions with her. Today her case will be presented to the tumor board, and she should hear from the doctor next Monday or Tuesday.

She is normally a strong and up-beat person, but this preliminary diagnosis, which she calls her death sentence, has her scared. We are all scared, but we are looking forward to feeling hopeful. I hope she will regain some inner strength as soon as she gets the formal diagnosis and a game plan. In the meanwhile, if there are any UPSC stage IV women out there, can you let me know? I know that MDA will have answers to her questions, but as former breast cancer patient, I highly value the input of those on the battlefield.

evertheoptimist
Posts: 140
Joined: Jan 2011

I am stage 4B (going through chemo now after surgery in December). Even if your sister's condition indeed is 4G, it's NOT a death sentence by any means. Please check my previous posts and replies and other posts in the same threads made by others. If you just google it, the mortality statistics of UPSC 4B will be truly awful, but that statistics has a LOT of holes. IN reality, I believe the odds are much better than that. Again, check the old discussion on this as I suggested above. I for one intend to be around for decades, and I believe this optimism is based on reason and rational thinking, not delusion or groundless wishful thinking.

MD Anderson doctors have more experience with UPSC than most others. They also use more integrative approach than others. Your sister is in good hands.

based on what I learned so far, final staging is not done until a surgery is performed.

(by the way, the first thing your sister needs to change is her thinking that this is a death sentence: no treatment can work to its best potential if the patient has this pre conception).

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

sister,

i was diagnosed with upsc stage 4 two years ago at the age of 67, now i'm 69. i also thought i caught it early because i immediately sought help as soon as i had any symptoms. it took 3 months to diagnose! then next week was in surgery. and about 2 months later chemo. i had a nice, long remission for this cancer--almost a year and a half--the longer the remissions, the longer the survival. i also thought it was a death sentence when i first read about upsc, but it's all based on old data; there just isn't much information about our rare disease.

i'm in chemo now for my first recurrence, and hoping, as is expected, that i will then have another long remission. who knows of course? but there are more drugs out there, other therapies, etc., to explore--e.g., hormonal therapy, iv vitamin c which i am going to try after chemo, vaccines down the pike, parp inhibitors (which i don't really know about, but my doctor says will be great when approved). i don't think i'm in any imminent danger of death any time soon. the disease tends to becomes chronic-- recurrence, treatment, remission, recurrence, treatment, remission--can go on indefinitely, for years.

hope this eases your sister's mind some. i know i was anxiety -ridden when i first heard, and thought i had less than a year to live, not true!!!!

gradually i learned that i have years left to live; also lots of reasons to live, work that i love, family including new grandchildren that i adore and who are close by, many places to explore, lots of good friends--a good life. i can tell you this, i'm not going easy into that good night, and neither should your sister. i'll try everything first. once your sister comes out of shock, she'll be less scared, and be more proactive, do a little homework herself and read the posts on this site probably reading posts on this site is the very best things she can do.

sisterhood,
maggie

evertheoptimist
Posts: 140
Joined: Jan 2011

crazy as it may sound, I am negotiating a job offer right now. I am trying to put a start date on the table that will let me finish my chemo and then start fresh (April). It's an intense job with a lot of business trips. I think this position is tailor made for me.

Does it sound like someone who just got a death sentence?

Tell you sister that she potentially has many years of fulfilling life left to live.

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