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

evertheoptimist said:

I am stage 4B (going through
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).

imede
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