Newly diagnosed UPSC

lauresfamily
lauresfamily Member Posts: 1
edited March 2014 in Uterine/Endometrial Cancer #1
Hello Amazing Ladies,

I have been skulking around this discussion board for the past month being totally awed and inspired by your journeys. My mother-in-law, aged 69 and otherwise in perfect health was diagnosed with UPSC grade 3 on May 10th after a biopsy done due to minimal bleeding that had persisted over several months. She had laproscopic total hysterectomy with pelvic lymph node dissection on May 20th. We were at the Cancer Center this past Fri.June 21st and received the surgical staging report. She is Stage 3 grade 3. Her CA125 is 92. Seven pelvic lymph nodes sampled negative(no para-aortic sampled), omentum negative, pelvic washings positve, spread to outer half of serosal surface, small amount of cells on the surface of the fallopian tubes. She will be starting chemo next Mon.June 21st with a regime of 3 treatments of Carbo/Taxol 4 weeks apart followed by pelvic radiation 5 days/wk for 4 weeks. The oncologist did indicate that if her CA125 has not come down enough after the second treatment then more than 3 treatments will be needed before starting radiation. We are all very sad...and scared. I am certainly open to any comments, advice or questions from this wonderful group. Your knowledge is invaluable and very much appreciated. One thing in particular that I am wondering about is the tissue assay with functional profiling. Is this something that we should be pushing for or perhaps have done ourselves if they won't? Or is it too late? There has been no mention of it. I have no idea how or where someone would have that done. She lives in British Columbia, Canada which is close enough to Seattle if it is something that is not available here. Universal healthcare is a wonderful thing but there are limitations. It has been inspiring meeting you all through your stories and I am grateful for your gift of sharing...it has made our road a bit easier. Anne from Canada

Comments

  • Cecile Louise
    Cecile Louise Member Posts: 133
    #2
    Anne
    You're right, this board is just chock-full of amazing, wonderful women. I really don't have any advice concerning tissue assay, as I hadn't even heard about it until about 2 years after my surgery - but I know there are lots of people on this board that do. I really just wanted to speak up and welcome you here...though I'm sorry for the reason you've found us. Please know that you can come here anytime - whether just to vent or rant or seek information - you will be warmly received.

    In faith and hope,
    Cecile
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #3
    Cecile Louise said:

    Anne
    You're right, this board is just chock-full of amazing, wonderful women. I really don't have any advice concerning tissue assay, as I hadn't even heard about it until about 2 years after my surgery - but I know there are lots of people on this board that do. I really just wanted to speak up and welcome you here...though I'm sorry for the reason you've found us. Please know that you can come here anytime - whether just to vent or rant or seek information - you will be warmly received.

    In faith and hope,
    Cecile

    Anne
    I have UPSC (I think serous is grade 3) and was initially staged 3a - and finished my treatment Feb 2010 and then recurrence confirmed last month- don't know what stage this makes me. UPSC is sneaky and persistent. I'm on wait and watch protocol now - just had blood work and waiting for results.

    Definitely get the functional profile - tissue assay. This will confirm the best chemo. My doc ordered it and I did not realize until hearing here that not all docs do.

    I fared well with chemo - did not have radiation. I wish you and your mother the best - this site is a great resource. You might want to read some of the early threads when many of us with UPSC were going through treatment. Another recommendation I have is to get a port!! I still have mine and will keep it for now. UPSC is notorious for recurrence.

    Sending positive thoughts and prayers, Mary Ann
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #4
    daisy366 said:

    Anne
    I have UPSC (I think serous is grade 3) and was initially staged 3a - and finished my treatment Feb 2010 and then recurrence confirmed last month- don't know what stage this makes me. UPSC is sneaky and persistent. I'm on wait and watch protocol now - just had blood work and waiting for results.

    Definitely get the functional profile - tissue assay. This will confirm the best chemo. My doc ordered it and I did not realize until hearing here that not all docs do.

    I fared well with chemo - did not have radiation. I wish you and your mother the best - this site is a great resource. You might want to read some of the early threads when many of us with UPSC were going through treatment. Another recommendation I have is to get a port!! I still have mine and will keep it for now. UPSC is notorious for recurrence.

    Sending positive thoughts and prayers, Mary Ann

    hi mary ann


    i just read your post to anne and wondered what chemo you were given since you had the tissue assay, which i did not. we asked about it after the surgery, and was told the surgeon didn't do it because insurance didn't usually pay for it! if i knew then what i know now, i would have asked for it and paid for it out- of -pocket if need be. so, got the standard taxol/carbo chemo that most of us with upsc have gotten. my surgeon said that if there is a recurrence and it's in a place from which enough tissue can be gotten, then he does it. sigh....treatment, at least here in california, is so insurance driven.....

    i too did not have radiation. was radiation recommended to you, and you declined, or was it not recommended, and if not, why not? i have posted elsewhere here that 6 different doctors had 6 different opinions about whether i should have radiation, and if so, where and how much. i figured with this much controversy and uncertainty, there was obviously no one right answer, so decided against it. the tumor board at the hospital where i had the surgery recommended no radiation, and apparently convinced my chemo doctor, who had originally recommended i have a moderate amount--so i had some support. even my surgeon, who had recommended the minimum brachey radiation, felt ok about my decision.

    keep us informed, mary ann, about the results of your blood work. thinking of you, and wishing the very best for you.

    sisterhood,
    maggie
    ps: i asked my surgeon to have my port removed after i was finished with chemo, and he refused!!! he said it was insurance (meaning, i'd have it if i needed it). i said i'd bring it up again in a year, which he agreed to. initially, he said 3 years. i do understand why he doesn't want to remove it yet, and it doesn't physically bother me, just don't much like having it. another doctor told me how superstitious my surgeon is: that he believes he keeps his patients safe from recurrence by having them keep their ports in for years!!!! hey, if that works, i'll never take it out....






    sending you
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #5
    maggie_wilson said:

    hi mary ann


    i just read your post to anne and wondered what chemo you were given since you had the tissue assay, which i did not. we asked about it after the surgery, and was told the surgeon didn't do it because insurance didn't usually pay for it! if i knew then what i know now, i would have asked for it and paid for it out- of -pocket if need be. so, got the standard taxol/carbo chemo that most of us with upsc have gotten. my surgeon said that if there is a recurrence and it's in a place from which enough tissue can be gotten, then he does it. sigh....treatment, at least here in california, is so insurance driven.....

    i too did not have radiation. was radiation recommended to you, and you declined, or was it not recommended, and if not, why not? i have posted elsewhere here that 6 different doctors had 6 different opinions about whether i should have radiation, and if so, where and how much. i figured with this much controversy and uncertainty, there was obviously no one right answer, so decided against it. the tumor board at the hospital where i had the surgery recommended no radiation, and apparently convinced my chemo doctor, who had originally recommended i have a moderate amount--so i had some support. even my surgeon, who had recommended the minimum brachey radiation, felt ok about my decision.

    keep us informed, mary ann, about the results of your blood work. thinking of you, and wishing the very best for you.

    sisterhood,
    maggie
    ps: i asked my surgeon to have my port removed after i was finished with chemo, and he refused!!! he said it was insurance (meaning, i'd have it if i needed it). i said i'd bring it up again in a year, which he agreed to. initially, he said 3 years. i do understand why he doesn't want to remove it yet, and it doesn't physically bother me, just don't much like having it. another doctor told me how superstitious my surgeon is: that he believes he keeps his patients safe from recurrence by having them keep their ports in for years!!!! hey, if that works, i'll never take it out....






    sending you

    Same Port Issue
    Hi Maggie:

    I just saw your post about your Port. I still have my Port in. Initially I was to get it out shortly after chemo. Then the doctor started putting if off. Then he said it was easier to remove than to put in it so he wanted it in for a little longer. That doctor retired. My new doctor at the time said to let it in. I ask again six months later and said basically the same as your doctor that he was superstitious about removing it. I no longer have that doctor and I haven't brought it up to my new doctor yet. At this point, I am no longer dwelling on it. I just go monthly and have it flushed out.

    Guess what, in October it will be five years that I have had it in!

    Kathy
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #6
    Kaleena said:

    Same Port Issue
    Hi Maggie:

    I just saw your post about your Port. I still have my Port in. Initially I was to get it out shortly after chemo. Then the doctor started putting if off. Then he said it was easier to remove than to put in it so he wanted it in for a little longer. That doctor retired. My new doctor at the time said to let it in. I ask again six months later and said basically the same as your doctor that he was superstitious about removing it. I no longer have that doctor and I haven't brought it up to my new doctor yet. At this point, I am no longer dwelling on it. I just go monthly and have it flushed out.

    Guess what, in October it will be five years that I have had it in!

    Kathy

    Maggie and Kaleena
    I am superstitious!!! and want to keep my port for the same reason as your doc, Maggie. What the heck - with UPSC (I'm now calling it "Chester") which is so prone to returning, I think it is prudent to keep the port.

    I just noticed my previous post said I completed chemo in 2010 - it was Feb 2009. Anyway, I also had the standard carbo/taxol. The assay showed that was the best - so maybe that's why docs don't worry too much about the assay because most of us get this combination.

    Re: radiation. My doc did not recommend. It's interesting because I actually lost my first gyn-onc when he moved out of the area. He told me he would recommend radiation. But I was transferred to the head of the practice who is very respected in this field and he said "the science" doesn't warrant radiation for me". Don't know exactly what would have made him say yes - but I figured he knows what he is doing and so far I think that was the best thing. I read stories of bad recurrence with people who had all the aggressive treatment with the thinking that they are killing every last cancer cell only to have it come back viciously NO MATTER THE STAGE!!!!! Even stage 1!!

    So my crap shoot theory holds. Maybe it's all "luck" or intuition, or a flip of the coin. Don't know!!

    My doc is clearly thinking of do the least harmful treatment for me - allowing my body to heal and me to tell him if something is different. I think this approach makes sense. He wants me to "forget" about Chester and enjoy life. So I'm doing my best with this.

    Best wishes to you and all. Sisterhood!! Mary Ann
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #7
    daisy366 said:

    Maggie and Kaleena
    I am superstitious!!! and want to keep my port for the same reason as your doc, Maggie. What the heck - with UPSC (I'm now calling it "Chester") which is so prone to returning, I think it is prudent to keep the port.

    I just noticed my previous post said I completed chemo in 2010 - it was Feb 2009. Anyway, I also had the standard carbo/taxol. The assay showed that was the best - so maybe that's why docs don't worry too much about the assay because most of us get this combination.

    Re: radiation. My doc did not recommend. It's interesting because I actually lost my first gyn-onc when he moved out of the area. He told me he would recommend radiation. But I was transferred to the head of the practice who is very respected in this field and he said "the science" doesn't warrant radiation for me". Don't know exactly what would have made him say yes - but I figured he knows what he is doing and so far I think that was the best thing. I read stories of bad recurrence with people who had all the aggressive treatment with the thinking that they are killing every last cancer cell only to have it come back viciously NO MATTER THE STAGE!!!!! Even stage 1!!

    So my crap shoot theory holds. Maybe it's all "luck" or intuition, or a flip of the coin. Don't know!!

    My doc is clearly thinking of do the least harmful treatment for me - allowing my body to heal and me to tell him if something is different. I think this approach makes sense. He wants me to "forget" about Chester and enjoy life. So I'm doing my best with this.

    Best wishes to you and all. Sisterhood!! Mary Ann

    thanx for responding to questions, mary ann

    that was heartening to hear that you had the same chemo as i, and most of us with upsc, even with your assay. maybe you're right; that this combo turns out to be the best in any case. so interesting that your doctor did not recommend radiation, and mine only minimal, which i eventually chose not to do. i wonder if some doctors think that if you have stage 3 or 4, radiation's benefits do not outweigh the liabilities. that was certainly my gyn-onc's take. he actually wrote a paper many years ago on upsc, which i have yet to read, but friends have, and say i don't need to bother, so i don't.

    i, too, have noticed that many folks who've had radiation, the whole works, seem to get recurrences, whatever stage, so maybe it does help some, but certainly not all. i'm quite glad i skipped it. the tumor board at my hospital did not recommend it, and i need to remember to ask why they made that recommendation. in any case, changed my chemo doctor's mind, so that was good. had support for my decision.

    yes, the crap shoot theory definitely holds; we just don't know what's going to work and what is not. i also go with do the least harm idea. now i'm going to try my green tea with some cinnamon--for the first time, can't make it taste worse, that's for sure.

    thanx kathy for your input re: your port. i've gotten used to it, pretty much. my surgeon really did a beautiful job: can't really see it all that well, looks good and feels fine, so guess i'll leave it in awhile.

    sisterhood,
    maggie
  • gdpawel
    gdpawel Member Posts: 523 Member
    #8
    Functional Profiling
    Anne from Canada

    This lab does not perform "functional profiling." However, it is a lab that does a singular-endpoint cell-death assay. That is very important. Cell-death vs cell-growth assays. And it is has a Canandian laboratory.

    CLINICAL LABORATORY
    DiaTech Oncology
    (Campus McGill University)
    740 Dr. Penfield Ave Suite 4200
    Montreal, QC Canada
    H3A 1A4
    866 556 5356 Toll Free
    514 398 5174 Direct
    514-398-4939 Fax

    Functional profiling takes the advantage of looking at the entire cell to measure the interaction of the entire genome (not just one pathway or a couple of pathways). There are many pathways to altered cellular (forest) function (hence all the different "trees" which correlate in different situations). In functional profiling, the whole cell measures what happens at the end (the effects on the forest), rather than the status of the individual trees (genes or proteins).

    Because of this, cell-based, cell-death assays are upgraded to measure drug "resistance" and drug "sensitivity" for anti-tumor AND anti-angiogenic activity. Most time, "targeted" drugs need to be used with conventional cytotoxic chemotherapy. Sometimes it can find a combination of "targeted" drugs tha may work.

    The labs accomplish this by testing specimens using at least three of five available cell-death enpoints (not just one). A combination of a morphologic (structure) endpoint and two or more metabolic (cell metabolism) endpoints (whole cell profiling). Interpretation is highly labor-intensive, requiring an average of three hours of physician/lab work. Analysis is not treated lightly.

    Both U.S. "functional profiling" assay labs cost $3,500. However, in some cases, with some 20-30 drugs being tested (the "drugs" are expensive) it may range $5,000 (depending on the degree of analysis requested). For instance, they test additional drug concentrations for the "targeted" agents, some of which have very steep dose response relationships.

    Only a tumor specimen goes to Southern California (not you) in a polypropylene transport bottle secured from the lab. The laboratory of your choice should be given a couple of days notice in order to ensure that specimen collection and transportation materials can be FedExed to the medical center in advance of the procedure.

    Two California Functional Profiling labs:

    http://www.rationaltherapeutics.com/default.aspx
    http://weisenthalcancer.com/

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