Do I Ask for Extra Tests at Staging?

Pat51
Pat51 Member Posts: 130
in Uterine/Endometrial Cancer #1
Hi,

I am newly diagnosed with UPSC. My surgery is tomorrow morning. They are taking my uterus, fallopian tubes, ovaries, cervix, abdominal lymph nodes, lymph nodes near the aorta, upper abdominal nodes(?), omentum, & appendix, as far as I know. I have been told that surgical staging will be done and available early next week. Should I be asking to have any other testing done on the tumor? I asked for HER2 expression testing and was told that it is for breast cancer only. Since I do not know what to ask for, if anything, I could use some help. I asked to save some of the tumor for future testing, but was told that they would not unless I have a specific lab that I want it sent to immediately, which I do not. Perhaps I am trying to get too much information. However, I wanted to go into this fight armed with as much information as possible to provide the best possible outcome. I am currently looking for a gynecological oncologist...none in my area. Again, do I need to ask for anything extra to be tested on the tumor? I am hoping that those on this site with more experience with this disease will have some suggestions or let me know what they think.

Pat

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    HER2 testing IS valuable for UPSC
    Because UPSC is more often "HER2 positive" than negative, HER2 testing is VERY valuable a test for our rare cancer and will let you know whether Herceptin is something that would work for you. In addition to HER2 testing, you should also ask for Estrogen Receptor and Progresterone Receptor tissue assays. That way you will know the likelihood of whether megace, tamoxifen and pther hormone-related therapies would work for you.

    Best wishes for you and your surgery tomorrow. As soon as you can (like the day after surgery) you want to get up and walk, with someone strong to lean on, so that your insides start waking up. And I must add that I wish I wouldn't have eaten any solids until after I had bowel function because the food in my system felt HORRIBLE when my bowels wouldn't work. So even though they may bring you food after your surgery, go easy if you eat at all, at least until your insides wake back up. (((Pat))). The surgery is tough but each day you will feel a little better, so hang in there.
  • faith316
    faith316 Member Posts: 25
    #3
    lindaprocopio said:

    HER2 testing IS valuable for UPSC
    Because UPSC is more often "HER2 positive" than negative, HER2 testing is VERY valuable a test for our rare cancer and will let you know whether Herceptin is something that would work for you. In addition to HER2 testing, you should also ask for Estrogen Receptor and Progresterone Receptor tissue assays. That way you will know the likelihood of whether megace, tamoxifen and pther hormone-related therapies would work for you.

    Best wishes for you and your surgery tomorrow. As soon as you can (like the day after surgery) you want to get up and walk, with someone strong to lean on, so that your insides start waking up. And I must add that I wish I wouldn't have eaten any solids until after I had bowel function because the food in my system felt HORRIBLE when my bowels wouldn't work. So even though they may bring you food after your surgery, go easy if you eat at all, at least until your insides wake back up. (((Pat))). The surgery is tough but each day you will feel a little better, so hang in there.

    Testing
    Perhaps you could consider requesting your tissue samples be send to Caris Life Sciences in Phoenix Arizona. A sample of my tissue was sent there by my gyn-onc 1-1/2 years after my surgery to explore additional treatment options. They have a website that can give you additional information about their TargetNow service whose role is to identify biomarkers and therapies associated with clinical benefit or lack of clinical benefit for cancer patients. I would encourage you to find a gyn-onc to consult with as soon as possible.

    I pray you find a peaceful place tonight, tomorrow and in the days to come.
  • Pat51
    Pat51 Member Posts: 130
    #4
    lindaprocopio said:

    HER2 testing IS valuable for UPSC
    Because UPSC is more often "HER2 positive" than negative, HER2 testing is VERY valuable a test for our rare cancer and will let you know whether Herceptin is something that would work for you. In addition to HER2 testing, you should also ask for Estrogen Receptor and Progresterone Receptor tissue assays. That way you will know the likelihood of whether megace, tamoxifen and pther hormone-related therapies would work for you.

    Best wishes for you and your surgery tomorrow. As soon as you can (like the day after surgery) you want to get up and walk, with someone strong to lean on, so that your insides start waking up. And I must add that I wish I wouldn't have eaten any solids until after I had bowel function because the food in my system felt HORRIBLE when my bowels wouldn't work. So even though they may bring you food after your surgery, go easy if you eat at all, at least until your insides wake back up. (((Pat))). The surgery is tough but each day you will feel a little better, so hang in there.

    Linda
    Thanks for the advice. The nurse told me that I had to pass some tests before they would release me on Saturday.....one of them was to eat solid food and keep it down!! I have never had any other surgery...ever, so I don't really know what to expect. I will definately ask for the tests you suggested.

    Thanks,
    Pat
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #5
    Pat51 said:

    Linda
    Thanks for the advice. The nurse told me that I had to pass some tests before they would release me on Saturday.....one of them was to eat solid food and keep it down!! I have never had any other surgery...ever, so I don't really know what to expect. I will definately ask for the tests you suggested.

    Thanks,
    Pat

    (((Pat)))
    Pat, I pray that your surgery goes well and you have a quick recovery. Like Linda said, make sure you get up and walk around as soon as you can. If you can, try to wean off the pain medication too. Just take it slow and easy and you should be fine. Also, if you are really nervous, sometimes they can give you something to ease your anxiety while you are waiting to go to surgery. I'll be waiting to read your posts.

    Hugs

    Kathy
  • Pat51
    Pat51 Member Posts: 130
    #6
    faith316 said:

    Testing
    Perhaps you could consider requesting your tissue samples be send to Caris Life Sciences in Phoenix Arizona. A sample of my tissue was sent there by my gyn-onc 1-1/2 years after my surgery to explore additional treatment options. They have a website that can give you additional information about their TargetNow service whose role is to identify biomarkers and therapies associated with clinical benefit or lack of clinical benefit for cancer patients. I would encourage you to find a gyn-onc to consult with as soon as possible.

    I pray you find a peaceful place tonight, tomorrow and in the days to come.

    Testing
    I will look into Caris Life Sciences. It sounds like a really good idea.

    Thanks,
    Pat
  • Pat51
    Pat51 Member Posts: 130
    #7
    Kaleena said:

    (((Pat)))
    Pat, I pray that your surgery goes well and you have a quick recovery. Like Linda said, make sure you get up and walk around as soon as you can. If you can, try to wean off the pain medication too. Just take it slow and easy and you should be fine. Also, if you are really nervous, sometimes they can give you something to ease your anxiety while you are waiting to go to surgery. I'll be waiting to read your posts.

    Hugs

    Kathy

    Kalenna
    Thanks for the well wishes. I will post how I did after surgery. Somehow I think that this will probably be the easiest part of this cancer journey.

    Pat
  • upsofloating
    upsofloating Member Posts: 466 Member
    #8
    Pat51 said:

    Kalenna
    Thanks for the well wishes. I will post how I did after surgery. Somehow I think that this will probably be the easiest part of this cancer journey.

    Pat

    Hope all goes well tomorrow,
    Hope all goes well tomorrow, Pat, and your GI tract bounces right back so you can get home and into recovery mode.
    I'll be thinking positive thoughts for you!
    Annie
  • nancygt
    nancygt Member Posts: 86
    #9
    Test test test
    Linda P gave you great advice on what to test for and you should demand it- such nonsense that HER2 is not important information beyond breast cancer. Also once tissues are frozen or embedded in paraffin, you may be limited in what they can test for. And absolutely make sure they do tissue assays as you can find tons of posts on here about how valuable they can be in choosing appropriate chemo.
    Good luck with your surgery.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #10
    nancygt said:

    Test test test
    Linda P gave you great advice on what to test for and you should demand it- such nonsense that HER2 is not important information beyond breast cancer. Also once tissues are frozen or embedded in paraffin, you may be limited in what they can test for. And absolutely make sure they do tissue assays as you can find tons of posts on here about how valuable they can be in choosing appropriate chemo.
    Good luck with your surgery.

    yes to functional assay
    Pat, make sure that the tissue is sampled for chemo sensitivity. This is save lots of problems later on when deciding treatment.

    Best wishes, another UPSC patient, Mary Ann

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