Newly diagnosed with clear cell uterine cancer

marks1k
marks1k Member Posts: 4
in Uterine/Endometrial Cancer #1

Hi,

My sister was just diagnosed with clear cell uterine cancer. She just got the biopsy results yesterday. She will be meeting with two oncologists this week. Can anyone help with a list of questions to ask the oncologist? She is totally overwhelmed and needs some help right now.

(I am her brother, I also have a very rare, aggressive cancer (as well as prostate cancer), and had a list of questions when I was first diagnosed. Some apply to her, many don't, because of the specifics of the cancers). I'd be very grateful for any help.

Thank you.

Mark

Comments

  • NoTimeForCancer
    NoTimeForCancer CSN Member Posts: 3,585 Member
    #2

    Hey Mark, I am sorry to hear what you are going through but what a great brother you are. No doubt she is overwhelmed, and it is ok.

    First, and foremost, she needs to be working with a gynecologic oncologist, and a doctor she trusts and feels like they are on her team.

    If she can take someone with her, and you get it, it helps to have a second set of ears and someone who can write/scribe the things said for her is helpful.

    As I recall there will be a lot of information presented to her. She should not be afraid to say, "What does that mean?" "Can you explain that to me more?" I would ensuring she knows who she can call with follow up questions or as things come up? Are the part of any clinical trials, and when treatment is outlined, "is this the standard of care?" and if they are aware of any clinical trials based on her cancer, cancer assay?

    What we say often, and still holds true, we are all a statistic of one. Of course, she is welcome to come here, however we welcome family as well, and you understand it better than some.

    Please feel free to come back with questions. The board can be quiet but I know there are some very smart women who check-in and who know way more than me.

    NoTime

  • marks1k
    marks1k Member Posts: 4
    #3
    https://csn.cancer.org/discussion/comment/1723323#Comment_1723323

    Thanks for your kind reply. Yes, she is seeing a gynecological oncologist. She has appointments with two this week, at different hospitals.

    I'm a bit obsessive lol, and when I was diagnosed with cancer, I did tons of research and had pages of questions I wanted to ask my oncologist. Some would overlap with my sister, but a lot were specific to my kind of cancer. I do understand not everyone wants all of the info like i do, I'd just appreciate any help in knowing what kind of questions to ask- though I am making progress on that just through looking at info on clear cell uterine cancer.

    It's strange- I feel it's harder to watch my sister going through this than dealing with my own cancer, which is equally aggressive (but has thankfully so far been manageable).

    Again, thanks so much for taking the time to reply.

    Mark

  • anne609
    anne609 CSN Member Posts: 10 Member
    #4

    Many uterine cancers are being treated with immunotherapy concurrent with chemo and some of the drugs approved for use are more effective in cases with there is a mismatch repair deficiency. Keytruda was approved for use in June of last year and there are now at least one or two others. As part of the pathology, an MMR Protein test will be run. As an aside, those with a mismatch/deficiency are apparently much more susceptible to Lynch syndrome which is associated with colon cancer. So having a discussion about immunotherapy, which drug, MMR status and likely results would be useful.

    The other test that is specific to ovarian/uterine/endometrial cancer is a bloodtest — CA 125 (Cancer Antigen 125). It is apparently not a reliable indicator of disease but is monitored throughout chemotherapy and beyond for trend — if falling, it is an indicator that treatment is working but if rising may be an indicator that tx is not working or of recurrence.

    I'm also a research geek — hope these items are useful to you. Anne

Discussion Boards