Waiting for biopsy

cksd
cksd Member Posts: 6 Member
edited August 2023 in Uterine/Endometrial Cancer #1

Hi all,

I am a breast cancer survivor, stage 1 in 2018, cancer-free after bilateral mastectomy. I went to the ER last week with severe abdominal pain and had an abnormal vaginal ultrasound. Post-menopausal, 16mm endo thickening, small cysts throughout, and hyper vascular. I thought I was still perimenopausal so I didn’t worry much about the spotting/bleeding, but now I realize what a red flag that is/was… My CT scan didn’t show any distal signs, so that is the good news.

I was doing ok until I read all this research on uterine cancer, tamoxifen (I’ve been on it for 5 years), and poorer outcomes.

Any words of encouragement, strength and hope would be appreciated! Waiting is the hardest part.

Many thanks,

CK

Comments

  • Forherself
    Forherself Member Posts: 1,013 Member

    CKsd welcome to our board. Sorry to read about your troubles here. Tamoxifen does increase the risk of endometrial cancer, but I don't think it is a large increase in risk. Waiting is the hardest part. I guess you already know that from breast cancer. There are other women who have had endometrial cancer after breast cancer, and women who have had breast cancer after endometrial. I guess what I have learned here is you are a statistic of one. One in 10 biopsies are positive for endometrial cancer, so there is a 90% chance it is not cancer. Everyone here has had a positive biopsy so we are not a representative group. There is hope for you. Don't read studies older than about 5 years. Things have changed so much. I stick with European and North American studies. And keep busy. Feel free to ask questions, and please come back and tell us your biopsy results. We love good news too.'

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member

    CK, I agree with Forherself. There is an elevated risk with the use of tamoxifin but you are a statistic of one. I would also recommend staying away from Dr Google. He is very out of date. Are you waiting for an appointment with a gyn now? I think I am missing something here.

  • cksd
    cksd Member Posts: 6 Member
  • MoeKay
    MoeKay Member Posts: 493 Member

    Hi CK,

    Based on your post, it sounds like most of the time that you were on tamoxifen you were premenopausal? In case you haven't seen it yet, I just came across the American College of Obstetricians and Gynecologists' (ACOG) 2014 Committee Opinion, Tamoxifen and Uterine Cancer, which ACOG reaffirmed in 2020. Here's a link: https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2014/06/tamoxifen-and-uterine-cancer

    The Committee Opinion states in pertinent part for premenopausal women:

    • Premenopausal women treated with tamoxifen have no known increased risk of uterine cancer and as such require no additional monitoring beyond routine gynecologic care.
    • Unless the patient has been identified to be at high risk of endometrial cancer, routine endometrial surveillance has not proved to be effective in increasing the early detection of endometrial cancer in women using tamoxifen. Such surveillance may lead to more invasive and costly diagnostic procedures and, therefore, is not recommended.

    However, with respect to postmenopausal women, the Committee Opinion states:

    • Postmenopausal women taking tamoxifen should be closely monitored for symptoms of endometrial hyperplasia or cancer.

    Good luck with tomorrow's biopsy! It would be wonderful if we could get biopsy results as quickly as results from imaging tests, as you are absolutely correct that waiting for results is the worst!

  • cksd
    cksd Member Posts: 6 Member

    Thank you, MoeKay, this is very helpful!

    The gynecologist said that based on my history, I will have to get a hysteroscopy even if the test is negative. When I asked how long it would take to get the hysteroscopy scheduled, she said maybe in a month or 2. After the biopsy she said that she didn’t get very much tissue (I guess the tissue gets compacted when you’re on Tamoxifen), so the results might come back inconclusive. 😞 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member

    CK, thank you for adding all the details. I am glad to hear that the gyn is already planning ahead to do more and not just accept the biopsy results. That is great, they definitely want to find out what is going on. Hopefully that will start getting booked tomorrow if it wasn't done today.

  • Icantbelieveit
    Icantbelieveit Member Posts: 27 Member

    Sounds like a plan! Glad to hear they're going ahead with the hysteroscopy and pulling out a better sample for definitive diagnosis.