Looking for advice/ similar experience

nicoledeming1981
nicoledeming1981 Member Posts: 4 *
edited September 2023 in Uterine/Endometrial Cancer #1

I’m 41. I had my tubes tied 13 years ago. I’ve struggled with horrific periods. Blood gushing when I stand up, terrible cramps, anemic, long heavy periods. Spot in between periods. I went to the GYN who initially thought I had adenomyosis. He said my uterus was globally slightly enlarged “8-10 weeks”He suggested a hysterectomy. Which I agreed to. He ordered a transvaginal ultrasound which showed my endometrium lining at 19.1mm. A what’s most likely a 1.81cm polyp and a small cyst on my ovary. I have to have a hysteroscopy, D&C, polypectomy, ablation. My primary care doctor says not to worry about cancer as it’s very very rare for someone my age to have it. My great grandmother died from uterine cancer at 52. I have no date yet for these procedures and I’m not getting any response from the GYN

Comments

  • Forherself
    Forherself Member Posts: 1,018 Member
    #2

    Welcome Nicoledeming1981. I think I would ask for a second opinion. I thought you were having a hysterectomy? Ablation is not used anymore if there is a possibility of cancer from what I have read. So from reading your post, you were going to have a hysterectomy, but then the gynecologist changed opinion after US and decided to do a biopsy? I will see if I can find the article I read about ablation. Your family history does increase your risk of cancer.

  • Forherself
    Forherself Member Posts: 1,018 Member
    #3

    To reduce how much you bleed during periods, your health care provider might suggest birth control pills or an intrauterine device (IUD). Endometrial ablation is another option.

    Endometrial ablation generally isn't recommended for women after menopause. It also isn't recommended for women who have:

    Certain uterus conditions.

    Cancer of the uterus, or an increased risk of cancer of the uterus.

    An active pelvic infection.

    A desire for future pregnancy.

    This is copied from the Mayo Clinic. It seems to me you are in the increased risk of cancer category. This is a list of women who are generally not recommended ablation. A second opinion would be good.

  • nicoledeming1981
    nicoledeming1981 Member Posts: 4 *
    #4
    https://csn.cancer.org/discussion/comment/1708913#Comment_1708913

    Yes. Before the us he was sure it was adenomyosis. Now, I have to have a biopsy of the polyp and a D&C because my endo lining is 19.1mm

  • Forherself
    Forherself Member Posts: 1,018 Member
    #5

    The hysteroscopy and polypectomy sound regular, and it's what I would want. I would not want ablation. I would want a hysterectomy after the biopsy. Just me. Maybe your family history will make it easier to get a hysterectomy. Sometimes insurance companies want to see a need for the hysterectomy. Good luck with your biopsy.

  • nicoledeming1981
    nicoledeming1981 Member Posts: 4 *
    #6
    https://csn.cancer.org/discussion/comment/1708919#Comment_1708919

    I would LOVE to have the hysterectomy. I do not want an ablation. I’m seeking a second opinion

  • Forherself
    Forherself Member Posts: 1,018 Member
    edited September 2023 #7

    Something about this process. It is a good idea to have the biopsy first. IF you did have a cancer in there you would be referred to a gynecological oncologist for the hysterectomy. When they do a hysterectomy they biopsy right during surgery, and take some lymph nodes and biopsy tubes and ovaries and a pelvic wash. If you just had your gynecologist do a hysterectomy that would not happen so you would have to have a second surgery to "stage", if they found something after a hysterectomy by your gynecologist. Only 1 in 10 biopsies are positive, but when its you positive you want it done right. And you will only know that after the biopsy. Hopefully the biopsy will be negative and your gynecologist can then do the surgery confident you do not need staging.

  • Icantbelieveit
    Icantbelieveit Member Posts: 27 Member
    edited September 2023 #8

    Of course get a 2nd opinion if you are at all unsure. I have just gone through a similar path (without ablation being recommended) due to postmenopausal bleeding and here is how it went:

    Ultrasound showed a 19-mm endometrial lining, no polyp BUT I am postmenopausal and age 60.

    Hysteroscopy and D&C recommended and done, 1 polyp found which was positive for endometroid adenocarcinoma. I was referred to a GYN oncologist for hysterectomy and lymph node dissection.

    Oncologist required a CT scan of chest/abdomen/pelvis, with no concerning findings related to cancer, just gallstones and kidney stones.

    Hysterectomy done with removal of cervix, uterus, tubes, ovaries and as it turns out only 1 pelvic lymph node with pelvic washings done (2 weeks ago).

    Pelvic washings came back first, no sign of malignancy.

    Post hysterectomy 1-1/2 weeks the surgical pathology came back and I had 1 additional polyp, endometriosis with adhesions to rectosigmoid area, cysts on uterus, in both tubes and both ovaries. No further evidence of carcinoma, and the conclusion is that all of the actual carcinoma was removed during hysteroscopy.

    Definitely say no to ablation - this is not done anymore for reasons explained above and because ablation was recommended, I would probably still look for someone else to do the hysteroscopy, because I am not comfortable with the ablation being recommended at all.

    Then whatever further recommendation can be made based on what is found during the hysteroscopy.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,517 Member
    edited September 2023 #9
    https://csn.cancer.org/discussion/comment/1708921#Comment_1708921

    Forherself, that is a fantastic point and I agree 100% with your take.

  • nicoledeming1981
    nicoledeming1981 Member Posts: 4 *
    #10

    I made an appointment for a second opinion. I go next week. Something about the whole process is making me uneasy

  • Icantbelieveit
    Icantbelieveit Member Posts: 27 Member
    #11

    Any time you are uncomfortable with something, it is ALWAYS okay to say STOP. WAIT. I want someone else to look at this. ALWAYS.

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