← Return to Suspected Endometrial Cancer: Cervix won't open to do biopsy

Discussion
Comment receiving replies
Profile picture for jar1591927 @jar1591927

Hi...absolutely just insist on a total hysterectomy with BSO. I had breast cancer Stage 1A in 2015. I took Tamoxifen for 58 months and had "one spot" - didn't even look like blood. My GYN did the ultrasound and sure enough the endometrium was extremely high @ 14.
That day, mind you just 8 weeks short of 5 years Tamoxifen, I stopped of course. I ASKED FOR A HYSTERECTOMY. I was 69 at the time. The GYN and my Breast Oncologist decided that I should be followed. They both agreed a hysterectomy at that point was "cutting off your hand for a hang nail ". I was followed closely - twice a year for 3 years with an ultrasound every time. I also had several hysteroscopies in the office - none of them were successful and offered no real findings of use. Never ever had another symptom and was put on Anastrozle after the Tamoxifen. Jump to 4 years later and a PAP test showed atypical cells. At that point I said: "that's it - send me to a gynecological surgical oncologist today!" The GYN set it up while I was in his office. Long story in short - the oncologist agreed that anything less than a hysterectomy would be
useless. Now age 73 I had a Total Hysterectomy with BSO and Lymphadenectomy.
By the way it was done robotically as an outpatient...honestly it was easier than a dental appointment!
I never took anything for pain and was 100% a week later. They found 1 small polyp.
However it is Clear Cell Carcinoma - a very aggressive and only @5% of endometrial cancer is Clear Cell.
Because of the very low percentage there is very little info and there has never been a clinical trial only for this - it has been included in some trials but not specific to Cleat Cell. I am very lucky so far. I am Stage 1a however with a grade 2 pathology.
After the healing from surgery because of the Grade 2 clear cell, it was recommended that I have radiation.
I had 5 treatments of Brachytherapy to the vaginal cuff that is left after surgery. It's been 13 months and both my radiation oncologist and gynecological surgeon oncologist found everything to be okay.
I see them both every 3 months. And the blood test for CA-125 ( cancer marker for ovarian cancer) has been very low. My breast oncologist never explained or warned about the Tamoxifen associated endometrial cancer. It's 1 in 500 cases. They routinely don't to the ultrasound either. With my history of breast cancer, using Tamoxifen for 5 years, my age... all suggest a hysterectomy would have been reasonable when I asked. 4 years later I insisted - however did indeed develop uterine cancer and Tamoxifen is associated with high grade pathology, usually not the endrometriod common diagnosis.
I sure hope this helps you. Stand your ground. Be your own advocate or bring along one. If you have questions please feel free to contact me! 😊

Jump to this post


Replies to "Hi...absolutely just insist on a total hysterectomy with BSO. I had breast cancer Stage 1A in..."

@jar1591927
I was diagnosed with clear cell endometrial cancer in 2022. I had robotic surgery to remove everything, chemo, external beam radiation, and brachy.
I was also in a clinical trial for Keytruda (along with chemo) but got kicked out due to metastasis to lymph nodes, including axillary. From what I’ve learned, breast cancer is a common site for a secondary cancer, even these non hormonal cancers. I feel like a ticking time bomb because there has been nothing proven to help with clear cell or women with no specific markers. Here’s hoping that something comes along soon for you, me and the others in our boat.