Tamoxifen and uterus -conflicting opinions

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lola12
lola12 Member Posts: 127
edited July 2018 in Hormonal Therapy - Before, During, and After

I have been on tamoxifen for stage 1 breast cancer diagnosis for a few years now. I am post menopausal.

My ob-gyn wanted me to get a transvaginal ultrasound to keep an eye on the tamoxifen side effect of thickening. Baseline in 2015 was normal and I do NOT have BRCA gene.


I had another ultrasound last week and I got my results from another gyn doctor while mine was on vacation and this doctor said:

"The sonogram shows small fibroids. It also shows thickening of the uterine lining. This is a common finding with patients on Tamoxifen and generally we don't recommend any intervention unless vaginal bleeding occurs."

My GYN came back from vacation and her nurse called and told me on Friday at 3:30 that they wanted to take a tissue sample. I explained that the other gyn said all was well and asked to speak to the GYN. Of course, she was gone for the day and I need now to wait all weekend.

I have two conflicting opinions. What is the normal protocol? Why would I need a tissue sample if there is no bleeding?

I did have a tissue sample in 2015 and it was so painful. I dont want to go through that unnecessarily again. I would rather remove the uterus. I already have my ovaries and fallopian tubes removed.

I am so upset. Anyone have similar experiences?

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2018

    I think it depends on how thick the lining has become. The concern with the thickness is possible cellular changes that could be precancerous.

    My doctors (MO and GYN) were against any monitoring. They said they would only check if I had bleeding. Well - I had pain and ended up getting a sono that showed thickening and an ovarian cyst with recommendation for f/u in 3 months. That one showed an increase in thickening and changes in the cyst. Then the GYN said we should do a D&C ...

    Well - I had a period. 18 months since the last one which was during chemo. I'm almost 52. So now we're back to repeat sono and I'm trying to figure out when would be the best time for that.

    Maybe they could do a D&C instead?


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  • lola12
    lola12 Member Posts: 127
    edited July 2018

    Wow, thanks for filling me in. My problem here is that I have NO symptoms.

    From what I am reading, I tend to agree with the first GYN. No bleeding no need for follow up.

    Why this second gyn recommended biopsy, I do not know. Last time I had one, I nearly passed out from the pain. I would prefer to re-check in a few months and if changes occurred then to remove the uterus.

    I often think of the endometrial biopsy as painting one spot on one wall in an entire room. Taking one sample, doesn't mean there isn't changes just mm away. So, I am going to push for just removal.

    Of course, I leave for vacation next week and this is the last thing I need on my mind.



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  • Amica
    Amica Member Posts: 488
    edited July 2018

    lola12

    I went through years of that while on tamoxifen. I had thickening of the endometrium and cysts on my ovaries. As NotveryBrave correctly noted they want to check the tissue for pre-cancerous changes. After 2 D &C's, and endless monitoring, my gynecological oncologist surgeon finally recommended a hysterectomy/oopherectomy so I wouldn't have to deal with it anymore. That worked out better for me.

    take care,

    Amica

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