Continue hormone blockers after hysterectomy/oopherectomy?

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SpeedyTeach
SpeedyTeach Member Posts: 21
edited May 2021 in Hormonal Therapy - Before, During, and After

Hi everyone,

It's been a while since I have been on here, but hoping there is someone that may of had a similar scenario to mine that can tell me of their experence or maybe what was recomended for you. As I note I am meeting with my medical oncologist this week to speak with them as well. I was diagnosed in 2017 with IDC stage 1a. My original biopsy showed a slight er+ pr- her2- tumor. Then after my surgery my tumor was sent for an oncotype score, which came back with a score of 58 (super high) and as triple negative. My treatment plan after surgery changed because of the oncotype and did dose dense chemo (AC/T) and radiation (treating me as if it was triple negative). Since my tumor (after being rebiopsied by the cancer hospital) showed that 3% of the tumor was er positive, they would have me take tamoxifen until I was menopausal (at least 5 years then tested for menopause) and then switch to an AI for an additional 5-10 years. I fully understood going into this treatment plan it was fairly aggressive, so knew it wasn't going to be easy but wanted to do all i could to blast the heck out of it.

Fast forward to now, I have not had any recurrence thankfully, however I have had quite a few health problems. One of which was an twisted ovary from a cyst that required me to get a complete hysterectomy including an oopherectomy. I was on the tamoxifen for almost two years when this happened (2019) and after my oopherectomy was switched to an AI since I was officially menopausal. I have switched my AI's a couple times trying different ones to see if i can tolerate one better than another. I have experienced eye issues with rashes, joint/bone pain, fatigue etc. I am still a very active person and excercise almost every day (push through the side effects) as well as maintain a healthy diet, but still struggle quite a bit. I used to be so strong but now i feel like I constantly complain and at this point just tired!

So I am thinking about going off the medicine, which is I understand a big decision. I am meeting my oncologist this week to discuss, however i feel like with my oopherecytomy (both ovaries) and the small part of my original tumor being only 3% er positive, is this really worth all the side effects I am going through for such a small chance that it is helping keep something at bay that was so slightly estrogen driven. It is sounding like as an alternative they can switch me back to tamoxifen at a lesser dosage and continue with that for at least another year until I get to the 5 year no recurrence mark. Guess I will find that out Thursday when I meet with them for sure. They worry about the high oncotype score and risk of recurrence. They are also honest with me that there just isn't enough studies out there on value of hormone therapy on these types of tumors. Part of me is like ok just suck it up for one more year and another part of me is like I just need a break.

Would love to hear if anyone else has been in the same boat and maybe what your experience has been like or maybe what your treatment plan was.

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited May 2021

    SpeedyTeach, my personal opinion is if your MO says that you need to continue on AI, I would seek a second opinion. The risks of AI may be higher than the benefits in your case. I would definitely ask for a second opinion.

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  • SpeedyTeach
    SpeedyTeach Member Posts: 21
    edited May 2021

    LillyIsHere-thank you for your opinion. I actually have thought about a second opinion and if insurance doesn't cover maybe just swallowing up the cost and just doing it. I am like you and just wondering how much the benefit is vs side effects and unfortunately no one can give me a clear answer. Especially now that I have no ovaries left. I think if i had a stronger ER+ tumor i wouldn't be so much on the fence.

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited May 2021

    SpeedyTeac, I am taking letrozole because BC I had was high ER+ and spread to lymph nodes, recurrence without letrozole is 30%. AI are strong mediations that have many SE that are obvious like joint pains, insomnia, etc. also create other long-term SE like heart disease, osteoporosis, etc. A second opinion my help you make decision based on the pros and cons. Let us know how it goes.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2021

    The adrenal glands throughout your body continue to make estrogen even without the ovaries. Something to ask your MO about. I’ve been on all the AIs, letrozole is the easiest one on me.

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  • SpeedyTeach
    SpeedyTeach Member Posts: 21
    edited May 2021

    Spookiesmom-Ah interesting on the adrenal glands, I will definitely ask. I was actually on Letrozole until about 3-4 weeks ago, when after increased hip pain, quit taking it. Originally after my emergency oopherectomy/hysterectomy I was taken off tamoxifen and placed on Exemestane but within a couple months had pretty severe reaction with my eyes and rashes, Letrozole seemed to do better (on that for about a year) until rashes began to develop again and bone/joint pain. My MO did a bone scan which came back fine and why the follow up this week about what to do next. She had mentioned in the past that if i could not handle the side effects of a AI then we could look at going back onto tamoxifen at a lower dose. She actually wanted me on an AI for 10 years from my hysterectomy however we compromised on 5 because of my weak ER+ tumor and side effects it was causing. She also said that though not alot of research on its effectiveness in a case like mine with my high risk of recurrence if I could tolerate the side effects then she would like for me to continue. I will see what they think Thursday, but wish i knew more stats on high oncotype with weak er+ positive tumors and the effectiveness on preventing recurrence.

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  • flashlight
    flashlight Member Posts: 698
    edited May 2021

    This is what I was told: Before menopause, your sex hormones like estrogen and progesterone are made by your ovaries. During menopause, your ovaries pretty much shut down, and they stop producing hormones for the most part, so to keep your hormone levels high enough after menopause what your body does is, the adrenal glands take over making some of those hormones for you. Your ovaries aren't able to make enough anymore, so the adrenals step in and start making estrogen and progesterone, but your adrenals also make your stress hormones, and they can only make one type of hormone at a time, so if your stress level is high all the time and the adrenals are always making stress hormones, they never get a chance to switch over to making estrogen and progesterone? Estrogen is produced by fat cells and the adrenal gland after menopause. I was told my ovaries shrunk to about 0.5cm. Normal healthy ovaries are 3-4cm.

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  • SpeedyTeach
    SpeedyTeach Member Posts: 21
    edited May 2021

    Flashlight-thank you so much. That makes sense and maybe what my MO was trying to explain to me last time we had this conversation when I started on AI's. Biggest question is how much it helps when only 3% er positive and oncotype says triple negative-ugh. Hopefully Thursday will bring some clarity and guidance as to what I may decide. Will update on what I find out. At this point just don't know..


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  • SpeedyTeach
    SpeedyTeach Member Posts: 21
    edited May 2021

    So my follow up was today and what it breaks down to is that i won't ever know 100% for sure if my original tumor was er+ or triple negative, too long of a story to even try to explain. At this point if it was er+ and i go off hormone therapy i would have a really high chance of recurrence. They was going to recommend tamoxifen but my husband would prefer me to stay on an AI. The only other one I have not tried is Anastrozole, priorly tried exemestane and letrozole. They also recommended bioflex with calcium to see if that would help with the joint pain i have been having.

    As spookiesmom said-the fat and adrenal glands continue to produce estrogen. They say that an AI reduces the estrogen in those tissues whereas the tamoxifen blocks it all together.

    At this point i am frustrated I will never know but thankful i haven't had a recurrence to this point. We hit it with chemo like triple negative and now following up like it was ER + to cover all the bases.


    Thanks everyone for your input :)

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2021

    Speedy, why does your husband prefer you to stay on an AI?

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  • SpeedyTeach
    SpeedyTeach Member Posts: 21
    edited May 2021

    Cowgirl-His mother passed away from breast cancer and took tamoxifen originally after her treatments ended (mastectomy, chemo, radiation). She was in remission for about 4-5 years when hers spread to her lungs. We was in college at that time and it was a really hard experience on the family. So he wants me to take an AI though it only reduced my recurrence risk by 2% compared to tamox from what the oncologist was explaining to me yesterday. They was telling me 60% chance of recurrence if i quit hormone therapy prior to 5 years of being on it, 34% with tamox, 32% with and AI. This also may not be correct because it may of been triple negative which they cannot retest for because there is no tissue left from original tumor. Also other factors come into play which came from other markers of my original biopsy.

    Side effect wise when I took tamoxifen prior to hysterectomy I didn't have as many side effects however I also know stress wise for him worrying, he'd feel better if I'm taking an AI vs tamox. Her stats where way different than mine, high er,pr+ and stage 3 when fist diagnosed. When I was diagnosed in 2017 it really hit him hard so just feel like I need to do what I can to help ease his worries too.

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