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Topic: Anyone switch back to Tamoxifen after AI treatment?

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Aug 1, 2020 07:47AM

PurpleCat wrote:

In January, after a year of tamoxifen, a routine birth control consult led to the discovery that my estrogen (estradiol) level was way off the charts. This led to a regimen of blood tests and scans, revealing benign-looking ovarian cysts, a thickened endometrial lining, and a large asymptomatic fibroid that's been known for years and stable on imaging for at least five. I was referred to a gyn oncology surgeon in order to be in the best hands possible. She recommended a full hysterectomy to get rid of everything, as gyn onc surgeons probably tend to do when presented with an opportunity to be proactive. I asked for just ovaries and tubes to be removed but to hold off on the uterus if at all possible, as I wanted as short a recovery period as possible in order to be in shape for a family wedding. I woke up to find I still had a uterus and that the lining had looked good visually, hooray! So it was a downer to get the call a few days later that the pathology had revealed hyperplasia after all, boo. I was told to just schedule another D&C in the summer to see what would happen in the absence of tamoxifen and estrogen, as there was a good chance it would clear up. I had that last week, and got bad news: the hyperplasia is still there.There's a possibility a hormonal IUD might clear it up. but with my breast cancer history that's probably not a good option, and the best course of action is to do the hysterectomy and be done with it, especially since there's still a chance there's cancer behind the hyperplasia and a small chance there's enough of it to warrant further treatment. So that's the plan.

Meanwhile, I'm wondering what's ahead for my hormone therapy after this is over. I didn't like taking tamoxifen, as it gave me ferocious leg cramps and made me feel foggy, and was hoping Letrozole would be better. It hasn't been. The joint pain makes me feel and move like I'm 80 years old. I don't sit on the floor any more because it's too hard to get up. Exercise helps immensely, but I won't be able to do that while recovering from hysterectomy, and I'm afraid of how much ground I might lose in my joints and core strength, perhaps permanently, by the time I'm cleared to do any kind of workouts. And that's just the joint issues. It's impossible to know which problems are caused by letrozole and which are from the sudden loss of ovaries, but all in all, I'd rather be on Tamoxifen again ... if I can. The gyn surgeon didn't know, and I haven't asked my breast surgeon yet. It was obviously a very bad thing for my pelvic organs, but if they're all gone, maybe I can just switch back, and it will block whatever estrogen my body is still producing.

Just wondering if anyone has ever done this?



Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal: Sentinel Surgery Prophylactic ovary removal Hormonal Therapy Femara (letrozole) Radiation Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 1, 2020 05:17PM flashlight wrote:

Hi, A vaginal hysterectomy isn't bad at all. After your ovaries and tubes were removed I'm sure you had restrictions like bending and lifting. You can drive after 2-weeks. Most of the time it is considered an outpatient surgery. I had a prolapse so I saw a Urogyn. Then you can go back on Tamoxifen. Tamoxifen gave me an enlarged uterus with numerous fibroids in a short period of time. I have osteoporosis so I didn't want letrozole with a bone building drug. Tamoxifen was my choice. Best wishes.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Aug 2, 2020 09:52AM PurpleCat wrote:

Thanks, Flashlight. I'm glad to know it won't be worse than the previous surgery and that I should be able to go back on a drug that won't deplete my bones. It feels good to know I'll never have to worry about ovarian cancer, and I'm hoping it will soon be good news that I don't have to worry about any other gyn cancers either. If that's the silver lining in all this, I'll take it.



Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal: Sentinel Surgery Prophylactic ovary removal Hormonal Therapy Femara (letrozole) Radiation Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 16, 2020 10:29PM sm627 wrote:

Hi Purple Cat,

I have a friend that was on Tamoxifen and had to stop due to kidney issues. She started taking letrozole for a year, but had to stop that for another problem. She is now back on Tamoxifen and doing much better now. It is possible to go back the lesser of two evils.

Winking

Wishing you the best of luck.

Take Care,

Sara

Diagnosed at 32 years old. DX 5/30/2017 Borderline Phyllodes Tumor 17cm. Surgery 6/27/2017 Mastectomy(right). Hormonal Therapy 9/25/2017 Tamoxifen
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Aug 19, 2020 07:41AM PurpleCat wrote:

Thanks for the comments, everyone! I had my 2 year check-in with my doctor today and was told it would be fine to switch back to tamoxifen after the hysterectomy. Would never have expected that being told to take tamoxifen again would be good news ...

Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal: Sentinel Surgery Prophylactic ovary removal Hormonal Therapy Femara (letrozole) Radiation Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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