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Topic: Tamoxifen for ALH?

Forum: Benign Breast Conditions —

A safe place to discuss benign (non-cancerous) breast conditions. Benign breast conditions are unusual growths or other changes in the breast tissue that are not cancer, though some may be associated with an increase in breast cancer risk. Benign breast conditions are quite common.

Posted on: Jun 24, 2021 05:14PM - edited Jun 24, 2021 05:16PM by Greta71

Greta71 wrote:

Hello! I was diagnosed with ALH in my left breast in February of this year. Two spots were found and both removed by surgical excision. My doctor is recommending Tamoxifen as a preventative treatment, though he's saying I could go either way and he would support my decision not to take it. I'm 50 and not through menopause yet. I've read about the side effects and while that makes me a little nervous, I am leaning towards taking the medication. Anyone else with ALH who takes it or if you chose not to take it, why not? I'd love to hear others experiences with this medication. Thank you!

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Jun 25, 2021 02:48PM CasM wrote:

Hello there and happy Friday

Sorry about your recent ALH diagnosis. I was diagnosed with ALH in Oct/Nov 2018 & had a excision biopsy performed. I chose NOT to take tamoxifen. I have a history of DVTs and my hematologist said that the benefit of tamoxifen is worth the risk of blood clots but I disagree. She even said to me ' how do you plan to deal with excess estrogen then'? I told her that I have already started to change my lifestyle to remove xenoestrogens and since my diagnosis did not include estrogen receptors in my pathology - how do we know that my condition was due to estrogen. Just assumed. I have stuck with my 6 month alternating surveillance of mammo/MRI and am fine with that. I would like to move away from the MRI surveillance and move to US but I can't get my breast surgeon to agree. Sigh. Additionally I did not want to deal with the side effects of tamoxifen. I am 55 and slowly going through menopause and am ok with that and my high risk status. It may change but for now I think my lifestyle changes are working for me.

I have my MRI in July and the anxiety every 6 months is bothersome but a person gets through it. The choice to take/not take is a personal one so do what is best for you and your situation/gut feeling.

ALH diagnosis Oct 2018
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Jun 25, 2021 03:27PM flashlight wrote:

Would your MO consider a lower dose like 5mg? Maybe you could tolerate that dose without the majority of side effects. You are already in perimenopause. If you consider trying the Tamoxifen get your baseline transvaginal ultrasound and bone density done. Good luck!!

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 Whole-breast Surgery Lumpectomy: Left
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Jun 25, 2021 04:35PM - edited Jun 25, 2021 04:37PM by PAKNC

I have ALH in my right breast and was advised I could control it with endocrine therapy. I would suggest monitoring your HbA1C, fasting blood sugar and liver function regularly with your PCP. You can do the fasting blood sugar testing easily with an at home monitor when you're not going to the PCP. Some women experience drastic changes in blood sugar and lipids (metabolic health) quickly from Tamoxifen. I was one of those, so stopped the medication after six months, per my provider's ok. I am not overweight but thin, I apparently have this tendency as do some other women.

Diagnosed at 56. Did active surveillance in clinical trial + Tamoxifen for 6 months, cryoablation in 02/21 due to DCIS progression. Stopped Tamoxifen, per provider's ok - turned prediabetic, poor responder. Weighing AI options. Dx 3/23/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Dx 5/29/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Hormonal Therapy 7/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 25, 2021 05:24PM Greta71 wrote:

CasM - thanks for your insight. We are neighbors - I live in Brunswick, MD! Can I ask who your doctors are?

Flashlight - the dose he called in for me is only 5mg daily so I think that helps to lessen the side effects. I just had a transvaginal ultrasound for an ovarian cyst so I should be good there. I haven’t gone through menopause yet though so not sure what to expect on Tamoxifen. Will my periods stop altogether?

PAKNC - The doc did mention the need to monitor blood levels so ordered a CBC and liver enzymes panel. I know he plans to keep an eye on that. I am worried about weight gain. I’ve always been a healthy weight but am carrying about 10 extra lbs. that’s been impossible to lose. I definitely don’t want to gain more.

Thank you all for your responses!

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Jun 26, 2021 05:06PM kimberly62 wrote:

Hi Greta, sorry to hear about your recent diagnosis, it is hard to try to figure out the best course of action. I was diagnosed with ALH in 2015 at the age of 52, and not quite menopausal. I started taking 10mg for about 2 years but changed to the aromatase inhibitor Aromasin because I was experiencing endometrial thickening on Tamoxifen, and by that point I was in full menopause and able to take Aromasin. Besides the endometrial thickening, I always felt fine while taking Tamoxifen, and did not have any other side effects. I was only on Aromasin for 4 months and started having severe joint pain so I then switched to Evista to finish out my 5 years. Best of luck with your decision and remember that you can always stop taking it if you have an issue.

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Jun 29, 2021 05:59AM CasM wrote:

Hi Greta

Small world. I love Brunswick... I haven't been to Beans in the Belfry in forever. Is it still open?

My breast surgeon is Dr. Susan Bahl and whomever the NP is at the moment i.e. Women's Center for Breast Care in Frederick MD.

Good luck in your decision. I am also going to check out the BBDrisk DX test and try to get Dr. Bahl to order it for me. Fingers crossed. PM anytime

ALH diagnosis Oct 2018
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Jun 29, 2021 07:48AM LynnVB wrote:

Welcome Greta.I was diagnosed with ALH in February 2017. I was 56 at the time. I had the area surgically removed and have been monitored with Mammo and MRI every 6 months. All has been fine. Tamoxifen was discussed but I declined. My surgeon was more persuasive about it than my oncologist. I have a healthy lifestyle, low BMI, exercise etc. Wine is my vice. My MRI is coming up in a few weeks. I now take the stance that it is a blessing to have this increased screening-that helps with the nerves.

The decision to use AI's is personal and as my Dr. said to me “It depends on your comfort level with your risk." I am comfortable with it at this time knowing that my increased surveillance will likely identify any further issues early.

1/2017 -Biopsy results Focal Atypical Lobular Hyperplasia involving adnosis with calcification.

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