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Old 08-27-2019, 06:37 PM   #1
bejuce
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Join Date: May 2009
Posts: 510
Tamoxifen - 8-10 years?

Hi HER2 community,

I would like to gather your collective wisdom on the current thinking of endocrine therapy. I was diagnosed in Feb. 2009 with state 3 HER-2+, ER+ (30%) and PR-. Completed a successful course of treatment and am doing great. In Feb 2018, I had elevated liver enzymes. My oncologist at the time ordered a CT scan and upon a finding of mild fatty liver disease, suggested I stop the Tamoxifen. I did, the enzymes went down and she told me I was done.

Fast forward to March of this year, when upon noticing that the back of my shoulder/neck area on the non-cancerous side seemed swollen as compared to the right (nothing more than my muscles/fat changing due to personal training), mentioning the same to my Ob-gyn at an appt and freaking her out, I scheduled an appt with another oncologist at Stanford (my former oncologists have all left). This oncologist then proceeded to order me a ultrasound, blood work and a CT scan that found a small adenoma that then needed to be checked with a MRI. All turned out well.

Except that when she asked me about Tamoxifen back in March, she somehow thought I was still taking it. I was surprised by her question as my record should have reflected that I had stopped it a year prior. We agreed at that time that I would do all those tests to see if my liver was fine before proceeding with the Tamoxifen.

I visited her again this morning thinking we were going to discuss what to do about any future follow-up on the ~1cm adenoma, and she instead spent the whole visit asking me about Tamoxifen or an AI/ovarian suppression combination. She wants me to take either one for 20 more months, saying that I am high risk and that I should do everything I can to prevent a recurrence. My first oncologist, who I love and is one of my heroes, had always said that my tumor was driven by HER-2. I did everything I can there (with a year of Herceptin, chemo clinical trial, breast cancer vaccine clinical trial), and took Tamoxifen for 8 1/2 years. I honestly thought I was done.

Does anyone know of any data or studies that show an extra benefit of taking Tamoxifen for a total of 10 years vs. 8 1/2? Will these extra 20 months benefit more than all the potential side effects of increased liver damage and endometrial cancer?

If you read till now, thank you so much. I'd appreciate any insights!

Thanks!

Bejuce
__________________
ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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