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Old 08-27-2019, 06:37 PM   #1
bejuce
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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
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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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Old 08-27-2019, 08:35 PM   #2
Lucy
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Re: Tamoxifen - 8-10 years?

Bejuce,

My estrogen levels were lower than yours (7 or 10%, depending on which report you believed) but I was put on hormone blockers anyway. Within six months my liver enzymes shot up to the point that three different doctors said if I continued on them that I would have permanent liver damage. I discussed this with my oncologist because I wanted to be sure I did everything I could to ensure the cancer didn't come back. Aside from my estrogen levels being relatively low, she said that if I had a recurrence that the estrogen levels wouldn't be the main concern - it would be the HER2 component that would be the concern.

Given that the standard used to be five years for hormone blockers I might consider a second opinion. Discuss your concerns with going back on tamoxifen and maybe even ask that since you've had a break, might that help keep your numbers low for the (relatively) short time they want you to go back on them.

I can't address the endometrial part of the question because I'm not familiar with that and it never came up in my appointments.

I hope this helps some and maybe others with more information can chime in. Good luck and keep us posted!
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Old 08-28-2019, 04:50 AM   #3
Laurel
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Re: Tamoxifen - 8-10 years?

Marcia,

I personally chose to end endocrine therapy after 5 years feeling their small increase in prevention not worth the side effects. It is your call. Hard one to make on your own. Chose what you are relatively comfortable with and go live your life. That is my best advise!
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Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

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Old 08-28-2019, 06:29 AM   #4
Donna H
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Re: Tamoxifen - 8-10 years?

We all need to do what we think is best for us as individuals. Get as much information as possible and go from there. It is your call to make.
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Old 08-30-2019, 09:51 PM   #5
donocco
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Re: Tamoxifen - 8-10 years?

I looked this p in Pub Med. There was an article in Ther Adv Med Oncology June 18 2018
that addressed this question. The conclusion was that extended Anti-Hormonal therapy with either Tamoxifen or Arimidex (pre-menopausal vs post menopausal) seemed to be more efficacious although no firm conclusions were drawn. It seems they were thinking about late relapses after five years. You have to consider side effects etc so each patient is individual. The conclusion suggested was a general one, not set in stone. Hope this helps.

Paul
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Old 08-31-2019, 03:51 PM   #6
tricia keegan
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Re: Tamoxifen - 8-10 years?

I had been taking Arimidex for eight years when my Onc told me I had done enough and to stop. The following year she said new studies had shown that ten years were better so I should take for another two. I did this but at ten years she said even newer studies were showing that only five years had the same result! I think you've done enough (unless you want to continue) but I don't think I would in your shoes.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 09-01-2019, 11:52 AM   #7
jaykay
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Re: Tamoxifen - 8-10 years?

I took Tamoxifen for 4.5 years and Femara (letrozole) for 5 years after my first bout with breast cancer. 2 years after I stopped, I had a new primary (I call it a recurrence!) tumor in my "healthy" breast. More aggressive than the first and the same pathology as the first.

I always wondered which was stronger - her2+ or ER+. Who knows? Bottom line, I've been back on Femara for 6 years after chemo and herceptin. It doesn't interfere with my quality of life.

Bottom line, it's your decision to make (as many have said). And it's not an easy one

Best
Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 09-30-2019, 06:44 AM   #8
roz123
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Re: Tamoxifen - 8-10 years?

hi everyone
it has been a loooooooong time since I logged on, almost forgot my password! I guess this is a good thing since it means I don't think about BC much these days
this question is certainly very timely.
I have been on Tamoxifen 7.5 years - at 7 years my ONC told me that studies were showing that 7-8 years were as good as 10. She said let's discuss it at your next appointment. Last week she told me that I could stop at 8 years which is Feb 2020. The reasons she gave me is that I was node negative and that most her2 recurrences happen in the first 2-3 years after treatment. Also I don't have breasts and much of the risk at this point is a new BC. I am also now firmly in menopause which I wasn't when diagnosed. I've done a lot of treatment as well. Chemo 6 rounds, Rads, Double msx, Herceptin for a year, zoladex injections for 3-4 years and tamoxifen for 7.5 years.
I think I am comfortable with stopping at 8 (I say I think because I may change my mind when it comes down to it!)
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diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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Old 10-01-2019, 02:09 PM   #9
tricia keegan
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Re: Tamoxifen - 8-10 years?

Roz I think in your situation I also would stop. My Onc stopped me at eight years on Arimidex, but later told me to take for another two years making ten. A year later I heard five would have sufficed. I think we were one of the first to test Herceptin/Hormone pills and for now I think you've done all you could. My Onc told me the same, maybe we'll hear more in years to come but for now I think this is the present thinking.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 10-02-2019, 05:33 AM   #10
roz123
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Re: Tamoxifen - 8-10 years?

thanks so much for your reply Tricia
that's my feeling as well - I actually found a SABCS abstract from the 2018 symposium titled "Incidence of late relapse in Her2+ BC patients receiving adjuvant trastuzumab" the conclusion was
"even without extended adjuvant endocrine therapy in both trials, risk of late relapse in HR+ Her2+ BC appeared to be low, particularly in patients with N0/N1 disease. The benefit of extended adjuvant endocrine therapy in this group of patients, particularly those with no lymph node involvement, may not outweigh the SE of continuing therapy beyond 5 years"
cancerres.aacrjournals.org
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diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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