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Old 09-20-2013, 01:58 PM   #1
IrvineFriend
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Tomoxifin as preventative medicine

I come from a long line of BC. Both Mom, Sister, Aunt, Great Aunt and myself have had the disease all premenopause. My younger sister found something and has MRI and ultrasound scheduled. Her doctor is suggesting she take Tomoxifin even if he finds her scans are clean. Has anyone heard of someone taking this who does NOT have BC, but has a long family history? Also, he said he could refer her for a double mastectomy for preventative measures if she would like to do that. She does not!
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 09-21-2013, 08:23 AM   #2
roz123
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Re: Tomoxifin as preventative medicine

yes I have heard of tamox as a preventative
I know she said no to a prophy bi-lat msx, I understand that the thinking this is extremely drastic when there is no diagnosis, however going on tamox has its issues aswell. It is a heavy duty drug with many many SE - its tough for people who have had bc to stay on it
maybe she can opt for really aggressive screening (every 6mos) due to family history
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Old 09-21-2013, 09:47 AM   #3
'lizbeth
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Re: Tomoxifin as preventative medicine

There was this post earlier on the board:

http://www.news-medical.net/news/201...st-cancer.aspx
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Old 09-21-2013, 11:01 AM   #4
AlaskaAngel
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Re: Tomoxifin as preventative medicine

Your family history and mine are pretty much the same.

Using tamoxifen as a preventative for those who are most likely to benefit from its use makes sense.

The question is, which patients get no clear benefit from tamoxifen, while still taking on any problems associated with it?

The link posted by 'lizbeth shows that some health care professionals are paying attention to such studies as those of the Karolinska Institute in regard to using breast cancer density to try to determine which patients benefit from tamoxifen. (Google Karolinska Institute and breast density and tamoxifen.)

I think I was one of those women who benefitted significantly from using tamoxifen. I also think that using the drug only short-term worked for me, for the very reasons outlined by the Karolinska Institute. If they are right, once repeat mammography shows that breast density has disappeared, the loss of density likely is an indicator that the tamoxifen has been effective and in that case, one likely wouldn't have to be on it long-term.

I was either pre or perimenopausal at time of diagnosis and did have chemotherapy and radiation first. And there is no way for me to know for certain whether taking tamoxifen alone before my cancer developed would have prevented my breast cancer.

But the key there is that my breast density did not change at all with chemotherapy or radiation. After I'd completed those therapies, my mammogram still showed dense breasts. However, within 3 months of being on tamoxifen, my breasts were extremely clear.

What I am saying is that maybe if your sister has repeat mammograms every 3 months, she could literally see whether she is someone who is benefitting from tamoxifen use or not. If her breasts continue to be dense, then perhaps some method of becoming at least temporarily menopausal might be another measure to use (along with the tamoxifen). If her breasts remain dense after both of those treatments, then perhaps the tamoxifen does not work for her and she could consider discontinuing it.

A.A.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 09-26-2013, 07:38 AM   #5
LeahM
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Re: Tomoxifin as preventative medicine

I was at a conference last night where they talked about this. The called it chemoprevention and said that women at a high risk of developing breast ca are often given Tamox as "risk reduction" measure. So I just wanted to chime in too and say that yep, I have heard of it.
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Old 09-26-2013, 04:35 PM   #6
rachelhmmd
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Re: Tomoxifin as preventative medicine

Because both my mother AND my father had breast cancer, I took tamoxifen prophylactically for five years. I tolerated it well; perhaps the only side effect was a lighter menstrual period (who's complaining!). But, the year after I finished my course, I was diagnosed with breast cancer. Some of my docs called me a "tamoxifen failure," but my ever sunnysided oncologist said that perhaps I would have gotten it sooner, that it would have been more advanced, etc. I'm still glad I did it, because if I hadn't, and I developed cancer, I'd be kicking myself.
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Old 09-26-2013, 04:45 PM   #7
IrvineFriend
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Re: Tomoxifin as preventative medicine

Hi Rachel, I'm curious. Was your cancer ER/PR positive? If so, what was the %? Breast cancer runs in my family big time and my relatives were ER/PR+. I had two types of cancer, one of which was ER/PR- (the predominant one) and the other had a very low ER/PR receptor number, like 8%. I saw a different Onc. today when I went in for Herceptin and he doesn't think I should be taking Tamox. at all because of increased risk of uterine cancer. Doesn't think the benefit outweighs the risk in my case because the majority of my cancer was the ER/PR- one. Anyone have thoughts on this? My Onc. is on vacation so he had someone overseeing chemo this week. Hate when they disagree, as it leaves me very confused! Personally, they can have my uterus, I don't really have a need for it.

Thanks everyone!!!!

-Julie
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 09-26-2013, 04:51 PM   #8
rachelhmmd
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Re: Tomoxifin as preventative medicine

My cancer was ER+ (about 90%), PR-(<5%) and of course HER 2pos. I was not yet menopausal, and my oncologist even considered putting me back on tamoxifen, but I just lost confidence in it. So, after taxol/herceptin, I had my ovaries out and went on femara.
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Old 10-09-2013, 07:04 PM   #9
linn65
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Re: Tomoxifin as preventative medicine

Hey there,

How old is your sister? I had the BRCA 1 & 2 test done. First, so my sisters would know if they should be tested. Second, whether I should remove my right breast too.
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IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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