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Hormone Therapy for slightly positive ER/PR?

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Forum Name: TNBC Talk
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Printed Date: Feb 23 2020 at 2:18am
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Topic: Hormone Therapy for slightly positive ER/PR?
Posted By: TNBC#2
Subject: Hormone Therapy for slightly positive ER/PR?
Date Posted: Nov 07 2019 at 11:49am
I recently had a triple negative recurrence after 14 years from my first diagnosis.  This time we did a mastectomy and chemotherapy, but now my oncologist is suggesting that taking one of the hormonal therapy drugs like Tamoxifen could have some benefit because I had a slight expression of hormone in my triple negative tumor.  I think it was 10% positive, so still technically triple negative.  Has anyone else taken the hormonal therapy drugs as an added precaution?  

Posted By: Marymom
Date Posted: Nov 07 2019 at 4:28pm
Hello...originally I was told I was not tripneg and then they came back and said I was.  I often wonder...if I had a slight expression of a positive and I wondered if a hormonal drug would be helpful.  As a matter of fact, now that you brought this up...I am going to ask at my next visit.  

Thank you!

Posted By: TNBC#2
Date Posted: Nov 07 2019 at 7:02pm
Let me know what your oncologist says.  I see two different oncologists and one thinks it could be helpful and the other does not.  I re-visited my pathology report and it was 10% positive.  I was still labeled triple negative and did the aggressive chemo again, but if this can help prevent a third recurrence I'll try anything at this point.  I read some studies online and there are a few floating around that indicate a 6 to 10% positive expression of ER or PR is worth treating with the hormone therapies.  

Posted By: Marymom
Date Posted: Nov 07 2019 at 8:19pm
I will let you know.  I go back in January.  May I ask...did you follow any special diet or take any supplements after your first diagnosis?  Just curious..I have a cousin who is 15 years out and I am approaching two years out.  I have another cousin who is still in treatment.  Three cousins trip neg.  Our mothers were sisters and no breast cancer in our family...we are BRACA negative as well.  So, if you would not mind sharing...I would greatly appreciate it.  My cousin who is 15 years out...told me she did not change anything in her lifestyle.  Some days...I forget I even had it.  I pray for those on this site everyday...

Posted By: TNBC#2
Date Posted: Nov 07 2019 at 9:22pm
I am 15 years out now from first diagnosis, 10 months out from recurrence, or most likely a new primary cancer.  I was 31 years old the first time I was diagnosed and I did change my diet at the time to eat lots of power vegetables, green tea, Vitamin D, and any and every antioxidant I could put my hands on.  After a decade passed and I was considered cured, I got busy with life and was not health conscious like I should have remained.  I also had genetic testing (three times now in 15 years) and even with the latest testing no genetic mutations were found in my testing.  I had really gotten to a point in my life I didn't give cancer much thought other than when I went for screenings twice a year.  My case was brought before a tumor board because triple negative shouldn't recur after 14 years.  However, the new tumor was in the exact spot of the original cancer and had the same pathology (had lumpectomy first time).  This tumor was small and detected on mammogram but also was invasive, it popped up out of nowhere and very quickly.  This time I had a bilateral mastectomy and chemotherapy.  (Carboplatin/ Taxol).  Had reconstruction last week so looking forward to closing this chapter and praying I get another 15 years (or better yet, a lifetime)  with no issues!  I had many more complications with chemo this time and I want to be proactive in reducing my future risk so I don't have to put my body through that again.  Hope you get good reports when you go back in January. 

Posted By: Marymom
Date Posted: Nov 07 2019 at 9:50pm
Thank you for sharing.  I was stage one and 1.6 cm, no nodes. Lumpectomy, ac/taxol with 20 radiation treatments...I went to Sloan.  No complications...other than hair loss.  I was very fortunate...never got sick and no remaining side effects.  I was 56 years old. So, now I eat mainly veggies and take supplements...mushrooms, turmeric and vitamin D.  I eat a very small amount of organic beef and chicken.  I drink green tea...never liked it before and still do not👀but, I drink it.  I have one cup of coffee a day-I canít quit that!  No drinking. Thank you...from the bottom of my heart.  You have been very informative...and you have given me a wonderful dose of hope! Sorry you had to deal with this at such a young age...your are inspiring.

Posted By: strongtogether
Date Posted: Nov 07 2019 at 11:17pm
Thank you both for being helpful

Posted By: sophie
Date Posted: Nov 08 2019 at 3:58pm
any of you considering immunization therapy or taking xeloda to reduce recurrence?

Posted By: Marymom
Date Posted: Nov 08 2019 at 4:58pm
Now that I am out of the storm of treatment and getting my life back...I am going to ask about immune therapy during my January visit.  I will report back to you all!💙

Posted By: Kellyless
Date Posted: Nov 08 2019 at 5:01pm
Hey there TNBC#2, welcome to the Unicorn club, so very sorry you qualify. When I had my recurrence 7 years after the first my oncologist started calling me the unicorn. Mine was the exact same place, pathologically the same. I went to MD Anderson where they see more TNBC patients (more cancer patients in general) than almost anywhere in the world. I asked my doc there why there's no standard regimen established - no studies at all for our situation! He said there's no patients to study. They so rarely see it there's no way to study, to compare. it's good news for most people! he also said it's very possible I and others in our situation have mutations that haven't been found yet. Both MDA and my local research Hospital are scouring my DNA I'm told, see what can be found. They've identified quite a few mutations since my first go round so it's certainly possible. 
The end of this month I'll be 3 years out from recurrence. I too did Carboplatin and Taxol then mastectomy (PCR or I would've done Xeloda). Blair ( @cheeks on here) is another unicorn (10 year gap? Something like that), she should be coming up on 2 years soon. 
Were you at 10% hormone positive the first time as well? 

IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!

Posted By: dono7392
Date Posted: Nov 29 2019 at 12:32am
Hello all. Did you all do these dietary changes and supplements during chemo or after? My oncologist says no to any antioxidants during ACT therapy but I really want to do SOMETHING in hopes of preventing recurrence and side effects from treatment.   

Posted By: Kellyless
Date Posted: Nov 29 2019 at 1:52am
There are supplements you can take that prevent the chemo from working. Fish oil is an example. During chemo it's best to hold off on the herbs and supplements and let the chemo do it's job. Remember, chemo is the one thing we KNOW kills our cancer, Don't risk screwing it up. Afterwards you can work with your doctor on what is safe, but for now know that you are doing the thing that best prevents spread and recurrence. 

IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!

Posted By: Marymom
Date Posted: Nov 29 2019 at 6:18am
No...I was told no supplements during chemo...because it could interfere with it.  Kellyless said it really well.  Let the chemo do itís job.

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