ER - 3% - Tamoxifan?

Suze35

I figured I would start a separate post as the TN thread moves so fast .

Based on my biopsy, one of my tumors (3 samples) is TN across the board.  However, the other tumor had 1 out of 3 samples show as ER - 3%, PR - 0%, and HER++.  We ruled out the HER with a FISH test, but that 3% is still hanging around.  Given the pathology of the other tumor, my Oncologist is confidant with the TN diagnosis, but has told me that after surgery we will discuss the possibility of my using Tamox - the pros and cons.  I'm assuming that is because she is waiting to see if I get a pCR, or if not, what the pathology is then.

Is anyone else slightly ER+ and looking at taking Tamox?  If so, did your doctor give you the statistical benefits of doing so?  I know mine will....I'm just impatient, lol.

Anonymous

Hi Suze.

I'm in the same boat, my er was + but only 1 to 2%.

The docs I've seen also told me I'm a triple neg but I've been wondering about that little percentage and if it could mean anything for a customized treatment. The rad. onc. I saw last week told me no, flat out, but I'll be seeing a new med. onc. after my surgery and want to know what she thinks.

I'm very interested in what your docs say to you.

We have to keep each other informed it seems. I'm newly dx (11/23/10) and that much has already become clear. In fact its on;y been a week since I got my path report and learned I'm basically triple negative.

I can't say enough about this board to help me understand many things.

Thanks for this thread!

Suze35

Michelle,

I'll be sure to update when I've talked more about this with my doctor.  I think she believes it may help because the one tumor that was 3% ER did not respond quite as well as the other one, but just by a little.  I doubt I'll do Tamoxifan if it only a 1-2% boost in survival, but we'll see.

I'll let you know when we decide .

Blindsided

My initial stereotactic core biopsy showed a 2% ER+, but the post surgical path report was TN.  My oncologist considers me TN, thus I'm currently receiving chemo, and then 6 weeks of radiation.  She hasn't mentioned Tamoxifan, but now I'll have to ask if it would be helpful!   

jacee

My onc told me there's a certain determination or level that if you are above you are ER+, and if below you are ER-. Didn't matter if you were 99% or way less. You either are positive or not, and the % doesn't matter. Has any one else been told that? I was 97% + so didn't have any reason to question.

Jainey

Hi Suze! I am ER+ highly 90% ... I am told to take Tamoxifen ... after all it is free if I get my perscription filled at the Cancer Clinic .. I did my research and I will not even take it for one week because of the side effects ... I have consulted my Naturopathic Oncologist and he has put me on natural supplements combined with a very strict diet to help control the estrogen. The biggest part of the program is eating fresh ground flaxseed twice a day so that the lignans can keep the estrogen away from the hungry cancer cells. My girlfriend is TN and she swears by the flaxseed as well ... her surgery was one year ago and it has not returned. Jainey

lago

According to my path report if you are 1% or above you are considered positive. I think someone else here was told by their onc that it's like being pregnant, you are or you aren't. No such thing as being a little pregnant.

My PR was only 3% and I am considered PR+ (ER+ is 30%)

TifJ

I think I have posted about this before, but can't remember! I am 3% ER+ and was told I am negative and therefore will not be receiving Tamoxifen. My onc. says it will do me absolutely no good and not worth the sied effects.

EleanorJ

My path report stated <5% ER+, that was for the core biopsy, surgery came back TN. My onc tried to convince me to take Tamox, no way I would go near that stuff, not for that small %. I'm 1.5 y past tx and I'm doing great and don't have a daily cancer reminder as I pop a pill that gives nasty SEs. I think to some extent it's a matter of choice. Some people feel they have to do EVERYTHING in their power to help a recurrence even if that something will afdd 1% of survival. I chose to change my eating habits, cut sugar, processed food and go a more natural, local, organic route than to take pills. But that's my choice and I feel confident about it. And I'm only 35 (I don't know if that would help in your decision). Good luck.

pennylane

For me a fascinating topic....My pathology report read 5% er positive and back in 2005 tamoxifen was not an option for a mere 5%....Now, I read here it is suddenly a consideration....I wish I could find more information about new er standards but BC.org is the only place I have seen this discussed.  The nurse-practitioner I saw last month was a great guy but did not have a clue about this topic...The brain trust here is so amazing...

lago

pennylane I do remember reading somewhere that there isn't a standard for where the positive/negative status number starts and ends… but I have only in one place so I'm not sure how true that is.

I did come across this:
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When should you ask for a numerical score?:
If your hormone status tests are scored only as negative, it is good to ask your doctor for a number that indicates the actual score. Even if the number is a low one, these kind of cancers may effectively be treated with hormone therapy.

Scores on these tests:
On your pathology report, you may see the scores for Hormone Status. This is expressed as a number between 0 and 3. Here's how to understand the numbers:

* 0 is no receptors found,
* 1+ is a small number,
* 2+ is a medium number, and
* 3+ is a large number of receptors.

What is the percent of hormone receptors?:
You may also find the number of cells out of 100 cells that tested positive for hormone receptors. This is written as a number between 0% (no receptors) and 100% (all cells have receptors).
Source: http://breastcancer.about.com/od/diagnosis/p/hormone_status.htm

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Suze35

Thanks everyone - and Lago, thanks for that info.  I'm going to seriously weigh the percentage of benefit versus the side effects, but may also consider giving it a shot and seeing how my body handles the Tamoxifan.

I'm not inclined to do it for a 1% benefit, but then, with three young kids, every percent might look good. 

I'll keep everyone posted!

josephine_

Josephine here,

 My core biopsy had an ER score of 4/8, PR and Her2 were negative; however the removed IDC was negative for all three receptors (and repeated twice).  I agreed with my oncologist to go with Tamoxifen as it was my belief that if there was benefit it might prevent a recurrence.  I really hated tamoxifen (check my posts) and spent a year having broken sleeps.  This December my persistent cough of 4 months (chest X rays clear, tumour markers clear etc. etc..) turned out after an enhanced CT scan to be a recurrence to lung and rib bone.  Now I chuck those tamoxifen tablets in the bin.  But I am gald that I took them, because I would have always wondered what if?  having had the recurrence.  Tamoxifen is a partial antagonist and the science is not really understood.  The active moeity is a metabolite of the drug, and there are two ER receptors.  Obviously the more receptor the more likely it will be triggered on a cell, but you do not need to engage all the receptors to get a signal; in other words histology will just tell you expression of the receptor, not how functional it is.

Not sure if this helps Suz, but I was always hoping my IDC had some ER receptor and that a hormone based drug would be effective

Josephine

IDC stage 1 0/11 nodes June 2009, recurrence Dec 2010 to lung and rib bone

Blindsided

spoke to my oncologist today,she said that the 2% ER+ on my core biopsy, ( Neg on post surgical report) would NOT benefit from hormonal treatment ( in my case it would be arimidex)  Oh well, it was worth a shot...

TifJ

I'm with you Blindsided! I was hoping my 3% ER would warrant something, but the onc says no.

Letlet

Sigh. I am super confused. I am ER- and my PR is 60% and my onc definitely wants me to take Tamoxifen after all my treatments!!! What is the point? I was told by an oncologist friend that it's because my PR was positive...does that make any sense at all???

Cleb

Blindsided:

I just finished  four months of dose dense ACT and am tn across the board.  I had my last chemo on 1/12/11 (YEAH) only to have my onc tell me that because metaplastic bc usually doesn't metastasize through nodes (I was node neg stage 2 grade 3) that I will need tamoxifen for 5 yrs!

Knock me down and call me shorty.  I don't see how it will help keep it out of my other breast.  I was originally diagnosed stage one but when the tumor was removed it was larger than they thought.  I think I would have had a mastectomy had they  told me it was metaplastic stage II.  I know I would have gotten chemo first before surgery if I had a correct measurement of the tumor prior to my surgery.  I am dazed and confused.