Anyone "weakly ER positive" and taking hormone therapy?

In one of my path reports I was 8% ER+ and another path report was 10% ER+. My onc's thoughts are that the 10% might respond to the anti-hormonals, thus reducing the chance of recurrence, so I'm taking Tamoxifen. Her thoughts are if you're ER positive, you're ER positive regardless if you're 8% or 80%. Hope this helps!

I'm glad I found this thread, because I'm questioning the need for Tamoxifen for myself. The initial biopsy came back TN (ER- PR- HER2-). I did aggressive chemo before surgery which included 2 drugs used for metastatic disease even though there was no evidence I had any (it was a clinical trial), then had a LMX, with nodes clear and deep clean margins. I also plan a prophy MX on the R breast in 6 months. After surgery, the path report came back that the tumor was in fact weakly ER+, 8%. And my oncologist is adamant I need Tamoxifen, and I've been questioning whether I really do. Is my risk of recurrence really high enough to justify the side effects? He's also sending me for a consultation with a radiation oncologist because he says it's borderline in his opinion whether I need that.

I've spent the past 8 months with the mindset that I was TN and how best to proceed based on that, so it's really hard to know what to do with this new info. The path report doesn't mention doing an Oncotype DX on the tumor, but wouldn't that be beneficial for knowing how much it would benefit me to take the Tamoxifen? I just hate being uncertain all over again, as that was the most overwhelming part when I was first diagnosed. Thoughts or inputs would be greatly appreciated. Thanks.

I'm going for it. I've researched weakly ER+ tumors online and they seem to agree they should be treated as all other ER+ tumors. I spoke with my BS today when I got my staples out. He's not an oncologist, but he only does breast cancer surgery, so he's up on things.

I also like him. He speaks directly, but unlike most surgeons  , he's warm and fuzzy. So we talked, and I asked him for his personal opinion. He said to throw everything I could at this thing, that I had been lucky to catch it before it spread, I'd been fortunate it had responded so well to the pre-surgery chemo, that I was his rock star and to not wimp out on him now. And it was exactly what I needed to hear. Which he probably knew. And I don't care if he was telling me what he knew I wanted to hear, I do believe it was his opinion as well. Which was what I asked for, so into the Tamoxifen trenches I go. Wish me luck.

LuvRVing Here is an explaination of all molecular subtypes and which have a "better" prognosis:

http://ww5.komen.org/BreastCancer/SubtypesofBreastCancer.html

Hi All,

 Looks like it has been a while since anyone talked about TNBC and Hormonal Therapy.  Just curious how innovative everyone's Doctors have become.  I was diagnosed as ER+ (moderate) and Progesterone+ (low) at biopsy.  When the Oncotype test results came back post surgery, they indicated that I had a score of 61 (YIKES) and had been identified as a Triple Negative.  My Oncologist went to a conference over the weekend and heard Dr. Christy Russell from USC talk about her concerns regarding over-treatment. He had originally decided that I should have a more aggressive chemo lasting 5 months.  He changed his mind after the conference, and decided I would do fine with the standard 4 chemo sessions at 3 week intervals.  The drugs are Taxotere and Cytoxan.  Here is the interesting part. Since the biopsy initially indicated that my tumor was Estrogen moderate, he believes that my body was harboring a "hybrid" cancer.  The 2.5 cm tumor that ended up at Genomics for the Oncotype DX test was declared TNBC.  The biopsy tumor tissue was listed as estrogen positive.  My Oncologist wants me to finish chemo and take Femara for 5 years and possibly longer.  So he's actually treating me based on the ER positive status of my orginal biopsy assuming that there must still be Estrogen in my system. While he was at the conference, he had the opportunity  to access the knowledge of a think-tank of experts he consulted regarding my case.  I'm happy because this may mean I'm more protected than the traditional TNBC patient.  On the other hand, I know there are side effects to Femara.  Thoughts?

Picaboandhalo 

Hi everyone!! omg.. I'm sooo grateful for BCO & these threads and ALL you women! 

there's so many of us it seems that have 'weakly positive' and were labelled (maybe not all of us) TN, as I too spent 3mths believing I was TN, as (horrible surgeon) told me this, and that I was NOT able to have Rads/lumpectomy, so had BMX, with 3 bugs out of the OR, still on IV Therapy at home, had humongous wounds right across chest, so Chemo is OUT due to timing, & still would have to wait 2-3mths. Also, NO to chemo due to COPD & RA. All this I learnt at my 1st Onc appt. Now put in for another opinion (3 doctors messed up with me, leaving me a mess for so many things as they would'nt listen to me the 1st week post-op.. had pretty bad infections) So now, I'm to start taking Femara, but am holding off as am in middle of moving & then need to get out of town for a week or so. it's been a nightmare for 10weeks. I want another Onc opinion on this 'weakly positive' business. ER(weakly positive) 1/3, PR-,HER2-. have to say that I AM GRATEFUL he's saying it's NOT TN, as chemo is only choice there (too late for Rads, too late for chemo) so at least I can take 'something' to try to stave off reacurrance.

When asked the Onc, (have 75% good prognosis), what if I take NO treatment & C or BC comes back? omg! He said.. it'll most likely be stageIV, INCURABLE.. oh, but we could slow it down? huh? even with a great prognosis if I don't take the dreaded AI (femara thread.. omg the SE's.. but is supposed to be better than Tamoxifil).

the choice of lumpectomy/rads was taken from me (by surgeon wrong dx), Chemo taken from me due to a few reasons. & so I have no choice of course but to take AI.

want a little laugh? my GP said.. with the 'weakly positive ER' .. oh, you only have a LITTLE BIT OF CANCER.......haha.. can I be just a little bit more insane in dealing with the Med professionals that keep screwing up & can't seem to agree on things? Am trying to get away from my hospital, as through the whole process, I didn't recieve not 1 pamphlet, or support & really didn't have a clue about anything to help, excersizes after BMX? got all info from here & my Bff who's in reconstruction stage. She gave me pamphlets, books etc. AND I'm not even in a tiny town/city..

I'd sure like to get to the bottom of this business of oh, your TN then no no your ER+ (which is better than TN of course)!

yes.. it's so damn complicated and feel the need to go to school to actually figure it all out.!!

blessings to each of you. and sure hope that you all get through it all.

ah.. me too! 

My core biopsy showed less than 1% ER+, PR-, HER2-, grade 3, basal cell. After neoadjuvant chemo, the tumor retested 5-10% ER+ with moderate staining (Allred 4). I was originally put on tamoxifen for two years (started it last March), to be followed by AI for 3 years but my onc mentioned something about a total of ten years at one point.  From what I've read, for the 5-10% ER+, there is enough of a benefit to take it.  I've gained six lbs in 3 months, though, so I am going to have to get on a diet asap. My side effects seemed to peak about a month ago.

Beautiness, I don't know much about ER-PR+ except that it is even rarer than ER+PR- so I wonder how much data is even out there - it is probably a big unknown. I am grateful to be able to take tamoxifen after being told I had a 50% chance of recurrence due to my rather poor response to neoadjuvant chemo.

I enjoyed reading the posts in this thread but am still confused.  I have an appt. with my MO this week to discuss AI therapy.  I am weakly ER+ and PR- like you, christina1961.  Unlike you, I had a complete pathological response to neoadjuvant chemo.  Therefore, they could not test my tumor again as it had COMPLETELY disappeared and there was NO evidence of cancer in my nodes.  A biopsy of one swollen node at diagnosis did detect cancer.

I'm totally happy that I had a complete pathological response which gives me an excellent prognosis but I wonder if my ER/PR status went up (or down) because of chemo as Christina indicated hers did.  I had read somewhere else that the status can change.  I guess I will never know.

My MO will have to do some fancy talking to convince me that the benefits outweigh the risks of taking AIs with my weak ER+ report.  Here's another decision with live-altering ramifications.  Cancer sucks.

babette-I also had a complete response to chemo, yippeee! but also was not able to be retested as they planned for the receptors, my original was 3%er 0%pr her2neg. I am on tamox. I have horrible hotflashes! I am miserable. I can't believe how bad it is! Already tried aromasin, that made me feel like I had the flu everyday. Hopefully tamox. will get better.

Cher-sorry you are having a bad time. Unfortunately if breast cancer comes back someplace other than your breast or breast area, it is considered incurable. But that is true whether you take ai's or not, I think he is suggesting you do whatever you can do to keep it from coming back, and his opinion is for you to take the ai's.

My tumor was initially diagnosed as 84% ER+/PR-/Her2- after the stereotactic biopsy and 83% ER+ in the initial pathology after my mastectomy.  The tumor was sent to Genomic Health and came back TN.  I'm not convinced that I had any ER+ BC.  I wonder, since I had extensive DCIS next to the tumor (1 cm x 1 cm x 1.5 cm) if the pathologist tested the DCIS instead.  Plus, it was the same pathologist who did both tests. My oncologist is convinced that I had both types of BC in my tumor (heterogenous).

I had 4 Taxotere/Cytoxan that ended on July 18, 2012 (no radiation). My oncologist recommended that I take Femara, but also told me if I decided not to take it he "wouldn't be upset."  He gave me a RX for it on August 8, 2012, which I had filled and then didn't take.  When I went backon September 5, 2012, he asked me how the Femara was going.  When I told him I didn't take it, we had a long conversation about it.  It seems his opinion was different on this visit.  :::chuckle:::  I told him I would take it and started it on September 6, 2012.  So far, so good, but it's only been a week and a half.  I'm going in for a L mastectomy and bilat reconstruction on 9-24-12, so I'll stop it on Saturday, 9-22-12, and start it again after the surgery (per my oncologist).

I think my oncologist just wants me to throw everything that I can at the cancer.  He did say that Genomic Health is going to start tracking patients with a dual diagnosis like mine (and yours).

Lori

My initial biopsy attested to HER2+, PR-, with something like 3% ER+. My Monc said that they send low-scoring ER samples off to the Mayo to double check, but that they usually come back negative. So we were/I was operating under the assumption that hormones, and therefore hormonal treatment (I'm 30, childless, single AF but hopeful to meet a DH Someday), were not in play.

Come to find out (fourth chemo) that the Mayo confirms I am weakly ER+. Tamoxifen now in the playbook

Monc told me there are zero side effects to worry about from Tamoxifen because of my age. She is The Breast Lady in town, but everything I read here suggests that Tamoxifen, at the very least, causes considerable fatigue. Monc suggests this is an exacerbation of the Menopause Experience.

I was on Lupron, tho, to protect my grandbaby-makers during TCHP, so I'm no stranger to hot flashes, insomnia, and rando weeping. (Last shot 3/25 ... Weird to be looking forward to having my period.)

Anyone premenopausal who can speak to the SE of tamoxifen? Easier than lupron? Better yet, any weakly ER+ gals who went off Tamoxifen in order to conceive?