Treated as TN, but offered Tamoxifen for slight positive PR?

I am not pr positive but slightly er positive and my mo wanted me on tamoxifen. I couldn't tolerate it. Tried aromasin and one other. They all hurt my body so bad I couldn't move in the morning. It would take me 2 to 3 hours after waking up to work out all the pain and stiffness. You could always try it like I did, maybe you won't have the bad side effects. It is hard to keep taking something when you do not know if it is benefiting you. My doc felt very strongly about it though. I just couldn't do it, even though I really wanted to.

I had TN diagnosis, lumpectomy and radiation in Germany earlier this year. The very unusual aspect of my diagnosis was that the postsurgery analysis showed that the tiny tumor was Triple Negative Grade 1, although definitely IDC and not "in situ" and also positive for basal cell. My German team reassured me that they had run many tests to make sure that was correct, and on that basis decided that chemo would not be called for, "would do more harm than good".

Maybe I should have insisted on a second path opinion? Oh well, oh well... Fast forward to July. We moved back to the States and my oncologist here was very upset that there was no second opinion "but the chemo window is closed, it doesn't matter now". (Sort of glad, but sort of nervous...) We requested the tumor block from Germany anyway so it could be retested for hormone receptors. "If it's really Grade 1, maybe it's not really TN."

STILL waiting for the tissue to arrive (!), but am thinking about what my response will be if the retest shows 1-2% receptivity to hormones. Can't imagine taking that "hormone chemo" for five to ten years with just a tiny sliver of increased positive outcome, if it isn't actually outweighed by the effect of the drug on the rest of the body. No cancer, but major cardiac issues, for instance? Each doc wants to throw everything at the problem that's their specialty, without really considering the total long-term impact. (Just my impression, probably exaggerated...still, you all have had these same thoughts from time to time, right?) I can see I have my research cut out for me!

Any comments or suggestions welcome! I'm feeling great, back in shape (which took some doing living at 7000 feet!), busy with life---and last week, my first mammo since radiation showed nothing suspicious in either Girl. Tumor marker blood test came back negative too. (I know that none of these tests are definitive, but hey...first hurdle cleared!)

hey ladies, Im almost 38... and I was diagnosed with bc on sept 10th, had partial lumpectomy on oct 15th, I am now learning all the details of the beast.  Turns out I too will be treated as TN, but I learned this morning that I have a "slightly" positive receptor for tomoxifen....and they are thinking I may benefit from it.  I am starting my chemo at the end of next week.. and as terrified as I am I just want to get it all started.  I really think its important to have an outlet such as this to share and discuss individual stories, I have been on here and reading but I didn't join until today. Looking forward to reading and seeing everyones stories

Hello Nostrilb and ladies

My oncologist told me that Tamoxifen does work on the progesterone receptor too.

The link below, which I found online, discusses alternative splicing and the progesterone receptor.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2481493/

The reason I didn't take Tamoxifen was because I developed blood clots on chemo and because I knew I had Herceptin for the HER2+ element of my tumour.

Best wishes

Alice

CRams,

After surgery they found that my residual tumor (I had neoadjuvant chemo) was 5-10% ER positive.  I consulted with two additional oncologists out of town that focus on triple negative BC. 1 of the 2 specialists said if I had side effects from tamoxifen I could probably quit taking it but the other one, along with my MO, strongly pushed for tamoxifen, most likely for 10 years.  I have been on it a little over two years now.  The first few months I was really tired but that seems to be gone now.  I have gained 15 pounds, but really haven't tried to lose it yet.  It is definitely tolerable for me.  I have hot flashes but I am taking vitamin E for those.  My doctor did prescribe Effexor for the hot flashes but I didn't want to take it, so I just deal with it.  It helps to take 1 pill in the morning and the other at night.  Most of the hot flashes I get are immediately after taking it. 

I am new here.  I am Stage 3, diagnosed July 2013.  I had neoadjuvant therapy.  4 treatments of AC every other week followed by 12 treatments of Taxol weekly .  Had a mastectomy on right breast in February 2014, then 25 treatments of radiation.  Am having reconstruction ( Litissimus Dorsi Flap) on July 28th.   All that said, I am what my radiation oncologist calls essentially TN.  2% ER+, PR-, HER2-.  My medical oncologist wants me to take hormonal therapy for 5 years.  He started me on Arimidex, but I could not tolerate the side effects.  Now he wants me to take Aromasin.  My RO says he things the side effects are too bad considering the small to no benefit I would receive.  Have not started the Aromasin, yet.  Any thoughts?