Just a wee bit estrogen positive - anyone else?

wanderweg

I'm struggling with knowing which thread to land on here. My story: Both my biopsy and tumor path results said I was ER+, PR-, HER2-. I had clean margins and was node negative when I had my mastectomy, and both my breast surgeon and my MO thought a bilateral mastectomy and 5-year course of tamoxifen would be all I'd need. Then my oncotype results came back, with a score of 38 (high risk). And showing that I had negative scores on ER, PR and HER2. The MO said that my tumor is barely estrogen driven (and unlikely to be helped a whole lot by endocrine therapy). So, while I'm technically ER+, my tumor is behaving as a TN cancer - very aggressive. I have started TC chemo, but wondered if anyone else out there has had similar results?

moth

Hey girl! I'm here too

wanderweg & I are already chatting by pm but I wanted to wave to anyone else who might be in this category.

fwiw, at this point I think I'm not doing tamoxifen

& here's a recentish article that discusses some data about the thresholds where benefit of hormonal therapy seems to kick in http://www.current-oncology.com/index.php/oncology...

JoniB

With my first cancer I was very weakly ER positive (maybe 5%?) PR negative and Her2+. One oncologist dismissed the 5% ER positive as inconsequential. The other oncologist thought I should take Tamoxifen. I was really on the fence and decided not to do the Tamoxifen since it could cause its own cancer down the road. 8 year later I had a recurrence, but I was then strongly triple positive. I don't regret not taking the Tamoxifen and I doubt it was the cause of my recurrence as 8 years had elapsed. I'm now on Arimidex with no side effects.  

wanderweg

Interesting, Joni. I didn't even know cancers could recur with a completely different makeup.

JoniB

Wanderweg, not sure if it was a recurrence or new primary but it was in the exact position and same breast as first cancer. Doctor's called it a recurrence but in the end not sure that it matters as long as it is treated.

wanderweg

Joni, that's so true. The main thing is treating it.

BrinkOfEternity

Wanderweg - Hello, we already talked on another topic but yes I’m in the same category.

JoniB - I saw several who had recurrence with a different type as well but they all wentfrom HR/HER2 positive to negative. Interesting to know it can go the other way too.

sandraNC

I am the same - TNBC but slightly estrogen positive. I did about 8 weeks of taxol/carbo and my tumor (which was 9cm at dx but had clearly grown between then and starting treatment as my breast almost doubled in size...) had been very responsive at first but then stopped...so we switched to AC and two treatments in I felt some new lumps which an MRI confirmed. I also had a positive lymph node. Rushed to surgery a week later for unilateral mx and sentinel lymphectomy. The path was weird as they didn't seem to focus on the "new" growths - my surgeon took the case to several conferences and went back to pathologist for some additional information. They thinks that the new lumps were part of the same initial cancer as all the tissue with cancer cells were consistent. I had about 5% of the cells still with cancer. At any rate. I just finished radiation. The "plan" as best I can remember (I seem to manage to not think about cancer when I'm not at the hospital but that makes me a little forgetful) is 8 cycles of Xeloda and then either removing ovaries or a chemically induced permanet menopause. I think the latter is permanent? I am still in chemo induced menopause and at 46 was already perimenopausal. My notes from my last appointment from MO also say tamoxifen for 10 years. I think my jaw hit the floor when she told me that. I didn't realize until my post surgery MO appt that I would be treated for the slight estrogen positive factor...and I don't know how I feel about that.

My plan, whenever they'll let me, is to proceed with DIEP surgery at Duke, where I'm being treated. But I don't know how all the other suggested treatment outlined above effects that.

I'm very active, normally, and I used to travel a lot for work. I'm so fortunate for a supportive employer but I would like to get back to regular functioning as soon as possible...as we all woud, of course. I just have no idea how to evaluate the treatment options for the slight positive estrogen receptor. So thank you for this thread!