Anyone got conflicting path/genetic reports on ER pos & ER neg?

hap_k

Hi,

Hoping to hit lucky and find someone else who's been in the same boat.

My diagnosis seems to change by the day. I have had 2 pathology reports & 3 genetic tests. They disagree as to whether I am ER + or ER -, my onc says he believes it that each sample is coming from a different slice of my small tumor and that my tumor was part ER pos & part ER neg. Has anyone else been told their only primary tumor is part hormone receptive & part hormone negative? At this point my onc believes I my tumor was like 98% Triple Negative, but just in case it was really a little bit of ER pos (and it was not sampling error), I should take Tamoxifen after chemo (currently in 3rd round of 4 of TC chemo because of Grade 3 tumor & high proliferation rate, Ki67 30%).  However, everything I read says there is no point in taking Tamoxifen if you have no ER receptors. Two genetic tests (Mammaprint & Genoptix Aqua, Oncotype Dx said I was ER pos but very weakly) insist that I am ER neg. I have been searching the internet but can find very little on tumor hetergeneity within a single primary tumor. 

Seems like everytime I see my onc, I come back to breastcancer.or more confused than before. Mainly because my prognosis keeps getting worse. Did not want to be Triple Negative, but being Triple Negative AND ER+? How can that be?

Thanks, Hap

christina1961

It seems to me from reading over the past two years that most of these tumors are heterogeneous.  My tumor tested less than 1% for ER receptors at initial biopsy.  Following chemo and surgery, the tumor was found to be 5-10% ER receptors with moderate staining.  I have been on tamoxifen since last March. My tumor was classified as a Grade 3, KI67 50%.  I have always thought that my recurrence risk would be "front-loaded" since it was a grade 3 cancer, but my oncologist recently told me that since part of the tumor was ER positive, it is also possible that part of it was low grade and my recurrence risk may extend out for that reason.  He added that that's why I was on the tamoxifen. I believe the level of ER receptors for the Oncotype DX has to be pretty high (above 30% if I remember correctly but please look it up as I may be wrong) in order to classify a tumor as ER positive. Also, in the past, levels below 10% ER receptors were considered negative. I was disqualified from one clinical trial for triple negatives because of the 5-10% ER receptors.

I ended up getting two additional opinions after surgery.  This was not because of the ER receptors, but because I wanted to do additional chemo because the chemo I had before surgery did not obliterate my tumor and I was told I had a 50% recurrence risk. Both opinions were from leading TNBC oncologists - one said that I was ER positive: "positive is positive" and the other said that the tamoxifen was not that likely to help and that my tumor would "behave more like a triple negative."  She added if the side effects from tamoxifen bothered me I could probably quit taking it. So apparently there is disagreement among the experts. Hope this helps - if you have any other questions, fire away.  I'm not on here that often lately, but I'll be glad to share my experience.

besa

I don't know the answer to your question but in terms of lab tests I am wondering if, because of the way the tests are run and their limits when it comes to sensitivity, you are getting just slightly different results and the "no receptor" result and the "very little receptor result" are actually the same thing.  A theoretical example of having 5 estrogen receptors/cell-- one test can't measure below 20 receptors/cell so anything below 20 is reported as negative.  A 2nd test is more sensitive and can measure down to 2 receptors/cell so a score of 5 is reported as 5 receptors/cell and slightly positive.  The question for me would be even if there is a tiny amount of estrogen receptor on the cell - is it worth treating with tamoxifen?  Would there be any benefit?  Personally I would get a 2nd opinion.   Just a thought....    

KimD

I was dx'd with DCIS in 2011.  At the time my biopsy path report said I was strongly ER+ and PR-.  I didn't get treated.  I recently went back in and had another biopsy because the calcifications had increased on my mammogram.  This time the path report said it is still DCIS, but that it is now ER-, PR+(only 1%) and strongly HER2+.  I asked the surgeon and she said receptors can change.  One other factor is that I had only been off HRT for about 4 months at my first biopsy, so maybe that had some effect.

Did you ever find out anything about your hormone receptor change?

neugirl

I was highly er > 90 and pr posItive > 95 on biopsy. Where i am treated at sloan they dont retest the surgery sample for er and pr. But on my oncotype my er and pr were not as high. Er was 7.5. Cut off for negative is 6.5. Pr was 8.5. Positive goes up to 12 or something. None of doctors could or would explain why there was a difference

hap_k

Hi All, I got a second opinion from a respected oncologist. He shakes his head at the conflicting genetic tests & says that they seem to be using different cut off points between Pos & Neg. Well, duh! He agrees I'm probably ER Neg, hence Triple Neg, but then leaps to..."Why not just try Tamoxifen or Arimidex? Of course, there are side effects."

I'm thinking to myself, "Tamoxifen is a known carcinogen according to the World Health Organization. It can cause lung & uterine cancer. That's a killer, not a side effect. A hot flash or a headache is side effect."

Then I remember how I was told that Hormone Replacement Therapy was good for me. Great stuff, until they found out it was not so great. Up until that point, the benefits outweighed the risks. Now it's the other way round. Will Tamoxifen end up the same way?

Don't mean to sound discouraging to anyone who is convinced. More power to you! I just wish I had that degree of confidence in the advice I'm being given. They cannot even figure out whether I am ER Positive or Negative. Or failing that, they cannot show me data that proves that Tamoxifen (or the AIs) works on both Positive & Negative. 

Hap

april485

Hi hap k. I did not have conflicting ER/PR results but wanted to comment on the tamoxifen cancer rates. They are extremely low at <1%. It has been around for over 30 years and has been tested and retested and found to be relatively safe for the majority of people taking it. There are very few drugs that are not without risks. It is all about benefit v risk in this case. I am still on the fence about taking any AH's and have not started yet although I will likely try taking them because I am strongly ER/PR+ so I will benefit from the drugs. But, tamoxifen while a powerful drug has kept recurrence low for many people and has been preventative for many BRCA positive people as well.

Best to you!

Michellefrancis35

my mother was diagnosed with er- pr- and waiting on her2 results.she was told she is stage1 grade 3 .and now she needs chemotherapy because no tablets will work.she had mastectomy on her right breast where the cancer was found 19 mm . we are stressed out and wondering what is the survival and if it is curable.we were told icky we do mastectomy we donth need anymore treatment and now I'm hearing chemotherapy is required.any advice