Is this possible? Onc says my tumor is BOTH ER+ & ER-

hap_k

Is this possible? Onc says my tumor is BOTH ER+ & ER-

hap_k

Hi,

 I just want to know if anyone has ever been told that one single, small tumor is can HAVE Estrogen receptors and NOT HAVE Estrogen receptors. (Yes, I know I will try to get a second opinion now that I am done with chemo. I am just trying to find out it this has ever happened to anyone else.)

I have not been on here for some time. Got too much to keep up with during chemo.  Small tumor removed in 8/12. PET/CT scan finds no cancer. I finished 4 rounds of adjuvant chemo (taxotere & cytoxan) to prevent reurrence, since cancer removed with BMX. My onc says my tumor was  probably BOTH ER+ & ER-. Say what??? I have searched endlessly but I cannot find any reports/studies talking about one tumor being both Estrogen positive & negative. 

I have tried to ask a version of this question before on the forums. Just thought I would try again. I have had two path reports and 3 genomic tests (Oncotype DX, Mammaprint Symphony, Genoptix Aqua). Two of the genomic tests say that I am Triple Negative. One of the tests says I am ER+ so NOT Triple Negative. My onc says each test is working on a different slice of the tumor. The tumor is probably partly ER positive & partly ER Negative. SO I should take Tamoxifen just in case it would work. That's a lot of side effects for a lot of years for a CHANCE that Tamoxifen might work (because of course it won't if I am really Triple Negative). My onc keeps laughing and saying that I am "mostly Triple Negative." This is crazy-making. 

BTW, even when I have been found to be Estrogen positive, I'm only just a hair over the cutoff line between negative & positive.

Thanks, Hap

stride

Yes, atumor can have multiple types of cancer. The final pathology of my tumor was triple neg, but my oncologist has encouraged me not to think of myself as triple neg because the original biopsy was progesterone positive. She said there can be multiple types in the same tumor. Chemo shrank the PR+, and the triple neg was resistant and grew. Both biopsy and final pathology were ER negative, though.

lostinmo

My original biopsy showed very low er+, but final path from surgery was TN. My MO said that less than 1% of the cells were ER+ and that they just happen to hit those with the biopsy. 

hap_k

Thanks Stride. Wanda, I like your blog. You write well! Both your posts help. I have talked to nurses and been told that they have never heard of tumor that's both ER pos+ & ER neg. Just wondering if either or both of you have been told to take Tamoxifen or an Aromatase inhibitor, on the chance that it might help prevent recurrence & because we might all have a few cancer with ER+ receptors pop up?

Hap

riverhorse

Seems logical if 95% of the tumor cells are ER + for example than the remaining 5% of the tumor cells are by definition ER -   I too had different readings re: ER 95% positive with initial pathology,  9.5 on Oncotype and higher on Mammaprint == I think around 88%.   If a treatment works very well against ER+ cells preventing them from reproducing, but has no effect on ER- cells, then I would think over time there would be more ER- cells surviving and hence the change in percentages or moving from positive to negative. 

All of this of course is always a worry as those of us who are ER+ hope that hormonals will keep us safe from recurrance. 

stride

My onc wants me to take Tamoxifen. The original sample was only 20% PR+ and it was ER-, so I have my doubts about whether I would benefit from Tamoxifen. I'm still trying to sort that out.

hap_k

Stride, I'm in excatly the same boat about Tamoxifen. Puzzling isn't it?

Riverhorse 

You said: "If a treatment works very well against ER+ cells preventing them from reproducing, but has no effect on ER- cells, then I would think over time there would be more ER- cells surviving and hence the change in percentages or moving from positive to negative. "

Yes, studies have shown that this can indeed happen. Tamoxifen fights ER+ but that perhaps leaves more opportunity for ER negative to thrive (if we are going to get a recurrence but we do not know that we will, just that the odds of getting a recurrence are higher TNs, if we are truly TNs...if, if, if). Also metastases do not have to be like the original, primary tumor. They can be ER+ or ER-, but given your point, taking tamoxifen might make them more likely to be ER neg. So I am not rushing to take Tamoxifen, but curious about the choices that other TNs have made & why. Especially curious about those who are continuing to do well without choosing to do Tamoxifen.

Hap

christina1961

I was less than 1% ER positive at biopsy (six samples) then had chemo then mastectomy.  The tumor they removed had 5-10% ER receptors with moderate staining along with triple negative DCIS. One oncologist said all tumors are heterogeneous. My oncologist thinks possibly my cancer mutated to the chemo and became selected for the ER+ cells.  2 out of 3 oncologists I consulted felt there would be benefit to taking tamoxifen so I have been on it almost a year.  I have hot flashes and have gained 10-15 pounds (but I am not sure weight gain is from the tamoxifen.) I went through a period of extreme fatigue while I was getting used to it but I am past that now.  Last month I was two years NED past diagnosis. 

SelenaWolf

I think that I've, also, read somewhere that hormone receptors can suddenly switch.  They don't know why.

InspiredbyDolce

You've all brought up great points.  GenOptix tests in a certain parameter, to help alleviate false positives. The test was developed because as many as 15-20% of patients who are told they are ER+, actually aren't.  I would speak with your Oncologist and look at the information from GenOptix. I felt comfortable using that test as the end all to the debate.  I was on Tamoxifen for 1 week, and when my Onc found out this GenOptix test was available, he jumped at the chance to send my slides there - he even had to package them up and send them himself, as the hospital did not have a contract with GenOptix yet, since it was so new to be requested. He actually spent an entire office day (between patients) arguing with the hospital, calling the lab, and trying to figure out how he could get my information over to them. 

Here is an article from the National Library of Medicine regarding the reliability of receptor status on core biopsy.  http://www.ncbi.nlm.nih.gov/pubmed/23269610

I would also read everyones signature line, as some of those who reported to taking Tamoxifen have themselves listed as ER+, so double check if someone is truly a TNBC when reading and considering their information.  ER+ of course will certainly benefit from Tamoxifen.

Hope this helps you out!

Have a great day!

hap_k

Hi Debra,

I was all set to be convinced by Genoptix Aqua as the tie-breaker betyween Oncotype & Mammaprint about whether I was ER + (according to Oncotype & Path reports) or ER Neg (Mammaprint). 

But what i ended up with were 3 different sets of results on the genetic testing:

• Oncotype           Pro Neg     Her2 Neg                 weakly ER Pos
• Mammaprint      Pro Neg     Her2 Neg                  weakly ER Neg
• Genoptix Aqua   Pro Neg     weakly Her2 POS         weakly ER Neg

So 3 genetic tests, 3 different results!

The backstory:

I didn't trust Oncotype (too limited), so I asked for Mammaprint/Symphony which tests more genes and is the primary genetic test in Europe and the only one approved by the FDA here in the US.  Mammaprint says that I am weakly Triple Negative. So that gave me a problem as to whether I should believe my path reports & Oncotype (all weakly ER Pos) or believe Mammaprint. I wanted/needed a tie-breaker.

The only reason I did the Genoptix Aqua test was because it sells itself as being a tie-breaker on whether or not a woman is ER+ or ER- (very significant for hormone Tx decisions). I didn't realize it would suddenly throw out an anomolous reading on the HER2, saying I was weakly positive for that, but Neg for ER & PR!! Out of two path reports & 3 genetic tests, HER2 had never reared its head until the Genoptix Aqua results. So Aqua is disagreeing with the FISH test which is the gold standard for HER2. On the FISH test I am definitely negative for HER2. This difference on the HER2 makes me doubt my Genoptix Aqua result on ER! I talked with the people at Genoptix. The doc in charge of their testing insists that their tests are right and everyone else is wrong if there's a difference. My medical onc who is also a hematologist talked to their doc also and thought that there was no reason for me to start Herceptin based on their "evidence." I agree.

He does think that if my tumor was partly ER+ as it appears to have been then I should be taking Tamoxifen. Also after I posted my question here I found a peer-reviewed research article saying that Tamoxifen may be helping women who are ER Neg through a different pathway than for the ER Pos women. Hmmm, I am still on the fence. I am getting a second opinion next week.

At this point I am thinking that issues like my high (30%) proliferation rate, being a Basal subtype, and having a Grade 3 tumor are more important factors to consider in my Tx decisions than my genetic tests results which really may not be ready for prime time. There's just too much variability, especially for women who have results that are near the cut off mark for positive/negative. Each test uses different cutoffs. When the costs of these tests come down to where each woman can order 3 different genetic tests, we will see how unreliable these tests are for women with weak scores. Right now most women are only having one or at most two genetic tests. If the get agreement between two tests, they won't have another. Why would they? If they don't get agreement, like me, they will have another as a tie-breaker. But if that tie-breaker is completely different than all the others, then what? Who do you believe? 

Lastly, my onc says that there's a lot of money involved in these genetic tests trying to compete with each other. They are all making claims which have not yet been substantiated. Marketing rules! So when in doubt the medical oncologist must fall back on clinical features and take the genetic testing with a hefty handfull of salt.

So off I go for a second opinion, but in the end, I will probably just roll the dice. Choosing further treatment for someone with my clinical features & weak ER scores seems to be more of a crap shoot than a matter of science. Do it or don't do it, there are no guaranties. 

In the meantime, I am sticking to exercise & diet as my best tools that are in my control. 

Thanks for all your good info, Hap

susan_02143

Thank goodness my hospital considers low ER+ to not be triple negative. After I progressed with minimal mets, we added Faslodex to aromasin and knocked those mets back to nothing. My ER status was less than 5%. I have had a total response to a drug that stops my estrogen expression.

Good luck making your decision.

*susan*

Hope999

I'm in a similar predicament.  Today my oncologist put me on Tamoxifen even though I'm triple negative.  The biopsies came back as 1-4% for one tumour and 5-10% for another, but after the mastectomy (& neoadjuvant chemo) the report said true triple negative.

As  you stated, a nurse told me that latest studies show that it will aid women who are estrogen negative too.  The way my onc described it is that it will prevent the cancer from coming back in the affected area of the removed breast, and also in the other breast, that is uneventful.  She said if it were her she would be taking it herself for the next 10 years.  Even though she's a real B__ch, I trust her judgment.

Let us know what you decide as it seems like I have no choice but to take it now.

hap_k

Hope,

Hmmmmmm--I had a successful bilateral mastectomy. Small tumor, no lymph node involvement, clean margins. I did four cycles of Taxotere & Cytoxan "just in case" it might recur but only because I had a grade 3 tumor & high proliferation rate. The only reason for me to take Tamoxifen is to prevent recurrence elsewhere, but when I use the Predict tool (well researched in the UK, my former home) it predicts very little benefit for me if I use Tamoxifen. And Tamoxifen is NOT without side effects.

Since my oncologist minimized my actual side effects from chemo (though I probably still would have done chemo even if I had known EVERYTHING that could go wrong--the potential benefits seemed clearer), I am betting he's minimizing the side effects (hot flashes do not worry me, but strokes do) from Tamoxifen (and the potential benefits are not as clear--where is the mountain of research that should say that this REALLY helps ER Neg women? So far I've found one article.). So what I am doing is weighing my risk-benefit ratio as best I can and getting a second opinion next week. Not that I'm expecting any more evidence based advice than I have so far received. I wish there was less of a "suck it and see" approach to cancer treatment & prevention of recurrence. So many of us are really left in the dark with assurances, but little hard evidence. 

Whatever your choice, follow where your heart leads and have confidence you've done the right thing for you. I wish you the very best of outcomes!

Hap

Hope999

I really don't want to take it to tell you the truth.  And you've described some side effects that she did not mention.  I haven't had time to research it yet, but like you I'll do some investigating.  The perscription still sits in my purse.

It does seem a bit overboard in your case, and I can understand it for me because they're throwing everything and the kitchen sink at it.  My main concern was that the estrogen was there period, so what would stop it from coming back again and causing more chaos.  That question led to her giving me the perscription (like I'm the damn doctor, lol).

If I find anything related I'll post the link here.