Receptor status question

KimD

Hi all.  I had a biposy in 3/11 that found ER+(all scores were 3 or 3%)PR- DCIS.  I procrastinated and had another biopsy of same area by a different breast center in 10/12.  That finding was ER- PR+(1%) HER2Neu positive DCIS.  When I previously questioned the BS how the results could be different(he did the 1st biopsy)he said that the second pathologist may have mishandled the sample and let it sit too long before testing.I had a mastectomy 5/13.  The pathologist didn't test the receptors, but used the 3/11 biopsy receptor results.  I called the BS office and asked if they could still have the receptors tested.  The pathologist agreed to test for ER and PR.  

I just received the results and the new results are ER- PR-.  

How do I know which results are correct?  Does it matter.  I read that ER- PR- HER2Neu positive is particularly aggressive and likely to recur. Since the pathologist didn't originally run the tests on my surgical specimen, could his tests be wrong?

Also, I was on HRT when I noticed the thickening in my breast back in 2011.  I immediately went off hormones.  Could going off the hormones cause my DCIS to have to feed off different receptors?  Did my HRT use have nothing to do with my DCIS?

Sorry for all the questions.  tThanks in advance for any light you can shed on this area.

Kim

Annette47

Not an expert, but I do know that most tumors are not homogenous, so it's possible to get different results from sampling different parts of the tumor.    And really, 3% positive is barely positive to begin with so to get different results that show 1% or negative is not really a big discrepancy (for comparision, mine was >90% positive so if a second sample showed negative that would be a much bigger difference than what you're seeing).

I'm not sure that triple negative DCIS is as aggressive and likely to recurr as triple negative invasive cancer (from my understanding the two act very differently), plus with a mastectomy, assuming clean margins your risk of recurrence should be very low regardless of the receptor status.

No idea abot the HRT, but I would guess that with that much DCIS, it had been growing for a long time already, so I doubt that going off them could have changed the receptor status as the cells would already have existed, if that makes any sense.  Since your DCIS is either negative or barely positive for estrogen, I would suspect that the HRT was unrelated, but maybe someone more knowlegeable could address that.

KimD

Thanks Annette47.  I guess I am just nervous because I read In Dr. Love's Breast Cancer Book and in other places online that DCIS that is ER and PR negative and HER2Neu positive is particularly aggressive and has a higher recurrence rate.   

I am also debating whether to have a second opinion on the surgical pathology to be certain there was no invasive component since the DCIS was so large and because the pathologist also found isolated tumor cells in my sentinel lymph node.  

deb1973

Hi Kim,

I can't speak to the likelihood of recurrence, but I also had a huge area (10 cm) of DCIS &, for me personally, getting a second and third look by outside pathologists is/was a necessity for peace of mind b/c I was also worried about someone missing the proverbial needle in a haystack. It's easy to do &, at least in my case, it made me feel better.

Hope you are able to find some good guidance on your questions.

KimD

Thanks deb1973.  My mammo, US and MRI said I had 9cm of DCIS, so I was surprised when the path report after my surgery found only 4.5cm of DCIS.  

How did you decide on a pathologist for your 2nd opinion?  Many recommend Dr. Lagios, but my insurance won't pay and I just can't afford the out of pocket as my deductible was $10,400 and I am out of work at the moment. 

deb1973

Hi Kim,

So far I've only sent my slides to MD Anderson, which was luckily covered by insurance.

I also am planning to send them to Sloan-Kettering because they have designated breast cancer pathologists.

I've heard good things about Dr. Lagios (I love the idea of being able to ask questions during a phone or in-person conversation), but totally understand about insurance issues.

By the way, I think it is not unusual for the MRI to predict a bigger area than actually exists.

That is great news that in your case it sounds like they got clean wide margins. Hope that someone is able to post something about triple negative DCIS that puts you more at ease. From what I can tell, it isn't very widely studied. With many DCIS cases (myself included), they don't even test HEr/NEU status.

Good luck,

Deb