LCIS hormone receptor status

MoodyMoo

New insurance in 2014...and my Lupron/Femara treatment is being denied since I do not have pathology reports indicating my LCIS was estrogen receptive.  Just curious as to whether any of you had your finding tested, and more specifically, if anyone has had LCIS that was NOT estrogen receptive.  

MelissaDallas

They didn't do hormone receptors on my LCIS and I don't recall anyone else here having theirs done either. The NCI new guidelines and recommendation is for Aromasin in menopausal women so that would certainly be standard of care, but I can't remember anyone else here using it in conjunction with Lupron, so don't know about that.

The fact that you had dvt with Tamox and can't take it would certainly seem to be a reasonable argument for the lupron combo.

leaf

They tested my initial core biopsy (showing LCIS) which was strongly estrogen positive and progesterone negative (in 2005).

In this study of PLCIS, at least 11% of their ?31  samples showed triple negative status.

http://www.ncbi.nlm.nih.gov/pubmed/24372322

In this paper of 50 LCIS patients, all were ER positive.

All cases were ERalpha+ and ERbeta+. The staining intensity of ERbeta
was strong and included staining of periductal stromal cells. The median
percentage of cells immunoreactive for ERalpha was 75% and for ERbeta
70% (range 10% weak positive to 100% strong positive.

http://www.ncbi.nlm.nih.gov/pubmed/17543077

In contrast, in DCIS, in this paper, they found ER negativity was associated with a higher nuclear grade.

http://www.ncbi.nlm.nih.gov/pubmed/12713620

MoodyMoo

Thanks ladies...it's as I expected.  The MO is trying to see about getting the sample tested, but if it cannot be done, then she will do a "peer to peer" call with the insurance to see if they will approve the treatment.  I just had a breast reduction done (which ironically the insurance company preauthorized as medically necessary) and thankfully they found nothing worse than the ALH that I already knew I had.  Now is that because there's really nothing more growing there, or because I went the Tamoxifen/Lupron/Femara route.  Guess we'll never know!

lekker

MandyMoo - what about having your onc prescribe it as a prophylactic rather than a treatment?  I remember seeing an article posted on BCO about AI's as a preventative for high risk women.  Tamoxifen (I'm not sure about AIs) is sometimes offered to BRCA positive women to prevent breast cancer even though many BRCA cancers are ER negative so maybe that bodes well for you.  In your case, you're not trying to prevent your LCIS (which isn't considered cancer) from coming back, you're trying to prevent a future cancer.  

Unfortunately, I don't know if your particular case of LCIS would be considered "high risk" enough by your insurance.  Your MO sounds like she knows what to do with the peer to peer review.  After all, I can't imagine she's prescribing meds for you without a good reason right?  I hope you are able to get this resolved quickly.

MelissaDallas

Lekker, it is prescribed as prophylactic & that is standard of care for LCIS or ALH. I think the combo with the lupron is confusing the insurance company since the AIs are only given to menopausal women. AIs don't have the clotting risk that tamoxifen and Evista do. Since she had a clot on tamox they're giving her lupron so she can take the AI. Kind of an unusual situation.

Anonymous

I thought the  new  preventative med  (other than tamox or evista) to take with LCIS was Aromasin. I haven't heard anything about using other AIs with LCIS ( Femara or Arimidex). (would love to read up on those if anyone has any info)

anne

leaf

I will not be holding my breath. 

I have certainly not looked everywhere, but I'm not aware of any trials that specifically looked at LCIS + an antihormonal (no matter which one).  For example, the STAR P-2 study, 9.2% of the participants had LCIS.  From the abstract, I can't tell if they analyzed the LCIS population separately.  Maybe the actual study says, but I can only find information about the group as a whole (9.2% LCIS patients plus 90.8% other.)  Having a significant family history could also have an influence on some LCIS patients and not other LCIS patients, which is not recorded in the abstract.

http://www.ncbi.nlm.nih.gov/pubmed/19213563

In this 2013 meta-analysis of chemoprevention, the trials they look at just specify if a group is at normal risk, higher risk +/- family history.  (In other words, these groups are not just women with LCIS or LCIS/ALH.) 

http://www.thelancet.com/journals/lancet/article/P...

In this article above, they  do state

We obtained individual participant data directly from the trial investigators, so they probably have data, but its not in the paper.  I've heard in some podcasts that some/all journals limit the length of articles, sometimes to 3000 words.I don't know if that is the case here.

Despite their effectiveness, SERMs have not been widely accepted as
breast cancer preventive drugs by high-risk women and their primary care
physicians, mainly because of concern about toxic effects and a
perceived unfavourable balance between benefits and harms.
Unfortunately, at the present time, none of these drugs are being
actively marketed for breast cancer prevention, and approval by the US
Food and Drug Administration or any other regulatory authority for this
indication will probably not be sought for lasofoxifene or arzoxifene

Since LCIS is unusual, they had to group many women who are at higher risk together to get significant results.  LCIS women in the STAR P-2 study could have had vastly different results than other high risk women in the group and not affect the overall numbers.

MoodyMoo

It's funny how the treatment guidelines differ between insurers.  Aetna covered the Lupron with no questions asked, but Anthem has different rules.  I'll definitely update the post as I learn more, as it may help others!  Thanks all for the comments and feedback.  I  am relieved that the reduction only divulged ALH...

MelissaDallas

I was just curious & dug out my path report to see if the receptors were tested & I just didn't remember. They weren't. Just the e-cadherin testing & that my slides were presented at their breast board the next morning.

MoodyMoo

So file this under color me surprised.  Learned today that there appears to be a path report that indicates my LCIS was tested when excised and is ER+/PR+.  Now I haven't seen it yet with my own eyes, and the ultimate test is whether the insurance will accept it.  But it's a baby step in the right direction.

MelissaDallas

Good deal Mandy. At least a step in the right direction.

leaf

As they say in finance, 'The trend is your friend.'  Lets hope this gets things going.

MoodyMoo

And the path is now in my hands...they processed an addendum and added ER and PR status (both of which are the same)

Positive (90% positive, 2+ reactivity)

So I'm hoping now that's all I need.