Insurance problems for LCIS patients

I haven't asked for an MRI (yet), though my onc gave me the 'about 30%' lifetime risk too.  (I have classic LCIS, and dense, but not very dense breasts.)  A 2nd opinion from an NCI-certified provider opined 'I have too much scar tissue <from my breast excision,the only one I've had> to have screening MRIs, even as a baseline.'  Its probably what I get for asking the breast surgeon to 'make sure I don't have ILC' before excision; it didn't occur to me that this would cause scar tissue.  I couldn't even get this NCI-certified institution to send a copy of their recommendation to my oncologist.  I tried at least 5 times, including 3 in person requests. I think they lost the record. Other departments in this NCI-center are fine though. I'm changing oncs this fall, since my present onc is retiring.I don't know how my new onc will feel about MRIs.

Do you have a significant family history?  Some women here have (after many appeals) gotten MRI coverage if they had a first degree relative with bc, or many second degree relatives on the same side of the family.

Certain specific family history patterns are associated with an increased risk for deleterious mutations in the BRCA1 or BRCA2 gene. Both maternal and paternal family histories are important. For non-Ashkenazi Jewish women, these patterns include 2 first-degree relatives with breast cancer, 1 of whom received the diagnosis at age 50 years or younger; a combination of 3 or more first- or second-degree relatives with breast cancer regardless of age at diagnosis; a combination of both breast and ovarian cancer among first- and second-degree relatives; a first-degree relative with bilateral breast cancer; a combination of 2 or more first- or second-degree relatives with ovarian cancer regardless of age at diagnosis; a first- or second-degree relative with both breast and ovarian cancer at any age; and a history of breast cancer in a male relative.

For women of Ashkenazi Jewish heritage, an increased-risk family history includes any first-degree relative (or 2 second-degree relatives on the same side of the family) with breast or ovarian cancer.

About 2 percent of adult women in the general population have an increased-risk family history as defined here. Women with none of these family history patterns have a low probability of having a deleterious mutation in BRCA1 or BRCA2 genes.http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm

Since an MRI isn't mandated by the ACS guidelines for LCIS alone, many insurance companies will probably balk at paying, of course to save money.   I'm sure you know this.

Port's paper is the last one I know about LCIS + MRI. http://www.ncbi.nlm.nih.gov/pubmed/17206485  There's a slightly longer abstract here. http://www.springerlink.com/content/p755k56248g052n7/

I can't figure out how to attach a copy of the .pdf.  If you PM me with your email address, I may be able to send you an attachment.

I also have LCIS and ALH.  My doctor ordered an MRI, which I just had today.  I have BC / BS and if they dare deny this I will rake them over the coals.  I have spent hours, literally, reading about others experiences with LCIS, ALH and other BC types..  Also, I have spent hours reading medical journals, studies, research etc.   I feel like an expert on the subject.  Cancer is not something to fool around with.  I am totally convinced after all my research that LCIS IS CANCER.    I have decided for some time that I am getting  BMX with nipple sparring, DIEP or some similiar procedure.  And I for one, will fight with the insurance company all the way even if I must obtain legal representation.  In my mind if would be foolish not to get an MRI.  We need to utilize whatever tools are available to us, to manage this disease.

What about all those women that will follow behind us? 

Laurie

Laurie

Hi:

I am stage 2 and also have BC/BS insuance.  I get an annual mri (be sure it has been a full year) because the mammo  never picked up the cancer and my breasts are dense (risk).  I never have had a problem.  I do have BC/BS HMO and I have to always get the referral from the primary, but again never a problem.  Could it be the stage difference?  I would have your doctor pursue this.  Good luck!

Susan

Yes, like Minnesota said, my insurance company paid for the PBM but it was questionable for how long they would pay for the 2 MRIs and 2 mammos prescribed to me each year.

I have been "under heavy monitoring" for the last 6 years for LCIS.  I have had MRI's and mamograms every 6 months, alternating (so one per year).  I never had a problem until last year when BC/BS denied my MRI.  Because I had been "clear" for about 3 years, I let it go.  Big mistake.  I had another 3 lumps found in the last month and had to undergo needle biopsies.  I found a new BS who said there was no way she would take no for an answer on MRI's given my risk factors.  All that being said, I'm thinking of going for PBM because all the waiting, testing, worrying, needle biopsies have taken there toll. But, I do think you can challange and win on the MRI with a dx. of LCIS.

     I was just diagnosed with LCIS, and the MRI seems to be OK with BCBS for the more intensive screening. Perhaps checking with the insurance company prior to each one would be the safest way to go, just to make certain they have have all the information they need for the approval.

     We really do have enough stress dealing with the extra screening measures.  We don't need the added worry of opening up letters implying that we may now be responsbible for a test possibly costing over 1K.  

     My experience with BCBS is that a call in advance to them, prior to a procedure or test, can help to make certain all required authorizations are in place.  This has eliminated any subsequent surprise bills, and increased my confidence in their system.  

BC&BS of MA had denied several things during my treatment. First they denied the TE placement part of my BMX. Ended up they wanted a specific code.

They denied the blood draw for my BRCA test (but covered the testing). Not sure how but I did finally get them to cover that.

Now BC&BC of IL I get my estrogen levels checked and they deny the $11 blood draw (but not the test) again. There are 2 codes. BC&BC excepts the secondary code but not the first. WTF. So every 3 weeks I get a bill and have to fight it.

My point is make sure the proper coding is in place.  BC&BS seems to be extremely picky these days. Seems they'll do anything to delay payment or wear you out so you won't push to get it corrected.

Wellness woman, I have regretted that decision many times-and changed BS because of it.  I will never know, I've only had one other needle biopsy-and it was okay, but I'm having a PBMX in 3 weeks because of the uncertainty. Before I had made that decision, my new BS said she would absolutely get an MRI scheduled and precertified.  My last BS, while I loved him, had a very different approach, and frankly, it didn't serve me well.  Be careful about being lulled into (perhaps what we all want) false complacency.  It's not a good thing.  While everyone has to make their own decisions, I'm, after 6 years, no longer willing to take a chance.