UHC denying medically necessary cancer genetics testing, which was the second option since they wouldn’t approve a mammogram.

[u/bucklekitty]

Hello,

My mom had breast cancer at 32.

My father had skin cancer at 48.

My grandmother had ovarian and thyroid cancer before the age of 30.

I have already been Dx’d with moderate atypia of the skin which has required two MOHS surgeries

I have already been Dx’d with a BIRADS-3 breast mass and a TIRADS-4 thyroid nodule. I have also had precancer of the cervix, which required surgery. It progressed from CIN 1 to CIN 3 in a matter of three months, which is almost unheard of.

This all led my OBGYN to order a mammogram for me. This was denied.

She finally said fuck it, we will send you to a geneticist - if you test positive for BRCA or other relevant cancer genes, your insurance has to approve other testing and procedures for you.

But United just denied the testing ordered by the board certified geneticist because it wasn’t medically necessary.

So what now? I waited 7 months to see the geneticist and another month for the test to get denied. I’m frustrated. I know my geneticist will probably go to bat for me, but I know of the United horror stories.

Is there any chance I wind up having to pay thousands of dollars for this? Should I wait it out? Do I have other options?

Edit:

Everyone in the comments has been so wonderful and helpful and I am extremely grateful for all of you. When I posted this, I had just woken up to the news of the insurance denial and I posted this in an emotional heat of the moment frustration. My therapist had me stop googling stuff related to my health earlier this year, which I had become good at, but after reading all of these comments I realized that there are things I do need to be knowledgeable about in regards to this process, and that I definitely need to kick myself into gear for the time being.

I have already alerted the geneticist of the insurance issue, and they told me to message them in the portal as well. A commenter posted this link:

https://www.uhcprovider.com/content/dam/provider/docs/public/policies/comm-medical-drug/whole-exome-and-whole-genome-sequencing.pdf

Which made me realize that there are other relevant things that I wasn’t aware were relevant, and hadn’t mentioned to the geneticist during our consultation.

I am about to spend the rest of my evening pulling all of the relevant medical records and information and compiling it into an e-mail for the geneticist so that they are aware. I also contacted the genetics lab requesting information on their patient financial assistance program, and I plan on paying out of pocket for a mammogram later this month or early next month, and I also have a follow-up ultrasound this month as well.

Hopefully with the new info, the geneticist can either get my insurance company on-board, or send the order to a lab that offers a cheap self-pay option if Variantyx cannot assist. The package already arrived, but I haven’t opened it and don’t plan to unless everything is sorted out.

Thank you all again for the encouragement as well as helpful links and information. It means the world to me! I have felt like a looney toon for the past few weeks being only 26 y/o and even looking into this type of testing, almost gaslighting myself into thinking it was overkill, so I really appreciate all of the support.

[u/EmZee2022]

How frustrating!!!

Supposedly, Myriad will work worth you on the cost if insurance does not cover it, or so I'm told. My insurance did: I even saw a "pre-approval" on the portal which was a surprise. I assume Myriad filed that request on my behalf. I was prepared to pay out of pocket if they did not.

Have you tried to appeal the denials? You must have had at least one screening to get that BiRADS3 reading; that should put you in a category where additional mammograms are required.

It may be some peculiarity in your employer's contract, also; that can vary widely even with the same provider (I am also UHC and have not had issues).

[u/bucklekitty → u/EmZee2022]

I am having my second ultrasound screening on the 29th of this month. Physically, the mass feels larger. I have been putting it out of my mind. I can’t personally appeal the denial, my doctor has to do it - I guess I just wait and hope. I can’t get my insurance to cover a mammogram because I am 26, but I might end up paying OOP for a mammogram because I think it would be cheaper than genetics testing. However, the genetics testing wasn’t just for cancer, it was for Ehler Danlos as well to make sure I don’t have the vascular type. That’s a whole different story, but it’s just insane to me that with my medical history this is being denied.

[u/Cornnole → u/bucklekitty]

Ok then there's your issue right there and likely why UHC denied. Genetic testing for EDS is very difficult to get covered, and quite honestly is used inappropriately quite often.

Your provider should only order the BRCA1/2 core panel, adding other high PE trance genes for HBOC. They'll need to provide a pedigree as well and any pertinent medical records to get a PA done.

[u/saysee23 → u/Cornnole]

This!!

[u/bucklekitty → u/Cornnole]

They told me over the phone they can try separating the panels if insurance didn’t cover it this way, so I’m hoping that it works. I definitely need the EDS panel, I’m already in physical therapy from the fallout from pelvic floor prolapse and an umbilical hernia, as well as hypermobility in my hips and other nearby joints.

I was diagnosed with hypermobility at a young age when I ended up needing a knee MRI that showed joint effusion, and then I had an abnormal echo in 2020 and most recently 2024 that showed LVDD, so the purpose of adding it was to rule out the vascular type and get me approved for more physical therapy than just my pelvic floor. I also have severe joint issues everywhere in my body, and getting anything done about it without a formal diagnosis seems impossible on a marketplace plan.

I guess they tacked on the full genome panel also because of my father’s cancer, since I’ve already had issues with that. I didn’t ask too many questions, honestly.

[u/anntchrist → u/bucklekitty]

If you have a mass did they not recommend it for biopsy? Ultrasound is typically not used for screening. Mammograms or MRI are typically used, with MRI being more sensitive and better at finding issues early in younger women, especially with dense breasts. Mammography has never shown anything for me due to very dense breast tissue, so they usually follow up with ultrasound and/or biopsies.

If you are high risk you should be qualified for high risk screening, I was eligible at my mom’s age of dx minus 10. I have Kaiser with covers screening every 6 months, MRI then mammogram 6 months apart every year. I didn’t have genetic testing until I was diagnosed with cancer myself, but it was cancer-specific, not an analysis of all my genes. Keep it simple with the request, adding EDS into the mix isn’t helping and is a separate issue. 

If you do end up BRCA positive it’s a good idea to get screening for all related cancers, not just breast. Pancreatic cancer, for example, is also more common in people with BRCA mutations and coverage for screening can be difficult to get, but easier with known mutations. Likewise ovarian. 

[u/bucklekitty → u/anntchrist]

No, I don’t think they biopsy BIRADS-3. My insurance won’t approve MRI, biopsy, or mammogram at this time. My OBGYN pushed for a 6 month US follow-up, which is in a couple of weeks. I do have dense breast tissue, so I will push for an MRI at my next visit.

The referral was originally just for BRCA, but my OBGYN told me to ask about EDS testing as well, and anything that could be related to my father’s skin cancer. All of my hypermobility issues came to a head after surgery on my cervix, when I ended up unable to pee properly for 8 months due to pelvic floor prolapse.

If I didn’t have so many health issues crashing down on me all at once, I wouldn’t even be bothering with all of this to such an extent. With almost having cervical cancer, as well as skin cancer at the age of 26, and a family history of so many cancers, I figured I’d just get it all knocked out with one specialist (the geneticist) so I’d know which things should take the most priority. I’ve had over 250 specialists, PCP, physical therapy and diagnostic appointments in the last year and a half - not including multiple surgeries and procedures. It has been exhausting, and now I am a full-time student and working full-time trying to catch up on medical debt and many months of medical leave, so my only goal is figuring out what I need to prioritize the most.

Rheumatoid arthritis and lupus also run in my family, and I’ve now been experiencing some type of autoimmune hair loss and skin issues, so I’m having to handle all of that testing at the same time. It has been a whirlwind.

[u/anntchrist → u/bucklekitty]

You're correct, BIRADS-3 is probably benign so it makes sense that they are not doing a biopsy. I would prioritize the cancer-related genetic screening, that will make it easier to not have it denied. Also, if you end up having it done out of pocket and it ends up being positive for BRCA you have a good case to appeal that denial. My oncologist's office did screening for a family member without cancer including genetic testing which might be another avenue to look at since your family history makes you high risk. They were referred for a consultation from their PCP. With all you have going on health wise it will probably be a big relief to know and get on a regular screening schedule.

I also have hypermobile joints and unlike cancer there isn't much that your doctors can do apart from PT to help with that, whereas the cancer risk is actionable on multiple fronts if you are positive for a known cancer gene. From an insurance perspective cancer screenings for high risk people have the potential to reduce overall costs whereas genetic testing for a mostly untreatable set of symptoms doesn't make as much sense (so they are more likely to deny). You can always try for that genetic testing separately, but it's almost surely the reason you're being denied.

[u/EmZee2022 → u/anntchrist]

Birads3 usually mandates repeat imaging on 6 to 12 months though.

[u/bucklekitty → u/EmZee2022]

It does, I have my 6 month follow-up in a couple of weeks. I’m actually pretty nervous. The spot doesn’t hurt, but it has grown, and it’s uncomfortable to press on. The other thing that concerned my OBGYN is the incessant itch above the mass, along with nearby inflamed lymph nodes. They originally rated it BIRADS-2 but then called me saying they were wrong, they had sent it to another radiologist, and they deemed it BIRADS-3. The report does say that it goes away with my cycle, which it does not, but I never called to correct them about it because I figured it wasn’t worth the hassle if I can’t have it checked into again for 6 months anyway.

[u/bucklekitty → u/anntchrist]

I think their plan is to put the orders in separately, I’m not really sure the details though. I will find out this week. I’m not exactly sure the specifics of the test they ordered, and what genes it looks into - they just said full exome I think.

[u/dehydratedsilica → u/bucklekitty]

For what it's worth, my last BIRADS 3 was referred for 6-mo follow-up ultrasound (not even mammogram). I've had BIRADS 4 that were referred for biopsy. I don't understand "mammogram [order?] was denied" though - is it standard process to get prior authorization for a (diagnostic) mammogram? Considering the context of overall needs, how badly do you want one? In my area, cash/self-pay price would be in the $300 range.

[u/EmZee2022 → u/dehydratedsilica]

It may vary by insurance. My last mammogram (possibly my last ever!) was diagnostic, and I had it slightly before the 1 year mark. I called my insurance and there was no pre-approval needed. It was diagnostic vs screening due to the BRCA1 status.

I admit, I don't quite get the difference between diagnostic and screening, beyond it being read by the radiologist while you are waiting. Seemed pretty much the same, otherwise. And only certain locations will do them.

[u/dehydratedsilica → u/EmZee2022]

Screening mammogram would be preventive care, fully covered (by ACA compliant insurance) with no cost sharing, and you would get it yearly. (Or every 2? USPSTF recommends that now but I haven't heard of it affecting insurance.) If you are getting a mammogram to check out specific spot, that would not be screening/preventive.

A diagnostic mammogram might involve more views or more specific views but I'm not entirely sure. CPT codes are definitely different for screening vs. diagnostic and you would expect different costs. Diagnostic is non preventive so it would be subject to your plan's copay for imaging services or your plan's deductible. I can't imagine there would be a time restriction because what if you have another area of concern in a few weeks or months, then you're going to get (and pay for) another diagnostic. You just wouldn't get a "free" screening/preventive one, which would be time-limited.

Are you saying that being BRCA positive makes someone's future mammograms not qualify as screening, even if there are no physical area of concerns? (Or there was one but it was biopsied and cleared? I would not think you need to diagnostically check that spot again.) I haven't heard of this but it's not outside the realm of possibility.

As for mammogram being read by the radiologist while waiting, I'm inclined to think this is a matter of operating policy. At the place I go to, I was told cash/self-pay patients have theirs read on the spot (both screening and diagnostic) but insurance patients don't.

[u/EmZee2022 → u/dehydratedsilica]

I don't know whether all BRCA-patients get diagnostic ones forever. In my case, the breast surgeon wrote it as diagnostic. Not because of any specific concern - we did not believe I had developed cancer and the worst reading I've ever had was BiRads 2.

Since I'm having my first breast surgery in 5 weeks (eek) and the mastectomy / reconstruction 6+ months after that, this may well have been my last mammogram. I'll have another MRI in the interim.

And yes, it would have cost me money (deductible / copay) except I'd already hit my OOP.

[u/bucklekitty → u/EmZee2022]

So you are having your mastectomy done as prevention?

My last health insurance plan covered mastectomy and reconstruction in full for breast cancer patients and BRCA positive - my benefits package also covered LTD throughout recovery. It is sad that all plans do not do this.

[u/EmZee2022 → u/bucklekitty]

I am. Despite being BRCA1+, I do not appear to have developed cancer yet (I guess someone has to be in the 30% or whatever). I debated just going with screening, but at 65, my health is not going to be getting any better and I might not tolerate preventive surgery or cancer treatment if it comes to that. Plus, I'm still on private insurance - while I'm 65, and eligible for Medicare, Medicare does not usually pay for preventive surgery, unless there is evidence of cancer.

I was concerned about them paying for my first surgery, which is a nipple-sparing lift/reduction - I was concerned that they'd say this one was just cosmetic and deny it, but it's been approved.

I was less worried about the mastectomy / reconstruction, which will be next spring.

I was covered by short term disability for my hysterectomy, and expect coverage for my surgery (next month. Eek.).

[u/anonymowses → u/bucklekitty]

Mammograms are cheaper at places like Planned Parenthood and community health centers.

[u/bucklekitty → u/anonymowses]

Thank you for this information, I am going to look into this.