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/bucklekitty]

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/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.