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/Life-Ad7974]

Standard BRCA 1/2 analysis doesn’t need to be done by a specialty lab. There is a good chance that auth isn’t required if you go through your capitated lab. Quest? Labcorp? I send genetic testing precert cases for denial everyday solely because they are requesting a nonpar lab and the test can be done in network.

[u/bucklekitty → u/Life-Ad7974]

When I log into quest and go to schedule an appointment, it shows me the option of “Haystack MRD: minimal residual disease test for cancer”, but when I google it, it doesn’t seem like something I can pay for out of pocket.

I don’t think the testing center (Variantyx) is out of network, they told me they were in network. I think the denial is because it is “not medically necessary”, so I think it is up to the geneticist to go to bat for me, but he is the one who suggested the excess testing - I did not ask for it. I will have to wait until tomorrow to call the office and figure it all out since it is the weekend.

[u/Life-Ad7974 → u/bucklekitty]

Please clarify. MRD is completely different than BRCA genetic testing. MRD testing looks for residual disease. Were you treated for cancer?

[u/bucklekitty → u/Life-Ad7974]

Oh, okay, I see. I wasn’t sure what it was, that is just an option that quest provides to everyone now.

I was not treated for cancer, I have had moderate skin atypia removed in one spot via MOHS surgery and I require a second MOHS surgery. My first surgical site did not have a good healing process and became repeatedly infected with staph and pseudomonas despite intricate care, which raised red flags for immune issues (which I just completed another ANA blood panel today actually).

I had CIN 3 removed from my cervix, which is carcinoma in situ, but we removed it before it progressed further. The red flags were with how fast it progressed.

There was talk regarding my father’s skin cancer being derivative of HPV-16 tonsillar cancer, but I was not close with him or that side of the family so I am not sure. I think the reason for the full genome (or exome?) may have been related to this, although I don’t know if there is a gene that causes HPV-16 to spiral out of control. I just know that my HPV-16 did.

Edit: what I am trying to say is that I have nearly had cancer twice, and now I have areas of concern in my thyroid and my breast as well, and nobody can figure out why my body is rapidly producing things in this manner, and the reason for me seeing a geneticist was primarily to figure out how the priority list should go because I have been attending two to three Dr appointments a week, if not more, for the last 1.5 years for various issues. The cervix surgery is what catapulted me into severe health issues, leading me to be on antibiotics over 18 times in 12 months. Nobody could figure out why my immune system was so shot. It takes careful planning to not wind up extremely sick still.

Prior to the HPV-16 spiraling from a minor to a large issue in 2023 within only a few months, I rarely ever went to the doctor and only utilized telehealth and urgent care for antibiotics for frequent strep throat. It seems like my immune system has been in a spiral ever since. I have felt like I’m on my deathbed for quite some time now, and I guess I’m feeling let down because I thought this testing would help me figure out which direction to go in to solve it. I look fine, after gaining weight back, but I went from 195lbs to 120lbs in a matter of 8 months in 2023 without trying, so now that I am a healthy weight again, most specialists brush me off. I also went from 130lbs to 195lbs in a matter of 8 months a couple years prior to that. Endocrinologists have shoved me away despite the thyroid nodule because my blood tests have been pretty much normal. The geneticist was the first one to take me seriously since my 15 ER visits last year (for chronic UTI).

My coworkers have all pointed out that how I am physically is not normal, which I am well aware of. It takes me 24 hours of rest to recover from 5 days of work. I work on my feet and do active cardio 35-40 hours a week, which should be good for me, but I feel like I’m dying and it takes every bit of will I have to make it to work and support myself every day. It’s not normal, so I’m really hoping genetics testing can help me figure out what is going on. My grandmother was Dx’d with seronegative lupus, as is my aunt. They both have the same issues as me. My mother was diagnosed with polymyositis at Mayo Clinic a couple of years ago. Sorry for the rant, I’m just dumping info in case anyone has some input.