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/craiden]

If you are able to get the BRCA genetic testing, PLEASE get tested for Lynch Syndrome. Your family history looks just like Lynch.

I had breast cancer at 42 and an uncle who died from breast cancer in the 1980s. I don’t have one of the common breast cancer genes, I have Lynch.

My specific Lynch gene will probably be added to the breast cancer genes soon.

[u/bucklekitty → u/craiden]

I was under the impression that Lynch was primarily flagged with colorectal cancers, but I think the geneticist is suspicious of something based on the fact that I didn’t ask for anything beyond BRCA and EDS panels. She was pretty weirded out that I didn’t have any questions, but I kind of went into the consultation blind. My mom also has polymyositis, brain tumors, and has had heart attacks and multiple strokes, so I kind of just piled a ton of random information on her so I had no idea what questions I’d even ask. I still don’t really have any questions, she just warned me there may be scary secondary findings, but honestly my medical record has already been so upsetting that I’d rather know about things in advance at this point.

I don’t know anything about my father’s side medical history other than that he passed from squamous cell carcinoma of the skin.

Thank you for sharing and thank you for the encouragement and advice!! I am sorry you had to go through breast cancer, and I hope you are well now. <3

[u/craiden → u/bucklekitty]

The types of cancers that fall “under” Lynch depends on the specific gene.

I am fine and under the care of a breast & gastro oncologists. I have a ridiculous amount of tests done every year, but that’s okay if it means that any recurring cancer is caught early.

My gastro oncologist was amazing at getting testing approved by my insurance. I wonder if your OBGYN referred you to an oncologist, it would help with approvals.

I have a mammogram and 2 MRI’s every year. If one of those falls at the beginning of the year and I go through the hospital, the cost is usually about $2/$3k. If I go to an independent facility, it’s about a 1/3 of the price. 🙄 As others have said, don’t tell them you have insurance.

Good luck!

[u/bucklekitty → u/craiden]

I have seen an OBGYN-oncologist in the past after my rapid progression from CIN 1 to CIN 3 HPV-16 cervical precancer. It REALLY freaked my OBGYN out and she noted that she had never seen such a progression. It normally takes 10-20 years.

If all of this falls through with genetics testing through insurance, I am likely going to pay OOP. I’ve been playing phone tag today with the genetics lab, but they have a patient financial assistance program so I’m hoping that can help. Something is definitely not right if my body has spurred cervical precancer, skin precancer, a TIRADS-4 thyroid nodule and a BIRADS-3 breast mass in the last two years.

Some people have suggested pushing an independent endocrinologist to biopsy the thyroid nodule, since it is only .4cm too small to biopsy per the national guidelines. It has changed since the first US, but the endocrinologist was very dismissive and told me she couldn’t do anything outside of the hospital guidelines which she worked for, and has strongly urged me to find either a DO or an independent MD to discuss my issues, which I think was her way of telling me something might be wrong but she cannot help.

My dermatologist has been pressing me to have my second MOHS surgery, but the first one left me on my ass for almost a month (staph) and required 8 follow-ups and an ER visit. I already feel like I’m dying every day so I just can’t push myself to do it yet.

My other mission at the moment is a sleep study, which I have my consultation for next week, in case my body is just out of whack due to apnea or narcolepsy (I literally struggle to stay awake).

I’ve basically been attacking everything at all angles for years now.