r/HealthInsurance • u/bucklekitty • 21d ago
Claims/Providers UHC denying medically necessary cancer genetics testing, which was the second option since they wouldn’t approve a mammogram.
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:
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.
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u/EmZee2022 21d ago
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).
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u/bucklekitty 21d ago
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.
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u/Cornnole 21d ago
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.
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u/bucklekitty 21d ago
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.
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u/anntchrist 21d ago
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.
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u/bucklekitty 21d ago
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.
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u/anntchrist 21d ago
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.
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u/EmZee2022 21d ago edited 20d ago
Birads3 usually mandates repeat imaging on 6 to 12 months though.
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u/bucklekitty 20d ago
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.
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u/bucklekitty 21d ago
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.
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u/dehydratedsilica 20d ago
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.
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u/EmZee2022 20d ago
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.
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u/dehydratedsilica 20d ago
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.
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u/EmZee2022 20d ago
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.
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u/bucklekitty 20d ago
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.
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u/EmZee2022 20d ago
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.).
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u/anonymowses 21d ago
Mammograms are cheaper at places like Planned Parenthood and community health centers.
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u/Life-Ad7974 21d ago
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.
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u/bucklekitty 21d ago
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.
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u/Life-Ad7974 20d ago
Please clarify. MRD is completely different than BRCA genetic testing. MRD testing looks for residual disease. Were you treated for cancer?
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u/bucklekitty 20d ago edited 20d ago
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.
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u/Thick-Equivalent-682 21d ago
Pick a testing company with a low self-pay rate. Therefore if denied, you just self pay.
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u/Cornnole 21d ago
Just pay cash if it's denied.
Invitae and Natera have large panels for like $250. Your genetic counselor should help facilitate this
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u/bucklekitty 21d ago
Would my doctor have to send the panel to such company instead of variantyx?
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u/Cornnole 20d ago
Yes
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u/bucklekitty 20d ago
I reached out to them today letting them know of my insurance’s decision, they said they will begin working on it. I am playing phone tag with the genetics lab, but it appears they have patient financial assistance so I’m inquiring about that. Worst case scenario, I will have them send the order elsewhere to self pay! Thank you so much
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u/hospitalist1975 21d ago
Before you blame insurance companies, make sure that the providers billed correctly, often times it’s the providers fault for booking the incorrect code. Not trying to make excuses for insurance companies, just my own experience
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u/Holiday_Cabinet_ 21d ago
OP said the genetic test was also to test for EDS which may be part of why it got denied but is pretty relevant info
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u/bucklekitty 21d ago
It is a full genome panel - procedure code 0212U, if that is relevant. “RARE DS WHL GEN&MITOCHDRL DNA SEQ ALYS PROBAND” is the title of the testing that was denied.
Per this link, it looks like UHC states “Not covered when submitted with screening diagnostics”, which I am unsure what this means.
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u/lukewarmcheesestick 21d ago
It means the diagnosis codes attached to the tests ordered are for screenings. Like “screening for breast cancer” you have to meet specific criteria. https://www.uhcprovider.com/content/dam/provider/docs/public/policies/comm-medical-drug/whole-exome-and-whole-genome-sequencing.pdf
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u/bucklekitty 20d ago
I do qualify per this criteria.
I have multiple birth defects that have seemed to cause me no harm thus far, I don’t have the energy to dig up the actual names right now, but there is a defect in the shape of some vein in/near my kidneys, a vein in my neck (carotid artery maybe?), something with my umbilical area, and I’m sure other things I don’t remember / haven’t proven great clinical significance yet. I know the kidney defect puts me at a higher risk of death with anesthesia, but I’ve only been put under four times and I’ve been fine so far. I forgot the name, but I was born with defects in my knees as well. I was told I could have a derotational osteotomy after 21 y/o but I manage with the pain. I definitely have those medical records as the doctor sent them to me about a year ago after I requested the documents for an unrelated more recent MRI.
If Asperger’s is considered an intellectual disability, I haven’t been formally diagnosed, but my sister and my father were. My current psychiatrist said it’s not worth testing me since I’ve managed to learn how to interact socially through my job over the years.
I have had Tourette’s my entire life, but I’ve never been formally diagnosed. It doesn’t affect me that much, although I experience motor tics pretty much 24/7 and have experienced this since I was very little. I would injure myself as a little girl and get in trouble for it (rolling my stomach was my first tic). There are probably notes of it in my psychiatrist records, but Florida will not allow a patient to see their psychiatric records.
My father was formally diagnosed through court-mandated psychiatric testing with OCPD, a form of OCD. I definitely have OCD, but I have not had clinical testing. I have also been diagnosed with bipolar disorder in the past, but my current psychiatrist decided I don’t meet the criteria anymore and removed it from my diagnoses. I was diagnosed with bipolar at 17 y/o and I used to be treated with lamictal until I developed the Steven’s Johnson rash.
I guess I could reach out to the geneticist with this information and provide him as much evidence as possible if it would help. My father is dead and his psych eval was done over 20 years ago so I’m sure those records are long gone, but my psychiatric records are probably obtainable and the medical records indicating my random birth defects are in my hospital patient portals. They were all found incidentally.
Something is definitely different with my body, so I’m really hoping there is a way to get this full panel done. I know I will probably never have another life insurance policy, but I don’t think I’d qualify with my current medical record anyway.
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u/lukewarmcheesestick 20d ago
Unfortunately you would need documentation of all of that and a dx not just your word that you have it. If you’ve reported this to doctors then it should be in your medical records. They should be doing an appeal for you.
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u/bucklekitty 20d ago
Most of the physical birth defects are listed in the records that the geneticist’s office have access to, but I’m going to add the medical reports regarding my knees and the report from my last rheumatologist who attempted to refer me to oncology.
I can probably have my childhood psychiatrist forward my information to the geneticists office as well, though they tried to charge me $300 the last time I requested them to release my records to another doctor.
I don’t have any medical records for my father, unfortunately, but my mom might still have the court record documents where it was stated. I remember the name of the psychiatrist who ran the testing, but I don’t think she’d still have the records although her practice is still active.
I definitely could obtain the medical records for my mother’s breast cancer, since she still sees the same oncologist.
My sister sent me her asperger’s paperwork a few weeks ago because she had questions about it, so I have that as well.
Hopefully all of that would be enough, but if the genetics lab tells me there’s a cheap self-pay option I’m going to do that and save myself the hassle.
The only issue I can see is that all of us have different last names - my mom, my sister, my dad 😩 I’d have to find all the death and birth certificates probably
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u/yeahnopegb 21d ago
Have you called around for a cash price? I wouldn’t wait.
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u/bucklekitty 21d ago
I am going to start working on it tomorrow, thankfully I have Monday and Tuesday off this week. I am wondering if my doctor could send it to a company that charges a flat rate instead of sending it to Variantyx.
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u/craiden 21d ago
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.
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u/bucklekitty 21d ago
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
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u/craiden 21d ago
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!
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u/bucklekitty 20d ago
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.
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u/mssparklemuffins 21d ago
Was the test already performed? I had genetic testing for breast cancer after a diagnosis at 39. My test was approved, but I also had genetic testing at the same time for Lynch Syndrome (colon cancer) since my dad died of colon cancer at 54. It was denied and per Aetna my responsibility may be $8600. I called Ambry genetics who explained to me they don’t balance bill and I will not receive a bill. I indeed was never billed.
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u/alphabetical_soup 21d ago
Ambry absolutely bills the remainder these days. I got an $800 bill this past fall and have been making payments on it (but understood my responsibility when getting my testing done, which I know many don't have that luxury).
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u/bucklekitty 21d ago
I would pay $800, how much did your insurance cover?
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u/alphabetical_soup 20d ago
8.8k charges, insurance rate took off 4.9k, insurance paid 3k. My balance was just under 900.
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u/bucklekitty 20d ago
That is not bad. Do you regret having it done in any way? I see people saying the main concern is related to issues with life insurance, or anxiety.
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u/alphabetical_soup 20d ago
No. I was fortunate to have zero markers, and already had life insurance in place, although my Dr did ask if I needed it before testing which I appreciated. Ambry did turn around the results extremely quickly as well, which helped with any anxiety I might have had.
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u/bucklekitty 20d ago
It seems like Ambry is what most people on Reddit suggest. I think they probably didn’t ask about the life insurance thing for me because my medical record is already ridiculous, but I already knew about those things being a potential before I even made the appointment 6 months ago.
I’m glad you got good results :) This process is scary in general
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u/bucklekitty 21d ago edited 21d ago
No, I haven’t done it yet. I believe the package is on the way though. I was told it would be $164.
Edit: I do not plan on taking it before getting a final price, I was just told that the lab was in network and it would be $164 out of pocket.
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u/CindysandJuliesMom 21d ago
Do it yourself using a full genome sequencing company. It will cost anywhere from $200-$500 dollars and you will be able to download and search your entire genome.
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u/bucklekitty 20d ago
Is this useful for my doctors though? Meaning, if I utilize one of these companies on my own, are the results relevant in the eyes of my specialists?
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u/Dazzling_Frame_8991 21d ago
https://www.thewisdomstudy.org/ The WISDOM Study - Join The Movement
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u/Dazzling_Frame_8991 21d ago
Try to enroll in this.. they offer free genetic testing and it includes BRCA
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u/ReluctantReptile 21d ago
Average cost of a mammogram is like $500. Pay out of pocket for now
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u/bucklekitty 20d ago
If the results are negative, do you think it would aggravate my ability to get BRCA testing in the future?
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u/ReluctantReptile 20d ago
I have no idea but I don’t think that’s really a game worth playing. Get tested now if you have a lump.
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u/bucklekitty 20d ago
I am a little mad at myself for putting all of this out of my mind since February. My therapist has been urging me to stop stressing over my health, and my last therapist did as well. My family and friends also say the same thing, so I have done a lot better at playing the waiting game and handling my anxiety in relation to all of this.
With my next ultrasound being in two weeks, it has been in my mind a lot more, especially after the geneticist seemed concerned enough to tell me a full panel would be the most beneficial.
Since the genetics testing seems like it would take months regardless of insurance issues, I think my best plan of action is finding a self-pay mammogram center, you are right. if I self-pay, my insurance company probably won’t have access to the records regardless.
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u/ReluctantReptile 20d ago
That’s true! I’m honestly surprised insurance is denying a mammogram. I have a family history of cancer and I’ve found two lumps under 40, both cysts, but it was approved no issues at all. Genetics is an exclusion under my policy for all reasons though
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u/bucklekitty 20d ago
My plan documents say genetics tested is covered for a $1 copay after meeting my deductible (which I have) lol. It says mammograms are covered for a $5 copay, but I’m assuming my age was the issue despite family history.
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u/Just-Entrepreneur825 21d ago
Apply for a patient assistance program through the genetics lab
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u/bucklekitty 21d ago
I have medical financial assistance through the company that the geneticist works out of, but I doubt that extends to the lab in any way. I will speak with the lab tomorrow. It looks like Variantyx does provide financial assistance.
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u/Comntnmama 21d ago
A mammogram is pretty affordable if you cash pay, just don't tell them you have insurance. Genetic testing is the same, it was cheaper to pay cash with no insurance approval.
It is abysmally frustrating to keep fighting for stuff so I've just switched to paying cash for stuff.
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u/bucklekitty 21d ago
Can they retroactively find out about my insurance in any way? I would be willing to pay a fee if I absolutely have to
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u/lukewarmcheesestick 21d ago
Where do you live? Some states might have specific funding or organizations for mammograms. In Pennsylvania you can get a mammogram through Adagio and it’s free.
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u/bucklekitty 21d ago
I am in Florida, I will look into it. If I could keep the out of pocket charge under $500, I could afford it. But the genome panel was for other things too, including Ehler Danlos syndrome. I have a minor heart issue, so we needed to rule out the vascular type. I am already diagnosed with hypermobility. To get approved for further PT, I also need a formal EDS diagnosis. It’s exhausting
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u/bucklekitty 21d ago
A few people have given me some links here for things like this, I just got off work so when I wake up tomorrow I am going to try to get everything sorted out, and worst case scenario I will look into the links and information provided here. This thread has been very helpful and I am grateful for everyone who has chimed in!
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u/Actual-Government96 20d ago
They will cover targeted gene testing if you meet criteria. They will not cover whole exome sequencing because you may be suspected of having a few different genetic disorders.
One of the requirements is:
Clinical presentation is nonspecific and does not fit a well-defined syndrome for which a specific or targeted gene test is available; if a specific genetic syndrome is suspected, a single gene or targeted gene panel should be performed prior to determining if WES is necessary.
As for the mammogram, they wouldn't approve it? Or wouldn't cover it as a preventive screening (as opposed to subject to deductible)?
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u/bucklekitty 20d ago
I was told that they would cover mammogram for me after age 30, which is in 3.5 years.
Is there any way to get a full genome panel covered by insurance? My doctor seems to think I need it. I reached out today and they told me to message through the patient portal as well, but they reached out to the doctor directly on teams asking him to start the appeal process.
I would be fine with just a BRCA test, but with my dad having a non-BRCA cancer I’d appreciate further testing.
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u/OkMiddle4948 19d ago
Something is missing here. What was the specific reason your mammogram was denied? Why was the genetic testing denied? “Not medically necessary” oftentimes means your provider did not submit the medical records. There is additional denial language that is included that states specifically why it was denied.
What type of plan do you have? Genetic testing is generally covered specifically when there are risk factors which you have.
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u/bucklekitty 19d ago
Hello,
A commenter here shared the link for United’s genetics testing requirements. It is likely that because I have used other specialists that are out of the geneticist’s hospital network, that some of my records were unavailable for them to provide to the insurance company.
Part of the requirements were:
-Multiple congenital anomalies. I know this is normally things like Down syndrome, but I have multiple random birth defects that don’t affect me that much on a day to day basis, they are primarily things that would affect me during certain surgeries. A few of these were found incidentally in imaging from other healthcare centers. I have forwarded the information to the geneticist.
-Familial link / relevant medical history. I figure my word is enough, but if the insurance asks for my mom or dad’s medical info, it is going to take me finding birth and death certificate for my dad, calling up his specialists, if I can even find them, and hoping they have a way to get me some kind of info. For my mom, her cancer DX was in 2013, so her results portal doesn’t go back that far. Thankfully her name is on my original birth certificate, but my father’s is not, and we all have separate last names. I’m assuming that UHC will want actual proof vs my word.
-Bipolar diagnosis before the age of 18. I have this on my records portal with the geneticist’s hospital system, so I have included this information. It is not on my current diagnosis list because my current psychiatrist decided I am not bipolar, but apparently I was when I was 17. Years
-It hasn’t been long enough for me to receive a detailed letter yet from UHC, and I haven’t had the energy to log onto my PC to pull up the United website yet. Detailed explanation doesn’t seem to be available on mobile, it just says lack of medical necessity so I’m assuming that the geneticist didn’t include my full medical records.
For the mammogram, United agreed to begin them at the age of 30 for me, but that is in 3.5 years. According to the commenters here, it is pretty easy and relatively cheap to get them on self-pay, so I will also be looking into that, and I have my 6 month follow up for my breast mass on the 29th of this month.
I think a huge issue with all of this is the lack of extensive medical records. I barely have free time, and my mom and I don’t have the best relationship, so I didn’t compile a bunch of records together before my appointment, which I regret. My last UHC plan wouldn’t have had any kickback for anything, so I was hoping that would be the case with this UHC plan.
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u/OkMiddle4948 19d ago
You don’t need medical records for family history. They can’t require you to provide someone else’s records.
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u/bucklekitty 19d ago
Oh, well that makes it a lot easier.
Either way, I emailed them with a rundown and outlined all of the history for them again.
I also emailed Variantyx saying I’d be willing to do the self-pay rate if it is reasonable. They told me over the phone that they were only going to charge me $164 regardless, and they have a patient financial assistance program, so worst case scenario I will probably go that route.
I let the geneticist’s office know that if there are more specific tests relevant to my history, I am willing to go that route as well, but it would make more sense if the lab offers to let me self-pay since I already have the test. I haven’t opened it yet, though.
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