Really annoyed with my insurance company: BRCA1 testing
Hi all!
The BRCA1 gene runs in our family. My lovely Mom has breast cancer now; she's 58. Mom's Mom had breast cancer around the age of 41. And Grandma's Mom had breast cancer around the age of 41 as well. I'm 36.
Because of the family history, Mom had the BRCAnalysis done, and she tested positive for one of the BRCA1 mutations. (Because she has cancer already, it was considered a diagnostic test, and it was 90% covered by her insurance company.) I'm personally very glad she had that testing, because it changed her treatment plan. They're being more aggressive with her treatment now.
Now everyone in Great-Grandma's family tree has a good chance of having the same gene mutation as well. Suddenly this is "our family's" cancer. It's a big family. I'm trying to count the ladies descended from Great-Grandma in my head... at least 19 of us are alive now, not counting the men.
I was able to get a baseline mammogram right away, but my insurance company is trying to deny coverage for the BRCA test, saying that it's too expensive, even with my documented family history! I have Mom's test results and genetic counseling profile and everything. The insurance company's website says they cover the testing if you have a sufficient family history. I have a 50/50 chance of having that mutation; I think that's about as strong a case as you're going to get! I'm going to have to see a doctor and genetic counselor at the local cancer center just to try to get the insurance company to cover the test. Now I'm waiting for that set of appointments. This is just such a waste of time and money. ARGH.
I really wish we could just get this done with. The anxiety of this is distracting me from my Mom's cancer treatment.
Comments
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Since I was diagnosed before age 50, the docs wanted me to get tested. But the insurance rejected it the first time around. So the genetic counselor got on the phone with someone "higher up" and got it approved. Turned out, even though we told them, it hadn't got into the record that my mom also had BC. Once they knew that, they agreed to pay.
So have your doc talk to the insurance co & make sure they have all the info. If I remember correctly, since your mom has tested positive, your test would be MUCH cheaper because they know exactly which mutation to look for. There's no reason the insurance should deny that. Be persistent! Good luck. -
If your mother has a known BRCA mutation, you can have what is known as a single-site test that only looks at your DNA to see if you inheritedonly that mutation. It costs several hundred dollars and if your insurance won't cover it, you might be able to get financial assistance through Myriad or another BRCA test lab (Ambry and the Univ. of Washington are two I know of). If your mom's mutation is one of the three Ashkenazi Jewish "founder" mutations, they are tested with 23 and Me and that only costs $99.
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Thanks. I tried to explain the single-site tests to my primary care doctor, but to be honest, I don't think she understood, because she said it was going to be $3000 out of pocket. Also, the labs in town (Labcorp and Quest) were completely un-helpful, stating that they don't do that test at all. Really? She said they spent 3 hours calling around and that's all they found. This is what we get for living in a small town. I'm going to the university or the city (only 20 minutes away) for the rest of this.
Actually, the mutation in our family is one of the Ashkenazi Jewish "founder" mutations. (My Mom's family is not Jewish, but they are from Eastern Europe.) So maybe I can get that 23 and Me test. Good pointer.
I got my mammogram results back, and they want me to come in for additional, magnified images and an ultrasound to investigate a suspicious area. Great.
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No local labs will be able to do this test since Myriad owns it. They are the only folks that can do your test so it is not a function of town size, but patents. But, to be honest, this test is pretty cheap in your case. You don't need your whole DNA strands to be tested; just the one that they found in your mother. I think you are talking about $300 tops.
Personally, I would leave your primary out of this. The process should be your oncologist refers you to a genetics person, who then recommends the test. Done this way, the genetics folks will talk with Myriad for you, and if your insurance will not pay, Myriad will probably cover the entire cost.
Best of luck,
*susan*
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Susan, Myriad lost their patent to be the sole tester in June. Other labs can now do it, but I don't know how many are doing it yet.
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As I mentioned, Ambry and the University of Washington both currently offer BRCA testing - definitely as part of multi-gene tests and probably as single site analysis. I called UW with a question about mine and the person I spoke with was really helpful. I bet Ambry has a patient relations contact too. Unless one of those labs would be faster than 23 and Me, I'd probably go ahead and spend the $99 if you can spare it and get it done. They might offer financial help in your case too. Couldn't hurt to ask.
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Personally, I'm most concerned with getting results back as quickly as possible. This is causing a lot of anxiety for my husband and I. I try to tell myself not to worry, but this situation is affecting my sleep, messing with my appetite, and distracting me. My Mom's breast cancer, and the fact that I have two daughters of my own, raise the stakes. Then my suspicious mammogram, and the fact that my grandmother and great-grandmother had breast cancer near my age, pile on top of that. Waiting a couple of months for results would not be fun.
I'm going to see if I can get an appointment with the cancer center at the university within a week or two. If things move along there quickly, I could have results within a few weeks. The 23andMe test is certainly an option too. I would not mind spending $99 to get results, and I may just do it anyway. We're lucky that they happen to include the exact gene mutation we're looking for in the 23andMe test.
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Alright, well, single-site analysis is under $400. You can get single-site analysis with Myriad, Ambry Genetics, and I believe DNATraits also does it. The University of Washington also offers it (but turnaround won't be as quick as the other "for profit" labs). Not a lot of labs do them though as the patent just came off and most small labs do NOT have the years of research and so forth behind them to have the ability to do the testing AND some of those who are doing it are finding themselves engaged back in lawsuits so it does not surprise me at all that your local labs would NOT test. Your sample needs to be mailed off.
Myriad and Ambry both definitely have a quick turnaround, like usually 1-2 weeks. If your gene is one of the 23andMe mutations than that is definitely an option. Results will take a bit longer though (the timeframe can range from 3-6 weeks). You do not need to go through a genetics counselor for that, though I highly recommend genetics counseling at least after you get the results to go through your options and develop your own healthcare plan and get proper referrals.
So yes, you really should be seeing a genetics counselor. Your primary doctor may be a great primary care doctor, but not the person to see when it comes to genetics. It seems that she does not really understand what she is doing here (and that is not expected as she is not a genetics expert)...you want someone who can also understand the results and does not tell you that you are positive if you are not, or negative if you are not (which has happened when people have got results from non-genetics experts with some rather terrible consequences). A genetics counselor will also have the kits to send off the samples to the proper lab, review your options for testing, and be able to review with you turnaround times, etc.
I just really hate seeing non-genetics experts ordering these tests and so forth with often very little understanding of what the test means, how results are interpreted, and so forth (many for example might not know difference between a true negative, and an uninformed negative...and the consequences of that to the patient). Or they don't have the breadth of knowledge of statistics, recommended screening and preventative care, and so forth.
Your genetics counselor will ALSO coordinate with your insurer and contact them to pre-authorize approval as they know the proper coding and so forth which it sounds like your primary care physician does not. Your genetic counselor will be able to work with your insurer to properly explain this is a single-site test and not just a full-sequencing. It seems like this is somehow not being communicated properly to your insurer by your primary care doctor. Given your mother has a known mutation, there is really no other explanation why they would not cover the test under preventative care. Like you said, you have a 50/50 risk of having inherited it.
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Very insightful, DiveCat. Thank you.
It's hard to wait, but I do want to do the right thing as well. I'm sure most people on these boards can empathize with the agony of waiting for tests and results, and not knowing what's going on!
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Hi Sabihah, if you go through Myriad, if there is a delay, you can actually speak directly with their patient care rep. I believe that the woman's name is Jackie. I had some kind of snafu (actually probably the fault of Myriad's misunderstanding of my insurance). I was waiting longer than I expected. I called Jackie, stating that I needed the results to decide on surgery (which was true) and they rushed it through. I do think that the tests for the founder genes are very quick, and now that Myriad has some competition, I think they will be more consumer friendly.
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DiveCat gave an excellent summary and I'm just tacking on here in case someone finds this thread in a future search... Many primary care, OB/GYN and even oncologists do not have a great understanding of the genetics of cancer and an appointment with a certified genetic counselor should be one of the first stops for anyone concerned about their family history. A GC will take a detailed family history (so the more information you can bring to the appointment the better) called a pedigree and will analyze which - if any - genetic testing should be done. Many doctors just think about BRCA when they think about familial breast cancer - and it is the most common - but there are several other known syndromes that might be more likely for a given patient. Or what might seem like a strong family history of cancer to you might just look like coincidence to a GC (older onset, unrelated tumors, etc). For BRCA, a GC would calculate your risk of testing positive given your personal and family history. Usually if your risk comes out above 10% (I think, but am not 100% sure), they recommend testing. You already know you have a 50% risk of carrying a mutation so if your insurance covers genetic testing of any kind, I think they would cover the single site test for you. I hope you receive a negative BRCA test and a benign result from your mammo very soon.
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So, my follow-up mammogram and ultrasound were, eh. I have very dense breasts; the radiology tech told me this, and I peeked at the mammogram images. They're mostly whitish, so that makes things more difficult. There are also diffuse calcifications, and a 9mm benign cyst. There's nothing of immediate concern. They'll have me back in 6 months for a follow up to see if anything changes.
Still no word from the cancer center about that appointment for genetic screening... I'll try again tomorrow, sigh.
Should I ask about getting a breast MRI at this point?
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Just to follow up - in California, they're required to notify you in writing if you have dense breasts, which they did. The letter recommended Automated Whole Breast Ultrasound, which can find things that a mammogram would miss. It may or may not be covered by my insurance. So, I'll be checking into that as well. *shrug* Tests, tests, and more tests.
My Mom's surgery is in 2 weeks. If you're reading this, she would appreciate your prayers!
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I have been referred for the BRCA testing have meeting Wednesday for genetic counseling. I have been diagnosed with LCIS and ALH and ADH. Lesion removed during biopsy surgeon told us would have been cancerous in 2 to 3 years. Husband asked surgeon what a simple explanation to give to family and surgeon replied precancerous. Still I don't really know what to do. Risk 1 in 4. Oncologist stated if gene comes back positive will remove both breast and ovaries. Any help regarding this would be greatly appreciated. Any one with this diagnosis how handled. Have strong history of ca in family 3 cousins and aunt with breast ca. Father and uncle with bone and lung, another uncle and his son with prostate ca. So unsure if my ins will cover testing. Also have very dense breast surgeon said difficult to read.
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Hi Newby. I think the genetic counselor will help you with a lot of your questions. Also, while there is a lot of cancer in your family, cousins and aunts are not nearly as concerning as an immediate relative. The bone and lung cancers are probably not related to any family genetic syndrome concerning breast cancer.
It is curious that your surgeon made those predictions about hyperplasias/LCIS definitely turning cancerous, especially giving you a specific time frame. Nobody really knows which of these things will ever turn cancerous, and honestly, lots of them never do. More of them do NOT.
Just wait and see what your genetic counselor tells you. There are things that can reduce your risk if you are not positive for a genetic syndrome, such as diet, exercise, maintaining a heathy weight, avoiding alcohol in excess and taking either Tamoxifen or Aromasin or another aromatase inhibitor, depending on whether you are premenopausal or menopausal.
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Hi my mother had uterine ca also. So much on both sides just not breast. Just keeps me on edge. Thank you for your reply it helps talking to someone who has somthisn similar.
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This is more than you would ever think till it happens to you.
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I understand. I was diagnosed with LCIS just a couple of months after my ovarian cancer surgery.
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Newby----have to agree with Melissa; uterine, bone and lung cancer not related, the breast and prostate can be, but not so much if not in a primary relative (parent, sibling or child). Wait and see what the genetic counselor says and what the BRCA results are. I'm also very suprised at what your surgeon said; the risk with LCIS actually is greater 10 -15 years down the road, not during the first 2-5 years as with DCIS or invasive bc. The LCIS lesion itself doesn't usually go on to become invasive (my surgeon stated risk very low, <5%), it's that they may find something invasive in there along side the LCIS. Hence the reason for close surveillance and preventative meds. I was diagnosed with LCIS 10 years ago and my risk is further elevated by my mom's history of ILC. But even with my 35% lifetime risk (1 in 3), all my docs felt bilat mastectomies not medically necessary. I had a lumpectomy, I took tamoxifen for 5 years, I've been taking evista now for about 4 years, (I look at the meds as something I can do proactively to help prevent invasive bc in my future). I do high risk surveillance of alternating mammos and MRIs. Just got another all clear mammo this am! Not the choice for everyone,, but it has been the right one for me. Every one has to decide what level of risk they can live with. There are lots of pros and cons to every choice, none of them are without their own set of issues/ challenges. Good luck to you.
anne
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Mom had her bilateral mastectomy yesterday, plus the first stage of reconstruction (expanders). It was an 8 1/2 hour surgery, all told, plus a few hours in recovery. But she's actually feeling much better today. Some fatigue, some soreness, but she was able to get some sleep, eat, and walk a little. They're sending her home from the hospital already. It's a little scary to be out of the doctors' constant care, but they only live 2 miles from the hospital and cancer center, and she'll be safer from infection at home.
The other great news is that they didn't find any cancer in the lymph nodes.
While having a part of your body removed is always a little... disconcerting?... mentally, I think she's mostly happy to be rid of the cancer and relieved that the mastectomy itself is behind her. She sounded happy today. -
As for me... I finally got an appointment with a genetic counselor. The one we were trying to get an appointment with is booked up until February (!), and the other place that's relatively close never returned my phone calls, so I went to a place about an hour away. My appointment is on November 5th. I wish it was sooner, because of the level of anxiety I have about this, but something is better than nothing.
I also got my insurance company to pre-approve an MRI, because of Mom's BRCA1 status, so I should get that within the next couple of weeks. My primary care doctor sent a referral over to the radiology center, so hopefully they'll call back soon to schedule an appointment. I'll feel a lot better after getting an MRI. I just didn't feel comfortable after the dicey mammogram, especially after reading in the medical literature that BRCA1 cancer can look like a benign cyst! Also remember my family history; my grandmother and great-grandmother already had cancer by the time they were 40, and my Mom already had cancer in both breasts by the time mammography (barely) detected anything.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292493/ "Malignant lesions in BRCA-MC frequently have morphological characteristics commonly seen in benign lesions, like a rounded shape or sharp margins. This applies for both mammography and MRI. However the possibility of MRI to evaluate the enhancement pattern and kinetics enables the detection of characteristics suggestive for a malignancy." -
sabihah,
I am glad you have an appointment set up for genetic counseling, and an MRI approved. Where I am I have to wait 6 months to get an MRI...and I have not even got my referral for one yet as I am waiting for a referral to get a referral...story of my life the last 2 years or so! Hopping from one referral to the next.
I actually drove 3 hours (one way!) across the border for my genetic counseling and test. I would have had to wait a year to even see medical genetics here (seriously, I got a letter in the mail telling me I could expect an appointment in "12+ months", and it could have been several more weeks or months before I got test results...if they approved me. The high risk clinic/providers I am under the care of (and even the MRI with the breast coil) are a 2.5 hour drive away from me. A PITA, as you can imagine, and part of the reason I am leaning more and more toward a PBMX. It is not that easy to take a day off work to drive up for an appointment or an MRI and if something ever DID go wrong, I don't feel comfortable with the level of care I would get local to me and so on.
I am also glad your mother's surgery went well. When my mother was diagnosed, she had a bilateral MX with immediate DIEP. She was definitely relieved to get the tumour out (though 19/20 of her nodes were positive so there was an awful lot of unknown still), but it was a lot of up and down after that with recovery and healing from reconstruction. I am glad your mother has a good support system, and I hope her recovery goes very well! -
DiveCat,
Yikes, that's really bad. Where do you live again?
Maybe we should all go back to school and get degrees to be genetic counselors. Sounds like guaranteed employment for life. ;-) -
sabihah,
I am in a smaller city in Western Canada. So...free care but for non-urgent care things can move slow. Some things would be as long as a wait in a major centre, but also some things, like breast coil MRIs or providers in the know about high risk just aren't available in my city. Of course, this is the case for many people all over, I am sure. Still, am grateful it is free care and I know if it was urgent things would move differently (from first and secondhand experience).
I do find genetics fascinating and do lots of reading for fun on pubmed...I love going through my raw data from 23andMe and looking up genotypes...but I never want to go back to school again, ha (8 years post-secondary). I am still paying off loans! I'll keep my interest as a hobby! -
DiveCat,
Yes, free is definitely good. We have a $5000 family deductible, and the insurance company doesn't pay for much (only free annual check-ups and vaccines) until after we've paid our deductible. For 2013, we've already paid our deductible because of some special treatment my daughter needed, and one trip to the ER. Now that the deductible is met, we just pay 10% of everything else. So, we're trying to fit in as much as we can this year while it's cheap!
I live in a small town now, so that's part of the challenge. My Mom, who lives in a major city and actually had cancer, was able to get a genetic counseling appointment within a week, and she got her test results back in about two weeks. So you're right, maybe a big part of the wait here is that my case is not urgent. Except to me, that is. ;-) -
I have an MRI on the calendar, for early November. Finally! The insurance company approved that easily; it was only my primary care doctor's office that messed up the referral. Sigh. I need a new primary care doctor if I'm going to continue high risk screening. They have not handled this well so far. I think they're honestly trying, but failing at it miserably.
In other news, I get to visit Mom next weekend. :-) So far so good with her. I mean, recovering from a bilateral mastectomy is no walk in the park, but she's a trooper. She just got her drains out. We also found out that she won't need radiation. (Chemo need is yet to be determined.) -
sabibah...ask your primary doctor to refer you to a high risk/breast cancer specialist.
I love my primary care doctor, but for my high risk screening and care I asked him to refer me to a high risk breast clinic who in turn referred me to a group of medical doctors who follow high risk women and are very interested in genetics research and so on. They understand all the high risk guidelines and protocols. They arrange my screening and referrals to breast surgeons, etc. My primary care doctor is an excellent doctor...but not an expert in high risk breast health care or genetics!
You may need to do the legwork for your doctor. I actually went into my primary care doctor with all the information for the high risk clinic, including my test results, a letter detailing my family history and why I wanted to be referred to them, my screening results to date, and he happily faxed it all off to them with his own referral cover letter.
I have to travel over 2 hours to the clinic and those high risk specialists, but it is well worth it. -
DiveCat -
Good idea. If my BRCA-1 test comes back with a mutation, I will want to do that. If it comes back with nothing, then that would be a "true negative", and maybe I can relax a little. -
I had my BRCA-1 single site test earlier this week. I chose the spit-in-the-cup option from Ambry Genetics. They usually will not charge the patient more than $100 out of pocket for the breast cancer screening tests, which is nice. We're hoping to have the results back in about 3 weeks.
I decided to get my money's worth out of the appointment, and had the genetic counselor look at my full family history. She would recommend testing my Dad or one of his siblings for Lynch Syndrome too, because of the amount of colon cancer and other cancers (at a young age) in his family. I'm going to give them the information and let them decide what to do with it. If it's not one thing it's another, right?
My MRI is tomorrow. I had to hire a babysitter because my husband got sent out of town on business, and both of my girls are sick, so they can't go to school or daycare. But I'm not going to miss that appointment! -
My MRI results were not great. Two enhanced nodules. The spot that was measured at 9mm on the ultrasound 1 1/2 months ago measured at 1.2cm on the MRI. The other one in the same breast is 7mm, and it was not detected in the mammogram. So, they want to do another ultrasound next week.
Am I correct in my assumption that they want to do the second ultrasound to see if they should do a biopsy? I'm a little freaked out that the fishy spot behind my left nipple seems to be getting bigger. Maybe I should just insist on a biopsy, given my 50/50 chance of being BRCA-1 positive at this point. I don't know. The waiting, waiting, waiting is causing so much anxiety. What would you ladies do?
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