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Topic: brca testing and insurance ???

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Aug 21, 2008 06:49PM

cshamber wrote:

Does anyone know which insurance companies cover this? Could I call my ins. carrier and just ask? Or would that be a bad thing?

Also I was wondering if anyone knew why if my sister has bc (we don't know for sure yet) why they want to test her and not my mother?? My mothers ins might cover it but my sister does not think hers will. If she does indeed have it, my other sister and myself would really like to know if genetics are involved!

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Aug 21, 2008 07:09PM san4850 wrote:

My onc referred me to a genetic counselor.  Because the BRCA test is expensive ($3300 I believe, or somewhere around that amount) and not always covered by insurance, my counselor had to call my insurance company and get me preauthorized first.  Generally if the counselor determines cancer runs in your family, then they will recommend getting the test and they will call your insurance company to preauthorize it---you don't need to make the call yourself.  But if your sister is the only one in your family who has bc (that's IF she does), the insurance may or may not cover it if they don't see cancer in your other family members.  It depends on their policy.

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Aug 21, 2008 07:52PM ddart wrote:

I was diagnosed with breast cancer last summer and mymom has had breast cancer and ovarian cancer. So, my onc recommended the genetic test. My insurance company (aetna) did cover it because of family history and my cancer at age 43. It turned out I do have the BRAC1 gene.  I have had a double mastectomy with reconstruction and a hysterectomy. My chance of a reoccurance with the BRAC1 was 87%, after surgery my chances go down to less than 2%.

Debbie Dx 7/20/2007, IDC, 1cm, Stage I, 0/4 nodes, ER+, HER2+
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Aug 21, 2008 08:18PM 1Cathi wrote:

I was DX in 06 first one in my family know of (however my mom died of Liver cancer unknown primary - she never had a mammo in her life) I saw a new obgyn who had a genetic counsler on staff - they were the first to recommend BRAC test as I was DX before age 50, anyway I have Blue Cross and they paid the entire amount. I was told by the counsler that they draw the blood send it off to lab -the lab will contact the insurance company and if insurance won't pay they will contact your DR/you before proceeding - I was also told results could take up to 6 weeks mine were back in less than 2 - hope this helps. 

Cancer may cause my death. But it WILL NOT take my life. **** Bilat Mastectomy 10/17/08 No Recon Dx 6/25/2006, ILC
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Aug 21, 2008 08:21PM DebSue wrote:

My mother and I both had breast cancer in 2001.My older sister died of it 7/2007.I now have a new, not recurring breast cancer. My onco recommended I have genetic counseling but my insurance co would not pay.It cost $3300.00.The genetic counselor got me in a study at UNC-Chapel Hill for free.   I had the test in June.The only drawback is it takes 3 months to get the results.

1st dx 2001 Stage III,Grade 3,er-/pr- had chemo (A/T),lumpectomy,chemo(5FU),rads Dx 4/21/2008, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2+
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Aug 21, 2008 10:50PM mommy3abm wrote:

I have BCBS insurance.  Met with geneticist today and was told that since I was diagnosed at a young age, 38, the test is considered medically necessary even thought I do not have a strong history of bc or prostate cancer in my family.  BCBS will cover it if it is determined to be medically necessary.

neoadjavant chemo. TAC x4, lumpectomy, rads, tamoxifen, BRAC1/2 neg Dx 7/15/2008, IDC, 2cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Aug 21, 2008 11:46PM cshamber wrote:

First off thank you for all your responses!!! And second I'm sorry I didn't make it clear that my mom does have bc. Second surgery tomorrow as a matter of fact! :(

I am so sorry to see so many young...well, any of you with this disease.

My sister is 44, I am 40 and my youngest sister is 37. So far we believe that my grandmother had it, mets to the bones, my mom and if my sister has it...... My mothers dad died from prostate cancer and I just read somewhere there is a link with that too???

Your responses about the insurance are very hopeful, we all have bcbs, although my sisters is limited.  My gyn recommended that we of course wait to see what happens after her lumpectomy and then see a genetic counselor.

From what everyone is saying here I would say he was right.Wink

Debsue- I am so sorry about your recent dx and your sister!Cry

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Aug 21, 2008 11:47PM cshamber wrote:

Just wanted to add 1Cathi... I love your siggy line!

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Aug 22, 2008 03:54PM lvtwoqlt wrote:

Cshamber, My aunt was dx with ovarian cancer in 1978 at age 38, my mom was dx with breast cancer at age 60 in 2001. My mom's surgeon said that the person that definately has breast cancer would be the one tested first to see if they have the gene. If they have the gene then the children would then be tested to see if the gene was passed on. The testing of the children is less than the $3000 for the inital test because they know which section of the g-nome to look at. My mom was tested and the genetic counselor discussed with the insurace her genetic family tree with ovarian, prostrate, and other cancers. Because of the genetic family tree, her insurance paid for the test. She tested negative and I opted not to do the test after I was diagnosed at age 46 last year.


Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/12/2005 Lumpectomy: Left Surgery 9/10/2006 Lumpectomy: Right Hormonal Therapy 10/12/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 6/1/2007 Mastectomy: Left, Right
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Aug 22, 2008 05:06PM daiseyjean76 wrote:

HI,i was wondering if anyone knows if tricare(military insurance) pays for the testing.i just called them and they said i needed the procedure code to ask my doctor or nurse for it.i go next wed for pre-op for a lumpectomy(hopefully everything will be benign) was told by a radiologist it is probably just a fibroadenoma.however been to young survivors website and talked to a couple of girls on there and they were misdiagnosed by radiologist and dr and happened to be cancer and my husbands aunt was told hers was benign and wasn't so with my family history( uncle breast cancer ,prostate and various others,grandma breast cancer,cousin died from breast cancer, mom lump with calcifications right now and idiot dr in fl just watching since dec.)i don't want to take any chances. thanks

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Aug 25, 2008 11:10AM 1Cathi wrote:

Thanks Cshamber -the quote is from Vince Lombardi (I am not a huge football fan -hubby is) he said that to me when I was having a really crappy day when first DX and I loved it -so now I use it everywhere - even work signiture.

Just to ad to the BRAC THING, what  Shelia mentioned about "being" young and the test being medically necessary is pretty much what I was told because I was pre 50 before DX and I did have a mom w/CA although primary was not known It would be deemed mediaclly necessary.

I have totally lost the web site my counsler gave me for more info - but it was something like BRACNOW -sure if you google you will be able to find it, or if you just go to the  MYRAID LABS site there was alot of info there as well.

Cancer may cause my death. But it WILL NOT take my life. **** Bilat Mastectomy 10/17/08 No Recon Dx 6/25/2006, ILC
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Aug 25, 2008 11:19AM holly123 wrote:

I was wondering if anyone could give me more insight and any experience on the BCRA testing.  I have talked to a genetic's counselor and she thinks that I might be a candidate to have this test.  I was diagnosed in January with LCIS and ADH at 41.  My mother had benign biopsies in her early forties as well, but she died 6 years ago, complications from diabetes and kidney failure at 62.  The only relatives I have are a great aunt and 2nd cousin who have both died from BC.  So far from what I have been reading, the only testing usually done is when you have a mother or sister with BC.  I would like to have it if my insurance will cover it.  But at the same time, I'm scared to find out.  I have also had a large mass on my ovary taken out this year, so I know something is going on there as well.

Well anyway, thanks for the input.  This site has given me much advise from all you Ladies, thanks for sharing.


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Aug 25, 2008 11:45AM lilith wrote:

Holly, my mom had BC age 34, and when I had it at 43 last year, I went to see a genetic onc. He suggested the test, both because of the age and because of Jewish ascendance - it appears to be more frequent there. Sure enough - I was found BRCA2 positive.

My mom didn't get tested. SHe is well and alive - but docs said that she should just continue her surveillance as before (as she is a 40 yrs survivor, I guess it worked!!). My sister has all the reference and will eventually get the test.

of course, the fact that I have the mutation doesn't mean that my mom has it (mutation of the genetic code could have occurred only with me), nor that my sis has it (she could have been luckier!!) - or we could all have different mutations. It is a bit like a lottery...

For myself, that meant having confirmation that having a bilateral mastectomy was the best decision, and I am strongly considering an ovariectomy.

Bilat MX, recon, Arimidex, 3 yrs 6 mths NED and counting! Dx 7/4/2007, IDC, 2cm, Stage II, Grade 3, 1/8 nodes, ER+/PR-, HER2+
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Aug 25, 2008 12:58PM murphmort wrote:

I recently received my genetic testing results.  And I was negative.

When I called my insurance company to determine if they would cover the testing, they said they do not cover genetic testing.  However, I met with the genetic counselor at my medical oncologist's office and she wrote a letter with my risk rate and it was approved. The total cost was $3200, I just have a small co-pay of $247.00. 

My mom passed at 58 from ovarian and I was 46 when diagnosed with DCIS.  My 49 year old sister met with a genetic counselor and they determined she should not be tested as she didn't meet enough of the criteria - this was before knowing my results. 

Even though I am negative for both BRCA1 and 2, I will continue to be screened for ovarian cancer , having the blood test CA-125 and also a transvaginal ultrasound.  I am on tamoxfin for 5 years, so the TVU is part of the normal screening (higher rate of uterine cancer).   I will also continue to have an internal every six months at my ob/gyn. 

Before my diagnosis, I was on the birth control pill as it has been shown to reduce the risk of ovarian cancer.  My cancer was hormone receptive, so I had to get off the bc pills immediately. 

I had already decided that I would have my ovaries removed if I tested positive. 

It is so personal deciding on these surgeries, as we've all heard about Christina Applegate's recent double mastectomy as she tested positive for BRCA1.   Everyone needs to decide for herself what is right. 

Good luck to all.

Dx 2/1/2008, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+, HER2-
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Aug 25, 2008 01:14PM Elliemae32 wrote:

The people who do the brca testing will call you (or your counslor) if the copay for the patient is more that $350 I believe.  If it is not covered then you can opt out then.  I have BCBS and mine was covered 100%

My treatment buddy was born October 23rd and is a perfect little boy! Dx 5/28/2008, IDC, 3cm, Stage IIB, Grade 2, 3/18 nodes, ER-/PR-, HER2-
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Aug 25, 2008 01:28PM wishiwere wrote:

You ladies that had the testing?  Was there a % they gave in regards to the chances you had it?  I only talked on the phone with the genetics dept, and they said just roughly from my family hx, that she thought I had like an 8% chance of having either of them.  And unfortunately I don't remember if I knew at the time that a great aunt had had BC also.  IF it comes as a genetic thing to me, it will be through my fathers line most likely.  Both sides have only 2 girls in each family line, mom and aunt, dad and aunt type of thing back a few generations, so I guess then they use the dad's side also they said. There I had my dad's sister and his aunt who had BC, and a grandmother who died of cancer but it was unknown primary. When they opened her up back in 1964 to do a gall bladder removal, they found she was full of cancer.  At that time, they would just close you up and send you home to die, which is what she did, so we have no idea where it started. She would have been early 60's and apparently had it for some time to have been riddled with it as they said back then :(

Just curious, as this has never been discussed with my docs, but wondering for dd's and sisters sakes.  Anyway know what they use as a cut off to do testing? I remember this lady saying they would suggest for me, but I was wondering if you ladies who had already remember the %'s they might have mentioned before testing you?

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Aug 25, 2008 04:07PM 1Cathi wrote:

I was never told anything about a %,  but the first time anyone suggested I have the test because of my "young" age was this past May 2yrs after DX, my surgeon, onco nor rads onc ever suggested it, I switched to a new GYN and she was actually quite amazed I did not have it already.  as Elliemae stated - I was told the same thing if your insurance will not pick up 100% then the lab will call you/doctor for approval for your co-pay, I was told it would not be more than $300 ever, anyway like I said I have Blue Cross they did 100%.  I am negative for both -yeah at least something went my way!!!Cool
Cancer may cause my death. But it WILL NOT take my life. **** Bilat Mastectomy 10/17/08 No Recon Dx 6/25/2006, ILC
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Aug 25, 2008 06:26PM - edited Aug 26, 2008 11:21PM by tami48

I'm BRCA2+.  My BS wanted me to be tested because my older sister lost her battle with breast cancer at age 47---she was dx at 42.  I have Blue Cross/Blue Shield and they paid the entire cost of the test.  My test was not run through until Myriad informed me that my insurance would pay.

My 23 year old daughter tested positive also.  

I learned alot about BRCA from  facingourrisk.org 

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Aug 25, 2008 06:52PM wishiwere wrote:

Oh Tym, so sorry to hear about your dd testing positive.  I could deal with me, but not sure I could dd.  Mostly the guilt, but the fear she would not be able to get coverage for insurance of many kinds. I know they can't discriminate, but they can raise prices and such.... scary!

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Aug 25, 2008 07:52PM LisaSDCA wrote:

wish - having BC in a dad's sister, aunt, and grandmother might be well worth a consultation with a genetic counselor.Especially if, as you say, there has been a preponderance of sons born, so not that much opportunity for 'female cancers' over the years. I technically would not have qualified under the percentages, as I had only one first degree relative with BC - my sister - and no one else for generations on either side. But she was diagnosed at 29 and I was able to show that no female on my father's side had lived beyond thirty-five for the hundreds of years we had records so an exception was made. I hope and pray you would turn out to be negative, but it is far, far better to be informed.

For your daughter, if you should test positive, make sure she has adequate life insurance before getting tested herself. Genetic results re life or group health insurance is protected by most state laws and will be protected by Federal law on top of that in 2009.



Stage IV mets to brain 11/2008 BRCA-1 positive Dx 1/24/2007, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Aug 25, 2008 11:14PM tami48 wrote:


Thanks.  It was definitely scary when we found out my daughter was BRCA2+.  I worry about her, but I know she has good doctors.  She seems to be taking it very well and will be proactive in getting mammograms, mri's, gyn, etc.  I'm glad that she works at a hospital with good insurance and am hoping she doesn't have trouble down the road.  And yes, I feel guilt.  I mean, I know it's not my fault, but I still feel guilt.  She's my baby! 

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Aug 26, 2008 12:29AM lisettemac wrote:

My insurance paid for my BRCA test, too.  I was 39 when diagnosed and had no knowledge of any family history, as I am adopted.  We initially paid for it out of pocket so that my results would not be in my medical records.  When it came back negative, we submitted it to our insurer, who paid.  So, we did not have to be preauthorized.

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Aug 26, 2008 06:21AM wishiwere wrote:

Lisa, you're very lucky to have had that to pay up front!  Great idea.  One I too had.  The other was when I read that New York is it, where the result is sent to the patient only with no identifiers kept or sent to the insurance or docs?  Why can't it be done everywhere.  I mean, they do that for aides, right?  Annonymous testing?  Seems to me, that would help this situation out immensely!

Although I was dx at 49, I had a lump (we thought was a cyst) since early in my 30, but never did the fnb, b/c my gyn was certain it was be/c it changed cyclic.  But about 10 years ago, that seemed to stop, and I thought then, it was just scar tissue, like with my tonsils.  Had so many infections, they finally never reduced in size after one infection and remained enlarged, although not infected.  Thought the same with the cyst/lump. Then last fall, the cyst part of it disappeared and behind it was this mass/lump that turned out to be a 1.7 cancerous lump.  I keep thinking it had to have been there for much of that time, but.....b/c I lacked insurance, I didnt' have mammo's after the initial one way back when....  stupid I know....but my head was in the sand, saying no way it's cancer, no fam hx...ha!  I just didn't know the hx till I was dx :(

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Aug 26, 2008 04:34PM lilith wrote:

Tym... I am also BRCA positive. I also have a 12 yrs old daughter - and I don't know (and will not know for years, as they will not test her until her 18th year of age) if the problem will come for her.

It broke my heart when she asked me last year if her budding breasts would some time become a cancer.

Bilat MX, recon, Arimidex, 3 yrs 6 mths NED and counting! Dx 7/4/2007, IDC, 2cm, Stage II, Grade 3, 1/8 nodes, ER+/PR-, HER2+
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Aug 26, 2008 05:18PM awb wrote:

I recently found out my insurance company will not approve the genetic testing--they say I "don"t fit the criteria set up by the ACS".  Oncologists nurse sent it back in with more specific info on my mom's bc (ILC) and my LCIS, but they still said they wouldn't pay.  Now I have to decide if it is worth it to me to pay it out of pocket. Oncologist will leave it up to me. I'm already taking tamox and have lost the ovaries (not by choice), so only other thing i would do if positive is probably the BPMs. Would be helpful info for my daughter, but at this age (21) she doesn't want to know.

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Aug 26, 2008 07:37PM - edited Aug 26, 2008 07:37PM by Route53

This is a great topic.  My wife just had her testing yesterday and we are hoping things come back negative .  My wife's mother had a double mastectomy 20 years ago and had one of her ovaries removed.  We have BCBS and it appears to be fully covered.

 Can anyone else confirm: 1) Children under 18 can't get tested? 2) which insurance companies have declined coverage?



Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Aug 26, 2008 11:20PM tami48 wrote:


When I spoke with Myriad about my daughter being tested they said the preferred age is 25.  She tested positive at age 23, but from what I know, they don't test under age 18.  As for insurance, I only know about BC/BS.  At first they said they would pay 80%, then ended up paying the entire amount.  Smile

Hope your wife's test comes back negative!!!  Keep us posted! 

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Aug 31, 2008 05:59PM - edited Aug 31, 2008 06:01PM by KC1

I will be having the test done 10/3.  My Onc. said I should know the results the following week.

I had ILC Stage I at age 43.  I had my ovaries removed last Oct.

Dx 10/10/2006, ILC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Sep 25, 2012 10:49PM beautyx4 wrote:

I have federal bcbs soi am hoping its covered !!!

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Sep 25, 2012 10:57PM beautyx4 wrote:

I just visited my obgyn and she reviewed my family history and that was the first thing we discussed when she walked in to the exam room. Honestly  I had all intentions on discussing the facts of my family history of cancer and was amazed at how she was so willing to educate me with facts and helping me make this decision that same day. She is absolutely amazing and thank god she educated me with some many facts and was able to handle my blood work the same day. I knew alot of my family history due to a recent visit back home. (NJ) I lost my mother to breast cancer at the age of 44, Two Aunts paternal side diagonsed with Colon cancer which one lost the battle. My father just recently had 10 polyps removed and now has to visit every 6 months. Counsin who is my age 34 had a precancerious polyps removed as well as his sister (kids of aunt lost the battle). She had no questoin if i qualified as far as family history. In my years I have been to many funerals and all due to cancer! Sad and that is why i am getting tested and when my girls get older 6,3 and 2 of age they will too be tested. Wish me luck in my results. prayers up blessings come down!

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Sep 25, 2012 10:59PM jacee wrote:

When I was tested, I was told that after me, any of my sisters could be tested at a reduced rate..due to the fact that the DNA strand in our family would have been already identified by my testing. So, rather than pay $3300, they told me my sister's would be $400, that was 3 years ago in 2009. Just FYI

My body has cancer, my spirit does not! Dx 4/27/2009, IDC, <1cm, Stage IIA, Grade 1, 3/11 nodes, ER+/PR+, HER2- Surgery 5/4/2009 Prophylactic ovary removal Surgery 6/5/2009 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 7/5/2009 AC + T (Taxol) Hormonal Therapy 1/3/2010 Femara (letrozole) Radiation Therapy 2/11/2010 Breast, Lymph nodes Surgery 9/8/2010 Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 10/8/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction

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