Gene Testing

vnorman

I was just DX with DCIS and have decided to get gene testing.  I want all of the information that I can get before I make a final decision.  Has anyone else had gene testing?  Did it affect your decision? Did your insurance pay for it and if not what was the out of pocket cost to you?

shannonW

I had the BRCA 1 and 2 test, mainly b/c 1) I have daughters 2) I have sisters 3) It does help in the decision process re: other breast and ovaries(greatly increases risk of ovarian cancer shld u test positive). My insurance paid for it BUT I had a deductible to meet AND had not yet met it all for that test. The test cost about $3000 and my out of pocket was $1100. They will let me pay that $1100 interest free over 24 months.

Update:

I wrote a letter and asked if they would accept pay off completely at $650 my portion. They did! Doesn't hurt to ask

vnorman

thanks for the information

sweatyspice

I was tested also.  I'm descended from a culturally identified risk group, my maternal grandmother died of BC, my mom doesn't have mammos, and I'm an only child (so the sample size was too small for me to be confident that there wasn't a significant 'family history').  I was trying to make a decision about lump or mast, and also whether to remove my ovaries.

At first my insurance co denied payment for the test, then the Dr handling the genetic testing sent a letter explaining why she felt it was medically necessary.  Insurance then approved it.

This was pretty late in the year and I'd already fulfilled my deductible, so I did not have to pay anything out of pocket for the genetic test. 

I tested negative, which definitely played a part in my treatment decisions.  Had I been positive, I'd have had a BMX and ooph.  Instead, I had a lumpectomy and still have my ovaries.

Laurie08

I was also tested.  Insurance paid for the test since I had been diagnosed.  It was actually something I was pursuing prior to my diagnosis due to family history and risk etc.  For me I knew I wanted to be aggressive surgery wise and wanted the BMX regardless of what the test showed.  If I would have been positive for either 1 or 2, I would have had my ovaries removed as well.  Good luck to you!

CTMOM1234

I was tested for the BRCA1 and BRCA2, and it was fully covered by our insurance (in the $3K range like others have posted). Thankfully the results were negative. Waiting for the results was an extremely stressful period, one of many during the data gathering phase, but it is in your best interest to make as educated a decision as possible.

MamaMia41

My surgeon recommended I have the genetic testing due to my age and my family history of cancer.  Fortunately, I tested negative for the gene mutation, but had I tested positive I would have opted to have a bilateral mastectomy instead of a lumpectomy, and would have to be watched closely because of the ovarian cancer component and most likely have those removed at a later date.  My insurance covered most of it, I owe something like $275, which isn't bad considering the high cost of the testing.

I would absolutely have it done prior to making any surgery decisions so you can be in control and avoid having more surgeries than necessary.  I know a women who had a lumpectomy and radiation, then had the BRAC Analysis done a year or so later; she tested positive and then had a bilateral mastectomy, and her ovaries removed shortly thereafter. She said she wishes she would have had it done before the lumpectomy, but is glad she did it when she did. 

azul115817

I was 44 when I was diagnosed last fall with DCIS.  Given my age at diagnosis and the fact that my grandmother had ovarian cancer, my doctors wanted me to be tested. 

I had 2 tests run - the "normal" BRCA test and then the follow up BART test (not sure if that's the right name?).  Combined the two tests came to about $4,000. and my insurance covered it all.

My tests came back negative, but the genetic counselors said there still may be some genetic link between my grandma's cancer and my own.  It's just not the BRCA gene.

At the time I was tested I knew that I would have a bmx if the test came back positive.  I believe that contemplating the bmx early on made it much easier when I eventually had to have one after having a lumpectomy with narrow margins. 

Good luck with your testing!

Heidi

AlohaGirl

I had genetic testing at my surgeon's urging, primarily because one of my fist cousins once removed (I think that is the right term -- my father's first cousin's daughter) tested positive for BRCA-1 and there is clearly a pattern of breast and ovarian cancer in the descendants of my grandfather's sisters (though none in my parents, siblings, aunts, uncles, first cousins or grandparents).  Also I think because my DCIS was found on my first mammogram right after I turned 40.  Happily for me, I tested negative.  If I had tested positive, I would have at least very seriously considered bilateral mastectomy rather than a lumpectomy and radiation.  My test was covered by insurance.  As I understand it, the test was less expensive because they could just look at the part of the gene where my cousin's mutation was, rather than at the whole thing.

vnorman

I went for the gene testing today.  The counselor is not sure that my insurance will pay for it but I told her that I would find a way to pay for it out of pocket if the insurance wouldn't pay for it.  The cost is $3400 but i think $3400 is worth the piece of mind I need.

CTMOM1234

Good luck vnorman and may the wait time pass quickly!

sunshinegal

Good luck, vnorman!

 I had the genetic testing done in November. Insurance paid for everything, probably because my mom was diagnosed w/ Stage I last summer, and there are several cancers in her family. I also have 2 sisters and it felt important to know. I was negative, thankfully, but as others have said there are probably genetic factors in play that they haven't mapped yet.

vnorman

did you get your results before surgery or had you already had surgery when you got your results?

cmesker

I was tested on the recommendation of my surgeon and due to my mother having had DCIS 3 years prior at age 51 and me being diagnosed just after my 35th birthday.  My insurance company covered it 100% due to diagnosis and family history.  Luckily I did not have the gene mutation so I can keep my ovaries for now (had a hystorectomy in 2009) and didn't have to deal with that surgery on top of the lumpectomy/node removal I had last week. They said the results can take up to 3 weeks, but mine were back in 1 week. Good luck!  

OmaRoo

I had my blood drawn for BRAC test last Monday & was told they would send it to the lab and THEN the lab would submit it to my insurance.  They told me that if it was going to cost me more than $375 out of pocket they would contact me.  I haven't heard anything.... and not sure what to think.  I don't know if they are still waiting on insurance to make a decision, or if insurance approved it & they could be running the test?! 

Waiting hasn't been easy, but I'm trying to keep my mind on other things. Still.... feeling somewhat nervous.    It was just 8 weeks ago that I had my mastectomy.  It's hard to imagine that if the test comes out positve I would be facing the possibility of another surgery.

vnorman

OmaRoo,

I am also waiting for results. I did the mouth wash instead of the blood drawn. I was told that they would contact me if the insurance company did not cover it.  My doctor suggested I not have it but I need the peace of mind that the test will give me. 

Emaline

My old surgeon recommended this to me on Friday.  She said insurances will basically cover for anyone who has cancer under the age of 50.  She wants me to get it done immediately so I can decide if I want to BMX.  I'm not on board with the BMX...yet. Everytime I feel like I'm adjusting, something new comes our way.

OmaRoo

I have not heard anything regarding results of genetic test yet.  It's been long enough that it's safe to assume that insurance has agreed to cover it.  The nurse originally told me it would only take a week to get the results.  Then later someone told me it would take 6 weeks.  When I looked at the myriad lab website it said sometimes results can come as early as 2 weeks.  It's been 3 weeks so far.  I am not expecting it to be positvie, but I guess you never know.

 EMALINE, I have the same feeling... everytime I think I am adjusting, something changes.  I keep telling myself that's LIFE... and a good sign that I am still alive!  We have to adjust on so many levels... physically & emotionally.... and there is so much unknown. 

Deirdre1

I had gene testing (BRCA 1&2) at the recommendation of my daughter's doc.  She was concerned that my daughter fully understand her risks as it was my father that has died from bc.  I was told by the insurance company that they wouldn't pay (because they didn't have data on bc from male's to daughter's) but in the long run and because Medicare does pay for gene testing for daughter's of male bc patients, they did pay.  I paid for it up front (so I could have the results asap) and then they reimbursed me approx. 3 months later.  The genetic map was very detailed and showed that the risk for cancer (general) was very high so I also had a breast MRI (at the urging of the genetic councelor).. I had had years of clear mammo's but with the MRI there was the DCIS - I would probably have never know had it not been for the MRI!  Or at least I might not have know until and unless the bc became invasive!  I had another mammo, digital mammo, and sonogram all were negative and they were done withint a few days of the breast MRI.  Because of the confussion of the docs, several of them insisted that I should certainly be BRCA +, I had the lab recheck and that was another $600.00 charge, but in this case I got the same results.  There are several gene tests but I think it is worth noting that there are very likely gene connections that have not yet been discovered.  Good luck and I hope everything is "clean" for you!!!  Best, Deirdre

vnorman

OmaRoo,

I had the gene testing and my doctor's nurse called me with prelimary results on Friday. My insurance company agreed to pay the cost and the results came back negative.  I have an appointment with my doctor tomorrow to discuss options and schedule surgery.  The testing was worth it.  I no longer have to worry that it might be postive.

alamik

I was tested due to a strong family history of cancers. I do have the BRCA! gene mutation. It doesn't just have to be breast cancer that can determine your chances of having the mutation. They have found that having the mutation can put you at risk of developing other cancers like ovarian, colon, pancreatic, stomach and other cancers. It also puts men into risk for prostate cancer.  Like any other gene, your chance of it being passed to you is 50% from one parent. researchers are finding out that besides the BRCA mutations, There are several other mutations that can cause breast cancer. They expect that for some women who test negative for the BRCA1 or BRCA2 mutation, that they actually do carry a mutated gene that is responsible for their breast cancer. Most think the mutations will be discovered in the near future and that heredity carries more importance than we even realize for breast cancer and all other cancers. This is kind of scary since so many women choose to have a BMX based on their BRCA results. I wonder how many women will be retested and found positive for any new mutations discovered and then follow up with a BMX. 

It took about 10 days for me to get my positive results. The cost is about 3000 dollars but can be more expensive with the BART added in. I had planned on a BMX anyway way since I am triple negative with a large tumor. According to my test results, I had about a 87% chance of getting breast cancer and a 44% chance of getting ovarian cancer before the age of 70 because of the BRCA1 mutation. I was diagnosed last year at the age of 45. So after chemo and breast surgery and rads, I will then have the ovaries removed. The whole thing is maddening!! I have two sisters, 2 daughters and so many female cousins. I hated making all those calls, especially my daughters, that they need to go and get tested. I can't ever describe how guilty I feel that I might have passed this down to them. I know that's crazy because it's not my fault. I actually cried when I had to tell them. I don't know how I'll feel if they test positive.

I wish you the best and hope that you are able to take all the information that will be given and make the decision that's right for you. It just all seems confusing at times because so much gets thrown at us in the beginning.

OmaRoo

I called the nurse today to ask if they had any test results from the BRCA1/2 testing.  Turned out my results were in my file, but no one called to let me know.  Anyway, turns out BRCA1 is negative.  BRCA2 is "variant of uncertain significance" & she said it has a note that it's one they haven't seen before.  Does that happen often?   How often do they actually ask to test other family members? 

 I asked for a copy of my report to be mailed to me... since I don't have an appt until the end of June.  I feel like I am in a little bit of a daze.  Really glad to have this forum to turn to.... 

sweatyspice

OmaRoo -

I have no answers to your questions.  I'm wondering who might know...when I did my BRCA test there was a genetics MD involved as well as the nurse.  Did you have a similar team, and if so, can you call the MD? 

OmaRoo

We moved to West Texas not quite 2 years ago. So when I found out I had breast cancer I didn't really know much about the doctors or medical community here.  I am not happy with my primary doc, so am looking for a new one & I have only met the oncologist once. But  I think I will call today and see if I can get an earlier appt to discuss the genetic results.   

 I do have an ob/gyn who I think I will call, too. 

sweatyspice

I had to see a Dr who specialized in genetics to get the test, she gave me the explanatory talk and her nurse drew the blood.  I guess it doesn't necessarily always work that way, and it's just how that particular hospital was organized...

slinky

I was tested and was found postive for the BRCA1 mutation.  I provided my siblings with my results, which cut their cost of testing to approximately $400, since the test already identified where the mutation was.  Supposedly, it made the labwork easier.  My insurance covered it and my siblings insurance covered theirs.

OmaRoo

I called Myriad medical services today to ask some questions about my test results & the woman I talked with was very helpful.  I was told that it actually fairly common to have a variant that has never been seen before. In fact, it's about every few days they get a new one that hasn't been seen before.

 She suggested that I talk with the doctor (or genetic counselor) about enrolling in "variant classification."  It involves filling out very detailed extended family medical history... and it is from that information that they decide whether or not to request testing on other family members.  (She said the testing would be free.)  

 So I don't really know much more than I did before, but at least I know the next step to take.

sweatyspice

Interesting!  Thanks for letting us know.

WorkingMom10

I'm trying to decide whether or not to have this test. I am 43 and was diagnosed with high grade DCIS last month. I don't have a family history of breast cancer except for my father's aunt and cousin that died of BC. I will likely have a lumpectomy in a few weeks. Any advice would be greatly appreciated!



Christine

WorkingMom10

I'm trying to decide whether or not to have this test. I am 43 and was diagnosed with high grade DCIS last month. I don't have a family history of breast cancer except for my father's aunt and cousin that died of BC. I will likely have a lumpectomy in a few weeks. Any advice would be greatly appreciated!



Christine

Moderators

Here is some information on the BCO site about genetic testing that you might find helpful. 

http://www.breastcancer.org/symptoms/testing/genetic/

Debbie