Genetic Testing? Worth it?

Bliz

Genetic Testing? Worth it?

Bliz

My oncologist sent me for genetic testing. It has not been processed pending word of coverage from my insurance plan.  I found out yesterday the plan will only pay $500 of the $3500 charge.

Even though I had two aunts die of BC in their 50's, the genetic testing folks, said it is highly unlikely that I have either BC gene.  That was the same info they sent in my written report.  Estimated possibility is 2%.

What do you ladies think?  Does it really seem worth it to cough up $3000 for this?  I would have to borrow money or take out of savings.

yellowrose

I only insisted on the testing after meeting with a genetics counselor.  After doing the math with all the bc, colon, ovarian etc cancers in my family, I came out at a 38% probability that I could be a BRAC carrier.  My insurance dragged their heels but finally agreed to cover the test due to the % factor.  Thankfully, I am negative. 

2%  sounds pretty good but only you can decide whether you need to pursue the testing for your peace of mind.

pgiglio

Hi,

  In my opinion, I am definately for Genetic testing. The outcome could affect the treatment plan. After finding out I was BRCA1 positive, instead of a lumpectomy with mamosite rads, I elected for a skin and nipple sparing bilat mast with implants. If I did not, my reacurrance rate would have been 87% with in 2 years. If you have a family history, I believe insurance has to pay. Mine paid 90% and they wrote off the balance. I had a strong family history, Mom, sister, aunts, grandfathers side, cousins, so that is why I felt I needed to know. I would try to talk with the insurance to see if they could do better, or talk to the people at the lab that do the test. In my opinion, it is better to pay now than pay later. I don't want to scare you, but we have to battle this beast full force!! I wish you luck with your decision. Regards, Peggy

Member_of_the_Club

The first step is to consult a genetic counselor. You should ask this question after you meet with teh counselor because then you can make a really informed decision. You can absolutely meet with a genetic counselor and then decide not to take the test.



Our own VeggieVetSue has a terrific website on this issue: facingourrisk.org

Bliz

The genetic counselor was the one that told me it was unlikely I had the gene.  Later in a written report, she sent me, she said my likelihood was 2%. 

This woman has been very irritating to work with also.  Just can not seem to explain anything simply or even correctly.  Keeps insisting she has left me email messages or phone messages that I do not get. Doesnt listen, just talks.  The list goes on. 

In addition she had the medical insurance breakdown wrong.  The insurance company would pay 80% of a particular cost.  Have no idea where she got the $500 number.  She seems like a ditz.  Not the type to have in this valuable position. 

She is also the one that messed up my Cyp testing. It was supposed to be done at the same time.

So I would like to put alot of space between she and myself.  Too aggravating to deal with.  I dont need it.

Anonymous

I go this afternoon for 2 hours for the 1st of the genetic testing session.  From what they told me, I have to go with other women and learn what all this will entail.  Maybe the first session is about filling out forms???

yellowrose

Rocktobermom,  the forms are very in-depth.  Takes awhile to fill out all the family and personal history stuff.  They may ask back 4   generations blood relations.  More than just bc.  So go armed with all cancers in both your mom and dad's families.  Prayers for a negative BRCA.

kiwikan

I was given pages and pages of info from my insurance company in connection with "is the testing medically necessary?"  I could not find any thing about being adopted and not having any family medical history.  Certainly would make filling out forms easy - lol

Any help in this regard will be appreciated.  Thanks, Ruth

dazedandconfused

Before I would agree to testing I would do some research. What do you plan to do with the information once you get it. I am 5 years out of treatment but for some reason every Dr. I have seen in the past few months has told me to get a gene test. why the new push for it. I think talking to a genetic counselor before and doing some research on the pros and cons would be most helpful to you at this point. Don't rush into anything. good luck with your decision.

otter

This is my experience with BRCA testing. 

My onco surgeon referred me to a genetics counselor because of pre-meno BC in my maternal grandmother and a second cousin in that branch of the family, as well as several uncles with prostate cancer in that same bloodline.  At my cancer center, they won't authorize testing without a pre-testing counseling visit.  There is also a post-test counseling session if applicable.

The counseling visit was worth it. I had to mail the family tree info ahead of time, so when I got there for the appt, the counselor already had everything in the computer to calculate my risk of a BRCA mutation.  It was between 0.8% and 5.3%, depending on the formula.  I thought those numbers were pretty low. 

One of the options for testing was to send a blood sample in to Myriad (the company that does the testing in the U.S.) and let them figure out whether insurance would cover the test.  If insurance will not pay for the test, then the patient is contacted and has the option of cancelling the test request.  If insurance will pay for the test, then Myriad goes ahead and tests the sample without contacting the patient.  I decided to use that option.

Two weeks later, the counselor called with the results, which were good (no evidence of a mutation in either BRCA1 or BRCA2.)  I had misgivings about going ahead with the test, especially once I found out the predicted risk of a mutation was so low for me.  If my insurance had denied payment or only paid a fraction, I was going to cancel the test request.  OTOH, my calculated risk of getting BC in the first place was about the same as my risk of having a BRCA mutation, and we know the rest of that story!

I do think my test results should provide some peace-of-mind for my sister, who is terrified that she'll get BC now, and for all my cousins (daughters of those men who have prostate cancer).  It feels like I sacrificed $3,500 from my lifetime insurance cap to provide reassurance to my relatives, and that's OK.

otter 

badboob67

Ruth,

I am also adopted without access to my medical history. I was dx'ed with bc and mets right from the start at age 38. I wonder if I should have genetic testing although none of my doctors has ever mentioned it. I have 3 sons and no daughters; I have not been able to get a straight answer as to whether or not my sons would have increased bc risk or other cancer risk if I were to test positive.



I do think I would be much more persuaded to have the genetic testing if I were not already stage IV. It is my understanding that one would have to be much more vigilant about tx and monitoring if they were to test positive for the genes.



No easy answers in any of this, huh ladies?



(((HUGS)))

Diane

jerseymaria

diane, when i was diagnosed in 06 the bs said that my daughter was now high risk.  my older son was with me and he asked if there was any increased cancer risk in  him and his brother.  she said that there was increased risk of prostrate cancer.  i honestly can't remember if she said slight or just risk.  she never suggested that my daughter have genetic testing just that she was now high risk.  i would worry about future insurance problems if genetic testing showed possible problems for her.  as you said no easy answers.

hi5

I am the third of 4 sis to get bc...the first one passed at 33.... the remaining sis, myself and all our daughters were tested for the gene ( including the daughters of the sis who passed away) we were all positive for the brca+ gene.... and have all been proactive....my daughter and myself had ooph and hyster, the nieces ( all in their 20's) had prophylactic mast and reconstruction...all of us since Sept. 2007!!!!!   The males haven't been tested yet but they are also at risk... and can also pass the gene to their kids so I believe that if there is family history that genetic testing is definitely worth it. In females with the gene the risk of bc is up to 85-90% and the risk of ovarian cancer up to 45% 

Anonymous

If you are going to be responsible for paying such a large portion, I would check and make sure there is no trials or anything like that where someone else would pick up the tab.  That being said, I had the BCRA test done, and took those results to see a counselor.  It was through her that I was tested for a PTEN mutation, which I do have.  I was beyond thrilled to hear that, to be honest - because now there is a reason behind not only the cancer, but some other issues as well.