To BRCA or Not to BRCA?

[PF_PVD]

My gyn/onc insisted I be pre-certified for BRCA testing, and I had a call this week from Myriad Labs saying my insurance company has approved the testing and will pay 90% of the $3,000+ cost.  Mind you they turned me down flat when I asked, but I imagine Myriad has the incentive to be quite persuasive.  

I'm on the fence about this.  My concerns NOT in order of importance are:
Work and insurance:  Can I be sure this information (if positive) won't be used against me in the future if I have to seek new work or health insurance?
Personal factors:  I can't see this making much difference to me at stage iv, as with my family history I should be followed pretty closely for breast cancer anyway whether tested or not.
Familial responsibility:  This is the tough one.  Do I owe it to the rest of my family to be tested?  If so, should I ask them to help defray the $400+ costs I have to pay?  Will they blame me if it's positive?
Purely Selfish:  Do I really need something else to worry about?

I'll probably do what most people would consider the right thing here, but I didn't find this the straightforward decision I thought it would be when finally faced with it, so I would appreciate any thoughts on this.
BTW, my name is Paula and I live in Providence, RI (PF_PVD)

[PF_PVD]

Chemo brain correction -- that is 3 weeks from Myriad and not 6.

[PF_PVD]

I got my confirmation from Myriad that they submitted my sample and I will get the results in 6 weeks.  Leaving holidays out of the equation, I have a lot to look forward to in the next few weeks.  CA 125 drawn at my last chemo yesterday, PET/CT scan, and surgeon's exam, and BRCA results--all to be wrapped up on 01/07/08.  WHEN I am declared in remission, I will be racing for inclusion in the Abagovomab vaccine clinical trial which my onc is all on board about also.  Gotta go--post treatment nausea setting in early (yuk!).

[alanpvegas]

Coming into this thread late....but you were right to do the testing.  Even though your daughter feels this way now, you did the responsible thing.  For example, during her lifetime there may be a cure or vaccine for ovca for those with the BRCA mutation(s)...whoa what a relief it will be for her!  Plus it's important to know not only for the rest of your family but for medical research as well.  I can't remember the name of the famous cancer research hospital in Salt Lake City Utah, but they remark at how beneficial having morman patients are to them because journaling and genology is very important in that religion...so they can trace back through the generations where a mutation occured that caused cancer (they really do this) thanks to that level of research the families already do.  

[PF_PVD]

I had my BRAC blood draw last week, but I'm wondering about something now.  I had seen something about the risk factor for those of Ashkenazi Jewish descent, but didn't give it any thought.  Then, the day after my blood draw, I was talking to my husband about something and it dawned on my that my maternal grandfather was a Russian Jew.  I went to Myriad's website and found out this definitely fit the Ashkenazi description although it may be too far removed.  I believe that there is a separate test for this factor.  I'm assuming they won't just test for this, although I did check the box on the form that said I did have relatives of eastern european descent.  Will I want to be tested again? Does anyone know more about this?  They are supposed to counsel you before testing, but I didn't receive anything that resembled counseling.

[lucymullis]

Just wanted to say that I didn't find your post offensive at all.  There's so many decisions to make with this cancer that it is overwhelming.   I forgot to write that my doc suggested I get completely done with chemo before even thinking about this testing.  I think that was a good suggestion.  Not sure I could have added on yet another stressor.  Let me know how I can help.

[PF_PVD]

Wow! I am offended by my own post.  I'm having a bad day, so I probably shouldn't be addressing this right now, as I know everyone's heart is in the right place.  Time for an ativan and a cup of tea (and the ability to edit our posts).  

[PF_PVD]

I seemed to come off as pretty mercenary, although I tried to make it clear it wasn't just about the money, although I do have to look at that $400 as eight $50 co-pays for Emend or Procrit or Neulasta.  I am the health-care insurer in my family, and I have not been able to work much in the last four months.   Bless all of you to whom a cancer diagnosis isn't a big burden on your finances, but I am not so fortunate.  Still, it was only partially about the money.  Cancer can strain family relations especially those already tenous ones, and I am afraid this will stir things up further than my diagnosis already has.  I have scheduled the blood draw for next week and hope for some good news.

[stephers1]

I would get it done especially if you don't have to pay full price. It cost me 3000.00 and my parents paid half of that. I have two sisters and several 1 cousins and other people who could potentially benefit from knowing that there is a genetic mutation. I did not want them to get to Stage 4 like me and then find out they have cancer. I had a aunt with Breast cancer as well so there was a link. Anyhow it came back NEG thank God. If you can get this test for $400 if I understand that right, I think you should get it. No question.

[lucymullis]

nyc, you have a good memory :)  I insisted on testing although my doc did not push it.  I tested positive and so did my 20 year old daughter.  My sister was negative.  This is really impt. info since now my daughter is at 80% at risk for breast cancer, 40% risk of ovarian and my son is at higher risk for breast and some other cancers.  I researched carefully mastectomies.  However, I had a lot of complications from my wound in my ovca surgery and am not ready to be cut again.  Plus, the breast surgeon said he was concerned about the possiblity of dealing with a recurrence and recovering from surgery.  If I had not been diagnosed with ovca, I would run to the doc to have a mast. done.  I am now enrolled in a high risk screening program and have a MRI or digital mammogram every 6 months.  My daughter is also followed closely.  You are correct that you will have the "deluxe" blood test and your relatives will have a blood test for the gene you are positive for (if you are).  Also, it will be important for any sons you have to be aware of this when married.  
Frankly, I can't see why anyone with this monster diagnosis would not have it done to do everything possible to avoid breast cancer for them and breast and ovca for their family.
One good thing....studies show brca positive women respond better to chemo and have a survival advantage as well as longer progression free time.  Hope this helps

[vrw520]

My mom and I talked about this with her doctor before she passed away. In our family my mother had ovarian cancer, an aunt had ovarian cancer, another aunt had breast cancer and an uncle had colon cancer. The doctor told my mom the testing would be covered by the insurance because first I had a first degree relative with ovarian and second I have other relatives with ovarian and related.
cancers.

It is true that the testing won't change whether or not you get cancer, but from what I understood is that it opens you up for regular screening that is covered by your insurance without changing your eligibility for the insurance.  If by testing positive your doctors have to screen you with regular ultrasounds and whatever other tests they choose to do.... then there is a chance to find it at an early stage when it is still treatable. Isn't that what we are seeking against this disease... early detection. I know that if this had been detected sooner in my mom she would still be here.

[Angie_Lou]

Dear Paula,

I was dx with stage 3C OVCA and have no children.  But, I decided to get tested for BRCA because I have a sister who has sons and grandchildren (one grand-daughter.)  There is a fact that men could develop breast cancer if it runs in the family.

My mother had breast cancer in the early 80s (not a survivor) and our grandmother had an unidentified cancer in 1970 (not a survivor) and with this family history, I did not hesitate to consider the test.
  
Although I tested negative for the BRCA, that is not to say my sister won't develop a cancer.  It just means I don't have the gene and is unlikely that she has it.  However, at some point in time, I believe my sister should get tested if her insurance covers it.  The only bad thing; if you don't have cancer already and you carry the gene, some insurance may consider it a pre-existing condition and that stinks.

Since you have already been dx with OVCA, it will not affect your insurance standing.  If you get tested and it's positive then you, your daughter and your doctor can discuss what preventive steps your daughter should take.  Maybe more that the regular pap smear, etc.

The BRCA gene is not only related to OVCA, but is a related to breast cancer, too.  With the history in your family, I would lean on the fence side that says, yes do it.  If your twin sister has children, she may consider doing it too.  Both you & your sister should discuss this with the genetic counselor that is affiliated with your cancer clinic.  Your daughter should also be in on the session.  She may feel differently after she sees that the reason is in everyone's best interest.

Also, the genetic counselor explained to me that there is an additional technology, which is sometimes not covered by insurance.  If the BRCA is negative, you can have the second technology done to completely rule it out.  The cost for the second technology is around $ 650.

Lastly, they will not automatically do either of the tests if your insurance doesn't cover it.  They contact the insurance company first and will let you know if insurance does not cover one or both of these tests.  I've been told they give an option for payment plan.  Fortunately for me, my insurance covered both.

In the end, it's your decision and you will do what will give you peace of mind.  Best to you.  Angie

[nyc lady]

From what I understand it is first line relatives, mother, father, sibling...so that would encompass your mother, sister, brother and daughter...UGH....has the BRCA testing also been suggested for your mother and sister as breast cancer survivors?  There is an increased risk of over 40 percent for breast and/or ovarian cancers when testing positive.  There is another lady that posts on the site, Lucy...something is her name, her real name is Patsy, she has tested positive and could probably tell you more info....I will see if I can get her to get respond to your post.

Best of luck.
Pam

[PF_PVD]

Well, maybe I have this all wrong, then, but it was explained to me basically, that I will get the comprehensive analysis, and if I have either of the mutations, they will test both of my parents only for the specific mutation that was identified in my test (single site analysis--much cheaper) as either could be a carrier.  If one of them tests positive, my sibs would be tested for the specific mutation.  Heaven forbid this scenario ever plays out.  Also, it is my understanding that men can have breast cancer as well as women.

[SimplyStar]

the resting only takes into tests regarding those 2 genes, they told Leslee that many of the genes that cause cancer have not been indentified yet.  We had it done because her father was on the Atomic tests in 1946 aboard ship at Bikini Atoll and over 65% of those men developed cancer of various types. They were not shielded in any way to protect them from the radiation.

[PF_PVD]

Yes, I do have a daughter and she is opposed to me even having the testing, as she says it won't change a thing in her life and she really doesn't want to know.  If I come out positive, I'll have another conversation with her.  It's more for my mother and my twin sister, both of whom are breast cancer survivors.  My sister also has her own ovaries still intact and two daughters.  The literature I have says that "If you have a mutation, your parents, your children, and your brothers and sisters have up to a 50% chance that they may have the same mutation."  So, this might also be important to my brothers and their daughters, no?

[SimplyStar]

Leslee had it done because she has 3 daughters, it gave them all peace of mind to find out the results were negative for both genes.

[nyc lady]

Paula - Do you have daughters?  If you do, then I would most definately be tested.  The other family members that might be effected if you test positive would be sisters and mother....other then that, your testing positive does not effect any other family member.  

Guess you have to decide if those that benefit are worth the cost.

I do not know the other insurance questions....I believe that if there is no lapse in coverage from one company to another then there is no pre-existing conditions...insurance is so hard to naviagate thru.

Good luck
Pam