Should I get tested? Confused

Shayne

just diagnosed monday - dcis - encysted papillary carcinoma - estrogen positive - MRI shows it has not spread.  Planning on lumpectomy.......but surgeon suggested genetic testing since my sister had bc at age 60, brother prostate cancer age 53......Im 54.   We have lots of cancer in my family - but no bc, ovarian or anything - just blood cancers.  

Not even sure insurance will cover it.

Should i bother getting tested?   Would i want to go for a mastectomy if it were positive?   Confused a bit.......

lago

Shayne you should talk to a genetic counselor. They can give you all the information you need to make this decision. At my treatment center they have you discuss with the genetic counsler.

early onset prostate cancer can be linked to BRCA2

Here's some info: linky 

Peacock

Check with the insurance too just to see. My drs didn't think it would be covered, but my ins co said once you get a real diagnosis they cover.

The test is not invasive; you simply spit and it takes a couple of minutes.

lago

Mine was a blood draw

exbrnxgrl

Mine was a blood draw too which has to be sent to Myriad Genetics. Genetics counseling is a good way to go. My all inclusive HMO makes counseling and an on line class mandatory for those who seek testing. Good luck to you. Caryn

Beesie

Blood draw here too.  And yes, I agree with the others.  Talk to the genetic counsellor. That will help you understand the implications of being tested, both if it's positive and if it's negative.  Then you can decide if you want to go ahead with the test or not. 

Shayne

Wow!  you guys are awesome!! thanks for all the info.  Ill call insurance tomorrow morning and find out.  I have Aetna.  Have appt monday with genetic counselor.....and then ill go from there.

So one last question - asking for opinions - if it did come out positive.......would that risk prove to warrant getting a double mastectomy?  I have a tumor that cannot even be felt it is so small, it looked like a cyst with smooth lines - dcis.......i just have a hard time understanding why I would chose that.  I understand getting the test for my daughters sake, but would or should it change my decsion for a lumpectomy?  Even my surgeon didnt think it should, but was leaving it up to me.

would love to hear your thoughts - links to info, percentages etc.......thanks!!

GirlPowerDebbie

You will learn a a lot about percentages, etc. from the genetic counseling.  If you have a mutation there are preventive steps you can take, including mastectomy, having ovaries removed, etc ... and also including just watching yourself carefully. 

My niece had a BRCA1 mutation.  She passed 4 years ago.  I had the testing done after i was diagnosed but I do not have the familial mutation (but I still got BC).  Her sister was just diagnosed with ovarian cancer - she never got tested.  Their mother, my sister, was diagnosed at age 35 and is a 32 year BC survivor.  She was never tested. 

We have a lot of cancer in our family too - lung, liver, BC, now ovarian.  I am finished with my treatment - lumpectomy, chemo & rads - and with my BRCA negative test I was going to skip the prophylactic surgery to help prevent risk of recurrance ... but now that my niece was diagnosed with ovarian cancer I am definitely getting my ovaries out.  I am post menopausal and on Arimidex, so I think I can do OK without my ovaries! 

Anyway, at minimum get the genetic counseling.  Knowledge is power.

Best of luck to you!

lago

Shayne I was going to the bilateral if I tested BRCA+. Ended up the MRI results came back first and there were four spots (especially one) that would have to be  biopsied every year. At that point my BS recommended the BMX and I was totally on board. (That spot ended up LCIS).

But if I tested BRCA+ I not only would do the BMX (I had very dense tissue so that was another reason) but I would probably get the ovaries out too… but I never had the ovary discussion with my doctors. I would need a bit more research before I say yes but I was leaning that way.

You genetic counsler should be able to give you all those stats if they exist.

SpecialK

I had a blood draw on the day of diagnosis because I am adopted and have no access to family history.  I was originally a lumpectomy candidate and my BS felt that if I was BRCA+ they would advise BMX.  I tested negative but elected the BMX anyway (I ended up node pos with issues in both breasts), and the ovaries were not an issue because I had already had a hyst/ooph.

Shayne

surgery isnt for 5 weeks - got lots of time to process.

You ladies gave me lots to think about and consider.......thank you for sharing! 

2FriedEggs

I had several people on both sides of my family that had breast cancer. My oncologist is really into the "familial" cancers as his mom , aunt and grandmother were BRAC positive. He submitted my blood sample for  testing and told me that if  I had to pay over a certain amount of $ that Myriad would call me for approval before doing the test. (Seemed like it was over $350. or $400 I dont remember off hand)  Anyway they did  call me once when the health care refused to pay until they had more info and then a second time to tell me that another  important part of the testing, the Bart test, wasnt approved. My doctor pleaded my case both times based on possible prophylactic treatment. The  insurance agreed to pay for the Brac1/2 however not for the Bart yet. As far as the importance of finding out, my onco said that if you do test positive, depending on which Brac+ you are, there is an increased risk of other cancers ; example the gastric system (pancreatic) , ovaries, prostate, etc. and that it not only enables you to take prophylactic measures if you carry the gene mutation but would enable  daughters, sisters, granddaughters etc to get checked if you were positive so that they to could take preventive measures or have more frequent screenings too.  A woman I ran into at one of my doctors offices was telling me that her sister died of breast cancer last year and that their mom had had bc many years prior. She said she got tested for Brac and came back positive so she had a preventative mastectomy. As it turned out, they found she had. I believe she said, DCIS that went undetected on the mammogram she had had only a month prior to her mastectomy. She said her 2 daughters (upper 20's) both got tested then and were positive- one chose to have a preventative mastectomy  and for now the other daughter is going on a tamoxifin and 6 month surveillance regime.  As the others pointed out, the genetic counselor that your doctor refers you to, will go over your family cancer tree to see if you met the criteria for testing and explain the Brac1/2 and what the increased risks would mean to you and your family members if you did test positive.

lago

Also, if you test positive when your relatives get tested they don't  need to do all the tests. Just the one you tested positive for.

Shayne

Just found out my insurance will not pay - the criteria is pretty strict - and i just dont have enough in my fam history to make it.  I was told it would be $3,500 for the test...... 

not sure im doing it now......and dont think I would test positive anyway...... 

lago

Tell your BS. There is a chance they can fight for it. Maybe the genetic counselor can tell you. Not sure if your insurance will pay for that.

Stacie

My insurance denied it I'm low risk almost no bc in the family. But Mom had pancreatic, and my uncles had prostate and colon. My brother had precancerous colon polips. Pancreas and prostate associated to BRCA. There is also an age factor regardless of history. My MO and the American Cancer Society AND a top genetic researcher say under 50 insurance says 45. There is debate in the field on that age. I go with my doc and the ACS when in doubt. I turn 50 in Nov. We paid $3300 for the test. Should have the results this week or next. My onc does not expect a pos but it's possible. A pos he says increasing my chance of recurrance into the 70%s. Yikes. Buying piece of mind for me but more importantly info for all my nieces, cousins, and my sis..

Shayne

Let me know how it turns out Stacie.....rethinking it myself

ab1234

It's great that you're getting this information and have time to make a decision. I'll just share a bit about my family's story, and maybe it will add to the factors you consider...

First, as far as cost, my insurance also wouldn't pay for the test. BUT, I was getting the test following other family members' positive outcomes, so that test is much less expensive. However, I sought genetic counseling through a research hospital linked to a university, and they informed me that they would run it through my insurance (which we knew would get denied), and in that notification I would recieve my "bill" for the test which was around $800. However, this university hospital had arranged a program where any tests that weren't covered would then have an adjusted bill for 50% of the billed amount. Therefore, I ended up paying $400 for my test. I'm not sure if every research hospital does this, but it could be worth pursuing. I tested positive for the BRCA 2 gene.

 This was following my mother's identification of the gene. Since she was 59 yo at the time and had consistent clear mammograms, she decided to start with the oopherectomy as a preventive measure (her mother died of OC at age 61). Imagine our shock when pathology came back that she had stage 1C ovarian cancer on BOTH ovaries! My mom is/was VERY fit and healthy. We would have NEVER known about her ovarian cancer without this test, and it would have reached deadly stages before we knew. She had many additional surgeries, chemo, and a double MX with reconstruction, which she concluded in Oct 2010. On her last appt, her surgeon said, "You now have a .1% chance of ever contracting breast or ovarian cancer." (As a side note, during my Mom's surgeries her brother died of colon cancer. He never got tested). 

I am 37 yo and on Apr 30, just had an oopherectomy and double MX w/ TE. It may seem extreme to some, but I want to hear the same quote that my mother recieved at the end of this journey.  GOOD LUCK with your decision! 

suzieq60

I managed to get the test done for free at a local hospital who were running a study. I had to score points to be referred there. It was $1600 here in Australia - not covered by insurance. My father's family is littered with cancer deaths and in the process of my research I found one first cousin on my Mother's side who had had bc. My father's sister had died from it and her daughter also had bc.

My main reason for replying to you is to say I decided to not do anything for myself if I had tested positive, it was all about my daughter. In Australia, if your parent is positive the child can get free testing. If they turn out to be positive they get free MRI's. I have to pay $700 for my MRI as they are not covered by insurance but it's free if you have never had bc and are BRCA +ve. So it was all about her - not me.

Mardibra

This is a fascinating thread.  When originally diagnosed, I was asked if I wanted genetic testing.  I couldnt think of any reason why I wouldnt have it done.  When I met with the Genetic Counselor we reviewed my family history and the only cancer in my family was my sisters melanoma.  I ultimately received word that I was BRCA negative.  So,im curious why my insurance company approved my testing given that I only have one cancer death/diagnosis in my family?  I dont believe there is any connection between Melanoma and BC.

Shayne

yes - when i looked up the criteria for the test thru my insurance.....I had to have TWO close relatives (mother or sibs, not cousins/aunts) that had bc or oc before age 50.....if it was 60+, then i had to have THREE close relatives...

and the test was $4000.....  I have 3 sibs who have cancers, one w/bc - but that is the only bc in my entire family.   

I did talk to a genetic counselor....who put my entire family health history thru a computer data base, and even with my sister having bc......I still tested low probability to test positive. She said the flags were getting bc BEFORE age 50.... 

Ginger48

I was diagnosed at 48. My mom was diagnosed 3 weeks before me at age 82. Her testing for BRCA was held up due to a scheduling issue so my dr went ahead and tested me. I tested positive for BRCA 2. My mom's test came back a week later and was negative! Turns out it is from my dad's side. He passed away at age 80 from prostate cancer. One of his sisters and his mom and 2 aunts had breast cancer. It scares me to think that if my mom had tested first I would not have been given this test! All of these relatives were more distant and diagnosed over the age of 60.

I had already had a lumpectomy to remove the cancer. I had a BMX In June and they found precancerous tissue in both breasts! I feel lucky to have had the test. 2 siblings tested negative and one sister is positive. She is 45. I have 2 daughters age 17 and 20 that this may affect.

I wish insurance companies did not have the power to refuse such important tests.

Shayne

thank you for sharing that Ginger!