Genetic Test Anxiety

I ended my treatment in November and had the appt in Feb.

I chose NOT to have the genetic test at this time.One reason was the incerdibly long wait for results in canada (6-8 MONTHS). As well there was really not a lot in my family HX that suggested that I wowould have gentic cancer.

So instead of living my life right now, waiting with that on my plate.I chose to live my life.The BRCA test is a Good tool, but it is NOT a definitive answer.

I have two girls, aged 9 and 11.  They have watched me go through my surgeries and complications (a failed flap resulting in lots of extra surgeries!), and they understand that it all relates to the cancer that runs in the family.  They have been told that it relates to a gene, that they may or may not carry and that they can be tested when they are adults.  I gave them very basic information at first ("I am having these surgeries to make sure that I never get breast cancer, as there is a lot of cancer in my family"), and then answered questions when they asked them.  Over time they are getting the entire picture.  I am treating it like I would treat any other sensitive discussion (eg - sex education), and giving bits of information as it comes up in discussion.  I am sure it is quite different with older kids.  My siblings have girls who are entering their 20's......

My sister has watched the movie "In the Family" with her daughter.  You can order it online:

http://inthefamily.kartemquin.com/film

This film follows a 30 something-year old woman as she wrestles with surgical decisions after finding out that she is BRCA1+.  It is an emotional and moving film.  Now is probably not the right time, but IF you are positive it may be a good resource for you.

Another wonderful resource for young women is a website started by Lindsay Avner, who is also BRCA positive, and had a preventative mastecomy in her 20's:

www.bebrightpink.org

I believe that the FORCE website has a webcast that addresses how to discuss these issues with your children.  I havent watched it, but it might be worth looking at.  Follow this link, and then look about half way down the page:

http://www.facingourrisk.org/hereditary_cancer/family_history.html?PHPSESSID=65e81aa9c38656ec6f6d821a3bb8f0d3

It may be too early in your journey to look at all these resources, but it is important to know that there is a lot of support out there, and many others who have wrestled with these same issues.  You are not alone!

I am so glad that you will not have to wait long for your results.  The waiting is so tough!  Even if you are positive, remember that your children will only have a 50/50 chance of having the mutation as well........I hope desperately that my children and neices will be negative!!!  What a gift that would be!!!

Re: the risk of other cancers....yes, risks of some other cancers are increased, but not nearly as much as the increase in risk for breast and ovarian cancers.  I did see a dermatologist to look at my skin and review what to watch for regarding skin cancers, but even with the increased risk, the numbers are not super-scary to me.  I am BRCA2+, and was told that my risk of melanoma is double that of the rest of the population.  That sounds very worrisome, until you realize that the lifetime risk for the average person is 2%, so even with the increased risk my lifetime risk is still only 4%.  I can live with that!!!  My understanding is that the risk of colorectal cancer is not elevated with BRCA2.  Pancreatic cancer is a risk, but with no great screening tools for it I try not to worry about that one too much.  Again, the risks are no where near the risk of ovarian and breast cancer, and those risks were ones that I could virtually eliminate with my surgeries.

The FORCE website has good information on BRCA and other cancer risks:

http://www.facingourrisk.org/risk_management/other_cancer_risks.html

Somewhere along this crazy BRCA journey I wrote this quote in my journal: "If there is a solution to the problem, what is the need of worrying.  And if there is no solution, what is the point of worrying?"  It is hard to not worry, but sometimes I need to remind myself to only focus on what I can control, and let go of the rest!  This has certainly been a great lesson on taking one day at a time!

The waiting is so so so hard!  To be honest, the waiting (for the test results, and then waiting before surgeries) is the hardest part of the entire journey!  

Be kind to yourself over the next few weeks!  

Let us know how it turns out for you!  Wishing you the best....... 

Kathy

I was totally freaked out after my genetic counseling session because I also left feeling like the counseling session sounded like it was a sure thing that I would be positive.  I was a wreck.  I have two girls, my mom had ovarian CA etc. etc. etc.  It was during the holidays so the testing was postponed, results postponed etc etc etc.  In the end after several weeks of major anxiety and lack of sleep....I was negative.  My mom and I have BC and OC one year apart was just a fluke!  (My mom was negative also)

I hope your results are good and everything else goes smoothly from here.

I'm in Canada and I have been waiting since July 2008 for my results!!!!!

I only had it done because I have a daughter, otherwise I would have said forget it.

Pugman,

The waiting sucks!  I'm BRCA2+.  My daughter (age 24) is positive, so are my 2 nieces (ages 25 &27).  They are under close surveillance from their doctors.  My brother was negative (thank goodness).  My other family members don't want to have the test.  

Let us know how it turns out....am hoping for a negative!!! 

I just wanted to let people know that I just received the result this morning that I am negative for BRCA 1 and BRCA 2.  My mother has BRCA 1 and my father's family has a history of breast cancer.  I was convinced I inherited the gene!  And I am a definate worrier.  So, if you are thinking about having the test but haven't done so because you are scared and convinced you know the results, I would suggest taking the test.  It relieved my anxiety, and had I found out I inherited the mutation, it would have allowed me to take advantage of early screening and prevention that would helped me live a long and healthy life. 

Late addition, this is from my genetic counseling session letter:

A negative result is considered inconclusive because it cannot exclude all possible genetic causes of breast cancer due to limitations in our testing, which is estimated to detect about 95% of mutations within these 2 genes as well as the potential for other breast cancer genes which have not yet been discovered.It is also possible that an unclassified variant could be indentitifed which can be difficult to interpret.

Please PM me with any questions.

I am not here to argue, but to add a perspective.Even my oncologist, while TRULY happy to have the BRCA testing in place does believe that a lot more research needs to be done.

I met a young woman, while I was undergoing breast cancer treatment.She was 24 years old and had a great grandmother die of breast cancer.There was no other breast cancer in the family.She had heard about the BRCA gene, watched the doc and joined a website.She made it her lifes mission to make sure that she focused on breast cancer, and possibly having the BRCA gene.She lived like she already had breast cancer.

This is an extreme case.I'm sorry, maybe having gone through it at the age I did, this would not be my focus in life.It is never 100% given that you WILL get breast cancer, even with the gene.I hate to see woman living like they already have it.

I think awareness is SUPER important and thank GOD for the test.But there is no need to be alarmist, just smart.

Woman who do not get tested are not uninformed, or scared, or stupid.I am a highly educated person, and I chose not to have the BRCA test.Because of the facts I was given

End of story.

For sure, I got a nice typed 3 page report on risk factors, even telling me I was in the "low risk" catagory and detailing everything about the situation for me.It was very nice that it is tailored to every single person.Considering all the information I am glad I made the decision.

I also feel empowered that I did what I had to do, I am truly grateful that I did not have to remove my breasts, got the treatment I needed and can now move on with my life.

And they will never try and persuade you one way or the other,it is like a test drive so to speak.

sssarah, if your Mom carries a BRCA gene mutation it is something she was born with (passed down to her by her Mom or Dad), and not something that developed during her lifetime.

If she did test positive for a mutation you should be able to find out from her which specific mutation she has.  There are many many many mutations on both BRCA1 and BRCA2, and knowing which exact mutation runs in your family makes testing much easier and cheaper.  This information outlines exactly where on BRCA1 or 2 your Mom's mutation lies (mine for example is BRCA2 7699delC, which basically means at point 7699 my genetic code is missing letter C).  If your Mom can give you this kind of information about a mutation she carries, then you should definately seek out a certified genetic counsellor to discuss the pros and cons of testing.

The other possibility is that your Mom's doctor thinks the cancer may be genetic as there is a strong family history, but that when they tested her they did not find a specific mutation.  This situation is what is called "uninformed negative".  It refers to families in which cancers are likely hereditary, as there is a strong pattern, but the genes that are possibly causing the cancers may not yet be identified.

Does that help to clarify things a bit? 

If someone posted this stat I missed it & apologize. Last time I checked the odds of bearing & passing on the BRCA gene was about 8%.

My mom had bc a few years b4 I was dx'd. I have 4 sisters who all seemed to be flying under bc's radar & I was not planning to do the test until my dd questioned us about prophylatic mast at 15!!!!! Tho we have never made a big issue of it, she has lived with bc since she was 7 (I guess she doesn't remember a time it wasn't part of our family)  I thought long & hard about what I would do with the info once I had it........since there was NOTHING she could do for years (but the knowledge might benefit my sisters.) It was difficult anticipating how to deal with the possible positive result......I understand.

Since I have mets, I have had lots of practice waiting for results. It has gotten easier for me, but sometimes it can still be dicey for dh & my kids cuz subconsciously I think it is simmering on a back burner in my brain while I wait,,,,,,,,prayer seems to help in the worst moments of panic. 

One of the greatest gifts I ever gave my girl was the negative result! So I can't tell you what I did when I learned I was positive, but I offer my support & prayers that wisdom & courage accompany whatever your result!

HUGS-be well & stay strong 

PugMum - so happy to hear you tested negative!!!!!!!!!!

I think it's important to go to a genetics counselor before you choose to get tested because based on your history, he/she will run an algorithm to determine your risk so that you can make an informed decision. In our family, my mother had breast cancer (died at year 7, 3 weeks after recurrence) and her mother and all her mom's sisters had female hormone related cancers. The geneticist was really sure I'd come out positive since I meet the other criteria for the BRCA gene. In particular, I was concerned for my daughters.  The test came out negative and was fully paid by the insurance company.  My daughters are very grateful that I took the test for them. Just another point of view.