Who should get genetic testing?

Raili

I'm not sure where to post this.

Who should be tested for BRCA1 and BRCA2?  How do you decide when testing is necessary/helpful?  My breast surgeon and oncologist have both recommended that I consider getting tested.  I'm in my 30s, three years out from dx - mucinous stage I tumor + DCIS.  I've been through a lumpectomy and radiation and am about halfway through Tamoxifen.  Oncotype dx score 15.  I have no biological sisters and will not be having any biological children.  Breast cancer does not run in my family, but then again, I don't have many first degree female relatives.  My mom does not have breast cancer (then again, she hasn't had any breast imaging in about 7 years, which pisses me off, but that's another topic), and my mom has no sisters.  My dad has one sister, no breast cancer.  My surgeon said that if I tested positive for BRCA1 or 2, then I should consider having my ovaries out.

Is it worth getting tested?  I really hate the fact that Myriad Genetics holds a patent on the BRCA genes.  It's totally absurd that they are allowed to OWN a part of the human body.  Their right to do this is being challenged in the next couple weeks in the Supreme Court.  Breast Cancer Action will be there speaking in opposition - http://bcaction.org/2013/03/20/human-genes-belong-to-human-beings-not-corporations/

I want to refuse genetic testing just in protest of Myriad Genetic's arrogance and greed.  By claiming ownership to your genes, my genes, everyone's genes, they're putting their own profits ahead of our health.  That's unacceptable.

SelenaWolf

This is a tough one.  I, personally, decided not to have BRCA testing because after filling out all the paperwork and looking at my family tree, in both sides of the family in four generations, there was only one other case of breast cancer (my mother) and absolutely no cases of ovarian-, pancreatic-, or colon cancer or melanoma, all of which have been linked to the hereditary BRCA mutation.  I was, also, just past my fiftieth birthday when diagnosed.  So, after consulting a radiolgist friend and a nurse friend - who both worked in the oncology field - I decided that my personal risk was so low that I felt comfortable not going through with the test.  Plus, according to Ontario's guidelines, I wouldn't have qualified anyway.

In addition, I don't have children and have no intention of having any at this stage (I'm 52 years old), so this is not going to impact my immediate family, which just consists of my husband and I.  I have a much older sister who, when I consulted her, said that she didn't feel the need to know, so my decision either way wasn't going to affect how she was going to approach her own health care, which already involves annual breast-, ovarian- and colon screening.

Given your young age at diagnosis, I can understand why genetic testing has been suggested.  However, as you pointed out, you don't have any family history or sisters nor do you intend to have children.  Also, you don't have many first-degree female relatives that this may affect, so the choice to move ahead with this is entirely yours.  So, I would ask you this: if you go through with the testing and if it turns out that you are BRCA+, will it change how you are going to manage your health going forward?  Will being BRCA+ mean that you will want to have a bilateral mastectomy and/or oophrectomy in order to lower your risk of recurrence?  Or will it make no difference?

This is an issue you can always revisit if your family history changes; for example, if (heaven forbid!) your mother or one of your first-degree female relatives develops either breast- or ovarian cancer, thus increasing your risk that a genetic mutation may be possible.

Annette47

I agree with Selena - since you don't really have other relatives (daughters, sisters etc) who would be affected by knowing you are positive, then you need to think about whether the knowledge would change your approach to treatment or not.   

In my case, I am being tested - I am 45, my mother was diagnosed (but not until she was 75); she is my only first-degree female relative but her brother and father both had prostate cancer which can be related and her mother had colon cancer; and we are Jewish (which raises the risk).   The main reason I am being tested though is because I have two daughters and I want to know what their risks are.  

I waited until after active treatment to have the test done because I decided it really wouldn't change my approach to treatment (I was not interested in a pBMX), although if it turned out I was positive (I'm not expecting it to) I might have to consider the oopherectomy.  It wouldn't be a no-brainer for me though - would take some research, thought, and consultation with a genetics expert.   If it weren't for my daughters, I'm not sure I would have bothered to take the test.

pupmom

An odd thing is that I have bc, colon and pancreatic cancer among first and second degree relatives, yet I tested negative for BRCA. 

Moderators

Hi Raili,

The main Breastcancer.org site's section on Genetic Testing could be helpful -- specifically the Deciding Who in the Family Should Get Tested page.

Hope this helps!

--The Mods