Topic: Getting My BRAC results tomorrow

Dejaboo,

I went for genetic counseling in March, and agreed to be tested for BRCA mutations if my insurance would pay for it.  (They did agree to pay.)  The counselor asked me very specifically, how I preferred to be notified of the results.

She gave me 3 options, I think:  1) make a follow-up appt to come to her office, regardless of the results (she would have made the appt that same day, anticipating that the results would be back in 2-3 wks); 2) phone me with the results, regardless of what they were (I live 100+ miles from the facility where she was located); or 3) make a follow-up appt "just in case," but phone me if the results turned out to be negative.

In any case, if the results had been positive, there would have been a follow-up counseling session (even if she gave me the positive results over the phone).

I chose option #2, because I hate the tension of not knowing and having to go to someone's office to get results.  I'd rather just get it over with on the phone, one way or the other.  Maybe your counselor only worked with option #1.  It wouldn't be surprising, especially if you are not very far away.  My counselor was part of a huge, university teaching hospital, and was accustomed to her patients driving long distances for their counseling sessions.

I had a 5.3% chance of being a carrier, and it turned out there were no mutations in either BRCA1 or BRCA2 (yay!).  Your percentages are not very high, so don't worry.  Anyway, you'll find out very soon.

Hugs,

otter 

Dejaboo,

I've not had genetic testing yet, but will be getting a referral from my oncologist next week. 

I just wanted to let you know that I'll be holding positive thoughts for negative results for you!  I too, have a daughter and know how frightened you are.  Warm thoughts!  Warm thoughts!  Warm thoughts!

Great news to you Otter! What a relief it must be to hear the word "negative".

Hugs and Affection,

Michelle

Good Luck when you get tested takingcare.

Thanks swimangel.   Im glad you got back good results!

Ill have to look for somesand to put my head in.

Oh, Dejaboo, if it's not one thing, it's another!  I am so glad to hear that your BRCA testing was negative, but ... why didn't your echo show the heart thing?  Isn't that something echo's are supposed to show?

Oh, man.  Thank goodness your onco was listening to you, because it sounds like nobody else was.  I imagine a cardiologist is next on your list of docs.  You are in MN--there are some great places there for cardio stuff, aren't there?  (Referral I mean.)

When I was a college student, there was a guy I knew who played tennis and was really active--an "amateur jock," sort of.  He was in great physical condition.  Then he found out he would get to go overseas for some kind of training program, and he had to have a complete physical exam before he left.  I don't know what happened next--maybe one of the docs heard something in his heart.  Anyway, this guy had to have a complete cardio work-up just to be sure his heart was normal before he left on his trip.  Well, his heart wasn't normal.  He had an atrial septal defect (patent foramen ovale).  I'll bet that's what you have.  His was corrected surgically, and he was fine ever after.

Here is some stuff about it, from the Mayo Clinic (right there in MN!):

http://www.mayoclinic.com/health/patent-foramen-ovale/DS00728

They claim 1 out of 4 people has that problem.  I had no idea it was that common, but my friend's experience suggested that a lot of people live their lives without ever realizing they have it.  Wow, I just found this, too (same website):

"Patent foramen ovale is generally a harmless condition, usually discovered by accident not in infancy but later in life when a doctor orders imaging tests for an unrelated reason, such as for a heart murmur.

"Alternatively, your doctor may suspect a patent foramen ovale if you experience a stroke or transient ischemic attack (TIA). A stroke occurs when the blood supply to a part of your brain is interrupted or severely reduced — often due to a blood clot. A transient ischemic attack, often called a ministroke, exhibits many of the signs of stroke, but usually lasts less than one hour. Patent foramen ovale is a rare cause of stroke.

"Sometimes a patent foramen ovale is diagnosed due to low blood oxygen levels. This most commonly occurs if you have severe lung disease, such as emphysema or pulmonary fibrosis, which can cause an increase in right heart pressure. If you have a patent foramen ovale, unoxygenated blood can cross from the right atrium to the left side of your heart, further aggravating the diminished oxygenation of the blood and leading your doctor to suspect a patent foramen ovale."

Does any of that sound familiar, in retrospect??? (Except for the part about the doctor suspecting it, which yours obviously didn't.)

Get thee to a cardiologist, I think, at least for an evaluation.

Hugs, Dejaboo...

otter 

I'm so sorry you are going through this, Pam. I'm not a cardiologist, so I don't know what will happen. I do know that my uncle was a 'blue baby' in the 1920s, with a hole in his heart, and I'm sure they had no money, even if they had the technology, to get it fixed. (They put him in a cardboard box when he was born.) He lived for another 60+ years with a hole in his heart being a wheat farmer.


I know you are very scared right now-anyone would be scared who was in your shoes. Please know we are here for you.

Thanks for your replies.

  I do feel a great relief that I was Negative.  I feel utterly exhausted this morning though- LOL

Kathy- How does one research a Cardiologist- or any Dr for that Matter?