Relieved and frustrated

I got my results from the BRCA 1 and BRCA 2 gene mutation testing today and I am negative! What a relief to know that I haven ‘t passed this on to my daughters. They will have to be watchful and start getting mammograms earlier than most women, but we can do that.  Actually the rule of thumb is 10 years younger than the earliest breast cancer diagnosis and I am 49. That’s about the age they would start anyway.

While I am extremely relieved and grateful I am also frustrated and a little pissed off. I was told at my meeting that results would be available in 3 weeks (I was tested on June 18) and then I was given an appointment to get the results on 7/30 (6 weeks later!). I was told I should postpone radiation until I got the results. I refused to do that.  In 3 weeks I would have been nearly half way done, in 6 weeks when I was scheduled to be given the results I would be nearing the end.  Once I had my radiation schedule I called to cancel my appointment as it conflicted. I asked for my results to be given by phone and was promptly transferred to the counselor’s phone, where I was cut off when attempting to leave a message. So I emailed her at the address on her business card. It came back as undeliverable (turns out the lower case l is really a 1).  Finally I wrote a letter requesting the results by phone or mail. I told them I was not willing to wait 6 weeks and I could not keep that appointment even if I were. This was Wednesday. They either got it late yesterday or first thing this morning (Friday) and called. And they had the results available.  They were going to sit on them for 6 weeks had I not sent that letter. Actually, longer had I rescheduled for after I was done with radiation. There was no apology for that, just a feeling they were doing me a huge favor by giving them to me over the phone.  I expressed my relief that they were negative and had the feeling (again) they were hoping for a positive based on the response.  I was (again) given a list of family members that should be tested for Lynch Syndrome. I have passed the information and recommendations along.  Given my experience I am hardly going to be the poster child for genetic testing.  At least at that facility. Unfortunately it is one of only two in our state.

I am even more grateful for my doctors and the cancer center having dealt with this other facility.  This was truly the first negative experience I have had since the diagnosis. Well, other than the whole cancer thing.

Numbers games

I’m no math genius but I always thought numbers should make sense and be orderly and neat.  I had my genetics counseling/testing meeting yesterday and honestly, I wish I had skipped it.  I have never felt like a doctor was rooting for the cancer until that moment. Having been given all the “stats” I came away with we are hoping for a positive BRCA  because a negative is basically meaningless and would mean convincing others in the family to be tested until we get the desired (??) results of a positive. The pros and cons of testing were laid out, it was suggested I postpone radiation (not gonna happen) until the results are in. I pointed out I would be more than halfway done by then. I was told results had to be given in person (did I mention I will be in the middle of radiation at that time?). I was told if I’m positive my risk for recurrence is 4-10.3%. My current risk for recurrence after treatment is 10%.  I’m supposed to have a mastectomy based on an increased risk of .3%.  This was when then numbers started swimming in front of my eyes Image.   I’m okay with having an oophorectomy based on increased risk of ovarian cancer but I already have, and am dealing with, breast cancer.  Lynch syndrome was brought up. Apparently I am not at risk but someone, somewhere in the family might be based on more numbers and statistics. I was starting to feel responsible for getting family members to be tested based on stats and probabilities. How would those conversations with the more distant relatives go? “I’m not sure you remember me, but I have breast cancer and I think you should be tested for Lynch Syndrome. What? I have no idea. Look it up”. At the end of all this counseling I was asked how I would proceed with my treatment if positive. I said exactly as I am now.  Then I was asked if I wanted the test while the person asking was nodding their head in the affirmative.  I found myself agreeing and before I knew it I was in the lab.  The very second my blood was drawn I started regretting it.  I really wish I had slept on it. I may have still gone along, but I wish I had thought it through, discussed it with my oncologist or just tried to let the numbers settle a bit.