Waiting to exhale

I finally got the call back from my mammogram. This wasn’t just any mammogram.. it was the first one post diagnosis.  I don’t recall ever having to wait more than a week for results before.  Usually my doctor would call in a day or two to say all is well (or not..in the case of last year’s) and then I would get the generic pink form letter from radiology confirming.  I knew that my doctor(s) got the results a week ago. Still, I hadn’t heard a peep from anyone.  I called the cancer center yesterday and left a message which was finally returned this morning.  All clear.  I was too happy to ask if it was common practice to make a breast cancer patient wait for results of her mammogram.  I know they are read the day of the test or the next day at the very latest.

No one on my team of medical experts has used  the words “cancer free” yet. Or even “no evidence of disease”.   Since these are the same people who had no problem making me hold my breath for over a week I’m going to assume they just don’t see the value in putting cancer patient’s minds at ease, so I’ll say it. Cancer Free!  

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.