#MicroblogMondays - Breast Cancer? Updated 4/30

What a title right? I've posted before about my BRCA2+ status (the breast cancer gene) and how I go through yearly screening, both mammogram and breast MRI. For years, I've tentatively planned to do the prophylactic double mastecomy, but it's stayed in the future...because I really don't want to do it.

I had my yearly breast MRI last Friday, and I got a call back that same day. Shit. I have a "suspicious" .8 cm lesion at 6 o'clock in my left breast. The call came from my Breast Specialist who manages all of my care and screenings. I'm pretty calm when I hear bad news. I'm getting more used to what it's like, so I knew that I didn't and wouldn't have any questions then, but I would soon after. I needed some processing time.

I immediately called my mom (who survived breast cancer at age 44 and gave me my lovely genes). I had already done a quick google search on the reliability of breast MRI and saw that it's notorious for false positives. I also texted my sister who is also BRCA2+ and talked to my husband.

Then the Breast Specialist called back which was perfect because I was ready with some questions. What is a biopsy like? (It's just done with a needle.) So they didn't see this on my mammogram the week before? (No.) I understand there is a high rate of false positives, but since this wasn't on detected a year ago, that's probably bad, right? (Yeah, it's worrisome.).

I also quickly posted on my BRCA Surveillance FB group to see if anyone else had a false positive. And I got quite a few. I was feeling pretty relieved. In my head, there was a 50/50 chance that everything was okay.

That night I was pretty numb, a little snappy at DH. But finally after Dylan was asleep I sat there stewing because he was just watching TV and I didn't want to bring it up myself. Luckily he did and saved himself from my wrath - although I did explain to him how he was almost about to get a huge diatribe. I couldn't stop myself. But he came through.

I went about my life this weekend. On Saturday, I thought about it almost not at all, but yesterday it started creeping back in.

So last night I did some new (better) research. I'm not in the category of just any person getting a breast MRI, I'm BRCA2+ and I have yearly screenings. Lo and behold, there is a study comparing those exact two groups of people (yearly and one time). In that study, the false positive rate for yearly screenings was just 5.6%. Fuck. A different study placed the percentage at 13%, but still, it's extremely likely that I'm in the big group and have...nope can't say it.

So I continued to research. What are the stages of cancer? I'd be anywhere from Stage 1A to 2A depending on whether lymph nodes are involved. That's based on the size of the lesion (under 2 cm). So that's good. But still Stage 1 sometimes uses chemo and Stage 2 commonly does. Although my survival rate would be very high (high 90's) and I truly don't believe for a second that I will not be cured, my mom and aunt are both survivors and my mom's was not caught this early, I really don't want to do chemo.  I've already wondered if I can have my own (long) hair cut and made into a wig for myself. Then I figured that wouldn't work, so maybe if I donate my hair, I can get similar hair? Damn.

And that also means I'm probably going to have to decide very soon whether or not to do the double mastectomy. And I probably will. I mean if my genes are starting to turn at age 34, do I really want to go through this over and over? And that means that I will lose my nipples and have a cut all the way from my nipple to my ribs on the outer side of my chest. Will it affect my marriage? How will it affect me? Not to mention, it's major surgery and I have a 2 year old.

So on Thursday, I go in for a biopsy. If they can find the lesion on ultrasound, the biopsy will be quick and done right there. If they can't, they try mammogram. If they find it on mammo only, I'll have to go to the main hospital to be biopsied. And if they can't find it on either, I'll have to go back for a MRI guided biopsy at a different hospital. I have heard stories where what they see just isn't there the next time...but I'm not very hopeful for that kind of outcome.

I'm tired just thinking about it.

UPDATE - they couldn't see it on the mammogram or ultrasound so I'll have to go in for an MRI guided biopsy. I guess it's good its so small, but MRIs are no fun and now there's more waiting.