Day 256/365 How We Got Here

Mom and I are having our weekly date at the infusion center. I thought today I would write about how we ended up here.

Maybe it’ll impact someone.

In the summer of 2016 I had a mammogram. Shortly afterward I received a letter from Newport Hospital, stating that while nothing had come up on the images, because of my “dense breasts” they could not guarantee that the screening was effective. They suggested I contact Women & Infants Breast Health Center for more screening options.

I had received this same letter after previous mammograms. Ironically, I remember having mentioned it to my mother on one occasion, and she had said with the dismissive brush of a hand, “Oh yeah, I get that letter every time too. I think it’s pretty standard.”

So, I never took this suggestion for a follow up seriously, even though my mother had had breast cancer at age 52. Foolishness! I don’t know whether I was afraid, or I had just convinced myself it would never happen to me.

This time, for whatever reason, I followed up. I went to W&I and after talking to the doctor there, and filling out a questionnaire (Did anyone in your family have cancer? How old were you when you had your first child? How long did you breast feed? At what age did you begin menstruating? – Yes, all of these things are relevant, apparently) she informed me that I had a higher than average risk of developing breast cancer. That coupled with my “hard to read” breasts (the nerve) meant they wanted to alternate screenings – MRI and Mammogram – every six months.

It was almost an afterthought to mention that my mother’s cousin’s daughters had all tested positive for the BRCA mutation, an anomality which correlates with a high rate of breast and ovarian cancer.  One of them had passed away in her twenties. Two others had opted for dual prophylactic mastectomies.

I’d never met any of these women. This was just a story my mother had told me in passing.

As soon as I said BRCA, the doctor’s demeanor changed. She strongly encouraged me to bring my mother in for genetic testing. I made an appointment a couple of months out, because they were so booked up. I decided that I would wait until it got closer to tell my mother about it. I didn’t want her to worry.

In the meantime some very stressful things happened involving my children and their dad, and my parents were really worried. Not wanting to add more stress, I rescheduled the appointment for January (never having told her about it to begin with).

Then, dad died.

I rescheduled again, this time for April. I knew we had to go, no matter what was going on. We went, and my mother had the genetic screening done. It is just a simple blood test. They tested her (and not me yet) because if I had it, I would have gotten it from her. Therefore, if she was negative, I wouldn’t need the test. We waited three long weeks for the results, and sure enough she was positive. She had the mutation.

They immediately started talking about more aggressive screenings and other preventative measures…and then they tested me.

Three weeks I waited for my own test results, and I vacillated daily (hourly?) between being sure that the Universe didn’t hate me that much, and planning for the certain removal of my ovaries and breasts. I wasn’t going to mess around with a positive finding.  72% chance of developing breast cancer (as opposed to 12% in the general population), and 47% percent chance of ovarian cancer?

No, thank you. Lop those things off.

In the end, my test came back negative. To say I was relieved is an understatement. Now to support my mother through her recommended preemptive measures. They highly recommended the removal of her ovaries, because obviously she didn’t need them anymore, and there is no effective screening for ovarian cancer. That is why the outcomes are often so poor – by the time a woman feels sick, it is often too late. We were ready to nip this in the bud.

It never occurred to me that my mother was already sick.

The MRI showed three tumors. The largest one was hidden under scar tissue from her breast cancer surgery twenty years ago. Two others were too small to be detected by mammogram.

I’ll be honest, I was really angry about a few things –

Why was she never tested before for BRCA? I understand they didn’t know about this 20 years ago, but in the years since? No one had suggested this to her as a breast cancer survivor?

Why had I rescheduled this genetic appointment – twice? How much better would her prognosis be, had we discovered this a year ago?

What the fuck? Was this seriously happening…NOW?

I know we can’t go down the rabbit hole of what if’s. It is an absolute blessing that I followed up on my damn “dense breasts” when I did. Otherwise, she never would have been tested. She never would have had the MRI that caught the tumor. By the time she felt sick, it may have been too late.

I can’t beat myself up for not following through sooner (although I wish to God I had, and I know it’ll haunt me forever if she doesn’t survive this).

I guess I wanted to share all of this today, because I know how busy life gets, and I know it is scary to think about our own mortality. It is certainly easier in the moment to say that we don’t have time to make the appointment; the time to follow through and actually show up to it.

We often don’t want to listen to our gut, telling us something is wrong.

I urge you, though…follow through, take the time, ask the questions. You could save your life, or at least give yourself the best possible chance.

Mom and me, summer 1992. I was twenty, she was 46 (almost exactly the age I am now).