Winter 2019-2020

Metastasis

December 19, 2019

Hi all! It’s been awhile since the Walk so I thought I’d pop in with another update. Survivorship is really, really hard. Especially when I STILL HAVE MOTHER EFFING CANCER...IN MY BRAIN! Let me back up and explain.

Towards the end of radiation in October, I noticed some dull headaches that were pretty regular. Right in the middle of my forehead. Nurses said it was definitely just stress and fatigue. After 6-7 weeks of these headaches not going away, I reached out and basically asked for a scan. I just didn’t feel right. They agreed to do the scan, to be precautionary. Because I still have my tissue expanders in which have magnets, they opted for a brain CT scan which I did last Monday.

The next day my oncologist Dr. Seidman called, which was the first bad sign. He said the scan showed 3 concerning spots and we needed a better look. Thankfully, Weill Cornell has a special MRI machine that would allow me to get an MRI with my expanders. So that scan was scheduled for last Friday. Didn’t think much of it. No one called me all weekend so I figured no news was good news.

I was wrong. On Monday afternoon we met with Dr. Seidman in person and he confirmed I had not 3, but FIVE small spots in my brain that were consistent with metastases, aka breast cancer that spread to my brain. Since I had a pathologically complete response to chemo, he was completely shocked. Not the vote of confidence I was looking for...

He connected me with a brain radiation specialist, Dr. Yang. We met him yesterday and he was fantastic. These spots are teeny tiny. The largest is 7mm which is less than 1/3 inch, and the smallest is 1mm which I don’t even know how you see but they did! He said these spots - or lesions - were not causing my headaches...it likely really WAS stress and fatigue. But thankfully I got a scan because I’m in a much more treatable scenario. Many people don’t realize that they have something wrong with their brain until they have a seizure or other terrible problem.

Treatment is “easy.” 4 of the spots will get one large zap of radiation each. One of the spots, which is a bit close to my optic nerve behind my eye, will get 5 smaller zaps of radiation over 5 days to be extra cautious of its location. Then I’ll get an MRI every 12 weeks or so to make sure there aren’t any new spots. And if there are, he’ll just zap them! In fact, there’s a 50% chance more spots will show up in this first year, so I guess I can’t be shocked if I have to do this a few times this coming year.

I also got a PET scan which thankfully did not show any cancer at all in the rest of my body. Celebrating that as a WIN!

So what does this all mean? Well, I’m trying not to get too bogged down with statistics or scenarios or “why me’s” because as my oncologist said, I am not textbook. I am me, in my own scenario, and we will do what needs to be done one step at a time. Am I scared? I mean, yeah. This effing blows. But I also feel confident in the plan and I know I’m at the absolute best place I can be for treatment.

How did this happen? Good question. Dr. Yang said these lesions have likely been there the entire time, even when I was initially diagnosed. They are not in distress or causing any swelling, and they are not growing rapidly, both of which are good. I never got a brain scan initially because that’s not standard unless you are symptomatic of something, and I wasn’t until the somehow unrelated stress headaches in October. While chemo did its job everywhere else in my body, the brain has a “blood brain barrier” that prevents toxins from entering. Unfortunately that means chemo doesn’t really penetrate the brain...so that is how this happened. The cancer cells went rogue and found a safe haven up there, away from chemo. Dr. Seidman is concerned, he doesn’t want this to happen again. So he’s deciding if he may put me on an oral chemo pill. Even though my PET scan was clear, the oral chemo actually does penetrate that blood brain barrier and ultimately has proven to be successful in killing microscopic cancer cells that currently might be undetectable. So if he wants me to do that, then I will. I trust him.

This is a lot to take in, I know. But I’m ok! I feel good. And I’m proud of myself for going with my gut. It hasn’t steered me wrong yet. I just left the radiation mapping procedure, where they made a mold of my head and shoulders for the radiation “mask” I will wear. It’s basically a tight mesh piece that leaves my face open but prevents me from moving at all. I’ll start treatment the day after Christmas and be done by Jan 2.

So, here we go!

January 2, 2020

January 20, 2020