Hi my name is Amy, and I have metastatic breast cancer

So, hi, welcome back to my blog. I started this post a week ago, but needed time to start/sort this more. My brain is a little less mushy now, and there is a plan in place, and that makes things easier. 

For composition and ease...let's start with the narrative.

About a month ago I had some shortness of breath (or SOB as my sister says...better be careful with that use) and a little coughing so I went to my GP. Two CT scans, a couple x-rays, blood work, and a thoracentesis (to sample fluid in my pleural space) later and it's not bacterial, it's not viral, it's not...finally the pathology comes back. I was checking results waiting on a pulmonology appointment (telehealth of course) when I saw the pathology..."consistent with metastatic breast cancer" (aka stage IV breast cancer). I stared, and I think reread that 10 times before the pulmonologist pops onto Zoom. Nice guy, and recovered well, when I was like "so, I think I need the oncologist, and I don't want to waste your time". He was great. We chatted and talked about some options to deal with the pleural effusion. And then I called the oncologist who got back to me a few hours later. It doesn't seem real until you hear it from someone. She gave me preliminaries, I told her I was moving, she said we can get started, and then I can give you recommendations. My oncologist is amazing; it is Dana Farber. So.

Last week was scans, to see where the cancer had spread besides the pleural fluid. Bone scan and another CT, this one of the abdomen since we had one already on the lung area. I have bone metastases, but grateful they're only three spots and nothing on the liver. This actually explains some chronic back pain that started late summer. 

I also spoke with the oncologist for an hour; she answered all my questions and we have a plan -->

The cancer is the same as round one, or as shall henceforth be known, the training round. The good news about this is that it is estrogen/hormone receptor positive, which allows for a lot of treatment options. The bad news is tamoxifen clearly did not work or stopped working to inhibit estrogen binding to cancer cells and division, so we have to move to a new line that requires I am post menopausal. So, a little laparoscopic surgery to remove the ovaries this week, then I can get started on an aromatase inhibitor (I hope you remember intro bio and enzyme inhibitors! ;-) which should inhibit any production of estrogen (since there are other sites in the body that also make estrogen). We'll combine that with another inhibitor, but this time one that inhibits molecules necessary for cell division. It's a CDK4/6 inhibitor for you molecular/cell people. There are a few, I'll start with pablociclib aka Ibrance. That can take awhile to work out dose wise...so adjustments will be made. Good news- both these drugs are pills I can take at home.

Last bit of fun is zometa, which is a drug that is used to strengthen the bones and prevent fractures (yes, this is a good plan, I am in). That's a short infusion every three months with, generally, flu like symptoms for a couple days. Chemo light? Hah.

Basically, we treat this as a chronic disease, switching treatments as the cancer changes and becomes resistant. And going forward, I'll be monitored using scans combined with symptoms and possibly tumor markers if they correlate with the other two as we go forward (we have a baseline now). I am lucky to be healthy otherwise and to have health insurance. So. Lots of reasons to be hopeful!

However, I'm not a fan of this. No stars. But I am a fan of science, and it looks like I'm going to get to participate in some, not via clinical trials yet, but a program at Dana Farber that works on the care and research side for stage four breast cancer patients. Neat. I'm learning everyday, and I look forward to learning more and staying curious. Because that's one way to deal with this :-)

I'm doing pretty well. And I'm looking forward to getting to Ohio (this weekend). This has been in the works for five months, way before all this insanity, and I can't wait to be closer to family (who as always is amazing, supportive and pushing me to ask all the questions as well as moving mountains to help Will and I get back as easily as possible) and my Ohio friends. Will has an awesome job he starts today, and I'll be teaching remotely. And well, the election of Biden & Harris gives me some comfort (and protection for pre-existing conditions), even though we have a long way to go. 

So....we see how it goes. I think posting won't be as fast and furious as last round, and a new normal with ups and downs (hello, life) will be reached. I'm making plans, prioritizing, and saying no to bullshit, so there's that :-) Take care and catch you in a bit....

 

The vast majority (>95%) of funding does not go to research metastatic breast cancer. Metavivor seeks to change this. I posted about them earlier in October, but here it is again. They are working to change this discrepancy and donate all their research funds to metastatic disease.