Metastatic Disease

Let’s talk about Metastatic Disease. I look healthy. I look better than I did a few months ago. Maybe it’s that my hair is growing back. Maybe it’s that I’m not on any Chemotherapies right now. Maybe it’s from the California sun. Whatever it is, I have this feeling that when I encounter people and they ask how I am, they expect me to say “cancer free! So glad to have that behind me!” But I won’t say that. Maybe ever. Because the truth is, there is not a scientific cure for my diagnosis (can you get on that Ramsey?). This will be something that I live with forever.

Metastatic Disease or Stage IV Breast Cancer is breast cancer that has spread to distant parts of the body. A metastatic diagnosis can happen to anyone, at any time. Even though only 6-10% of initial breast cancer diagnoses are metastatic, like mine, 30% of people diagnosed with early stage breast cancer will eventually develop stage IV. Even if it happens 20 years from their initial diagnosis.

Here comes the shitty part. Stage IV breast cancer is what kills you.

If you know someone who died from breast cancer it’s because it was metastatic. I know that’s harsh and I’m not looking for a pity party, because I really don’t think I’m going to die anytime soon. But my cause of death is on the table. I mean. We’re all going to die and hopefully we all have long, long lives, but just like anyone living with a terminal illness (and there are many of us, but we look normal and healthy so you wouldn’t know it) the idea of death creeps into your mind from time to time like a cloud covering the sun on a spring day-It’s beautiful and sunny, but you can’t ignore the chill in the air when the sun is not beaming down on your shoulders.

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Now even though Stage IV breast cancer is what leads to death, you may be surprised to know that only 2% of most popular breast cancer fundraising movements are dedicated to the development of research for metastatic disease, according to Metavivor.org. Most fundraising efforts are geared toward prevention and although, that too is important I received my diagnosis despite frequent self breast exams, regular doctors appointments, a healthy diet and frequent exercise.

That’s not to say you shouldn’t #feelitonthefirst, as directed in this blog post and video by one breast cancer survivor, but I am interested in a cure for this disease, so I would like the world to spend a little more time and money researching that!

It’s likely that I will start my new medications next week, Ibrance® and Letrozole, an Aromatase Inhibitor. Ibrance® is a new targeted therapy that is making a huge impact on the length of what they call “progression free survival” (PFS). I’m hoping to have many years of PFS in my near future! In a few months, I’ll have another CT Scan, where hopefully they will determine that there is No Evidence of Disease (NED). They will continue to scan me every 3-4 months just to be sure!

PFS. NED. Mets. Ibrance®. Aromatase Inhibitors. These are words I use now. I’ve already described them a number of times to friends and family members. Every time someone asks me how I’m doing I have to weigh whether they want the whole truth or just for me to say, “I’m good right now”.  I’ve talked to more people about my ovaries then I ever thought I would! It’s a good thing I’m comfortable giving TMI. Like way too much.

Remember that time I was a surrogate? If you don’t and you want to read more about the inside of my body go read this blog: http://wombwombpow.blogspot.com/

If you are interested in learning more about Metastatic Disease or you want to get involved in fundraising for research that will go toward treating Metastatic Disease, check out the following websites and bloggers that I find helpful:

http://www.metavivor.org/

Metastatic Breast Cancer Network

Avon Foundation for Women

http://jillscancerjourney.blogspot.com/

http://www.darngoodlemonade.com/

http://stickit2stage4.com/

 

**Disclaimer: I give myself a time limit for how long I’m allowed to go on these websites or blogs. Otherwise, I’ll never come out of the rabbit hole. I suggest you do too!

 

 

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