Welcome to the club. You didn’t ask to join, but here you find yourself. You’ve been diagnosed with metastatic breast cancer (or “MBC” for short). You join an estimated 250K other club members trying to navigate this unexpected path. As a fellow club member, I created this resource in hopes of helping to guide others with things I’ve learned along the way.

Contrary to the incorrect conventional wisdom that you got MBC because you either didn’t take the right treatment or prevention measure, you too were most likely floored by your diagnosis and had doctors tell you that you did everything right and that this should never should have happened.

My diagnosis came after having battled DCIS two separate times over a four year period. After having a lumpectomy, radiation and a bi-lateral mastectomy, you would think that had covered my bets against a re-occurrence. Heck, even my last breast surgeon told me, “You will never have breast cancer again.” I’ll also add that neither of my diagnoses were detectable on mammogram or  ultrasound. 

After I was laid laid off, I was feeling stressed out and noticed my blood pressure was quite high. I made an appointment with one of the general practitioners in my doctor office since my primary was out for a few weeks. The doctor I saw put me on a low level high blood pressure medicine and told me to get a blood draw in a couple weeks to check that the medicine was being tolerated. 

That blood test showed high calcium. High enough that they wanted to test for hyperthyroidism. That was the most common cause of high calcium. The next most common was Hypercalcemia of Malignancy, which was a distant second. Matter of fact, on a blog post I read, they summed it up with, “Thankfully, hypercalcemia of malignancy is uncommon and generally not worth worrying about in most healthy people.  (Really, please don’t worry.  Kindly read on.)“

After a series of additional blood tests, I was diagnosed with Hypercalcemia of Malignancy. I started seeing an oncologist (for the first time in all of my diagnoses) who put me on Palbocib (a targeted therapy classified as a “cyclin-dependent kinase (CDK) 4/6 inhibitor) along with Letrozole (decreases the amount of estrogen the body makes and helps to slow or reverse the growth of breast cancers). 

And since my cancer likes to feast on Estrogen, monthly shots of Zolodex effectively shut down my ovaries’ production.

It’s about a year later and the cancer appears to have halted it’s march for now, leaving me fighting the side effects of these medicines that are keeping me alive. Don’t get me wrong, I’m very grateful and happy to have the cancer at bay, but it still doesn’t make the 17 pound weight gain in three months any more desirable. But that’s a whole other blog post.

Now I try to go to work everyday and “act normal”. Since I do fear becoming a target of my employer for any future lay-offs (due to my high medical costs to their insurance), no one at my work knows about my diagnosis. And I work very hard to keep it that way. I try to hide the inner flames of the unpredictable pop-up hot flashes. I tip-toe around all the awkward, too close for comfort conversations that keep coming up with co-workers. I try to stay under the radar. 

I kinda understand my role as the “Angel of Death” to friends and family now and trying to accept that their perception of me has changed forever. Some will think that because I’m such a “strong fighter”, that I’m going to “beat it”. So, the others out there with MBC aren’t also fighters?

Our destiny is written in our cancer’s genetic code. If we can just put more resources into reverse-engineering these codes rather than putting almost all of it into pink ribbon wearing that completely ignores the fact that up to 1/3 of those diagnosed with an early stage cancer will go on to develop metastatic breast cancer, that would actually save lives.

 

I hope this serves as a useful resource for others with the MBC diagnosis. I also hope it helps educate