So, this isn’t the post that I thought I was going to write. The post I was going to write was going to be a perky update about prepping for my first chemo treatment with a few well-placed jokes about IVs, puking and/or hair loss (I hadn’t really figured those out yet). But then came Wednesday.
You know when you think that the worst has already happened? Well, not like treatment was going to be a walk in the park, but believe me, getting diagnosed with cancer is pretty sucky. Well, that wasn’t the worst. Little did I realize, but the week before, my sister captured the moment my life was about to change… again.
It was this bone scan that showed pretty much every bone from my chest to my pelvis all lit up like a Christmas tree. Just FYI, they aren’t supposed to do that. The CT later confirmed what the bone scan indicated: my cancer has metastasized to my bones, and not just a little bit. I’ve seen the scans. My bones look like they have chicken pox! Now I know why the techs from both tests kept asking if I had any bone pain. For the record, I don’t. More on that later.
So what does that mean? That means that I don’t just have breast cancer, I officially have metastatic breast cancer (aka Stage 4, aka incurable) and that changes everything. Here are a few things to know about metastatic breast cancer, because most people don’t know much about it. Consider it your science lesson for the day:
- About 6% of people are Stage 4 from their initial diagnosis. So yeah.
- In my case, the cancer has spread (metastasized) to my bones. However, I do not have bone cancer. Having bone metastasis is not the same thing as bone cancer as the cancer cells in the bone still look and act the same as breast cancer cells. Silver lining: it hasn’t spread elsewhere. Just my bones.
- With metastatic breast cancer, the goal of treatment is not to “cure” the cancer as that is no longer possible. I will have cancer (and be in treatment) for the rest of my life.
- The goal of my treatment now is to shrink or weaken the cancer, manage my symptoms and side effects, and prevent the cancer from spreading further. Treatments will change over time as the cancer adapts to, and stops responding to therapies. It is hard to predict how long a specific treatment will work in any person. Some will work for many years while others will need to be changed more often.
- My specific cancer’s subtype is called “hormone receptor positive”, which means that I have cancer cells that grow in response to certain hormones. That is why they are treating me with what is called “hormone therapy”.
- I have already started treatment (they started me on treatment before I even walked out of my appointment on Wednesday). I am currently on two different hormonal therapies: leuprolide (a once monthly injection) and tamoxifen (a daily pill).
- The current plan is that after 3 months of this treatment, I will then switch to what is called a “targeted chemotherapy” called palbociclib, which is apparently the latest and greatest in treatments for my type of cancer. The side effects of palbociclib look a lot like the side effects of regular chemo (so it looks like I may still get to lose my hair and puke a lot), but while hormone therapies, targeted therapies and chemotherapy are all “systemic” therapies (meaning they all travel through the bloodstream and treat the whole body), palbociclib targeted therapy is not the same “atom bomb” that IV chemo is. I might still have that pleasure later on.
What nobody can figure out, however, (including my oncologist) is why I don’t have more symptoms. The symptoms for bone metastases include strong, unexplained aches and pains, compression of the spine (causing numbness in my arms or legs), or even a bone break or fracture. I’ve had none of these! In fact, I’m actually taller than I thought I was (only by 1/2 an inch, but still, that counts when you’re my height!). I am choosing to take the lack of symptoms as a good sign – of what, I don’t know, but a silver lining nonetheless.
I am still trying to wrap my brain around all of this. My family and I were more or less ready to go through an awful year, knowing that then it would be done. But it won’t be done. My oncologist equated it to having a chronic disease like diabetes or heart disease. I will never not have cancer. I don’t get to be one of the people in the ads with all of the cancer success stories – the victor, who fought cancer and won. Most people won’t get it because I won’t follow the traditional path of other cancer patients (chemo, surgery, radiation) and, depending on the treatment, I may not even look like I’m in treatment. But I will be in treatment and having tests and scans and anxiously waiting for results forever.
It has taken me a while to even write about this and I’m not quite ready for talking yet, so at this point, I would politely request no follow up questions and, if we’re hanging out, if we can talk about anything BUT cancer, that would be great. For those of you that pray, however, please do!!! So far, the side effects of my treatment have been minimal. Hopefully they will stay that way! But this is still a lot…
So hug your friends and family today. Thanks for listening.
C is for Colleen 