In 2010 when I was diagnosed with Metastatic Breast Cancer, I was shocked, dismayed, annoyed, angry, stunned, and overwhelmed. Even though in the back of my head I already knew when the oncologist’s office called and said the words “Your cancer has metastasized.” I sat outside of the office building where I was working, called my husband, and cried while I sat and waited for him to drive the 20 minutes to pick me up. I knew the statistics of people (not just women get breast cancer) living beyond five years with metastatic breast cancer was not great. As I sat there crying, I was scared I would not see my kids graduate from high school, much less college.
As many of you know who have followed me on this blog, or who know me in person, after several tests and scans, my doctor told me that it was good news (in the cancer sense) that the metastasis was only in my bones. In other words, since it was not in any organs I was fortunate. There was a chance I would see my kids graduate.
For the record, breast cancer most often spreads, or metastasizes, to the bones, liver, lungs, and brain- you can learn more about metastatic breast cancer here.
Since October 2010, I have been on six different medications:
- Arimidex (10/10 – 12/11)
- Faslodex (1/12-4/12)
- Xeolda (5/12 -11/19)
- Verzenio with a shot of Faslodex (12/19 – 2/23)
- Enhertu (3/23 – 4/23)
- Taxol (began 5/23 and currently still receiving weekly infusions).
- In addition, I also received an infusion of Aredia monthly from 1/11 – 3/13 and then every 6 months for 10 doses. Aredia was used to treat bone damage and reduce excess calcium levels in the blood.
The thing that Arimedex, Xeloda, and Verzenio have in common is they are pils. Other than having to go into the clinic monthly (or sometimes every six weeks) to receive the Faslodex shots when that was part of the regimen, get blood work, and see the doctor, my cancer treatment was a once or twice daily pill(s). There were no outward visible signs that I was receiving treatment for MBC. The side effects of the drugs, while different, were not visible to the general observer.
Each change in medication was a result of progression to my bones, meaning there was more bone that the cancer was attacking. Radiation helps stop the cancer from growing and reduce the pain. Over the years, I have received radiation on my hip, ribs, and spine (more than once, different vertebrae). These drugs have helped keep the metastasis in my bones and I have not had any metastasis to organs, which remains good news.
Why am I recounting all of this?
In all of those years, my cancer has not been what many would consider Visible.
What do I mean by that?
Cancer that has metastasized to the bones is hidden from the outside observer. Unless you know me in person and know my story, the only outward, visible sign of my cancer was that I walked with a limp from my first hip surgery, Then, after my second hip surgery, I used a shoe with a lift and walked with a cane. These outward signs could have (and have been numerous times over the years) been attributed by others to many things besides cancer.
Again, you may ask, why are you recounting all of this?
2023, as Miley Cyrus sings “Came in like a wrecking ball.” Actually, it started in November of 2022, when my scans once again showed there was progression in my spine. Unfortunately, I’m all too familiar with what that means. If you haven’t kept up with the blog (and that’s ok) but want to read more about all that transpired in March/April/May/June you can read more about March, April, May, and May/June
First, radiation. Second, we discuss options for treatment. Since I had been on Verzenio for three years somewhat successfully, my doctor wanted to extend the use after radiation by increasing the dosage. Within the first week, my body was unable to tolerate the higher dosage. This meant another change in medication.
As I mentioned above, for 12 years, my treatment has mostly been in the form of a pill of some kind. Unfortunately, that is no longer an option for me. We have run out of pill options. The options for me now are infusions. Depending on the drug it could be weekly, as it is currently, or every three weeks is another typical time frame. It all depends upon the drug.
Suddenly, to those not aware of the fact that I have been on some kind of treatment for 12 years, my cancer is Visible.
I look more like a cancer patient now as the Taxol has made me lose my hair. The fall I took in late May has caused me to use a walker which (maybe just to me) makes me look more frail.
I didn’t really understand this until my oldest daughter pointed it out. She reminded me that most people do not/have not understood that I have been in treatment for 12 years as there were not any outward Visible signs of cancer. I have a few people in my life who understand this. But, honestly, most do not.
The truth is I am continually explaining to people that Metastatic Breast Cancer is never cured. Just because I didn’t look sick, doesn’t mean I wasn’t still battling the MBC beast that has chosen to attack my body.
October is on the horizon, which has a lot of triggers for me. Both of my diagnoses came on October 8th, 7 years apart.
I ask that if you are still reading this post, first Thank You, and second if you plan to donate to breast cancer research please look at Metavivor.org. 100% of donations go to fund research for metastatic breast cancer, which helps me continue to fight this devastating disease.
If after reading this you have any questions, I am an open book. Please ask. I will do my best to answer any questions you have.
