I like reading other metastatic breast cancer patients’ blogs. It’s always, unsettling, however, if posts abruptly stop. I always wonder what happened–is the person still around? What is going on with them?
I am very much still around and nothing too extreme is going on. For those who don’t know me, here is a brief update.
HOW LONG HAVE YOU BEEN LIVING WITH MBC? Eight years. I was diagnosed at age 43 in July 2009. I will be 51 at the end of 2016.
DID YOU HAVE A FAMILY HISTORY? Yes. My mom died from inflammatory metastatic breast cancer at age 53. Anyone with a family history should talk to their doctor to determine an appropriate screening schedule.
DID YOU HAVE EARLY STAGE BREAST CANCER THAT CAME BACK? No. I was metastatic from first diagnosis, aka a de novo presentation. This puts me in the minority–about 90 to 95% of those with Stage IV breast cancer were previously treated for early stage breast cancer. Given my mom’s history, our Ashkenazi Jewish background and other factors (not having children, etc.), I had a medium to high risk for developing breast cancer. I did not expect to be dealing with it in my 40s. We often think of breast cancer as an old lady’s disease–but younger people (and men) can get it.
DID YOU HAVE SYMPTOMS? No. Or at least not any that I recognized as such. I had no pain. I had a hard spot on my breast–I think I did notice this but dismissed it as it wasn’t overly obvious and did not bother me. (I didn’t perceive it as lump.) Although my cancer had spread to my spine when found, I did not have back pain. (Some cancer patients have pain and some don’t. Anyone with pain, shortness of breath, persistent cough, unexplained weight loss, or just a general feeling something is wrong–see your doctor!)
IS YOUR CANCER HEREDITARY? No. Despite my family history, genetic testing showed I am NOT a carrier of the BRCA1 or BRCA2 mutations. Being diagnosed with cancer prior to age 40 can signify a hereditary connection, but as of 2016, the answer for me is “No.”
WHAT SUBTYPE IS YOUR CANCER? I have the most common subtype: ER/PR positive and HER2 negative. This is sometimes referred to as “estrogen-receptor positive disease” meaning that the cancer uses estrogen to grow.
WHAT DRUGS HAVE YOU BEEN GIVEN? Tamoxifen (2009 to 2011); Femara (2012 to 2014); Faslodex (Jan 2015 to April 2015); Afinitor/Exemestane (May 2015 to August 2015). November 2015 to present: Xeldoa. The last two drugs are oral chemo drugs. IV chemo is likely next, but hopefully not soon. Also: Ovarian suppression shots from 2009 to May 2012; Zometa and Xgeva (for bone strength) at regular intervals to the present day.
HOW ABOUT SIDE EFFECTS? I have had little in the way of side effects. Fatigue would be the biggest one. I am fortunate–everyone’s experience is different.
DID YOU HAVE SURGERY? Yes. I had a left unilateral mastectomy in May 2010 with no reconstruction. Because I had a close margin, I had radiation from June 2010 to August 9, 2010. Surgery is not standard of care for someone with metastatic disease. Because the cancer had already spread beyond my breast, removing it was a not a curative measure. The question of someone with MBC having a mastectomy remains controversial–my doctors stressed the choice was mine. Because my disease was stable and I was in overall good health, I was a candidate for surgery. Someone who is very frail or whose disease isn’t under control would likely not be offered surgery. Reconstruction wasn’t recommended. Also in the surgical category: I had an oopherectomy in 2012. These procedures went fine–I didn’t have any complications.
ANY LONGEVITY SECRETS? No. I am just “lucky.” I started out with a low-volume of bone-only disease. My disease has had a fairly slow tempo to date. I can’t take credit for those things–I was just fortunate my cancer responded to the drugs. I now have extensive bone mets (again, I am glad to say they haven’t caused me pain). At the end of 2015, I learned I have liver mets–I have been fortunate to remain symptom-free. I did not have superior doctors, more powerful drugs or a better attitude than any other patient. I just was fortunate at the cellular level.
ANYTHING TO ADD? We are all statistics of one. My experience is just that–my experience.