Mindy
“What we living with and dying of MBC need is more time, better and less disruptive treatment. We need a cure.”
My name is Mindy and I have Metastatic Breast Cancer.
At 36 years old I finally felt as though my life was going in the direction I wanted it to. My youngest was starting their 1st year of school. I myself was starting college to become a medical lab assistant, a career I had wanted for a very long time. My personal relationship with my long term boyfriend had matured and after 8 years together, we had decided it was time to get married. Life was great!
2 days after my 36th birthday is when the first pang of pain happened. I was packing a bag for a weekend getaway and suddenly had a shooting pain in the side of my left breast. I thought I must have pinched a nerve and tried my best to ignore the constant ache. We went away for the weekend but I couldn't shake the feeling something was off. I gave myself a breast exam and felt nothing. A week later the pain intensifies and again I give myself an exam and this time I felt it. A tiny pea-size lump deep in the tissues. I told myself it is just a cyst but I knew in that moment my life was about to change forever. A week later it was bigger and so I made the call to my GP. When I saw her just a week later this lump was the size of a large marble. The next week I have a mammogram followed by an ultrasound. As I stood there putting my hospital gown back on I seen the mammogram, I saw what reminded me of a dandelion that had gone to seed and had been partially blown in the wind. I had seen my cancer. As they performed the ultrasound I laid there staring at my tumor on the screen. 3 days later I was back for an ultrasound-guided biopsy.
Oct 6, 2017, my assumption was confirmed. Breast cancer. Invasive ductal carcinoma intermediate grade Her2 +. I wasn't surprised or shocked. I was sad, angry and scared. The following week was scans, blood work and an echo. Staging initially showed as stage 2B. I started chemo November 2017 and in Feb. 2018 in between chemo cycles 4 and 5 I was sent for a ct scan for back pain and increased calcium levels. The CT scan showed 3 mets on my vertebrae.
I remember sitting in the consult room with my soon to be husband. It was the day after valentines and we were cracking jokes and laughing. The oncologist walked in and something shifted. He told me the CT results and all I could say was "This is a death sentence".
It has now been 31 months since that day. The impact that MBC has had on my life has been significant. I ended up quitting college. I am no longer able to drive due to the pain medication I take as well as the cognitive impact chemo has had on my brain. I don't work because I am just too tired and too nauseous. I tell people that MBC is the full-time job that nobody ever wants. I have lost friendships due to how upsetting my disease is. My kid's schedules are constantly being disrupted because of my appointments. My husband doesn't work as he has taken on 90% of the child-rearing and caring for me and making sure I get to where I need to be. I am constantly having to cancel plans and events due to the constant fatigue and nausea. The treatments that are keeping my cancer at bay have big effects on my energy levels and my physical well being.
I am blessed though. I have been on my 1st line of treatment for 31 months with no new progression. Very few can say this. But I also know that this progression-free period is going to come to an end and so eventually I will need to be treated with harsher and less effective treatments.
There is no cure for MBC. All we can do is scan, treat and repeat. All lines of treatment eventually stop working whether it is due to cancer building resistance or the side effects become too much for the patient. We MBCers are in treatment for whatever time remains of our lives.
I know there are some in the community who refer to MBC as a chronic condition. I refuse to see it that way. For me and for many others it is a terminal, life shortening diagnosis. Approximately 22% of MBC patients live to the 5 year mark. This is not enough and it is definitely not enough time.
What we living with and dying of MBC need is more time, better and less disruptive treatment. We need a cure. The only way to achieve this is with more MBC focused research. The problem is that there just is not enough funding for the research. Increase the funding, increase the research. Then maybe someday we can with 100% certainty call MBC a chronic condition.
MBC awareness and education is also an issue. The number of early-stage breast cancer patients and survivors I encounter that have no idea what MBC is or that there is no cure is astonishing. Increase awareness and education and you increase the funding. After all, if you can cure MBC you can stop those early-stage breast cancers from progressing to MBC as well!
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