This week’s MBC life story comes from Mandi Hudson. I had the privilege of meeting Mandi in April of this year at the Hear My Voice advocates training in Philadelphia. She impacted me by her down to earth demeanor yet her vigilant drive to help advocate for all metastatic breast cancer patients to find a cure. I also love that she has an RV named FIFI and secretly want a FIFI too.
Can you share with our readers what your life was like before you were diagnosed with metastatic breast cancer and how you got to the stage IV diagnosis?
My life revolved around my career. Ever since I was a child I wanted to go to college and become a career woman, work in an awesome office and be the boss lady of the century. I wanted to accomplish great things. I have accomplished great things (with the help and support of amazing employees and colleagues over the years). Unfortunately, metastatic breast cancer is acting like a full time job and makes it harder to be as amazing at work. You are constantly balancing appointments, phone calls, surprises and a brain that just doesn’t remember things like it used to (at least when you are in chemo). Work suddenly takes the back burner and more important things like family and quality of life become much more important.
What is your official diagnosis. Tell us about your current treatment .
I am ER+ PR- HER2+, but was originally diagnosed as ER+ PR+ HER2- so when my cancer metastasized a HER2+ cell managed to really get going and spread everywhere causing most of my metastatic growth.
We discovered that I had spots in my lungs in fall of 2013, about 3 years after my initial diagnosis (I was originally stage IIB). I had had a bilateral mastectomy, dose dense AC/T, radiation and had been on Tamoxifen for several years. We did a PET-CT when we saw that the spots were growing and I did not show active cancer anywhere except what looked like my lungs. We watched the spots gradually grow bit by bit via quarterly CT scans, but were unable to biopsy them and officially diagnose that my cancer had returned. About a year after we found them I had started to have back pain and brought it up at my CT scan, when they pulled up the scan we discovered a large spot on my spine. A PET-CT a week later revealed that I had gone from a few tiny spots on my lungs to having 6 large tumors in my spine, a tumor in my clavicle, several lymph nodes throughout my chest and other various areas now actively had metastasis. I had an oophorectomy a month later and they discovered small tumors in both of my ovaries.
A biopsy to my spine showed that I was now HER2+, but my oncologist wanted to try starting me on an AI. We tried Letrazole for several months and my tumor markers continued to climb and the cancer kept spreading. The decision was made to start me on Taxotere/Perjeta/Herceptin, within 3 infusions most of my tumors were gone – leaving me with just the tumors in my lungs.
I also turned out to be the rare, but lucky soul who got BRONJ. Osteonecrosis of the jaw caused by biphosphonates within a few infusions of Zometa. I ended up with a hole in the inside of my jaw that refused to heal. I found a wonderful oral surgeon who was able to remove the dead bone from my jaw and got it to close up just a month ago. It has been a great improvement, but it means I can no longer take biphosphonates as I am at high risk of this happening again, which is tough when you have had a number of bone mets.
How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?
I can’t say I have had a pivotal moment in my life with cancer. My life is what it is, I try to make the most of every day. I am not sure who or what my life would have become today if I had never had cancer. I was diagnosed young (30 with early stage, 34 metastatic) and it has been a big part of my life for the last few years. I also started blogging the day I was diagnosed, so I have had breast cancer publicly be a part of who I am for a long time. I try to be a voice and I want to help make a difference in finding a cure for metastatic breast cancer (and all cancers for that matter).
How do you live your best life now, thriving with a metastatic diagnosis?
I am still navigating how to live my best life with a metastatic diagnosis, you balance the side effects of your treatment with creating as much normalcy as you can. My best life is to keep busy, seeing new things, exploring the world and spending time with my husband.
What makes you most happy, and where do you find the most joy?
I am happiest when I am out exploring. I love to travel and see new things, try new experiences, eat new foods. I love making new friends, but nothing makes me happier than spending time with my husband and family.
People mean well, but often they don’t know what to say, so they say the WRONG thing. What is the worst thing someone has said to you?
I was always disturbed by people calling my breast reconstruction a free boob job. If there was anything worse to compare it to… an actual expenditure to improve your appearance vs. stitch back together what remains after cancer. That one always bothered me the most for some reason.
What did or do you find most helpful for those wanting to encourage or help you?
I have had so many helpful people encourage me along the way in so many ways. From visits, meals, cards, hugs – just saying hello and that you care can go a long way. Just knowing that people care for me and are there for me is the best thing in the world.
Do you feel that those of us living with metastatic disease are overlooked by the pink tide of awareness for early stage cancer in October? How would you change that?
I think that the metastatic message does get drowned out in the midst of awareness campaigns, but I think it is important to try and be part of the message. Metastatic breast cancer awareness is important, without a cure for metastatic breast cancer there is no cure. The math of how many are still dying even with early detection is frightening. 1 in 8 women will get breast cancer. 1 in 3 of those women will get metastatic breast cancer. This is too many.
Do you think our cure is near? Or what one scientific advancement in the treatment of MBC do you find most encouraging.
I think we have a long ways to go before we have a cure. Breast cancer has many different types of cells. I find immunology promising and hope to participate in a study one of these days.
What is one “action” point everyone could do TODAY to promote awareness of MBC.
Share our stories. Be aware that we are here. Share that there isn’t a cure and that we are dying.
If you want to connect with Mandi, here are are few ways to do just that. You can find her here:
If you would like to share your story with our “Voices of MBC” community, please contact me using the form below or email me at Lkailani@gmail.com
I can’t emphasize enough how important it is to let our voices be heard. Your story counts and could just help make a difference in someone’s life today.
Until next week,