WELCOME BACK, to another Met’s Monday story. Today, Sharon Armstrong shares with us. Sharon is a 56 year old married woman with one 32 year old son and 2 dogs. She was born and raised in Chicago and now lives in Southwestern Michigan.
As her story unfolds, you will see just how complicated a metastatic cancer diagnosis is, and how important it is to be your own best advocate to get the care that you deserve and need.
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?
I was diagnosed with a blood cancer – Non-Hodgkin’s Lymphoma in February 2009. I completed chemo on 7/1/2009. I was under the care of a hematologist/oncologist from February 2009 until May 2013. I saw her every 3 months for the first 3 years, then every 6 months. Beginning in 2012, every time I saw her I complained of worsening fatigue and strong back pain. The oncologist did a thorough exam every three months. These exams included looking at lymph nodes in my neck and under my arm and thoroughly examining my stomach and breasts.
In the winter of 2012, I slipped on some ice and twisted. I ended up with 2 broken ribs. I was told it was impossible to break ribs unless I fell or had a seizure, neither occurred. My baseline mammogram and bone density scan was scheduled for September 2013. I broke my leg (fibula) falling down 2 stairs. I postponed the tests until October when I was able to take off my walking cast.
When I had my mammogram, the tech remarked that my left breast seemed “hard”. I told her I thought I’d pulled a muscle in the gym since I had just gotten back there after my broken leg. She proceeded to do the mammogram and I waited for it to be read as I always do. The radiologist came in and said he saw some “shadowing” so he’d like to do a diagnostic mammogram. It didn’t show the shadowing any more clearly, so an ultrasound was done. The ultrasound showed an area of my breast that looked like the outer edges were being pulled to the center. A core biopsy was scheduled. My primary care doctor called with the results. As soon as I heard her voice I pulled to the side of the road thinking I knew what was coming. As it turns out, I had no idea. She recommended I see a breast surgeon to start coordinating my care. The surgeon said she wanted to consult with my oncologist to see if they should start with a mastectomy and sentinel node biopsy or do chemo first. I told her I had no faith in my former oncologist. The surgeon said that the oncologist was a breast specialist. I said I’ve been under her care over 4 years; she’s examined my breasts at least 10 times with my arm over my head. She told me I was just getting old when I complained of increased fatigue and back pain. She never found a thing. It took her office 2 weeks to call and schedule an initial consultation. By that time, my left nipple had inverted and they did yet another biopsy and a breast MRI. I was unable to complete the MRI due to extreme pain in my sternum. I told the nurse that called me that I had decided to get another opinion. I put in requests for all scans and tissue from 2009 to present along with all mammograms to be sent to the breast center I chose. I was there the day after Thanksgiving 2013 and was scheduled for initial appointments that day with an intake oncologist and the following Monday and Tuesday with the rest of the “team”. The intake oncologist asked me about my diagnosis and I told him ILC, grade 2 ER/PR+ HER2- and told him I’d had 2 biopsies. He ordered a PET scan Sunday 12/1/13 and it was on Monday, 12/2 that I found out my initial diagnosis was stage IV metastatic breast cancer with mets to sternum and innumerable mets to my spine. The mass in the left breast measured 8 cm.
Tell us about your current treatment and side effects.
Since my estrogen receptors were extremely strong (98%). I was started on Anastrozole daily with Xgeva shots every three months. The naturopath also had me taking vitamin D3, Calcium, Magnesium Citrate, EPA. So in December of 2013, my main breast mass measured 8 cm. After 3 months on Anastrozole, it shrunk to 1 cm. In July of 2014, the mass was not evident upon examination and the PET showed no active cancer anywhere. The lesions were still on my spine and in my sternum, but did not light up on the PET scan. Anastrozole is becoming less effective, so it’s probably time to change treatment. I’ve called care management to tell them I feel progression in several areas. I saw my oncologist 6/22. I have had some progression in bones as I thought. I discontinued the Anastrozole and started taking letrozole (Femura) on 6/23. My 1st shipment of Ibrance should arrive 6/26, so I’ll start taking letrozole and Ibrance together with food. Ibrance is a CDK 4/6 inhibitor which was given breakthrough status by the FDA . It went to market without stage 3 trials being completed. Major side effects are low white blood cell and platelet counts. Also need to be vigilant for a pulmonary embolism and infections.
How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?
When I had lymphoma, I was in survivor mode. I wanted to get through with that nasty chemo as unscathed as possible. Chemo changed my life, physically and mentally. I spent every waking moment fighting for my life and when the chemo was done I settled into the new normal. Neuropathy in my hands and feet, chemo brain (though I have gotten much of the lost cognitive ability back), neuro muscular pain, to mention a few of the side effects that will never leave me. I think I’m more introspective now. I know I also strive to live in the now. The future will be what it will be. I have hope, but no illusions.
How do you live your best life now, thriving with a metastatic diagnosis?
I really strive not to sweat the small stuff, though sometimes it’s easier said than done. I am a non-hodgkins lymphoma survivor. I will not survive metastatic breast cancer. So I need to work on loving the time I have left and everyone I get to spend it with. I find support, kindness and love all around me. My bucket list has gotten quite a bit smaller. Most things on the list are in the near term (seeing my son marry the love of his life) on November 7 of this year, advocating for metastatic cancer research, offering up prayers, hugs or just a shoulder to the too many women in the closed facebook groups who are in my shoes or worse.
What makes you most happy, and where do you find the most joy? Is this different than BC (before cancer)?
I’m happiest with my family now. We have a son, no other children. He’s one of my favorite people and unlike some mother-in-laws to be, I could not be happier about his choice of a life partner. I know that he’ll be ok after I’m gone with her love and he’ll keep an eye on his Dad for me.
People mean well, but they often don’t know that to say, so they say the WRONG thing. What is the worst thing people have said to you in regards to having cancer?
There are a select few people that know about my diagnosis. Since I’m ER/PR+ HER2- AI’s are the first line of treatment. So unlike when I was on chemo, I still have hair. Of the things people who do know my diagnosis, the worst “wrong” thing was, “you don’t look as bad as you did, you must be getting better, you can beat this”. No, I can’t, not unless someone finds a cure in the very near future.
What do you find is helpful for those wanting to encourage and help us but as yet do not know how? Telling me “you’re in my prayers, and meaning it.
Do you feel 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?
Very definitely we’re overlooked. We’re the pink elephants in the room. We need to get over being “aware”, who isn’t aware of breast cancer? We need to get our stories out and correct misconceptions. No one dies of breast cancer, everyone who succumbs dies of METASTATIC cancer. I am among the 10% diagnosed de novo (stage IV was my first diagnosis). Most people who end up dying are people in which breast cancer has reoccurred – 30% of women diagnosed with early stage cancer will have a recurrence, no matter how many years it’s been, how many mammograms they’ve had, how often they do breast exams.
What do you want people to know about YOU and your life living with this disease?
I am not a warrior, I am no longer a survivor. I’m a Wife and Mom to a son and two furbabies and a relatively intelligent working woman. I’m a thriver, looking at each day as a gift. I do not know my expiration date, but who does?
What is one “action” point that everyone could do TODAY to promote awareness of MBC?
If every man and women who has MBC could come into the light in social media and send a tweet or post a status on facebook let all their friends know what it feels like to live a death sentence few people pay attention to, maybe some would stop drinking the pink Kool-Aid.
What are the three words that describe you?
NOT DONE YET
Do you have a favorite quote, song, poem or work of art that you would like to share with us?
“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.” – Albert Einstein
I plan to dance with my son at his wedding while they play this. Lee Ann Womack – I Hope You Dance
You can connect with Sharon on twitter. Her handle is @sharonasoha
Thank you Sharon for sharing your story with our voices of MBC community.
If you would like to share your metastatic breast cancer story here on the blog. Please fill out the form below and I will send you all of the details.
Until next week,