Guest blog by Pamela Collins
My name is Pamela Collins. I live outside Springfield, Missouri, in a rural area close to a major city. In 2013, I was diagnosed with Inflammatory Breast Cancer. I am sharing my story of hope.
I was 53 years old at diagnosis, in good overall health. That summer, in June, I noticed some strange breast changes. The first odd symptom was, it was so itchy! I was awakened in the night by extreme itching on my left breast…I am outside a lot, I assumed I had grass or an insect bite down my shirt, so although odd, not concerning. Then, rapid changes began, sometimes changing by the hours, and certainly by days. My breast was swelling, red, hot, and painful, no lump. I showed my husband, who is a medical person, a Certified Registered Nurse Anesthetist, CRNA. He wasn’t really alarmed, but acknowledged yes, I should go see my Primary Doctor for evaluation.
My doctor and medical system uses an online account for messages, it’s a MyMercy account as we are in the Mercy system. I messaged my doctor, describing the symptoms. He was very responsive, and said let’s try antibiotics, see if that knocks it out. He said if not, you will need an ultrasound. I did a round of antibiotics, and strangely, I did see improvement. So another 2 weeks pass, and my earlier symptoms returned, and my nipple inverted, again, rapid changes, literally overnight.
I had been on Google…it was looking to me like these symptoms were associated with an aggressive breast cancer, Inflammatory Breast Cancer. I told this to the Spouse. We have laughed about this since, but his response was, “What makes you think you have an aggressive breast cancer?” Well, I said, I have all the symptoms…
After messaging my doctor again, he said he was sending me to our breast center for an ultrasound. The scheduler at the breast center wanted to do a mammogram. I had a clean mammogram 6 months prior. My doctor was my advocate, he had never seen a case of IBC in his practice, but he was staunch in his order for an ultrasound. I am so thankful he was listening to me, and aware that ultrasound is the preference for these breast symptoms. Ultimately, they scheduled both, mammogram and ultrasound.
During the ultrasound, I knew I was in trouble. I am not medical, but it was obvious there was cancer. I said to the technician, “I have had a recent clean mammogram…” she said, “Things change…”
Yes, it’s Inflammatory Breast Cancer. Triple Negative IBC. Fast track to meet an Oncologist. It’s stage 4, based on distance metastasis to my lymph system, even down my left leg.
In talking to my Oncologist, I was scared. I had Google. I had read about this beast. My doctor was very responsive to my fears, my questions. He was calm. He told me he wanted to start me on Chemotherapy, then surgery, then radiation. He said he would follow a protocol for IBC set by MD Anderson in Houston, a major breast center. I had read about this hospital. I wanted to get the best treatment I could get. Should I consider going there? His response was, “you can if you want, it’s your choice. But I will be in contact with them and doing what they would do here.” Oh wow, I’m going to be able to stay in my home! Get the best treatment here! I was so relieved. As we wrapped up my first very scary visit, I asked my Oncologist, “Do you have other IBC patients?” He nodded, yes. He said, “I have one right now, she is doing well, and I expect you to do well too.”
What!? He expects me to do well?! He doesn’t expect me to die? What? Hope here?!. That was a game changer. My husband and I left that appointment ready to fight, full of hope. I carried that hope every day.
The trimodal treatment is fast and hard. We hit it hard, dose dense chemo, following MD Anderson protocol. The following appointment after the first chemo, my wonderful doctor was examining my breast, started smiling, and said, “Pardon me for saying this, but this feels great!” I knew exactly what he meant, not inappropriate, rather, the cancer was responding!
My story of hope is this. You can fight from a place of peace, a place of fire and hope, and not give in to fear. Early on, I asked a dear friend in the health field, how do I fight this? So many people use the negative terminology with cancer, “I hate cancer”. Trust me, I understand! But that didn’t feel right. It’s my body, how do I hate my own body? How do I fight something, fight it hard, that is a part of me, trying to kill me? She said 2 words that resonated so very strongly. She said, “Love Heals.” Love heals, yes it does. I could still fight to heal, fight to live, and still stay positive. I would lay in my bed at night and feel the shower prayers. People were praying for me. That gave me strength. And, I would visualize my cancer shriveled and shrinking, leaving my body. Love heals, not hate. I had my weapons.
I joined an online group on Breastcancer.org, a group of ladies who were all diagnosed and started treatment the same month. I am still friends with these warriors today, we have shared our lives together, and lost some on the way. Only one other in that group is IBC like me. She is one of my dearest friends, even though we have not met in person. I share this too as a part of my healing.
After treatment, I rang the bell. Now I am NED, no evidence of disease, which is our goal. That was 10 years ago. I so want my story to be a story of hope. Good health can be had again.