Educating patients about proton radiation therapy-especially for breast cancer
This website is not a prescription for proton radiation as I am not a doctor. Rather, I am a warrior girl, a breast cancer patient, a wife, a stepmother, a daughter, a friend, a fitness nut, a faithful woman, a business person & a survivor who cares about all of the people with cancer I don’t know in the world. It’s time for me to open up and not be shy about telling my story so I can help you. If you are curious about proton radiation for your cancer treatment or heard that it is experimental, continue reading.
This website is for you.
“You Have a Mass on Your Left Breast”
Every year in my birthday month, I schedule my mammogram and go for my test. I always looked at it as a gift to myself.
In January of 2018, my visit was different than all of the birthday months before. As I received the 3-D mammogram and the ABUS sonogram sonogram, I remember talking to the ABUS technician and telling her about all of the women I know who have had breast cancer. I said, “I save all of the race bibs from the Susan G Komen 5k’s that I ran with my survivor friends proudly displayed on my back. I am their warrior girl. I am so proud of their fight.” Little did I know that the technician would be looking at a cancerous tumor in my breast as we were having this discussion.
Three days later as I finished physical therapy from a workout injury, I received a call from the radiology center: “You need to come back for additional images of the left breast.” I asked the person what that meant and she said she could not tell me but that I should come in this week. Three days later I had the second mammogram. The technician said, “Do you know why you are here?” I said, “No I was told I had to come back for more images.” She said, “You have a mass on your left breast so please move your feet toward the machine, lift your arm up, lean in and hold your breath so I can get more images. You will sit in the waiting room and get called for a sonogram.” After she took this image I said to her, “What are you talking about, what did you just say? I have a mass on my left breast? What does that mean? Also, I already had a sonogram a few days ago.” She said, “You will see the radiologist next and have a sonogram of this area. Keep your gown on and wait in the waiting room.” In my entire journey, this was not only one of the toughest conversations, it was one of the coldest. This technician was emotionless and I was so scared. After spending 25 years with Marriott and The Ritz-Carlton, I thought we were nicer to our guests checking into hotel rooms than this technician was checking in on our health.
When I got to the waiting room, I texted my husband, “Honey I have a mass on my left breast, I have to get more tests, so I am waiting to get those and I have no idea how big or what this means?” I waited with all of the other women getting their mammograms and then I got called back to get more images taken.
As I approached the exam room I prayed that all would be OK and that the technician might be more friendly. This technician told me to take a deep breath and then she gave me a hug. She said many times things are “fine.” She was the kindest and most compassionate person.
My husband joined me for the exam results. The radiologist came into the exam room and told us that I needed to get a biopsy of this area-the next day. Again, I was so scared. My husband asked the radiologist, “What are the chances that this is cancer?” She said, “Most of these tumors are not cancerous.” I stayed positive and convinced myself it would be OK. The next morning, we left to get a biopsy.
Seven days passed. I waited for the call and prayed so much that the tumor wasn’t cancerous. Yet, on Jan 31st, 2018 I received the call that 1 out of 8 women in the United States receive. The nurse told me: “You have cancer, Invasive DCIS, let’s talk about the next steps for surgery, your pathology, your MRI and you need to see an oncologist. Let’s see if we can get you in next week” My first thought, wow, I have never had surgery in my life!
A week later on Super Bowl Sunday February 4th during my MRI, two more cancerous tumors were detected near the main tumor. They were later called the “children” of the main tumor. Meanwhile I am working, working out, and not having any symptoms of cancer.
Fast forward, after my surgery in March, I found out I had another tumor in my lymph node that also broke through the lymph node wall. This tumor wasn’t detected on my MRI in February. Because of this, my doctor called and said I needed radiation treatment. I didn’t know about proton radiation or for that matter photon radiation. No one in a cancer journey knows about these things until you are right there, in the thick of it.
So I had to make a difficult choice: Should I get proton radiation treatment or go with photon which is known as the more “traditional” radiation treatment? This decision shouldn’t have been difficult. More information is needed to educate patients about proton radiation therapy-especially for breast cancer. In 1990 Loma Linda University opened the first treatment center in California and started treating prostate cancer patients. To me proton radiation is not experimental and it’s not the flavor of the day. I am aim to tell my story as United Healthcare insurance claimed proton therapy was “not medically necessary” to treat my cancer. If you want to read the research, news and my journey with health insurance skip to those sections of this website. Or, email me with questions. I created this site for you.
Here to Take This Journey with You
Once I made the decision to have proton radiation versus the traditional photon radiation, I reached out to my village of friends and to the breastcancer.org site. I asked “Has anyone had proton radiation? Can you tell me what it’s like and if insurance will pay for it?”
My friend Helen said her friend Mike had proton treatment for a brain tumor. Mike texted me right away. He felt like a saint sent from Heaven to explain what proton radiation is and is not. Mainly -it’s not new treatment for cancer, at least to us as patients. Mike had his treatment at Loma Linda University in 2006. https://protons.com/. Mike helped me so much. I am grateful for his support.
Please read along on this site to see; what proton radiation is, how it feels, how I made the decision to be treated at The Maryland Proton Treatment Center, tools for you to support yourself during treatment and the latest news and some research I found helpful.