On January 31st, 2018, I received the dreaded call that one out of eight women receive in this country; “You have breast cancer so let me review the pathology with you. It’s good news as it’s ER, PR positive and HER2 negative-that’s the good kind if there is such a thing.” I thought I was in a dream, me? I have breast cancer? Wait –what? What is ER, PR, Her2? I have cancer? And for the next few weeks until my surgery on March 6th, 2018, I learned a LOT about breast cancer, oncology, chemotherapy, radiation, oncotype scores and more.
MRI: On February 4th, 2018 my husband and I went to get an MRI of both breasts as well as my lymph nodes. After the diagnosis, this is the next step in the process. Three days later I learned that I had two additional tumors children/satellite tumors to the main one in my left breast. I later named the main tumor JuJu and asked her to stop making trouble! And good news, my other breast looked fine and so did my lymph nodes-hooray! But, a few weeks later things changed.
Surgery: On March 6, 2018 I had a left sided mastectomy and reconstruction surgery and my breast surgeon sent my tissues to pathology for their review and oncotype scoring. I went into the OR around 10:00am and I was home by 6:00pm.
Call for Radiation: On March 8th 2018, my amazing breast surgeon called me and said they found cancer in my lymph node and said: “You will need radiation treatment and we will find out if you need chemotherapy when we receive your oncotype scores in early April.” Because the cancer was not detected in the MRI, I was so surprised and stunned that the cancer traveled. I didn’t remember her telling me I needed radiation until weeks later. And so after surgery, with the support of my family and friends, I waited and prayed and made all of my follow up appointments including my appointment with the radiation oncologist.
How I found Proton Radiation: Every year my husband golfs with a group of his buddies. In 2018, he emailed them to say: “I won’t be there, my wife has breast cancer.” One of his golf friends who works at the Maryland Proton Treatment Center emailed back that he was sorry to hear about my diagnosis and then he asked us: “Have you heard about proton radiation treatment?” We said “no” but at our next appointment, we planned to ask the radiation oncologist about this type of treatment.
Consult with (Photon & Proton) Radiation Oncology: The radiation oncologist told me he thought that I would be a viable candidate for photon radiation. During photon radiation therapy, you hold your breath; this is called respiratory gating. I scheduled my staging appointment at the hospital for photon radiation. But something was tugging at me and certainly for my husband. So we called our friend who works at the Maryland Proton Treatment Center and spoke to one of our friends who is a breast surgeon. We also spoke with my oncologist and I reached out to a friend who introduced me to her friend Mike, here on this site. From there, we decided to have a consult at the Maryland Proton Radiation Center. At the INOVA hospital Alexandria campus I met with Doctor Michael Eblan and after 2/1/2 hour appointment I made the decision to have proton radiation at the Maryland Proton Treatment Center versus the traditional photon treatment. One of the many reasons I selected proton was this image of not having to hold my breath to protect my heart, plus the proton beam is targeted; it stops at the treatment site and spares healthy tissues.
And… this is why I am starting this site. I want to educate the world about proton radiation therapy for cancer treatment. As I researched the treatments and asked others about it; I wrote on the breastcancer.org site; “has anyone been treated with proton radiation for breast cancer? Can you reach out to me? Did insurance pay? Can you help me please?” but I kept coming up with a lack of resources and information. Doctor Eblan was phenomenal and he answered all of my questions and then some. The biggest being: “Will insurance pay for this treatment and if not, will I have to pay $40k out of pocket.” Yikes!