Chemo, Briefing Notes, and Divine Intervention

I have no reason to believe we didn’t get it all.

You are relatively young and otherwise healthy.

These are some of the words that I vividly recall hearing the medical oncologist say to me after reviewing my pathology report from the surgery. Other things I remember hearing him say were…

I recommend we start chemotherapy immediately.

There are different strengths of chemotherapy, and I recommend the

strongest dose because we want to ensure we cure this.

Wait! What?

The reasons provided were to ensure that if there were any microscopic cancer cells moving about in my system, the chemotherapy would stop it in its tracks. In addition, it would decrease the likelihood of recurrence.

I thought that was a pretty extreme insurance measure. I wasn’t prepared for this recommendation. As I listened to him, I could feel fear bubbling up inside of me. My throat formed a lump. My cheeks flushed pink. My eyes got teary. I was starting to find it hard to think clearly and form intelligent questions to ask. I remember asking if there was a test we could do to check to see if there was cancer elsewhere before launching into chemotherapy. I asked what the risk of recurrence was if we skipped chemotherapy. To which he gave me an analogy of 100 people in a gym and a gunman entering the gym with 10 bullets. He asked if I would want to be in that gym and risk getting one of the 10 bullets. This response wasn’t helpful to me.

Prior to going to this appointment, I reviewed my pathology report and looked up the meanings of things, and from what I could see we DID get it all. The tumors were out. The tumors were less than 2 cm each and the surgical margins were clear of cancer. Four lymph nodes were removed; only one had cancer. There were no signs that the cancer had mobilized beyond the one lymph node. I could not understand how it could possibly be suggested that I receive such an invasive and toxic treatment if we got it all. He left me with the impression that this is the standard treatment protocol and that this has resulted in curing this disease in women. He left before I could think of any other questions.

By the time his nurse came in, I had some time to gather my composure a bit. I knew I needed more information. I felt offended that the doctor would lead with his recommendation without providing the rest of the story. All I kept thinking was…

I need a darn briefing note!!!!

For those that don’t know, a briefing note is a document we use at work that we prepare for senior management when we are seeking a decision. I asked the nurse if I could get a second opinion, or at least talk to someone else who could talk through this more fully with me. Just like a briefing note, I wanted to be presented with each of the options and have the important considerations and risks explained in an objective manner so that I could make an informed decision (and not a fear based decision). She recommended I speak with the nurse educator, the same person who I spoke with about the reconstruction options prior to surgery. I thought, okay, we’ll start there.

I had to wait until after the weekend to speak with the nurse educator. In the meantime, I struggled with so many thoughts and feelings.

This feels like an extreme course of action. I have seen what chemotherapy does to people -short and long term. This is not an easy decision. I'll do it if I have to, but they are proposing this treatment without knowing if there is anything left to treat. But Shannon, don’t bite the hand that heals you.

I didn’t have the faintest idea of what to do, or where to turn to process all these thoughts prior to speaking with the nurse. But somehow, the very next day, through serendipity or perhaps, divine intervention, I found an answer from a dear friend. Phil, is a friend of our family. Phil and Dan train together in karate and went to the same elementary school. They call eachother brothers from another mother because they share a lot in common including their "hair" style, sense of humour and good looks. Phil is also my massage therapist and has been completely supportive of me in my journey and actively engaged in helping me heal. He was visiting me that day to talk about how we would treat my scar tissue and what resources were available to me.

Dan (left) and Phil (right)

I took the opportunity to share the story with him and he generously gave me space and time to share what was on my mind. He listened with interest and openness, and as is his way, he asked honest and candid questions that I didn’t readily know the answers to until I began to respond, and I heard the truth come forth from inside of me. During that unfolding, Phil shared that he had heard an experienced cancer doctor speak in an interview about how much and how little has been accomplished in cancer research and treatment. He said that there might be some information in that interview that might help me.

After he left, I went to work, hunting for the interview and found one to listen to. I don’t think I ever found the one that Phil had heard. But in finding that interview, I came across a link to an article about a research study that provided the “more” I was needing. The article, aptly titled, "Study: More Breast Cancer Patients Can Safely Skip Chemotherapy" talked about a huge federally funded study done in the USA that used a gene expression test, called the Oncotype DX, to help predict if early stage breast cancers are likely to come back after initial treatment and more specifically, when chemotherapy can be avoided. This test provides a recurrence score.

The findings suggested chemotherapy may be avoided in about 70% of women with HR-positive, HER2-negative, node-negative breast cancer. This was me! Except I had one lymph node that had cancer. But it was just one node! They say this applies to women who are:

• older than age 50 and with a recurrence score of 11–25

• any age with a recurrence score of 0–10

• age 50 years or younger with a recurrence score of 11–15

Chemotherapy may be considered for the remaining 30% of women with HR-positive, HER2-negative, node-negative breast cancer who are:

• any age with a recurrence score of 26–100

• age 50 years or younger with a recurrence score of 16–25

I am 49 years old. I thought, I want that test. I want to know what my recurrence score is before I start chemotherapy. Maybe I am between 0 -10 and won’t need chemotherapy. But, it wasn’t offered to me as an option. I acknowledge that I didn’t match the study exactly because I had one node that was positive for cancer but do they have any discretion in that? I would ask if they would allow me to have the test done.

When I talked to the nurse educator, she listened to everything I had to say and I trusted she understood my interests. She agreed to speak with the medical oncologist about my request. As a result, my oncologist agreed to the test and sent it off. Three weeks later, my results were given to me via a telephone call from my oncologist. My score came back as a six and as a result my oncologist recommended that I didn’t need chemotherapy. I was elated! I thanked Spirit. Then I immediately texted Phil and thanked him too. I truly believe that this Creative Force conspired through Phil, and my nurse advocate to help me in this way. I am tremendously grateful I had the openness to receive these blessings.

With so much love,

Shannon Rae