Sometimes you sit and stare at a screen and wonder where to start.
That is me. I am there.
Yesterday was my appointment with the oncologist. It felt like the appointment was so far away while waiting for it. On Sunday I told myself only a few more days. I can do a few more days. Last Thursday I couldn’t stand it anymore and called the nurse navigator to tell me the Oncotype dx score.
Wait… let’s back up.
After surgery there was no clear cut answer as to if I should undergo chemo. My oncologist sent my tumor out for genomic testing to a specialized lab. This test sends back what is called the Oncotype score. It is a a special score that helps determine rate of recurrence in cancer. According to the company, a score under 18 does not warrant chemo. A score over 32 does.
I called the nurse navigator and she really didn’t want to tell me the score because I needed to hear the whole story from the doctor. I convinced her. My score was a 27. Your question is probably what happens if your score is between 18 and 32. That’s called the gray area. We were prepared to go into yesterday’s appointment with the doctor leaving it up to us. I was scared. I told Derek that I would rather have someone tell me what to do than leaving it up to us. I was afraid of making the wrong choice.
Lucky for me my oncologist happens to be one of the leaders in breast oncology in the US. She is part of the team that helps to determine standard of care for breast cancer. In short, she is amazing.
During our visit she explained the numbers and said that the company’s cut points and the medical community cut points are different. She explained why they are different. She was part of the team that set the cut points for the standard of care. The medical cut points are 11 and 25. That put me in the category for chemo.
With an Oncotype score of 27 I have an 18% of recurrence if I do not have chemo. She said she didn’t like that number. I don’t like that number. Derek didn’t like that number. It made the choice easy.
The doctor took her time to explain side effects. She explained the protocol. She explained the reasoning. She spent time with us and we never felt rushed or pressured into anything.
This was the first time a doctor has said, “let’s get things going.” It felt like there was a sense of urgency for the first time. If you’ll recall, I received my diagnosis back on February 15. I didn’t have surgery until April 12. I didn’t meet with the oncologist until May 17. Now she’s saying, LET’S GO!!! Finally. Time to start kicking some serious cancer ass.
I will start chemo on May 26. A week from Friday. They’re trying to find me an appointment to get my port placed. The plan is for Tuesday. Then I’ll have my first infusion Friday. I will have the AC + T regimen. That is Adriamycin and Cytoxan together. I’ll do 4 rounds of that. Every 2 weeks. Then I’ll do 4 rounds of Taxol every 2 weeks. The whole thing will take 16 weeks… my whole summer. I will get 3-6 weeks off and then start radiation. That will be daily (M-F) for 6-7 weeks. After that I have to wait 6 months for reconstruction. I’m planning on that to happen after school gets out next year.
How am I doing with all of this? I am scared to be frankly honest. I can handle it during the summer. However, I’ll have 3 rounds of chemo while still in school and my last round will be the 2nd day of school next school year. I’m more concerned about taking more time off of work. I know the purpose and I have the support of my district. It doesn’t make it suck any less.
I will get through this. It is only a bump in the road. Hair… it goes.