Friends and Family,
Okay, so the party is over. I tried to convince myself that six years and four months after starting Tagrisso, maybe the first sign of “growth” in one of my tumors was actually not growth at all. I hoped it was a measurement error caused by using a different (new) CT scan machine this time, but the PET scan told me I’m not fooling anyone.
The scan revealed suspected progression in a few places. My lung spots are looking active for cancer activity, but they haven’t grown in two months, so we don’t have to run around like our hair is on fire looking for an emergency fix.
Strings of lymph nodes were also suspicious. The last trouble spot explains why my back has been sore for the past three months: I have a broken rib. Go figure. As a bonus, it looks like there is cancer at the break. We’re not sure if the cancer caused the break, or if the break opened the opportunity for the cancer to invade.
Now that we know what is happening, we don’t know what to do about it. Protocol dictated that we see my local oncologist first, since that’s where I got the scan. He wasn’t sure what to do next, so we will be seeing (via Zoom) Dr. Patel, my UCSD clinical trial oncologist, on Tuesday to discuss a plan. He’s very sharp, so we’re feeling good about meeting with him. Now at least we have a plan to make a plan.
My guess is that I will have some radiation and a biopsy, since the only way to pick the right treatment is to know what you are treating. My mantra for everyone with cancer is that when there is new growth, get re-tested, because the growth means that there is a new mutation.
It always takes a few days after big news to process it before I can write about it. Genevieve and I finished our telemed appointment Friday confused and frustrated with the lack of answers. Now that we’ve had time to think about it, we’re in a better place.
We’re seeing this as an opportunity to create the best path forward. As unsure as he was, this oncologist was ready to set me up with a one-size-fits-all treatment approach, but we are not passive. We’ll make the decision when we have all the facts. If we’re still not sure after talking with Dr. Patel, we’ll get another opinion. It’s one of the important lessons we have learned in the almost fifteen years we have been living with cancer: You have to be your own advocate.
Thank you again for your love and support. Today I’m telling you about the practical side of this experience, but what you do, and particularly Genevieve, gives me the passion to push for answers.
This post originally appeared on Dann’s Cancer Chronicles on April 18, 2021. It is republished with permission.