I’m good at reading people. It’s a skill I picked up as a kid, when detecting subtle shifts in mood or thought meant knowing when to joke, when to duck, or when to just hide. While talking to my wife last week, she got a call from the radiation oncologist and conferenced him in so that we could all chat. He got to about the “ell” sound in hello when I noticed that he was nervous. I don’t like the sound of nervous doctors.
On Sunday, Feb 5 and 3:30pm, just as Super Bowl LI was beginning on the TV in the waning room, my wife’s name was called. We were there to get an MRI of her brain and her neck. They were ordered in the name of due diligence just to verify that all of the tumor was removed during surgery and hadn’t spread to anywhere else in her head. The doctors didn’t expect to find anything. The doctor on the phone however was about to tell us that the MRI did in fact show bits of tumor. They found the tumor had traveled up a her nerves and was now growing near her brain stem and optical nerve.
This form of cancer is radio-resistant. It responds to radiation, but it doesn’t go down easy. It’s now located in a place that is in operable and that can’t be subjected to much radiation. Even with the suggested amounts of radiation, possible side effects include blindness, swelling in the brain stem and possible necropathy of brain cells, which would require a neurosurgeon to go in an remove dying cells in the brain. The radiation oncologist suggested that we consult with a hematology oncologist about also adding chemotherapy to the suggested radiations treatments.
During this process, one of things we have been happy about is not having to do chemo. The side effects are massive and she’s already been through so much. I asked to doctor about the likely hood of chemo improving the battle of this particular cancer, because in all that I’ve read about it so far I’ve never heard of chemo being used to fight this kind of cancer. He gave me more than I asked for, or wanted. He gave me his best guess of survival with radiation alone. I heard the number, and it felt like someone put a sawed-off shotgun to my chest and pulled the trigger. I stopped breathing and my ears were ringing. He continued that he couldn’t give a number for survival with adding chemo because there’s not enough data and that it’s possible that it could have no impact but that we should talk to a hematology oncologist to get better info.
Not the upgrade we’re looking for
The morning that were were to meet with the hematology oncologist, the radiation oncologist called to let us know that the tumor is more aggressive than previously thought. Because it showed up in the MRI unexpectedly, the initial pathology was reviewed and determined to be incorrect. It’s being upgraded from intermediate to high. So for those keeping track, she has high grade, stage IV , salivary gland cancer. A cancer so rare that it only shows up in 2 out of every 100,000 cancer patients. Not out of every 100,000 people mind you. Out of every 100,000 people diagnosed with cancer. Those are like lottery odds. What I choose to take away from this is that her odds of beating it are astronomically larger than her odds of getting it in the first place.
When we met the hematology oncologist I was very encouraged by her energy. It was calm, confident, and comforting. She talked us and asked us to about what was going. We told the story, she looked at the charts and said that chemo for this type of cancer is controversial, and that in this case it can do more harm than good. She said that she’d be willing to prescribe chemo if we wish, but that she really didn’t think it would be the way to go at this point. She said that she would follow up with the radiation oncologist and meet with us in a month just to make sure nothing changed, but as she saw it, chemo wouldn’t be a part of the plan at this point. My wife and I went to lunch and walked around the mall feeling grateful for at least a little good news. As we were leaving on of the stores I got a call from the chemo doctor. She actually got much further than “hello” before I recognized her worry. She’s good a hiding her panic. Her speech quickens a little when she’s worried, but that’s about it. Pretty controlled honestly. She told me that after speaking to the radiation oncologist that she changed her mind and that she recommends chemo once a week. So much for that good news.
The battle ahead
So that’s where we are now. This morning 20 doctors are going to be meeting to review her case. In the meantime we wait and prepare for the battle ahead.