Bad news, you have brain mets. Have a great day!

I don’t know about you, but I’m ready to get off this ride that is lung cancer. Today was a mess. It started out with our oncology appointment. Fin joined us. Thank God we brought him because he truly was a bright spot. He brought a lot of joy to other patients and the staff at the cancer center. Our doctor doted over him for a few minutes after entering the exam room and then abruptly changed the mood when she said, “So I have bad news.” Shit. Shit. Shit. Seriously? What could it be? Our hearts sank. Fin got quiet. I’ll spare you all the details and medical jargon. Bottom line Jeff had one brain met (metastasis) at the end of July that was only 2 mm and he now has 6 mets ranging in size, but none larger than 0.8 cm. So what now? All of the research I’ve been conducting in preparation for this very moment was swirling around in my head. Our oncologist said she already met with the radiologist and they were leaning towards whole brain radiation. HOLD. THE. PHONE. This kind of treatment is usually reserved as a last resort. It comes with a laundry list of side effects. We asked about targeted radiation (aka SSR or Gamma Knife) and that was an option if we wanted to push for it. The good news that did come out of the appointment was that it appears Jeff is still responding to his current treatment everywhere else. Most everything else in his body is either stable or still shrinking. There are two little spots that look a tiny bit larger, but could just be skewed due to the scan image. We’ll go back before Thanksgiving for another round of CT scans to confirm.

By the end of the appointment we had laughed, we had cried, we had cried again. We were exhausted. But wait, there’s more! We took the elevator down to the ground floor to meet with the radiologist and this semester’s resident. The resident was so sweet and taken with Finley. The radiologist who I’m sure is talented and is also very nice had a very dry personality (think day-old toast with no butter). He started by saying how sorry he was to meet with us under these circumstances and then went on to describe the risks of SSR, the benefits and so on. Fin fell asleep in my arms as Jeff signed his consent form for treatment which will be scheduled for next week.

And finally, we drove over to another medical building to meet with the neurosurgeon who works with the radiologist. His bedside manner was more our speed. He described the procedure as “spot welding” (a term we’ve heard before) and said that he’s treated many patients with lung and breast cancer very successfully. He said if more mets crop up, we just zap ’em again. Just when I thought we’d end the day on a high note (I’m using this term in the loosest possible sense), the surgeon said that he’d like to send his nurse in to speak with us. Apparently the nurse’s sister had lung cancer and worked with Dana-Farber just like we have been. Side note, the sister just died last fall. Um? So the doctor leaves, the nurse comes in. She sits down next to us. She struck me immediately as a very caring and sweet woman. And she was. But boy, we were not on the same page. When she started to speak about her sister she immediately started to cry. My heart went out to her. When she composed herself she told us how her sister was ALK positive (like Jeff) and how she was always so sure that she’d beat her lung cancer (ding ding ding) and she continued to work all through her treatment (check) and that her disease progressed rapidly at the end and she died quickly (fuck).

I told a few people at work about our experience today. Almost all of them asked me how we were at work…WHY we were at work and how we were even functioning with everything we have going on. I’m not sure I can answer that other than to say that the show must go on. Jeff and I realize that getting today’s news while extremely difficult and tough to process is the reality of our situation. Those brain mets were there on Monday and we didn’t know about them. Today we know. And now we can do something about it.

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6 thoughts on “Bad news, you have brain mets. Have a great day!

  1. lillytnin

    Well crap. I’m so sorry to hear about this. It sounds like Gamma knife is possible though, so just zap those suckers and carry on. You may already know this, if your onc starts pushing for WBR, remind him/her about the trials for ALK inhibitors that cross the BBB, or for that matter there is Zykadia that is now available by Rx. You still have many options!

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  2. lillytnin

    Well crap. I’m so sorry to hear about this. It sounds like gamma knife is an option so just zap them and carry on. You probably already know this, but if your onc starts pushing for WBR, remind him/her about the many trials for ALK inhibitors that cross the BBB, as well as Zykadia that is available by Rx. Best of luck, my friend!

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  3. Pingback: Scan is a four letter word! | Living With Three Girls & Stage Four Lung Cancer

  4. robin

    Continuing to Pray for all of you. So much to process and decisions, decisions. Thank God for the joys you recognize and share with us, Finley; for the honesty you bring and for allowing us to be a part (very small) part of your journey tackling this terrible disease. I have learned so much……….from both of you!

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  5. linnea11

    Well damn. You have written beautifully about the shittiest of days. Some major insensitivity there on the part of at least two health care professionals (and I love your unbuttered toast description). A couple of things—there are options, and I’m glad you are exploring them. Brain mets are unfortunately a common mechanism of resistance, as most ALK inhibitors cross the blood brain barrier at very low concentrations. The ALK inhibitor which I am now taking (still in phase I of clinical trial)—PF-06463922—crosses that barrier; excellent news for patients with brain mets and perhaps among future options. Also, although I’ve never had WBR, I know many who have and I can say that if I needed to, I would—without hesitation. But I think you are wise to explore less invasive options first.

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