Some people have been asking for a status update on my dad. He has been moved from receiving hospice care at my mom’s house and is now receiving hospice at a skilled nursing facility through the VA. (And he loves it in there, by the way.)
If you want to learn about his brain cancer diagnosis from the beginning, read this.
A few weeks ago my dad went in for an appointment with a neurosurgeon. Due to the size of his tumor (see picture in this post) we weren’t expecting the surgeon to suggest resection–the appointment was more of a check-in to see how things are going.
My dad is with my sister in Colorado, and I participated in the appointment via speaker phone from California.
The appointment started off with the physician’s assistant taking his blood pressure, etc.
Then the neurosurgeon came in to the room and ran through the typical battery of neurological evaluations of which I am so familiar. It was weird listening to another patient’s appointment knowing exactly what was happening without having to see any of it.
I couldn’t see the doctor, but from the sound of his voice, he was the most compassionate and kind neurosurgeon I have ever heard in my life. He wasn’t a robot. It was clear this doctor had had some form of conversation training, or experience in palliative care.
We went over his scans. Due to the size of his tumor (and the fact that he is developing satellite tumors), AND the fact that he is 72 years old and in very frail condition, my dad is not a good candidate for brain surgery. He has also refused treatment.
Because I am a curious person (and have learned that my dad is also a curious person), I asked the doctor if it was a good idea to get a biopsy of the tumor. The surgeon said that they could do a biopsy, but other than satisfying our curiosity, what good would it do? It might do more damage to him than good. And while we are curious, we should weigh our options on what matters most… Which to me (and hopefully to my dad) means quality of life.
My sister later told me that the doctor looked at my dad throughout the entire appointment, even when the doctor was talking to me or her. (My dad has expressive aphasia and cannot speak, even though he understands everything being said to him.)
In addition to always looking at my dad, he held his hand and called him “boss,” because he is ultimately the boss of his own care.
My dad is not having a surgery or biopsy, and I don’t think it is a good idea for him to have one, but I still wonder what is in his head.
Over the years I have developed “Internet friendships” with a couple of healthcare professionals in the neuro-oncology world. I know they can’t give medical advice over the web, but I did send them a photo of my dad’s scan and each of them was 95% positive they were looking a large glioblastoma (but added in the caveat that they could not know for sure unless there was a biopsy).
After receiving three separate “second opinions” from my neuro-oncology Internet friends (and in-person opinions from two different neurosurgeons), I am satisfied that yes, my dad has a glioblastoma, and we are doing the right thing by focusing on quality of life, management of his symptoms, and not pushing curative treatment.