Surgery IS an option afterall

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My wonderful brother has been kicking ass contacting hospitals and experts on brain tumors to find out as much as he can about what our mom has hogging space in her brain.  He has a friend who actually founded The Brain Tumor Society, and it seems that people with personal history with brain cancer are around every corner.  Kind of like when you’re pregnant and suddenly you see pregnant women everywhere… it’s weird.

So in his searches, Brian has contacted some physicians and hospitals and looked into what it would take to get a second opinion consult to look at mom’s scans and see if we’re on the right treatment path.  Wednesday he spoke to the University of Arkansas for Medical Sciences department of neurology and found out they wanted to see her right away – like, Thursday. At noon.

Of course, this was to be the first “normal” week of her caregiving plan, and me being at work four full days and getting actual work done… so I was a basket case the rest of the day Wednesday.  To make life more interesting, my hubby was out of town last night so I could not depend on anyone to help get everything packed, nor did I have anyone to pick up the boy from daycare Thursday afternoon. So, he had to go with us.

The trip was stressful, mom was tired and pained from sitting up all day, but the visit with Dr. Rowe went well. He didn’t say anything that surprised me. He said that he recommends surgery to resect as much of the tumor as possible. This is what I have read everywhere. Standard treatment for glioblastomas is surgery, followed by radiation and chemotherapy. The only reason to NOT attempt surgery is if it is pretty certain to cause major damage to the patient’s quality of life. Dr. Rowe actually said that because mom has already lost a lot of her mobility on the left side due to the tumor, she has “nothing to lose”.

Brian has heard from many people that they are shocked that surgery wasn’t even offered as an option for mom. Her surgeon here in NWA basically said it just wasn’t a good idea and dismissed it. His reasoning was that it was deep (6cm) and that “these kinds of tumors” are typically very infiltrated into the tissues of the brain. Dr. Rowe didn’t even MENTION the depth of the tumor.

To expand on that dismissal: the more I think about the time it took for her local surgeon to a) get the biopsy done, and b) get the results of the biopsy and order the treatment to be set up at the oncology clinic, the more pissed off I get. From the day of the ER visit where they found the tumor, to the day that we found out the results of the biopsy it was two weeks. After seeing the scan for myself in all it’s horrific glory, I am beyond shocked that there was not a sense of urgency associated with everything he did for my mom. It’s almost as if he thought it was only a matter of time, and that he wasn’t going to be able to do much so, what’s the rush. Probably he didn’t really think that, but he sure as hell didn’t say “Oh my goodness, that’s a huge tumor, and we need to get in there immediately to see what it is and what we can do about it.”

But that’s the past, and I have to get focused on the future. But it still pisses me the hell off.

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One response »

  1. I discovered your blog through a Google alert for our organization name and wanted to drop you a note of good wishes. Also, if you haven’t yet been in touch with our Patient Services staff at the (now) National Brain Tumor Society, do give us a call. It sounds like your brother might have already connected into to this loop, but don’t hesitate to be in touch, especially if you’ll continue to be the daily caregiver. With kind regards – Dawn from NBTS

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