SAME TIME TOMORROW

The Tumor Board

Posted in Uncategorized by Sean Holton on May 21, 2010

They didn't have a Tumor Board on Gunsmoke. They just asked 'Doc'.

  

“If everybody is thinking alike, then somebody isn’t thinking.” — Gen. George S. Patton 

I have just experienced the most emotionally exhausting, medically educational and ultimately hopeful week of my treatment since my GBM-StageIV brain tumor was discovered and surgically removed last July.  In fewer than five days, I’ve gone from thinking my maintenance treatment was proceeding smoothly, to being told my tumor had recurred and may require a radical second surgery next Wednesday, to learning my doctors on what is called “The Tumor Board” were deeply divided about how to proceed and finally to being told my prognosis for long-term survival never looked better and there’s no reason to rush into surgery right away. The big picture looks so good, in fact, that I might now be shipped off to a world class brain-tumor center for a day or two to enhance and refine a treatment plan that could help me outrun this terminal illness for many years to come. It may even be one for the medical history books. Seriously.         

 If you think reading that last paragraph was complicated, try living through it. This takes a long note just to lay out the basics, so I’ll keep the blow-by-blow simple and no-nonsense (except for the Gunsmoke picture, which I thought was funny). I can’t take the time to describe my emotions or all the complicated medical details at each stage, so you’ll just have to imagine the medical details and insert your own emotions as needed.       

Monday afternoon: I went to MD Anderson Cancer Center in Orlando for my routine, bi-monthly MRI brain scan to monitor my response to treatment. The initial report from my primary neuro-oncologist was that the scan looked clean and stable, but that he couldn’t give me a definitive report until a dog-ate-my-homework variety computer glitch was solved: He was unable to access my March brain scan for a side-by-side comparison. Okay. Fine. I went home 95 percent happy and wrote a smartass blog post about how no one is immune from the tortures of the I.T. Department.       

Tuesday evening: My neuro-oncologist called me at home and left me a voicemail saying he had finally accessed the March file and had discovered that, indeed, the area around my tumor cavity showed some small changes that might be either accumulating cells killed off by radiation and chemotherapy – or, more alarmingly, new tumor cells. Either way, he said he’d probably be switching me onto some new chemo pills and ordering a one-time jolt of radiation. But since it was a voicemail, I couldn’t ask any questions. I went to bed uneasy (and also pissed at the Orlando Magic for losing Game 2 at home to the Boston Celtics).       

Wednesday evening: My neuro-oncologist called me at home and we had a live conversation. He explained the situation in more detail, including that the radiation would in fact be something known as “stereotactic radio surgery” – in which extremely powerful beams of energy are combined and wielded almost scalpel-like to removed unwanted cells inside the body. It’s an outpatient procedure that takes about 4-6 hours because it’s more involved than a simple radiation treatment. My oncologist said he was going to present his plans for me to the hospital’s six-person “Tumor Board” that was meeting at 6 a.m. the next day to review its portfolio of cases. The board includes my neuro-oncologist, my neurosurgeon, my radiation oncologist and three other cancer doctors and surgeons I don’t know. I went to bed uneasy again. Still, I thought, this is going to be manageable.        

Thursday morning: I had a previously scheduled appointment with my neurosurgeon, who always likes to meet with me after each MRI to discuss findings. This time he would be coming straight from the Tumor Board meeting so he could give me the latest info in person. I figured he would just wave me on through the toll booth of treatment changes proposed by my oncologist. But then came this shocker: He informed me that the Tumor Board had voted 5-1 to overrule my oncologist and were recommending immediate surgery to remove most of my right temporal brain lobe (where the cancer is centered). He insisted that approach would keep me on the curve for long-term survival with minimal impacts to my physical functionality. He said he would give me time to decide whether I wanted to proceed, but was tentatively slotting the surgery for next Wednesday. I was to call back his office by Friday (today) with a final ‘Yes’ or ‘No.’  This news felt like a kick in the gut. I’d gone from the happy words “clean scan” to the scary phrase “temporal lobectomy” in less than 72 hours. I had to cancel plans for a trip I was making to Kansas City next week. Then I began consulting with my family and friends, my siblings made arrangements to fly down here to help me through next week, and with each succeeding conversation I grew more comfortable with the idea of surgery. “Maybe this will be the way to root this thing out once and for all,” I thought to myself. I went to bed feeling pretty good, but still freaked out by the roller-coaster ride.         

This morning (Friday):  I wanted one more face-to-face conversation with my neuro-oncologist because up to this point I still had only talked to him on the phone about the Monday scan results and his subsequent treatment recommendations. Besides, I wanted to hear him explain firsthand about being overruled by the Tumor Board and whether he would eventually be on board with the surgery plan. So I went to see him in person. He surprised me by saying right up front that the board’s discussion had been quite heated and that he still, absolutely, did not agree that surgery was necessary at this point – and he told me why. He thinks that even if the tumor has returned, it is growing so slowly that we can afford another month trying new chemo drugs to see if they stabilize it. At that point, if the answer is no, we can do the surgery then.  He explained that he sees successive surgeries as a “diminishing returns” option based on “backward-looking data”, not a long-term strategic approach. He told me he would support whatever decision I made, but that I needed to call him back before 3:30 p.m. I left his office thinking, “Crap. My expert doctors are in disagreement, and I’m the one that must make the ultimate decision based simply on whatever gut instincts I managed to accumulate over a 25-year career in an industry that is now going down the tubes.”      

Friday afternoon: I began consulting again with family and friends and doctors, and felt like I was racing the clock. I put calls in to the office of my neurosurgeon and radiation oncologist. I asked them if there was time to arrange for an expedited, independent, outside review of my case to help guide my decision. They’re doing that. Meanwhile, the deadline for giving the green light on the surgery passed – the neurosurgeon’s scheduling assistant had gone home for the day. So I told my siblings to cancel their travel plans. It would be at least the following week before I had surgery.  I had decided that much, anyway. Then my radiation oncologist (who had supported the immediate surgery option) called me back – not once, but TWICE — to share the most encouraging information of all. He had gone back over my files in even greater detail and convinced himself that my response to treatment so far has been absolutely terrific – notwithstanding signs of the recurring tumor.  He said that even if it has returned, it is growing so slowly that we have time to pick our path carefully. “You are in a great position here ,” he said. “We have a great shot at long-term survival. Let’s not squander that opportunity.” He actually said that in all his years treating GBMs in a variety of prestigious institutions, he cannot recall a case as promising as mine.       

 So he told me he is recommending not only that we take the time to get the outside opinion that I asked for, but that I actually travel to a place like Harvard, Duke, Johns Hopkins or MD Anderson Houston for a couple of days so they can meet me personally and review my case and make their recommendations on both surgical and chemotherapy options. Those are the top four cancer centers in the U.S., if not the world – particularly for brain tumors. My doctors are great, but it will give them an incredible boost to have this outside advice to guide my future treatment.  The radiation oncologist actually sounded excited about the prospect of this exercise.        

 That’s where things stand now: No surgery next week. The Tumor Board members will confer over the weekend, and our goal by Monday is to have picked a center and finalized a travel plan. And then after that, maybe more surgery, maybe more chemo. At least the final decision won’t be in the hands of a washed-up newspaperman working frantically against his biggest and most important deadline ever.        

Lesson No. 1 of the week: Never be afraid to ask for a second opinion.         

Lesson No. 2: I am lucky to have doctors who are so passionate that they fight over how to treat me, but then show willingness to push the “Stop” button on the standard-treatment, Tyson-chicken-factory patient-processing line and take time to consider the best outside advice available. That — and the fact that they are able to air their own disagreements so vividly in front of me — is proof that I am in great hands.         

Lesson No. 3: I love my family, and I have some pretty incredible friends. (PS: Thanks to my sister-in-law Julie for the Patton quote at the top. It was perfect for this post.)

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12 Responses

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  1. Bluedevil said, on May 21, 2010 at 8:22 pm

    Damn, Seanboy, next thing you know, House is going to want to take your case.Whichever center you choose — and you know which one I recommend — make sure they can treat you for whiplash, too, after this week’s ride.

    One thing I can say for certain is that karma is not going to be a problem… You’ve got so much good vibration coming from your family, your other family and people who just flat care about you that it’s powerful enough to, well, I don’t know for sure, but it’s kind of like a tumor-defense laser… You think?

    Here’s to a good trip… on every level.

  2. claudine hellmuth said, on May 21, 2010 at 10:15 pm

    wow! what a rollercoaster ride!! I can not even imagine what the last few days have been like for you. we are with you through every turn and loop, of this rollercoaster cheering you on!!!

  3. Jamie said, on May 22, 2010 at 12:40 am

    The bright side: You have become “interesting” enough to make the doctors argue. It probably comes under the heading of “interesting times” but at least you are attracting the interest of the big guns trying to make you well.

  4. Elaine said, on May 22, 2010 at 10:03 am

    Washed up newspaperman? I think you’re using every one of your journalistic chops at the moment. I bet it was newspapering that taught you to stay calm (or appear calm) during shit storms, to wait for the truth that emerges from a clash of strongly held opinions, and to appreciate that transparency is never the wrong thing.
    Love you!

  5. carolyn said, on May 22, 2010 at 2:37 pm

    Hey Sean,
    Have been keeping up with this thru Toby and Bill. It’s great that the docs are so interested and invested in your treatment. There is a real advantage to not being just another “cold, mole, or sore a-hole!” I’m sure you could come up with similar comparisons in newspaper terms.
    I’m so happy that it’s going well for you. Will be in Orlando next weekend. Hopefully, we can get together. C

  6. Griff said, on May 22, 2010 at 3:40 pm

    What a wild ride, Sean. The Griffin clan is in your corner, man. You’re an inspiration, dude.

  7. Geri said, on May 22, 2010 at 6:01 pm

    Whew. I was sure glad to reach the end of this posting and get to the good news! Were you holding your breath while it was going on the way I was when I was reading it? How terrific you have such a team of doctors on your side, though. Stay tough with them!

  8. Jamie said, on May 23, 2010 at 1:58 pm

    You have certainly been through the medical mill. At least you were able to end the story on a note of hope.

  9. Flaltus Ohlfahrt said, on May 24, 2010 at 3:37 pm

    Yes, your group of docs is amazing–listening to competing ideas without becoming blind to the logic others are presenting. Oh, another thought, will your neuro-oncologist give you DVD copies of your scans so that you won’t have to go through the anxious period while waiting for the IT god to shed her benevolence on you?

    Things being equal, I bet a trip to Cambridge in the late Spring would be nice. And, they have a great lobster concession at Logan. 🙂

  10. Pat & Becky said, on May 24, 2010 at 4:21 pm

    You were freaking us out for a bit there, sean.

    Through our involvement in the medical marijuana program here in CO weve met a few folks recently who are also fighting the fight daily. It’s a shame that Florida is so backwards, like many states, because while we’ve all made jokes about “weed” and many of us are (very!) familiar with it as a recreational drug, in studies in other countries where the Gov’t doesn’t interefere and prohibit BOLD research with the drug they are seeing positive results on some tumors and other side-effects associated with the disease via the use of cannabis extractions that are ingested orallly.

    We’d love to hook you with some links or shoot a few emails back/forth relaying some of the things we’ve seen in person if you are at all interested in the concept/in more information on the topic.

    either way, know that we think about you and the rest of your family often.

    sending healing vibes and best wishes….

    P & B

  11. fish said, on May 24, 2010 at 4:37 pm

    ditto on that second opinions always good – had one of those that somewhat altered my treatment (nixed an “optional” round of chemo that might have meant some nerve damage)… and i’m still around six years later… and planning for you to be too!

  12. Kathryn Quigley said, on May 31, 2010 at 11:00 pm

    Oh blech! What a week.


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