Tumors or Radiation Necrosis
Posted by Casey on September 16th, 2009
I have an update on the current plan for treatment that I wanted to share with you all. I received a call from Dr. Weinberg, my surgeon at M.D. Anderson who removed my original brain tumor. He was on vacation last week, so we weren’t able to connect with him when I was in Houston. He connected with Dr. Wolff & Dr. Slopis this week to discuss the current state of my scans, and had the following to share…
In regards to the PET CT, he updated me that the final read from the radiologist noted that one of the two spots did actually show up, but very slightly. He reminded me that generally speaking, if this were a tumor, especially a high-grade tumor, these spots should show up more than they currently do. He said that because the intensity is less than expected, it could be more in line with necrosis rather than cancer.
In regards to the biopsy, he does NOT recommend a biopsy in the next week or so. After reviewing the MRI and the position and size of the two spots, the team feels it might be too risky to perform a biopsy yet. The tumors are already located in a sensitive area of my brain (remember, it was not removed during my original surgery because I would likely have had some combination of paralysis, memory loss, etc.), but these two spots are also very close to critical blood vessels and nerves. Targeting them with a needle biopsy runs major risks. If the nerves or vessels were hit while trying to perform the biopsy, I would run similar risks of stroke or paralysis of the right side of my body. So while the biopsy serves to make our next decisions for treatment, having such a small target and serious risks makes him suggest we wait several weeks to see how the tumor changes.
Because of this, I will not go back next week. Instead, we’ll be working on appointments for about five weeks from now. At that time we may see growth in the tumor, but Dr. Weinberg says this would actually be a good thing in this case, as it would give him more working room for a less-risky biopsy if they decide to perform one. Further, if that decision is made, they’ll be able to perform one while I’m down there that week so I don’t have to fly down yet again.
Finally, it’s rather easy to keep thinking of this thing as a tumor, so I asked him what the hell this “necrosis” thing really is. His response: “Casey, I’m going to give you Dr. Weinberg’s Philosophy on Necrosis.”
He described how post-radiation brain tissue can die, causing inflammation of that area. The inflammation then irritates more area and can cause death of additional tissue, which in turn causes more inflammation, more irritation, tissue death, etc., etc., slowly growing as this happens. In a lot of ways it’s similar to a tumor, which is probably the best explanation of why it’s so similar on my MRI. Obviously, I’m a believer in his philosophy.
In short, things are on hold for a few weeks while we wait for these spots to grow or change. I’ll be heading down to Houston in 5 weeks, and based on those scans we’ll decide if a biopsy is safe. If so, I’ll have it that week. If not, we’ll revise plans accordingly. Obviously it’s a bit strange to me, sitting around for these things to grow. But it also makes sense and is far less risky, so that’s what I’ll do.
Thanks to all of you for your amazing support. I’ve been absolutely blown away by the comments, encouragement, prayers, and well-wishes. One thing is certain… I’ve been through this before and it’s things like those that keep me strong and will continue to do just the same. Thank you.
Tags: appointments, houston, mri, pet ct
Casey, my sweet -
You are in my thoughts constantly. I love you and am sending you tons of healing and positive thoughts and prayers.
casey,
thank you for taking the time to inform us of the latest. all good thoughts and positive energy is directed to you.
love you,
julia
Geez, I don’t know whether to breathe a sign of relief, or… or what. But I do know that I love you dearly, and have for most of my life now (good grief, when did THAT happen?), and am sending you tons of love. So is Sam :o)
-S.
Casey dear,
Thanks for the update-josh and i are in sf and we’re thinking of you! I hope we can see you when we return, it has been too long!
Casey,
See ya back here on the right coast.Every thing will work out fine.
We love ya,Joe,Janelle,Ben,Emely,Hannah,Oscar,andVinny
Cassey.
See ya back here on the west coast.
Every thing will turn out fine.
We love you,Joe,Janelle,Ben,Emely,Hannah,Dan,Oscar,andVinny
All my best thoughts and hopes are with you…Keep on Keeping on!! Jen
Thanks for the update, brother, Hang in there. Thinking of you…
Love
Fonz
Thanks so much for the explanation. It makes sense. Best wishes to you, Casey.
Staying postive. Love and prayers……
Kevin, Lucy, Dom, Mary, and Tess
Casey- Thanks for the updates. Hang in there with everything. You are in our thoughts.
Sara
p.s. You are amazing!
Hey CAsey thanks for the update & only think positive thoughts!!!! We love ya & are praying for ya!!
Bernie, Lisa, Dani, Kenz, Roo & CAm!!!
Many hugs and prayers are going your way. You are my inspiration.
Continuing to think of you. If you need anything – ANYTHING at all please let me know. I like Dr. Weinberg’s philosophy as well, makes a lot of sense. Love you Case.
Casey – once again, a story that only you could tell so well! (by the way – thanks for helping me learn a new word – necrosis). As you wait these next 5 weeks, I know we’ll be waiting alongside you waiting to hear the next set of news. And, of course, keeping our fingers crossed!
Sweet Casey, we love you and send good vibes your way. xoxoxox Roma, Kat, Vovka
Only positive thoughts……we’re all praying for you!! Love ya!!
Thanks for the updates Casey. Hang in there…if you need anything, I’m just down the street.
Casey,
Wow, you have knack for describing everything so simply and vividly to us.
Now when should we start your book tour across the US and Europe?
Love and prayers,
Lisa, Chris and Sydney
We pray, you inspire. You have become our inspirational rock. We love you and will all send our positives directly your way. I am so proud to have you a member of our family.
Aunt Jan, Uncle Jim and Just A Dog (JAD)
Casey: It’s good you have time to stay in your familiar surroundings. May you find strength, focus, & productivity in your work…I am amazed at how researched you are on your health. The doctors seem honoring, hopeful, & determined to find answers. May the weekend give you needed rest. It must be a relief to NOT be inline at an airport!
Hi Casey — thanks so much for the update … my beads continue to roll for you and always positive thoughts are headed your way. Let me know when you’ll be in DSM and we will most certainly connect … You amaze me, you inpsire me, and most importantly, you give me hope ….
Love ya always!
Jane, Johnny and Maxwell Smart
Just cyber stalking you and saw the news of the last week. What a roller coaster! I’m thinking good thoughts for you!
Melaina
I know Granny is watching over you right now, and I know her strength is in you. Keep up the good fight! My love and prayers are always with you!
Love you cuz,
Dan
Hi Casey,
I agree with Sara Blair, you are amazing. Mike and I think of you often and have you in our prayers. Let me know when you need a room in Houston. Take Care, Vickie and Mike Ruma
Casey Casey, thanks for the good info. If you’re up for a lunch while you’re waiting, my treat!?