One patient with glioblastoma still alive nine years later
by jessarrow on Thu Jan 24, 2013 11:37 PM
Hi, I am new to this board and brain cancer in general.
For those diagnosed with this what is/was your initial course of treatment? What did your pathology report say? I have noticed some on the these boards refer to their diagnosis as a oligo ll/lll and I am curious what that is? For those who have gotten a second opinion on pathology, how did you do that and why?
Here's my/our story: My husband was diagnosed with a oligodendroglioma ll after undergoing surgery to remove the tumor. Our intial consult with the local cancer center was underwhelming. They don't have expereince with this cancer and have referred us to Duke, we have a consult at the beginning of Feb. I don't know what percentage the resection would be considered, it's not written in records and no one has given it a number, though I know they can never say 100% removal. His postop MRI was "clear" and showed no tumor or associated swelling like the preop MRI did. The pathologist graded him a ll but commented that there was increased mitosis and Ki67 labeling rate, both of which indicate growth and a higher grade, other higher grade indicators were negative. One oncologist we have met with feels the pathology comments deserve consideration in whether to just observe with regular scans (which would be the standard course of treatment at this point) or more agressively treat with chemo/rt. She said the grading was subjective and those notes made her pause in following a wait and see protocol.
Anyone with a similar expereince? THank you so much.
by bebron on Sat Jan 26, 2013 05:35 PM
Hi and welcome to the board. My husband was diagnosed in March 2011 with an Oligo II. I awoke to him having a grand mal seizure on a Saturday afternoon, he was rushed to the ER and diagnosed that afternoon with a brain tumor. He had surgery the following Wednesday to remove it (it was in the left temporal lobe). He had a wonderful neurosurgeon, Dr. Koeleveld, in Raleigh, NC. He felt like he got as much as "all of it" that you can say. He sent us to an oncologist he highly respected and she suggested a wait and see approach (as did the radiation doc we met with). She is friends with Dr. Friedman at Duke and sought his opinion and he agreed. We went to another oncologist for a 3rd opinion and he, too told us the same thing. We were told that in my husband's case, it was best to keep our "arsenal of weapons" in case he had a recurrence. He was getting MRIs every 6 months and all have come back clear. At his last follow-up appointment, Dr. K told him he thinks he can now go for MRIs annually unless, of course, he develops headaches or has another seizure. He is on Keppra and Dr. K wants to keep him on that as long as he does not have any negative side effects. I am not sure about the Ki67 labeling rate and mitosis but I would tell you to go with your gut on everthing. I am not sure about your faith walk, but I just prayed for God to give us peace and discernment about what to do with the situation we were/are facing - and He always did (still does). We were being pressured by friends to go to Duke, etc. but we just did not have peace about that. We truly felt like Dr. K was on call for a reason that day when Troy went to the ER and he has turned out to be a fabulous doctor who we see as family now. I will keep you and your husband in my prayers. Know that you are not alone in this and seek out people to talk with because this is a journey you are on as well and others are on it with you...let them be there for you. Much love, hope and peace to you and your family!
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