This is a duplicate of my other recent blog post, but intended for readers who do not see that blog on a regular basis.
I wanted to take a little time to post a quick blog about my recent trip to San Diego and update all of you readers since I know that you've been concerned and anxious to hear about my situation.
I flew into San Diego on Monday the 11th. I had a few preliminary appointments to get cleared for surgery on Wednesday. Lab draws, the go-ahead from anesthesiology, and another MRI to map specific points in my brain to be used as a GPS during surgery.
The biopsy results (including path) revealed that the increased blood flow and duration results from the Profusion are consistent with tumor recurrence. Obviously not something that I want considering that I have not even been battling this disease for a year, and yet there are already signs of progression. Additional surgery is not a desirable option or part of the current plan. Instead I am to receive another radiation "boost."
More radiation means more radiation to the area that was already treated last winter. Another round of radiation has its risks, and I am told that most hospitals wouldn't provide this type of treatment a second time for the same beast. Because the area to be treated is small at this point, and because it is adjacent to the cavity where my initial tumor was partially resected, my doctors advise to proceed with more radiation.
The plan was to go ahead with 5 days of radiation treatment to this area starting Monday. My original UCD Radiation Oncologist never shared specific information of his treatment plan/summary with my Radiation oncologist (Dr. Murphy) at UCSD, so I've decided to complete the footwork to get this information expedited as soon as possible and then resume treatment in San Diego on May 26. I am not encouraged to "sit and wait" or to avoid treatment altogether, but I just didn't feel comfortable rushing into treatment so soon knowing that the concise plan from my previous treatment was not readily available for my San Diego Physicians. Although the information is unlikely to have a profound affect on my new course of treatment, I feel more at ease to go through with this course of action.
Sunday, May 17, 2009
Monday, May 4, 2009
Hope for a Cure
I'm simply touched by my best friends thought and inspiration to run in Washington's Race for a Cure this passed weekend. She ran in celebration of me. The encouragement and support from loved ones makes this process all that much easier.
I've decided to include a copy of the email that I sent out to friends last week to provide some information and update of my situation as it currently presents itself. I apologize to those who have contacted me with gratitude about my posts and my story. I apologize for being so slow to update! It won't always be this bad!
Some of you may know that I went to San Diego this past week for a follow up appointment with my Neurosurgeon and initial Radiation Oncologist. I also went to take a couple of MRI exams that I would not have had in Sacramento.
My new MRI scans looked good. There wasn't really an actual tumor, but areas with cancer activity, or as my doc put it "cancer cells hiding in the bushes." It's a little harder to explain without a visual. :) So this was good news to hear. I was told to proceed as normal, and continue with my usual activities and to follow up in another few months.
The MRI I took was in three parts and I was only able to receive the first result which I already discussed above. My MRI also included Spectroscopy and Perfusion. Fancy tests that I can't really describe, but measure blood flow. The perfusion test results were not going to be ready that day nor the spectroscopy. Dr. Alksne (my neurosurgeon) advised me that he would call me when he got the results if there was something that I needed to know.
The radiologists were unable to clearly interpret the Spectroscopy results, so we don't actually know the findings of that exam. I am told that once Dr. Murphy (oncologist) returns from his conference, he will try and interpret them himself, as well as a few others from the department.
So I received a call from Dr. Alksne on wednesday regarding the other test results. The Perfusion exam showed increase blood flow and duration behind the cavity (space where tumor was surgically removed) that was treated with the initial radiation. Increased blood flow and how long it lasts in that area can be signs of either tumor spreading, recurrence or even radiation effect. We want the radiation effect, because that would obviously be less concerning. Radiation effect is also necrosis (dead tissue) for those who aren't up on their cancer lingo. :)
Because the radiologists report suggests that the findings are due to tumor recurrence, more tests are needed. Dr. Alksne is not rushing to any conclusions at this time and is going to consult Dr. Murphy upon his return and also speak with other physicians at the next Brain Tumor Board which will be held May 5. If the consensus is that the results are more consistent with recurrence, I will have another radiation "boost." This would be over a few days and is an outpatient procedure. I would not have another balloon inserted into my head (sorry Uncle Kevin-no space age hats) but have the fractionated beam treatment instead. However, before any of this begins, if more treatment appears necessary, the first step will be to perform another biopsy. When speaking with Dr. Alksne, this seemed to be the likely next step no matter the result. The doctors do not want to assume treatment is necessary and do not want to wait the original proposed three months before the next follow up.
More than anything else, this just speeds up my next follow up. There isn't any reason to worry now, and even if I have reason for concern when I get further results, I can't let myself worry! What for?
Dr. Alksne did say when I asked him if this news changed anything that he told me while I was in his office, and he said that it does not. We just don't want to let this situation continue if it should become an issue. I am still doing well. I feel well. I am interested to find out more about the exam results, but I believe that I will be well regardless. :) God still needs to use me.
So, to recap;
I will find out very soon after the May 5 Tumor Board meeting, what my next step is going to be. Either way, a biopsy is likely. (Maybe I can help you with that yard work Kevin). :)
If any of you have questions, feel free to email me.
Love to you all!
I've decided to include a copy of the email that I sent out to friends last week to provide some information and update of my situation as it currently presents itself. I apologize to those who have contacted me with gratitude about my posts and my story. I apologize for being so slow to update! It won't always be this bad!
Some of you may know that I went to San Diego this past week for a follow up appointment with my Neurosurgeon and initial Radiation Oncologist. I also went to take a couple of MRI exams that I would not have had in Sacramento.
My new MRI scans looked good. There wasn't really an actual tumor, but areas with cancer activity, or as my doc put it "cancer cells hiding in the bushes." It's a little harder to explain without a visual. :) So this was good news to hear. I was told to proceed as normal, and continue with my usual activities and to follow up in another few months.
The MRI I took was in three parts and I was only able to receive the first result which I already discussed above. My MRI also included Spectroscopy and Perfusion. Fancy tests that I can't really describe, but measure blood flow. The perfusion test results were not going to be ready that day nor the spectroscopy. Dr. Alksne (my neurosurgeon) advised me that he would call me when he got the results if there was something that I needed to know.
The radiologists were unable to clearly interpret the Spectroscopy results, so we don't actually know the findings of that exam. I am told that once Dr. Murphy (oncologist) returns from his conference, he will try and interpret them himself, as well as a few others from the department.
So I received a call from Dr. Alksne on wednesday regarding the other test results. The Perfusion exam showed increase blood flow and duration behind the cavity (space where tumor was surgically removed) that was treated with the initial radiation. Increased blood flow and how long it lasts in that area can be signs of either tumor spreading, recurrence or even radiation effect. We want the radiation effect, because that would obviously be less concerning. Radiation effect is also necrosis (dead tissue) for those who aren't up on their cancer lingo. :)
Because the radiologists report suggests that the findings are due to tumor recurrence, more tests are needed. Dr. Alksne is not rushing to any conclusions at this time and is going to consult Dr. Murphy upon his return and also speak with other physicians at the next Brain Tumor Board which will be held May 5. If the consensus is that the results are more consistent with recurrence, I will have another radiation "boost." This would be over a few days and is an outpatient procedure. I would not have another balloon inserted into my head (sorry Uncle Kevin-no space age hats) but have the fractionated beam treatment instead. However, before any of this begins, if more treatment appears necessary, the first step will be to perform another biopsy. When speaking with Dr. Alksne, this seemed to be the likely next step no matter the result. The doctors do not want to assume treatment is necessary and do not want to wait the original proposed three months before the next follow up.
More than anything else, this just speeds up my next follow up. There isn't any reason to worry now, and even if I have reason for concern when I get further results, I can't let myself worry! What for?
Dr. Alksne did say when I asked him if this news changed anything that he told me while I was in his office, and he said that it does not. We just don't want to let this situation continue if it should become an issue. I am still doing well. I feel well. I am interested to find out more about the exam results, but I believe that I will be well regardless. :) God still needs to use me.
So, to recap;
I will find out very soon after the May 5 Tumor Board meeting, what my next step is going to be. Either way, a biopsy is likely. (Maybe I can help you with that yard work Kevin). :)
If any of you have questions, feel free to email me.
Love to you all!
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