02/26/10 - MRIs and Radiation Oncologist's Review
Posted 3/8. Actually, I did have multiple posts on 2/26, but the MRI scans (actually taken on 2/25) are in a different format which doesn't play nice with my MRIs from Moffitt, which caused a delay. Although I can't say that it was was responsible for all 10 days of delay... :)
I picked-up the CD-ROM copy of the images on the morning of 2/26 (I ranted about this in my 2/25 post about "Inefficiency"). The CD also included a written evaluation of my scans. When I read this report it upset me. My father had driven me over to pick-up the CD, and he asked what the report said as we returned home in his truck. My response was, "It says I'm screwed..."
Not too long after he dropped me off at my house, Laura came home for lunch. I told her about MY negative interpretation of the report. She calmed me down, finished lunch and returned to work. The main reason that I was upset was because I didn't want to make her upset. I failed that one, having her calm ME!
It turns out my Radiation Oncologist had one of his nurses call me to tell me not to worry shortly after Laura returned to work. I really thought that it was Laura's doing, but it turns out that the report apparently alarmed him also, thus the call from his nurse to calm me. That was totally unexpected, but nice.
T4/5 Tumor, Moffitt MRI on the left, newest (Mease) MRI on right
My Radiation Oncologist went over to the hospital (luckily, it's only about 2 blocks from his office), and he reviewed the MRI images it alarmed him, too. When they looked at the images they compared them to MRIs I had taken on 1/26 at Moffitt (which the person that wrote the report did not have the "luxury" of doing - comparison). It turns out that when compared to my last MRI, they were basically the same.
T12 Tumor, Moffitt MRI on the left, newest (Mease) MRI on right
No change is good! Change for the better (tumors shrinking) is best! Change for the worse (tumors growing or spreading) is bad! In my case no change was good! The negative interpretation of the written report, due to the writer's lack of benefit from one of my previous MRI summaries did cause a misunderstanding for several hours, but it was no one's fault. There was a lack of information, which made the early report incomplete. 'nuff said...
I was determined to post this as my next chemo (Avastin) appointment is just 9 hours away, for which my father will pick me up in 7.5 hours, I will wake-up in 6 hours, etc.
I picked-up the CD-ROM copy of the images on the morning of 2/26 (I ranted about this in my 2/25 post about "Inefficiency"). The CD also included a written evaluation of my scans. When I read this report it upset me. My father had driven me over to pick-up the CD, and he asked what the report said as we returned home in his truck. My response was, "It says I'm screwed..."
Not too long after he dropped me off at my house, Laura came home for lunch. I told her about MY negative interpretation of the report. She calmed me down, finished lunch and returned to work. The main reason that I was upset was because I didn't want to make her upset. I failed that one, having her calm ME!
It turns out my Radiation Oncologist had one of his nurses call me to tell me not to worry shortly after Laura returned to work. I really thought that it was Laura's doing, but it turns out that the report apparently alarmed him also, thus the call from his nurse to calm me. That was totally unexpected, but nice.
My Radiation Oncologist went over to the hospital (luckily, it's only about 2 blocks from his office), and he reviewed the MRI images it alarmed him, too. When they looked at the images they compared them to MRIs I had taken on 1/26 at Moffitt (which the person that wrote the report did not have the "luxury" of doing - comparison). It turns out that when compared to my last MRI, they were basically the same.
No change is good! Change for the better (tumors shrinking) is best! Change for the worse (tumors growing or spreading) is bad! In my case no change was good! The negative interpretation of the written report, due to the writer's lack of benefit from one of my previous MRI summaries did cause a misunderstanding for several hours, but it was no one's fault. There was a lack of information, which made the early report incomplete. 'nuff said...
I was determined to post this as my next chemo (Avastin) appointment is just 9 hours away, for which my father will pick me up in 7.5 hours, I will wake-up in 6 hours, etc.
posted by Mark at 3/08/2010 10:15:00 PM
7 Comments:
Dear Mark & Laura, and all
Well, the update was "bad news, good news" -- but thankfully the "bad news" was not worth the upset it caused you. Of course, the "good news" is that things are still status quo, my friend!
You must trust your doctors' reports and not always your interpretations....as our doctor tells Bill and me, "sometimes the internet and our interpretations tell us more than we need to read, for it gives ALL the information that may not even apply to our cases.... oh well. We still want to stay informed, which I'm sure is your desire.
Believe me, you are informed, and as far as I am concerned (and believe), you are in the BEST place possible -- MOFFIT!!! I believe in that center immeasurably and they will be there for you in every aspect. Keep believing, sweetie.
By the way, my friend who was there last year is heading back to Moffit for a bone marrow transplant the end of this month. She is stabilized with her leukemia after last year's treatment, but Moffit wants to assure everything stays that way and her health doesn't revert to her situation as last year. So, you can see how much I believe in that Center!
You are in good hands, Mark...and your family and Laura are right there for you! We are, too, in spirit, since we are not there physically. Keep up the faith and the AWESOME attitude you have.
Our prayers will continue for you during your future treatments....
Much love,
The Gregory Clan
Hi, Mark:
Glad to hear the news that the MRI was 'no news'. It sounds like you have a top notch doctor, who is staying on top of everything for you. You're a very analytical person in a situation where you don't have all the information you need to complete the puzzle - a recipe for frustration, to be sure!
I've always believed that knowledge is power, but have found that during my son's treatment that is easier said than done! We receive information that we don't know how to interpret, or sometimes we only get part of the information we need... Sigh.
Hang in there, you are in so many people's thoughts and prayers. Good luck with your next round, as your friend says, Keep Believing!
Sincerely,
Marilyn F.
"Same old, same old" never sounded so good.
Keep up the good work!
Mary,
One comment on your comment, I interpreted the written report as negative, as did my doctor. So my interpretation was correct, :). The initial report was very blunt and easy to understand - cancer spread and tumor growth. I don't claim to have any medical knowledge beyond my doctors, and if I do self-diagnose anything, I will ask them about it next.
I try not to post ANYTHING that may not be correct according to my doctors. My rant about inefficiencies in the Health Care system was my opinion, but anything that involves medical diagnoses, I will ultimately revert to the experts, my doctors!
As always, I appreciate your comment, and I hope your friend is doing well!
Thanks!
Mark
Marilyn,
I hope your son is doing well! "Analytical...", I do appreciate that, my former job was as an engineer - now I'm a "disabled" engineer :).
It does help very much when the patient or his/her guardian(s) actively participates in their treatment plan (which can be understandably difficult to do) but the more you can do, (I believe) the more positive results you will have.
Thanks!
Mark
Carson,
Thanks! I agree!
-Mark
Dear Mark,
You don't know it, but I check your blog at least twice a week. I'm so glad that the negative interpretation turned out to be erroneous.
Laura's cousin Barbara
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