I have a game plan. The process of the biopsy and possible new chemotherapy won’t be stopped . Why should they? However, I am running a parallel course by soliciting the second opinion of Dr. Einhorn. He is the specialist for my type of cancer and I have all his contact information. He increased he survival rate for testicular cancer, from 10% to 95%.
My short term goal now is to make sure I have all the data he needs. In short this is:
- General diagnosis and treatment information
- Blood results during diagnosis and now
- PET scan source data
- PET scan SUV values
General diagnosis and treatment information
My Oncologist is on board and helping me with the new parallel track. He will send me a description of the diagnosis and treatment information.
Blood results during diagnosis and now
Today when I went in for my hearing test I went by to ask my Oncologist if it was smart to do a blood test now so we have the latest results. This can be good when you compare it to the first blood test during diagnosis. I was very happy that he agreed with my ad hoc request today.
PET scan source data
In oder for Dr. Einhorn it will be best if he can make his own analyses. For that I need the PET scan source data. I requested this already monday and today could pickup the CD. It took me a while to figure out how to view the image data. It is pretty tricky planning with mutiple images, types of images, contracts and other filters etc etc.
PET scan SUV values
Key for determination of treatment for my type of cancer post chemo is what area’s light up as positive and how much they are positive. This is expressed in ‘SUV’ values. Monday I asked my Onc for these SUV values. He said he didn’t have it and only got positive or negative as a result.
This worried me. His method was different and not as ‘detailed’ as the ones Matt told me about and what I saw in the literature. I even questioned if the SUV values were determined at all in my PET scan. I am facing a potentially incorrect treatment recommendation due to lack of the correct data and updated protocol. This is understandable because Mediastinal Germ Cell Tumors are extremely rare.
So today when I got the PET data I was looking for the SUV data. As said, the file format is pretty difficult. To make sure my quest wasn’t in vain I also called a friend who works at the hospital where the PET scan was done. I aksed him if he could verify that the SUV data was in the PET scan results. After a while he confirmed that it was. And I found the PET values.
So now I wait for the info from my Onc. He said that he’ll email it on Friday. Together with all the other info I’ll get that to Dr. Einhorn. BTW tomorrow my Onc will call to tell me when the biopsy operation will take place.
Here are the PET scan iamges with the interpretation from the AMC. Don’t try to conclude anything from this unless you have studied for it. The area’s that the AMC’s nuclear radiologist identified are in the cross hairs. What they are is unsure. I do know that most are leftovers from Theo. Click on the Slideshare logo to go the a full screen capable version.
