Now that I have my PET scan results and the SUV values I can compare it to what the specialists say.
I have 5 area’s which lit up positive:
RECHTER LONG NODUS 1.SUV 1.43
LINKS PARAORTAAL 1.SUV 4.22
PARATRCH LINKS 1.SUV 4.66
HOOG PARATRACH 1.SUV 3.66
VOORSTE MEDIAST 1.SUV 3.54
The names correspond with the image names and what the AMC designated them. Also I added the SUV values in the end.
Here are the visuals:
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.
Theo has been ‘cut to pieces’ by the chemo. There is a crater like area between my lungs where tissue lights up. This ‘lighting up’ can be scar tissue being absorbed or active cancer. What it is exactly is the key question. The image “RECHTER LONG NODUS 1.SUV 1.43″ is the lung spot. My dutch Onc wants to rule out that that one isn’t related to Theo. That is why we are doing the biospy.
It is an art and not a science to interpret the PET scan results for further treatment. There is little research for my type of cancer. As said I believe that Dr. Einhorn is the best artist. The little research there is says that a negative PET scan result indicates a low likelihood of persistent cancer after chemo therapy. However a positive PET scan does not translate into a similar high probability of persistent cancer.
Matt set the bar at an SUV value of 4. His case is not the same as mine so I don’t know if I can do the same. Yet I do now that two spots are higher the 4 SUV. This is why a specialist with experience should look at this.
Need more detail? Here is the Flickr set of the PET data.
Tomorrow I’ll know when the biospy is. And yes, be sure to find me here writing about it 
Helder verhaal Maarten. Ik zie dat je met onc samen de regie genomen hebben. Prima om te doen.
Gr Lucien
Your bravery continues to inspire!
You are in our thoughts daily!
Katherine and Hans
xo xo
Hey Maarten — I’ve been following, since Lori gave the news. I began to fear the worse the last few days, I guess I misunderstood the timing of the results and figured silence was not good news (plus my email updates must be on the fritz). So, though it doesn’t help you — I’m relieved… in my book you’re back into territory of “treatable cancer”! woot.
Sorry we weren’t in contact during all this — shows that’s its best to keep in touch with friends — damn this fragile life. You deserve better.
Your attitude is amazing… its inspiring, and of course always a reminder that y problems are small. I too want to lose some weight… but but, um, most my cells are behaving.
Anyway, thanks so much for the blog, honest updates, and the like.
Good for you for the 2nd doctor opinion thing — according to movies I’ve seen :p – the patients who partly steer their treatment plans have best success.
Give Lori a squeeze, you guys must be so worn out! Let us know if there’s anything we can do (really, I’m not doing anything important, so fire away).
Love and stuff, and most importantly, good luck and happy healing.
Rod (& Dawn).
My husband recently had his 3rd PET Scan for Non-Small cell Lung Cancer, Stage 1V at the start. one nodule in the right lung, two in the left lung, and a Lymph node blocking the left airway. He has had radiation Tx. and Chemo until and including present. Each PET Scan has improved. The Lymph node has disappeared, the right lung is clear and the July 29th 2009 PET results reads:
Patient with low level metabolic activity related to right perihilar lung consolidation and increased density. The area of air space disease and density is increased compared to the prior examination. The SUV Values are approximately 3.1 and these changes are felt to most likely to be secondary to post-treatment changes. Residual disease cannot be excluded. The Air space consolidation is increased, however, and continued follow-up examination is warranted.
The overall pattern is felt to be relatively stable with some imcreased air space density, which does not presently show a significant metabolic uptake to suggest progression of disease. Please correlate.
ADDENDUM:
Compared to the prior studies, there has been progressively increased airspace disease in the left upper lobe, as well as superior segment of the left lower lobe. Additional increased airspace disease is also noted along the mediasinal order on the right side. There has been progressively decreased activity in the right hilum Also previously seen significant activity in the left pulmonary nodule in the upper lobe on the original study is not appreciated on the current examination. Findings are most likely related to postradiation. No new foci of abnormal activity are noed on PET images. Continued followup is recommended.
The report also states: On today’s examination there is no significant abnormal metabolic activity identified in the neck, supraclavicular fossa, or axilla. Dense atherosclerotic calcification in the thoracic aorta is noted. There is consolidation identified involving the region of the left upper lobe and superior segment of the left lower lobe with heterogeneous air space density. These areas have low-level metabolic activity activity. SUV values of approximately 3-9. These air apace densities could be post obstructive inflammation. A discrete parenchymal mass is not seen. There is consolidation present with low level metabolic acivity.
Our treating Oncologist does not under stand the results and keeps saying she doesn’t understand the report.
Can you inform us what the increased airspace and density relates to. Also metabolic activity. Is the SUV values based on a scale of 2.5 as the low and 18 as the high? Then is 3.1 almost no cancer at at all? Not sure if the increased air space and density relates to COPD and emphysemia.
Thank you for your help! Janet