Diagnosis accuracy & Tentative treatment strategy

During discussions with the radio oncologist it was found that many suspicious active areas were a result of post-op inflammation. As a control engineer my gut feel says that it would be prudent to take a step back and asses possible errors in measurement during the diagnosis of the tumor:

• All three specialists have no experience with mucosal melanoma
• The imaging technology has a certain degree of error. PET scan and CT scan images are overlayed/superimposed to show the areas of increased injected sugar metabolism activity. 
• Inflammation and tumor show up on the scans with the same brightness level

Basing any decision on the scan taken 1.5 weeks after the operation needs to be considered carefully and we should not jump into hasty action. We have time as the tumor is still contained. My wife and son, who studies physics, agree with this approach and findings. It's important to get agreement on this as a family since all next actions will be based on this.

As a result, I feel it's better to give the body time to recover fully and do another scan when the interval is safe (from radiation viewpoint). Also an MRI (map the soft tissues) should be considered as that was what the radio oncologist recommended as basis of radiation treatment.

My wife, who fortunately is Japanese, is checking with the hospital in Japan to obtain their diagnosis and recommended treatment.
I will now ask for a second opinion from the 2 experienced melanoma doctors in the US, whose names were provided by the chemo oncologist. This may take time which is another good reason to wait with treatment.

Tentative plan: (to be discussed with the chemo oncologist coming Wednesday)
Make an updated diagnosis comparing a new scan with the current one, and use that as a basis to decide treatment:

• Wait for 2-3 weeks to let the body recover fully, and get a second treatment opinion from the hospital in Japan and 2 doctors in the US.
• PET/CT scan to decide on the preferred treatment strategy
• Decide the type of drugs for chemo treatment based on the lab results: Specific mutation drug (if found in the lab test) or the new Immunotherapy drug Nivolumab
• Drug treatments (4 weeks). This depends on diagnosis and advice by hospital in Japan. If they advise to start treatment early then we skip the drug treatment.
• Proton treatment in Japan (about  4 weeks)
• PET/CT scan and check progress. Decide if drug treatment is required or not.
• Drug treatments (4 weeks)
• PET/CT scan and check progress.
• Let white blood cells take over the fight ( 4 weeks)
• PET/CT scan and check progress
• cont. until recovered.

Back/up plan:

• Restart Nivolumab
• Second proton treatment
• Invasive Surgery, high risk as it's near the eye and brain.
• !no electron radiation due to side effects.!

During treatment:
Watch peculiar new pains, numbness, double vision.
    - Then first MRI to map all soft tissues.
    - Decide on surgery in sinuses and nose.

Notes: 

• Some patients in Japan who opt for proton beam treatment after being diagnosed with Melanoma decide not to take any drugs before or beside the treatment.
• Some patients start treatment 1 month after being diagnosed. In those cases there was no operation preceding the PET-scan.
• Proton treatment has been practiced in Japan for 14 years with very good results.