What we have learned so far .....

The last weeks have been like a rollercoaster and it has taken its toll on me, my family and my colleagues. Waiting for results, analyzing the available information, communicating them to all loved ones and making the right decisions.
Looking back, there are some things I would have done differently knowing what I know now and things which went very well from the start and have made the ordeal easier to deal with. Let me try and summarize them.

Good lessons: Early and consistent communication
What happened:

• I informed my wife and children all at the same time, sitting in at a quiet table in a coffee shop.
• I informed my family and best friends immediately by phone when I heard the bad news. Hearing the emotions on both sides was very important.
• I did not inform the wider family as it would be hard to keep them all informed.
• I stared a blog to write down latest information, plans and actions.

What was the good result:

• All close family & friends appreciated the early information. It gave them time to absorb the news.
• They appreciated the blog as it gave them accurate information which they could read again and share their interpretation with other family members.
• The combination of calls, WhatsApp group and blog equalized the real picture in each other's minds and prevented misunderstandings.

Good lessons: Keep a positive spirit and be an example
What happened:

• I shrugged it off and kept a brave face.
• Family & friends were happy to hear (and see via Skype) that I took it so well. Technology really makes sharing so much easier when all loved ones are far away.
• I kept studying all possible options based on complete information on the internet. The findings were not pleasant at times, causing bad nights for me and family.  

What was the good result:

• The kids took it in stride so after overcoming the first waves of overwhelming emotions we decided to life day by day, and continue activities as planned before the news hit us: go for aikido lessons, invite friends over for diner, have separate lunch as planned etc.
• Family & friends were happy and relieved to hear I took it so well.
• I had lots of positive energy to tide over the periods of waiting for better information.

Bad lesson: Early diagnosis without proof:
What happened:

• The surgeon interpreted suspicious scan results and diagnosed 'stage IV melanoma' before waiting for firm proof. This scared the hell out of me, my family & friends.

What were the results:

• The surgeon sent us to the chemo oncologist for treatment advice. The intimidating series of drug options and threatening feeling that if I didn't start treatment I would die soon made me emotionally very dependent on his advice. As a result I initiated a lab test too early for check for existing gene mutations.
• We initiated a request for 2nd opinion to the top 2 Melanoma research institutes in the US without proof that I actually had cancer. The 2,500$ bill to get a second opinion stopped me and made me realize I better be sure I needed that advice at that point in time.
• I informed my company and gave them the news while it was still not confirmed. My company jumped to conclusions and stressed on the standard policy to repatriate when seriously ill.

What we could have done better:

• We should have asked for biopsy and MRI scan to confirm the suspicions. 
•  Until confirmation was in, we should have taken the chemo oncologist advice for info, and not feel emotionally burdened by not starting treatment. Doing nothing is best advice here. Weigh the benefits of treatment versus waiting.
• We should have informed the company that there were suspicions and that the diagnosis very very preliminary, waiting for confirmation.

Bad lesson: PET-scan was taken too early after the operation
What happened:

• The surgeon wanted to confirm if and where the cancer had spread (lymph nodes, lungs, liver). 
• We thought the PET scan would also provide proof of the cancer itself.

What were the results:

• The scan showed a lot of yellow areas of increased metabolism of the injected radioactive sugar trace. It is impossible to discern inflammation from tumor, making confirmation of cancer impossible.
• The radio oncologist had only the pre-operation (Nov'16) CT scan to work with to analyze if suspicious activity had expanded into any dangerous areas like around the eye.

What we could have done better:

• Ask for an MRI first to differentiate malignant tumor from benign fluids. 
• PET scan should have been done after confirmation of cancer and 1 month after operation when inflammations were gone.
• We should asked for biopsy of tissue on the nose and sinuses to confirm the cancer was actually there, and not only in the removed tissue.