PET/CT scan result

We had an appointment at 15:15 on 17 January with my surgeon to discuss the results of the PET-scan. The wait for the PET-scan was several days but it gave me time to study and think through the options.

The period between the scan until this appointment was dreadful. The nights were broken, thoughts and worst case scenarios running through my mind. Everytime I had the fortune to recover my peace of mind and that my positive attitude took over and made me go back to sleep. Discussing with friends and family provided lots of support.

When the time came, we walked to the clinic, only to find there was a long que waiting. The 30 additional minutes in the waiting room were long. I started reading the Bible....
The specialist said it hadn't spread to lymphe nodes but there was a possible metastatis in the pelvic bone. He then started cleaning my nose and removed tissue for mutation testing. No other findings so I was very relieved. Nothing in lungs, liver, etc. it would be treatable with medicins and as a backup plan through radiation. Great!👍

Clinical Impression:

• Abnormal FDG uptake is seen in soft tissue extending from the anterior aspect of the left ethmoid sinus to nasal cavity and anteromedial aspect of the left maxilla. This is suspicious for the known malignancy.
• Nonspecific mildly FGD avid opacification is noted in the rest of the maxillary sinus, part of the right maxillary sinus and the posterior aspect of the left sphenoid sinus, more in keeping with postprocedural changes or mild inflammation.
• Mild focal abnormal FDG uptake is seen in the left iliac bone. This is suspicious for metastasis.

Briefing with oncologist:

• TNM staging: stage 1 as it is not in the lymph nodes but stage 4 as it has possibly metastasized.
• AJCC staging: Melanoma Stage IV Oligometastatic as it has possibly metastasized in a single second location.

When discussing, the oncologist stated that if the second location is a false alarm, and just a infection etc, then the tumor is contained near the nose.
This the way I am going to deal with it in my mind.😀
No statement nor discussion about life expectancy. We didn't ask either as I am not interested in vague statements which keep on coming back in the dark of the night. It also depends on the mutation and use/effectiveness of new immunotherapy drugs.

Possible Metastasis in the pelvic bone:

• The finding in the pelvic bone is not confirmed cancer. A biopsy is required, but the oncologist suggested to better leave it for now and focus on the main tumor. 
• There are various treatments possible for it later. For instance, when doing the biopsy we will kill it with local radiation.

Melanoma treatment:

• Natural healing. The oncologist agreed that everything helps: Good nutrition, yoga, excersize, keeping the spirits high and don't sit in a corner. Going back to work is a great idea and he encourages it.
• Chemo using Interferon. The oncologist explained that during his studies this was all that was available. Nowadays there are specific drugs to treat Melanoma and Interferon is not used. However, as he is not a Melanoma specialist, the oncologist suggests that I to write to specialist treatment centers in the US AND Australia to find out more about specifics treatments. The oncologist will provide the contacts.
• The specific mutation of the melanoma needs to be identified. There is a lab test possible in Singapore for known mutations and in Harvard for mapping all mutations in the sample. The oncologist will initiate the lab test now for known mutations. I need to decide if you want to send another sample to Harvard. (cost is approx 8,000US$)
• New immunotherapy drugs are available. These are expensive and you can check with your insurance about it. These can start anytime, need to be ordered, and side effects can be managed with medicins. As these are new drugs, effectiveness depends on the type of cancer. There is little known about the treated cases.

Next action:

• The (chemo) oncologist suggested to meet with the (radio) oncologist to discuss the options of radio treatment. An appointment was made and I will write separately about that briefing.
• The surgeon and both oncologists work as a team and will meet afterwards to discuss how to treat me in the best way after lab reports are in. 

All three specialists are Christians and have been working together like this for the last 20 years and saved many patients together. This teamwork is very inspiring and commendable.👍