Draining the sinuses

Its now 3 weeks after the polyp removal operation took place.

Next week Thursday I will have an MRI scan taken and I am now trying to drain my sinuses as much as possible. This image is the exact situation which I have, the sinuses on the left are both full of fluid.

I have started steaming daily with 2 drops of tea tree oil since the operation. It doesn't seem to drain well but there is dark mucus coming out when I flush my nose with saline solution.

I keep on doing it, beside doing this massage before and after.

My daughter will skip a grade to Sec-1!

Me and my wife agreed that the education of our daughter should not be affected by my sickness. We decided it was better for her to start English education after 2 years Japanese school. They prepared and yesterday my daughter took the test which went very well. On Tuesday we will get confirmation if she can start in Secondary 1 from 1-Apr this year.

This will mean she has overcome the switch from Japanese to English education when moving from Japan to India, and the switch back to the Japanese school when we moved to Singapore 2.5 years ago. She lost half a year twice due to the 6 months difference in starting time of the Japanese school year. She is finishing Primary-5 now and if all goes well she will start in Sec1 from 1-Apr. She will skip a year and be back in the right grade based on her age!

Amazing! As a family we achieved that, never mind the tough circumstances. We can be proud of ourselves.
Cancer pushes us to live!

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.

Good news!

Me and my wife visited the surgeon this morning to get clarification and confirmation on actual existence of cancer. We told the surgeon that the cancer center in Japan cannot provide any second opinion or treatment advice without confirmed Melanoma biopsy.

The surgeon said that the nose is healing very well and is clear of any discoloration, and therefore without any signs of melanoma. He took samples from the nose near where he removed the polyp for biopsy to remove any doubts.
An MRI scan will be done next week Thursday after which we have an appointment to review the biopsy report and the scan findings.

The chemo oncologist suggestions of treatment are all based on the initial statement of the surgeon that melanoma was found in the polyp, and the result of the PET scan.
The surgeon confirmed that the PET scan taken 1.5 weeks after operation was meant to see if the cancer had spread anywhere, not to confirm cancer in the nose.

In the experience of my wife, who lost her mother and grandparents to cancer, all this is very different procedure as would have been done in Japan. Specialists here immediately jump to the worst conclusion and engage their own team of oncologists to provide advice. In Japan the doctors follow a different protocol, carefully weighing information and preventing over-treatment due to a point based merit-demerit system implemented by the Japanese government.

HR should be made aware of this typical specialist behavior in Singapore, and together we can learn from this episode to not jump to conclusions simply because of one private specialist's opinion.

I do want to repeat that I have informed HR with facts and that the suspicious results of the tests and opinion of the surgeon were reported without asking for confirmation.
It was not known to me that when a doctor in Japan provides such diagnosis, it is usually a signal that it's very very serious, and hence I do understand the reaction of HR.
Apparently in Singapore one need to ask a lot of questions and resist following (expensive) private specialist advice and referrals to oncologists. This difference in culture is all new to me and my wife.

I would never have reported suspicious opinions of specialists if the reaction from HQ would be so drastic. Honesty and inexperience in this respect should not be punished with a premature repatriation decision.

Delayed lab test

The lab test results to identify mutations are delayed until after Chinese New Year.
The visit to the oncologist is rescheduled to 1-Feb.
Another week of waiting for important information .....
Keep up the spirit!

Headaches, in both eyes

I start to develop pain in both eyes when I have to focus. Since it is in both eyes, I am so not worried its related to the Melanoma, and this can be an infection, a post-operation inflammation or a sign that I need better reading glasses.
When I googled the cause of the pain behind the eyes I ran into this:

Ophthalmic Migraine

"(also called acephalgic migraine, migraine aura without headache, amigrainous migraine, isolated visual migraine, ocular and optical migraine)
Migraine headaches may be preceded by a visual "aura", lasting for 5 to 30 minutes (most commonly around 15 minutes), and then proceeding to the headache. Some people, however, experience the aura but do not have a headache. This visual aura can be very dramatic. Classically, a small blind spot appears in the central vision with a shimmering, zig-zag flicker light inside of it ("scintillating scotoma"). This enlarges, and moves to one side or the other of the vision, over the 5 to 30 minute period. When it is large, this crescent shaped blind spot containing this brightly flashing light can be difficult to ignore, and some people fear that they are having a stroke. In reality, it is generally a harmless phenomenon (with one exception noted below), although many people subsequently get the migraine headache. Since migraine originates in the brain, the visual effect typically involves the same side of vision in each eye, although it may seem more prominent in one eye or the other. It is usually mainly perceived as occurring in the eye in which is occupies the temporal (outside) field of vision. The visual phenomenon would also be perceived in the nasal field of vision of the other eye.

Some people get different variations of this phenomenon, with the central vision being involved, or with the visual effect similar to "heat rising off of a car". Some people describe a "kaleidoscope" effect, with pieces of the vision being missing. All of these variations are consistent with ophthalmic migraine. There are many examples of "visual migraine" that have been drawn by patients available on the internet."

I have this a few times per year! Glad I don't have the headaches that usually come with migraine.

Action: 2nd opinion in Japan and proton treatment

I explained my preference for proton radiation in Tokyo to my boss and our HR department. I asked them to confirm insurance coverage and approving leave for 6 weeks. My boss agreed gloriously to the request for leave.
HR informed that HQ policy is to repatriate a person who is very sick which might be a new stumbling block to be overcome as my home-base is Japan.

I just want to do the treatment and continue my work etc without the additional stress of moving etc. Also my daughter is planning to start at a new school and we don't want this (serious) sickness to get in the way of her future education.
So I asked HR to wait with this repatriation decision until Melanoma is 100% confirmed, and that the treatment is proven effective (or not).

To support the doubt that perhaps all this is still a false alarm, I re-read the biopsy and PET scan results with the most positive thinking interpretation. The result surprised me, but not my wife. She had kept her doubts all the time.
Melanoma is not 100% confirmed yet because:

• The biopsy of removed polyp is confirmed to contain Melanoma. Nothing is mentioned that Melanoma is confirmed in the nose or sinuses.
• The PET scan result states there is suspicious activity in left nose and sinuses.
• The mild activity in the pelvic bone is also suspicious activity.

The surgeon decided to take worst case scenario by diagnosing Melanoma stage IV based on above  information. It appears he overreacted as was then also apparently in shock when he said this was the first time to find Melanoma in his career.

So, actually the visit to hospital in Japan is to 100% confirm Melanoma and to get treatment at the same time. We trust the interpretation of the PET scan results by experienced Melanoma doctors in Tokyo more, and by doing this we seek their second opinion. It is also best to use their equipment as the same scan will be used for the treatment.

All this is still very confusing, and we still hope for the best that all is false alarm. I remember that all this information was given to us on last Tuesday, which left me in a state of disbelief and much of the discussions are a blur. The specialists gave their opinion, and based on that we proceed with further tests etc and treatment advice.
I was glad that my wife and son were with me, as they remembered (and missed) different parts of what the specialists had said. Lesson learned is to record these critical meetings next time!

Next actions:

• I will ask the chemo oncologist tomorrow (Wednesday) to confirm current status and understanding of what is confirmed and what is suspected based on inputs from the radiologist.
• I will ask my surgeon on Thursday if he still confirms this diagnosis as valid after hearing the radiologist's explanation and doubts.
• My wife will make an appointment with the Kashiwa Cancer Center and fly there to meet them with all documentation, diagnosis and stated suspicions.
• I will immediately fly to Japan next week when the hospital accepts to test and treat me.

This article by American College for Radiologists confirm the preference of Proton treatment:

Plan B:
If the proton radiation has no effect, we will start drug treatment based on mutation lab test results and immunotherapy. This treatment will have to start after moving back to Japan, as that is company policy.
I have requested a second opinion from these two doctors, whose names were given to me by my chemo oncologist.

1) MSKCC (Memorial Sloan Kettering Cancer Center)

dr. Jed D. Wolchok (https://www.mskcc.org/cancer-care/doctors/jedd-wolchok)
E-mail: international@mskcc.org

2) DFHCC (Dana Farber / Harvard Cancer Center)

dr. F. Stephen Hodi (http://www.dfhcc.harvard.edu/insider/member-detail/member/f-stephen-hodi-md/)
Email: Stephen_Hodi@dfci.harvard.edu

When reading their bio's, I realise these are the worlds foremost reputed researchers and pioneers in immunotherapy for Melanoma. MSKCC already responded and listed which information is required to provide this second opinion. I was informed by MSKCC that the opinion and treatment advice costs US$ 2,500.

Keep on hoping for the best, and plan for the worst. Never forget the first part!