Diagnosis & Plan
Summary
I’ve been diagnosed with stage 2 nasopharyngeal cancer (NPC). I started concurrent radiation and chemotherapy earlier this week (29 May, Tue after Memorial Day). This first phase of treatment will last 7 weeks (through late July). The prognosis is excellent - the doctors note a 90%+ success rate - as this is a highly treatable cancer. I was fortunate to catch the cancer early - it’s localized and hasn’t spread to my neck, chest, lymph nodes, or bones. The cancer is located in my head - between my nose and throat.
With respect to the treatment, I’ll have radiation 5x/week with each session lasting <10 minutes. They’ve made a mask of perforated plastic to hold me in place. It’s sort of a like a being a savasana, except with a big radiation machine moving around you. I don’t feel anything during the radiation treatment. The chemotherapy is used to make the radiation work better. They placed a port near my right collarbone to deliver the drugs (Cisplatin at a moderate dosage - 40mg/m2). The plan is to get this 1x/week (Tue), with each session lasting at least an hour.
Throughout the course of the treatment, I’ll likely experience some side effects. These include nausea, vomiting, fatigue, weight loss, loss of smell, loss of taste, skin sensitivity and others. The effects will be cumulative, so I should be fine for the next week or so, after which it’ll get more challenging. My aim is to maintain or possibly even gain weight. Unfortunately, given where the cancer is located, it seems like I’ll have some degree of permanent taste loss. The care team at Northwestern Medicine will monitor me closely, and the nurse mentioned that they could prescribe various drugs to minimize the impact of these side effects.
The only restriction on my diet is not to eat raw/undercooked foods. Thus, I’ve had my fill of sushi, sous vide eggs, and steaks (they must be ordered well-done, so what’s the point?). Because they expect it’ll be harder to swallow, they recommend avoiding spicy foods, acidic foods, and crunchy items (like toast, chips, nuts, etc.) that could irritate my throat. Alcohol falls into that category as well. They encourage a high calorie, high protein diet, so there will likely be a lot of milkshakes in my future. Good thing I have a good inventory of ice creams already at hand.
My plan is to try to maintain a normal activity schedule. However, I’ll have to stay out of the sun during treatment, and I’ll have to be careful of rigorous activity. Thus, biking, paddleboarding, and traveling will have to wait this summer. I’ll just have to see what I’m feeling. Right now, things are pretty normal, so I hope it continues that way for the duration.
Background
The cancer was diagnosed on 25 April. I had gone in to see an ENT about some hearing issues in my right ear. My ear had felt plugged (like when pressure doesn’t equalize after a flight) earlier in the year and then started to have some ringing. The doctor found that there was fluid behind my eardrum that wasn’t draining properly. I thought a quick procedure was all that would be needed to get my hearing back to normal. It turns out that the Eustachian tube was blocked by an abnormal growth. This was the mass that was biopsied and turned out cancerous. The tumor was 3.4cm. I read that many people who have this type form of cancer don’t realize it until it reaches the lymph nodes in the neck, so I’m fortunate that it was caught earlier than typical.
After getting the initial results, I underwent a series of scans - CT neck, CT chest, PET. These came back negative, so the cancer hadn’t spread. The ENT initially thought I’d be stage 1, but there was cancer in the Rouviere lymph node right next to the growth, so they’re calling it stage 2.
NPC is a form of cancer that is quite rare in North America, but much more common to people in Asia, particularly southern China and southeast Asia (including Singapore). There are a lot of studies out of Asia that show strong results from various treatment plans (less aggressive than in the US).
Treatment
Following the initial 7 week phase, I’ll get a test to see if there is still the Epstein-Barr virus (EBV) in my blood. This is one of the markers they’ll use to monitor my status. According to a world expert (who happens to be the uncle of a close friend), my EBV level is considered low risk.
Assuming no EBV is found in my blood, the next phase of treatment will be randomized based on a clinical trial - either monitoring (no more drugs) or standard of care. The US standard of care calls for an additional 3 cycles of chemotherapy. In Asia, the additional chemo cycles are not required. Hopefully if all goes well, I’ll get the monitoring outcome.
If you’ve read this far, thank you. I’m not sure about the best way to communicate any status updates in the future. Let me know if you’re interested in hearing more. Feel free to share with others.
I really do appreciate all the support you’ve provided so far. I’m quite positive and optimistic that things will go well, and I’ll be back to normal in a few weeks/months. Nearly a week down, 6 more to go. It has given me an excuse to eat and drink well over the past few weeks.