Hello, my name is William. I’m from a small city called Hickory in North Carolina. However, I’m currently in Taiwan for treatment of a rare cancer known as Olfactory Neuroblastoma at Grade 2. I will have an endoscopic surgery scheduled for May 25th to remove the malignant tumor from within my left nose cavity. After that, I’ll stay in Taiwan for at least another month to recover and then follow up with the doctors to see how it is.
I can afford the surgery, but what I need help with is the photon therapy as that’ll cost about 1,700,000 Taiwan dollars (roughly $56,500 USD). I don’t think that goal is reachable, but whatever amount I can get will help me get closer to it. Below is a detailed account of my experiences that led me to where I am now. Thank you very much for your time and even if you can’t donate, it’s ok. I know COVID-19 is making it tough for everyone. If anything, I hope others can learn or benefit from my medical experience in Taiwan.
October 2019 - December 2019, China
I was invited to Zhengzhou in China to visit a friend and her family. It was a great experience and seeing a non first tier city. Through the grace and kindness of her family, they helped provided accommodations to help keep my expenses down. My only major expense was the flight tickets which was quite cheap.
I went to Kaifeng city which use to be one of Ancient China's Capital during the Song Dynasty. Got to watch a live action performance with explosions!
Unfortunately, after a few days there, I started feeling sick everyday and exhibiting symptoms of a runny nose. During the winter, the air pollution is at its worse due to the clouds being lower or something to that nature. I brushed off my concerns and just wrote it off as probably a natural reaction due to the bad air pollution and continued staying there for 6 weeks total. It was a good experience that would come back to haunt me haha.
December 2019 - March 2020, Japan
I returned to Japan and was hoping the runny nose would eventually subside and go away. I usually felt quite good and comfortably in Japan thanks to the clean air. As I had been to China earlier in 2019 and upon returning to Japan, felt much better. A month past by, no improvements. Daily greenish to yellow discharge from my left nose cavity throughout the day so I had to blow my nose various times throughout the day. At night, occasionally a clear watery discharge. On slightly rarer occasions, I would bleed from my left nose cavity which never occurred before. Two more months pass by with no signs of improvements. At this point, I knew something was wrong. My gut instincts told me I was dying. I had something serious.
March 2020, Taiwan
I originally planned to go to Shanghai, but COVID-19 ruined that plan. South Korea was my next choice, but they had a breakout of infections so I scrambled that plan too. I then concluded that Taiwan was my next best choice. Actually, this is the best choice considering how Taiwan has one of the best medical systems for people who don't have health insurance and their infection numbers were still incredibly low. So, I flew into Taiwan on March 15th.
My symptoms didn't improve. In fact, it got worse. My left nose cavity became quite obstructed and I had to use more force to even blow my left nose cavity. The daily discharge became slightly more frequent. Bleeding was still occurring occasionally.
March 21st, Taichung City
I pulled up google maps and searched for local clinics nearby and then asked a Taiwanese friend to help go with me to a Otorhinolaryngology(Ear, Nose, Neck) Clinic as I couldn't speak enough Taiwanese to do it alone. The Clinic Doctor took a look at my left nose cavity and said it looks like a tumor and that I should get it checked out at a hospital as soon as possible as they don't have the equipment to deal with it further. He then subscribed 3 days worth of antibiotics and charged me 500 TWD (roughly $16.62 USD) for the visit and medicine. No insurance.
That following night, I decided to go to the emergency room at the hospital recommended by the clinic doctor to try and get my tumor checked out. After doing some paperwork and talking to the staff, I was told that because I hadn't finished my 14 days self-quarantine, they won't diagnose me. Instead, they asked if I wanted to get tested for COVID-19. I said sure, but how much? The doctor at the time said it was very cheap or basically free. I ended up getting a chest x-ray and a nose swab. I got my results a few days later and it came back negative. The total cost for an emergency visit plus a weeks worth of medicine and COVID-19 test without insurance? 2,116 TWD (roughly $70.34 USD).
March 30th - April 9th, Taichung City
My 14 days self-quarantine had finally come to an end so I could finally visit the hospital and get a diagnosis. I went in and visited the Otolaryngologist and he suggested that I get a surgical biopsy and CT Scan find out what kind of tumor we are dealing with. I had a gut feeling it was malignant. Fortunately, they had an opening and I could get the surgical biopsy on that same day so I opted for that. It was a little bit painful, but tolerable as they used local anesthesia. It also helped me breathe easier through my left nose cavity by removing the tumor that had grown quite a bit. Unfortunately, the CT Scan had to wait for another week.
Cost for a surgical biopsy? 4,162 TWD (roughly $138.35 USD).
Cost for a CT Scan? 9,426 TWD (roughly $313.33 USD). If you're interested in seeing the CT Scan, attached is a google drive link: CT Scan Results 
According to google, the average cost of a CT Scan in the US is about $3,275 USD.
On April 6th, I did my CT Scan. I briefly talked to the Otolaryngologist about my biopsy and CT Scan results. Unfortunately, my biopsy results hadn't come back in yet as it generally takes up to 2 weeks at most to get the results. However, from what the Otolaryngologist could see from the CT Scan results, it looked like Olfactory Neuroblastoma. A very rare cancer, but without the biopsy report, we can't say for sure how serious it is and if it truly is malignant or benign. This visit costed 827 TWD (roughly $27.49 USD).
On April 9th, I visited the Otolaryngologist again as my results for the biopsy report had come in.
My surgical biopsy report confirmed that my tumor is malignant and that I do have a very rare cancer known as Olfactory Neuroblastoma at Grade 2:
The Otolaryngologist then suggested that I get a wide local excision followed with radiation therapy for about 2 months. I asked him how much it would cost for the surgical procedure and he estimated it to be about $5,000 USD. I then asked him for doctors he could suggest for a 2nd opinion and he kindly wrote down three different hospitals and doctors for me to visit in Taipei as I think it would be better seek medical assistance in the capital.
This visit was slightly cheaper. Yay! Only 613 TWD (roughly $20.38 USD). lol.
I went back to the place I was staying at. I was devastated upon hearing this news. I know my body quite well when something is wrong. I am quite sensitive to it. It's not often that I cry and if I do, it's done privately and alone. I cried a little bit that night.
The next few days, I talked to my direct family and also a few close friends and relatives and slowly begin to reach out to inform them about the situation.
I also thought about my next plan of actions which was to leave Taichung and head to Taipei to get 2nd opinions since didn't like the suggested treatment as it sounded very risky and dangerous. Keep in mind, I'm alone here in Taiwan without any close friends, family, or relatives. COVID-19 is starting to run rampant in the states. March 18th, Taiwan had shutdown the border disallowing foreigners to visit. To this date that I'm writing on May 23rd, the border is still closed.
April 15th, Taipei City
I decided to visit the famous National Taiwan University Hospital. It was there that I met with Dr. Te-Huei Yeh to get a 2nd opinion from him. He suggested that I get an MRI as it's a soft tissue malignant tumor and that CT Scans do a poor job at showing how big the tumor exactly is. He scheduled the MRI and I looked at the costs and date. My jaw dropped when I laid my eyes on a price of roughly 38,000 TWD to get an MRI Scan and that the next available MRI appointment wasn't available until July! The Doctor was also surprised and so we decided to cancel doing the MRI at this hospital. We concluded that it would be better to get an MRI at a different hospital, then come back to him with the results.
I got my bill for visiting this hospital. It came up to a big 2,834 TWD! (roughly $94.21 USD). I was quite surprised at this as up to this point, this had been my most expensive doctor visit in Taiwan. I started thinking to myself, maybe I should've stayed in Taichung...
I came to find out that the reason why the cost was so high at this public hospital was because of the processing fee to upload the CT Film and Report into their system. There's a fee of 2265 TWD (roughly $75.29 USD) to do so. I grumbled a little bit to myself, but just sucked it in and paid up.
That following day towards the afternoon or perhaps it was the day after? I can't recall, but I got a phone call from that hospital and the lady on the phone told me to come back to the hospital because they wanted to refund me for the processing fee of uploading the CT Film and Report. I asked her why? She simply smiled and replied "Taiwan Government is Good." lol
So, I hurried back to the hospital and got back the 2265 TWD that I paid! My bill then actually just came out to really be 569 TWD (roughly $18.91 USD)! The cheapest it has ever been up to this point! I take back what I said about coming to Taipei.
It's not easy trying to navigate the hospitals in Taiwan if you can't speak Chinese. My Taiwanese friends were quite busy and I didn't want to bother them. I have to say, majority of the time, I was navigating and doing this all solo. My advice? If you can't speak mandarin, 100% bring a Taiwanese with you for at least the first visit so they can help you register and navigate. After that, it is possible and much easier to solo it as the doctors usually can speak some English while nurses and staff may or may not be able to. Hospitals in Taiwan also usually have an international department to service foreigners, but there's a big charge in fees for that. A [phone redacted] TWD visit can end up being 2000+ TWD per visit instead when using the international services.
I spent the next few weeks visiting two other hospitals and different doctors to continue seeking the best treatment options available. Linkou Chang Gung Memorial hospital and Taipei Veterans General Hospital were the two that I visited.
I visited a Dr. Kang (康仲然) at Linkou Chang Gung. It was here and him that set me up to do an MRI Scan. The cost for an MRI here? 20,144 TWD (roughly $669.61 USD). A lot better of a price and I was lucky enough to be able to squeeze in and get the MRI done the same day I visited on April 23rd.
I got my results a few days later and went back on April 30th to discuss the results with Dr. Kang. He told me that perhaps we can just do a non-invasive surgery. Remove only the tumor from within your nose cavity without digging into my brain because the tumor is still small compared to previous cases. I was quite relieved and excited by this news. I agreed with him and then he scheduled me to visit the endoscopic surgeon expert at a different branch, but same hospital.
Here's a link to the MRI Scan results if you want to download and view it yourself: MRI Scan Results
On May 6th, I went to Taipei Chang Gung Memorial Hospital to visit the Endoscopic Expert, Dr. Chang (張伯宏). To my surprise, what Dr. Chang told me varied drastically from what Dr. Kang told me. Dr. Chang firmly told me at that time that I need to do an anterior skull base surgery where a neurosurgeon will work with him to remove not only the tumor within my nose, but also remove the thin bone between my nose and brain to remove the Olfactory Bulb where the cancer stems from. It’ll be a 10 hour surgery with risks such as potentially losing lots of blood or meningitis! I’ll also lose my sense of smell forever if this bulb is removed. However, there won’t be any need for radiation therapy. It was just a too simple and risky method of dealing with this cancer. I was stunned and frustrated at this as it wasn’t what Dr. Kang discussed me with. Furthermore, it’ll cost up to 500,000 TWD (roughly $16,600 USD) for this surgery.
I thanked Dr. Chang, told him that I’ll think about it, and left. Paid 1100 TWD for this appointment.
Devastated and angered, I decided to try Taipei Veterans General Hospital. A public hospital. I scheduled an appointment with Doctor Lan (藍敏瑛). She basically said the same thing as Dr. Chang and refused to just do an endoscopic surgery to remove only the malignant tumor from my nose. To make matters worse, when I say the bill...
I was flabbergasted upon seeing 5569 TWD (roughly $185.12 USD) due. I walked away feeling anxious and headed towards the elevator. I kept wondering why was it so expensive?! I knew it was going to be at least 2,000 TWD because they told me government funding for public hospitals had been cut so foreigners have to pay much more, but 5,000 plus?! I know, perhaps I’m being ungrateful when compared to what it’ll cost in the USA and the fact it only took a week to see the doctor. I went back and questioned them why it costed so much. They said it was because of the tests they did on me such as a nose swab, taking pictures of my left nose cavity, and antibiotics. I then politely told them to please cancel the appointment with the neurosurgeon because I can't afford this and thanked them once more.
As I was waiting for the elevator to leave, one of the nurses ran up to me and told me to come back. I was a little bit confused as to why. They then told me to wait a moment because they're going to choose the cheaper options to try and lower the bill. I was left speechless and touched.
The new bill came up at 4393 TWD (roughly $146.03 USD). Still really high compared to my previous experiences at the private hospitals, but I'm truly grateful and will take whatever discount I can get as I'm not rolling in dough. Their kindness and compassion will not be forgotten.
At this point, I was really down and depressed. I felt defeated. My mood was dark. I don't want to spend the rest of my life worrying about this cancer. I want to live day to day and continue following my dreams until my last breath. I don't want this to stand in my way of life. I started going for a bike every evening along the river near the hostel I stayed. I would bike for an hour to 2 hours every evening as long as the air wasn't too polluted and that it wasn't raining. It brought a lot of serenity and calmness to my soul. I felt alone, but I know I wasn't alone. It was nice to see how the locals enjoyed the park. It was nice to see that there wasn't a lock down or stay at home order. Taiwan was doing something right. I've come to admire and think they've earned it.
Fortunately, the hostel I stayed at treated me really well as if I was a family member. Special shout out to Mandy, Macy, and Alan the owners and staff at Plainstay Hostel in Taipei. They suggested Dr. Te-Huei Yeh who I saw a few weeks ago on April 15th. It was May 8th. I made an appointment to go to see Dr. Te-Huei Yeh on May 19th as that was the earliest available appointment. I had 11 days before I could see him.
I then thought to myself, I should go see Dr. Kang because he has some explaining to do as to why the doctor he suggested said something completely more dangerous than what he suggested. I was angry, but determined to get answers. I scheduled a morning appointment with Dr. Kang for May 13th. Got there around around 10 AM, waited until 1 PM to finally see him. After 3 hours of waiting, I walked in and said "Hey Dr. Kang!", he replied to me "Why (are) you here?", "well, I went to see Dr. Chang and he refused to do the surgery we talked about."
Dr. Kang then explained a little bit more about the surgical procedure that Dr. Chang suggested and then asked if I wanted Dr. Kang to discuss to call and talk with Dr. Chang about this. I replied to him "yes, please do."
"Come back on Thursday, no need to pay." Well then! If I don't need to pay 1100 TWD after seeing Dr. Kang then I ain't gonna complain! haha! So, May 15th rolls around and I go back to see Dr. Kang. He informs me that Dr. Chang has agreed to just do an endoscopic surgery to only remove the malignant tumor from within my left nose cavity and then from there, we can wait a month and see if more is needed to be done. It's better to take smaller steps and just observe and do as needed instead of overreaching and performing a huge surgery when the tumor is still small compared to other cases. No need to pay 1100 TWD again! I was quite pleased by this time at the generosity of Dr. Kang for not charging me for seeing him each time. He then scheduled me to see Dr. Chang on May 18th to discuss the surgery in details.
May 18th, 2020. I visit Dr. Chang in the morning and he asked me again if I am sure that this is the surgery I want. I confirmed with him that it was what I wanted as this surgery doesn't require family to be here. The 10 hour surgery requires a family or relative member to sign the paperwork before they can do the surgery. It just wasn't plausible when foreign travelers are still banned from entering Taiwan. 2100 TWD (roughly $69.81 USD) was due after seeing Dr. Chang and scheduling to have my surgery on May 25th.
This surgery, including staying at the hospital, will cost between 100,000 to 120,000 TWD (at most, $4,000 USD).
Well, if you've made it this far, you sure have a lot of free time. Just kidding. haha, thank for taking time to listen to my prologue. We still haven't even reached the story yet and still got the epilogue too!
Long story short, I put $58,200 (cause the 2.9% + 0.30 cents fee) as the goal because I saw an oncologist and spoke about the radiation therapy options. The cheaper one costed 600,000 TWD (roughly $20,000 USD) and will damage my eye sight. I'll basically get cataract and my eye sight will become blurry. Eyeballs and brain should be spared, but who knows, there might be other side effects. The other option is photon therapy which is crazy expensive at 1,700,000 TWD (roughly $56,500 USD), but little to no risk as it's a lot more accurate so the damage to healthy cells will be a lot less compared to other conventional radiation therapy methods. Well, I still wanna keep my eyes good so I'm on here asking for donations haha. I know it's very unlikely I'll reach that goal, but whatever I can get will help me get closer to it.
Again, thank you very much for listening to my rare cancer medical journey in Taiwan. I've been very hesitant to ask for assistance because COVID-19 has made it financially tough for everyone, but I decided do this because in hopes that it can help shed some light how broken our USA medical system is for those that are uninsured or under insured. I also hope that it acts as a guide for those seeking healthcare in Taiwan or end up in a similar situation. Last, but not least, it's ok if you can't donate. Thoughts, love, support, and prayers are good enough too.
TL;DR: In Taiwan for very rare nose cancer called Olfactory Neuroblastoma at Grade 2. Need about $58,200 USD for photon radiation therapy. Thanks!