My Thyroid Cancer Journey
Now
Daily Life
Take 2.5 tablets of Euthyrox daily
I take it before bed at night to avoid interference from milk or coffee in the morning, which can affect Euthyrox absorption. The most recommended time is 30 minutes before breakfast, but since I have limited breakfast options without milk, I chose to take it at bedtime after considering everything.
After consulting with my doctor, they said it’s okay to eat eggs and dairy in the morning as long as the Euthyrox dosage is adjusted to achieve the desired TSH levels. Since I don’t have a consistent breakfast every day, the doctor said taking it in the morning or at night is both acceptable, as long as I make it a habit and it doesn’t affect my sleep.
I don’t necessarily have to go to the hospital to get Euthyrox. You can buy it at pharmacies—it’s the same. (Of course, make sure to buy the same brand and dosage I’m used to. I take the common 50µg tablets.)
Take calcium supplements
I take Swisse Calcium + Vitamin D Mini Tabs, four tablets per day (I take them around 8 p.m.). I’m supplementing calcium because my parathyroid glands were affected during surgery, which leads to calcium deficiency. Symptoms include numbness in hands and feet.
Daily low-iodine diet
Before undergoing radioactive iodine (I-131) treatment, a low-iodine diet is necessary to avoid affecting iodine uptake and treatment efficacy. I cook for myself using non-iodized salt, non-iodized soy sauce, no MSG (contains salt), no seafood (contains iodine), and no salt-preserved foods.
After being discharged from I-131 treatment, I no longer need to maintain a low-iodine diet. However, I still avoid high-iodine foods like kelp and seaweed for now.
Timeline
- Health check – abnormal ultrasound
- Re-examination at a top-tier hospital
- Re-examination at a cancer hospital – diagnosis confirmed
- Two rounds of hospitalization & surgery – discharged
- Radioactive iodine (I-131) treatment
Expenses
Out-of-pocket refers to the cash I personally paid, excluding what was covered by my medical insurance account (both pooled and personal accounts). (This means the actual money I took from my wallet; any amount deducted from my insurance account is not included.)
Year 2023:
Total expenses: 72,337.39 RMB + I-131 treatment 13,273.26 RMB = 85,610.65 RMB
Out-of-pocket: 5,951.99 RMB + I-131 treatment 2,214 RMB = 8,165.99 RMB
Year 2022:
Total expenses: 4,615.55 RMB
Out-of-pocket: 3,455.55 RMB
Commercial Insurance Reimbursement:
In 2019, I purchased a high-limit medical insurance policy for myself and my family.
The insurance covered inpatient expenses (and any diagnostic expenses incurred within one month before hospitalization, though I only submitted the inpatient invoices).
Reimbursed amount: 19,000 RMB
Hu Hui Bao did not meet the reimbursement threshold: the out-of-pocket amount for a single surgery must exceed 16,000 RMB.
⚠️ Note: Be sure to print the detailed hospitalization invoice when discharged, as it is required when applying for insurance claims.
The claim documents I used included:
- Diagnosis report confirming malignant thyroid tumor
- Detailed medical billing
- Discharge summary
- Hospitalization settlement receipt
- Selected diagnostic reports (CT scan, ultrasound)
I used Microsoft Lens to scan the documents clearly and automatically straighten them. It worked very well.
When was it discovered?
In November 2022, during a free health check organized by my company, I had a neck ultrasound. The doctor recommended I follow up with a hospital for another ultrasound.
Bilateral thyroid symmetrically enlarged. Anteroposterior diameter: left lobe 25.1mm, right lobe 24.4mm, isthmus 12.8mm. Gland shows diffuse, multiple anechoic areas forming a mesh-like pattern. Abundant blood flow. No obvious nodules. Multiple enlarged lymph nodes detected in the left side of the neck, the largest about 46mm × 22mm.
I had also noticed my neck had visibly grown larger, and I could no longer button the top button of my dress shirt. Occasionally, I felt difficulty swallowing, but had no other discomfort.
Important: Detours in My Treatment Journey
After the health check, I went to a nearby top-tier hospital and saw a specialist. I showed the doctor my health check ultrasound report. The doctor immediately diagnosed it as Hashimoto’s thyroiditis. I was uneasy, so the doctor ordered a new ultrasound.
The ultrasound doctor gave a conclusion: possible thyroid cancer, and scheduled me to see a specialist ultrasound doctor for a recheck and fine-needle aspiration (FNA).
Before the FNA results came back, the doctor also arranged a thyroid static scan and thyroid function test.
When the FNA report came out, the result was:
“Right cervical lymph node” FNA smear shows a small number of epithelial-like cells with atypia. Further examination of the thyroid and other areas is recommended.
I booked another outpatient appointment to have the doctor review the FNA report. The doctor said the report was inconclusive and referred me to a hematologist.
The hematologist reviewed it in the afternoon and said it should be looked at by a thyroid specialist instead. They canceled my appointment—nothing gained.
Since the outpatient doctors couldn’t provide clear guidance, I booked a specialist at the same hospital who focused on thyroid cases. The doctor reviewed everything and recommended I go to a cancer hospital to redo the ultrasound and do a CT scan.
The most valuable takeaway from that month of testing: Go to a cancer hospital for further examination.
At the cancer hospital, the doctor asked to see my previous reports. I told them I had already done an FNA. The doctor told me to borrow the FNA slides from the hospital where I did the procedure (a 200 RMB cash deposit was required for the slides, with a receipt provided; the deposit could be refunded after returning the slides). The cancer hospital would then reanalyze them.
The result of that analysis was:
Specimen: (Right cervical lymph node) FNA
Pathological diagnosis: Tumor cells observed (papillary carcinoma).
Diagnosis: Malignant thyroid tumor and secondary malignant tumors in the cervical lymph nodes (bilateral)
Compared to the FNA report from the original hospital
After receiving the final report, I booked a specialist doctor to issue a hospital admission order and began waiting for surgery. I waited 3.5 months (for reasons many people understand).
Based on my experience, I strongly recommend that if an ultrasound report is already somewhat suspicious (TI-RADS level 4 or higher), go directly to a specialized hospital for evaluation (refer to the TI-RADS classification link at the end), so treatment can begin sooner.
Q&A
Q: Is surgery very expensive? How much deposit is required before surgery?
A: Not really. I had two surgeries, and the out-of-pocket cost (including personal medical insurance account) was around 17,000 RMB. With some necessary tests included, 20,000 RMB was enough. I paid a 2,500 RMB deposit before the surgery. If you have commercial insurance, there’s even less to worry about.
Q: What about critical illness insurance? Chronic disease policy?
A: For critical illness insurance, you need to bind it to your hospital of treatment. The hospital must issue a certificate, and then you go to the Human Resources and Social Security Bureau with your medical insurance card (or social security card — a physical card is required, as the chip needs to be scanned at the service window) to link your critical illness coverage. After it’s linked, part of the out-of-pocket costs can be reimbursed.
As for chronic disease policy, I don’t think there is one in Shanghai (or at least I’m not aware of it).
If you don’t have a medical insurance card, you can get one on the spot at the medical insurance center (note: this card becomes invalid after you apply for a social security card). For a social security card, go to the social security center, take a photo, choose your preferred bank, and after processing, the staff will inform you that the physical card will be mailed within a month (registered mail). I received mine in about 2 weeks.
Q: Does hospitalization and surgery require a caregiver?
A: Yes, you’ll need help for the first day or two after surgery when you can’t care for yourself.
Q: Is the surgery under general anesthesia? Will it hurt afterward?
A: Yes, it’s general anesthesia. Once I was wheeled into the operating room, the anesthesiologist said anesthesia was starting. I counted silently: 1, 2, 3… and I was out.
There was no pain upon waking, and I didn’t feel any pain during the hospital stay or after being discharged.
Q: Does suture removal hurt?
A: Not at all. There’s no real sensation. The nurse will cut one end of the stitches and pull them out, then disinfect the area with iodine — that’s it. After removal, you need to keep the wound clean and dry. You can go to a community clinic every 3 days for dressing changes. You can also ask the nurse whether another dressing change is needed. If not, you’ll usually be able to get the wound wet and shower after about a week. During this time, the scab will naturally fall off.
Q: Does thyroid removal affect your mood?
A: For me, no noticeable mood changes. I actually felt more anxious before the surgery. After the second surgery, I even felt more cheerful.
Q: Does neck surgery affect your voice?
A: I had nerve monitoring during both surgeries. I felt almost no change in my voice and no noticeable damage.
Q: How long is the hospital stay after surgery?
A: About a week. The length depends on the drainage tube’s output. My doctor said you can be discharged when drainage is less than 10ml/day.
Q: How long after surgery can you get out of bed?
A: For my first surgery (thyroidectomy and unilateral lymph node dissection), I got out of bed 2 days after surgery (including the surgery day).
For the second surgery (other side lymph node dissection), I could get out of bed after about 24 hours.
Q: How long after surgery can you sleep on your side?
A: Based on my timeline, I started sleeping on my side around 10 days after discharge. I was afraid the wound would tear (maybe I was overthinking, but better safe than sorry).
Q: Has the swallowing discomfort improved? Can you button your shirt now?
A: After two surgeries, I no longer feel any pressure or obstruction when swallowing. My neck is visibly smaller, and I can button my shirt properly again. Also, my snoring caused by neck compression at night is gone.
Q: Does Euthyrox have side effects?
A: Although Euthyrox is a hormone medication, it’s essentially thyroid hormone — replacing the hormone that would have been produced by your removed thyroid. I haven’t experienced any side effects.
Q: Can I get a tax deduction for medical expenses?
A: Currently, the policy allows tax deductions for the portion of annual medical expenses exceeding 50,000 RMB. Since this is 2023, I need to use the National Healthcare Service Platform app in 2024 to check my total medical spending for 2023, export the data, and fill it into the Individual Income Tax deduction section to find out how much tax can be refunded.
Appendix: Thyroid Cancer Treatment Guidelines
This guideline was issued by the National Health Commission and is very detailed.
It also includes a thorough explanation of the TI-RADS classification found in thyroid nodule ultrasound reports.
Radioactive Iodine (I-131) Therapy
Following the second surgery and based on my doctor’s advice, I scheduled I-131 treatment with Dr. Lu Hankui at Shanghai Sixth People’s Hospital. I was hospitalized on October 30 for the treatment.
I’m currently continuing a low-iodine diet. Here are the food lists I referred to:
Cost
A 5,000 RMB deposit was paid upon hospital admission. Any excess was refunded upon discharge.
My total expenses: 13,273.26 RMB
Covered by medical insurance: 11,059.32 RMB
Refunded deposit: 2,786 RMB
So I paid 2,214 RMB in cash.
I submitted the insurance claim right after returning home in the afternoon, and the reimbursement arrived by 8 PM that night — so fast!
Closing Remarks
I hope everyone stays healthy. If any illness is discovered, please seek treatment proactively. It’s completely normal to experience some negative emotions during the process — just remember to love yourself.