True story: I was misdiagnosed with a rare cancer
This is a doozy, here we go!
▶️ HOW IT BEGAN
In 2018, I noticed there was a lump in my neck. I had sort of felt it there in the months before, but that year was when I kept touching my neck and wondering if it was in my head. Friends & family didn’t notice anything different. Finally, in the fall, I asked my OBGYN during my checkup if I had a lump. I did. She immediately scheduled me to see an endocrinologist.
❓IT’S… INCONCLUSIVE?
My endo suspected Hashimoto’s but all my bloodwork was normal. However, I had all the symptoms. Extreme weight gain in the last couple years, fatigue, etc. He wasn’t concerned, but did biopsy. It came back inconclusive. Did another, also inconclusive. My lump was suspected to be probably a goiter or a benign tumor, but as it was 3 inches big and pressing on my thyroid, it had to go. And off I went to see a surgeon.
🚫 REMOVAL & THYROID CANCER DIAGNOSIS
This is my favorite part: as I was discussing with the surgeon my options, he said I was most likely going to be 99% of similar cases where it’s totally benign. And said there was always that 1% that would be a rare cancer. I joked that with my luck, I would be that 1%. I definitely jinxed myself 😩
We agreed to do a lobectomy (only remove the half of the thyroid with the tumor on it) and only remove the entire thyroid if cancer was found during surgery. I came out with only half removed, and a confident doctor saying everything looked good in my neck and would follow up after sending the slides to the lab
A week or so later, I got the dreaded phone call: I had papillary carcinoma… the solid variant. A very rare form of it, previously documented in Chernobyl patients.
1️⃣➡️2️⃣➡️3️⃣ GETTING MULTIPLE OPINIONS
My surgeon wanted to kill it with fire. He said to remove the rest of my thyroid and get radiation (thyroid cancer’s version of chemotherapy). I put the brakes on. It seemed too sudden, too soon. I wanted other opinions.
My work at the time offered a benefit where you could get a 2nd medical opinion for free. I sent off my results and slides to a reputable hospital. They came back with an entire hundred page document basically saying “this is weird af because you don’t match most criteria demographically for this rare variant but your labs are very weird so we’re gonna say kill it with fire.” I am probably a fun case study for them now.
I did so much research. I knew losing my thyroid and getting radiation would have serious effects on me for life. I decided to get a third opinion: from MD Anderson Cancer Center, regarded as the top cancer hospital in the world who had seen my variant. They accepted me as a patient.
❗️”WE WOULD HAVE NEVER CALLED IT CANCER”
MD was amazing every step of the way. They had an entire panel of experts review my case and my slides. They came back to me and said, “Look, the way the tumor presented was very odd, but it was contained. There was no metastasis. You’re otherwise healthy and the cancer treatment would have been detrimental to your health. They were wrong to diagnose you with cancer; we would have classified it as pre-cancerous.”
They recommended to do nothing. The threat was gone, all my bloodwork continued to remain normal, and my thyroid ultrasound came back clean. “Let’s watch and wait. Come back next year.” And so I did. I immediately trusted them the most. I chose to wait.
❇️ TODAY
I fly to Texas once a year now for my annual check-up. 6 years later, I’m still cancer-free. By watching and waiting, I was able to keep my remaining thyroid half which did an incredible job picking up the slack. I have never needed thyroid medication and my bloodwork continues to be free of abnormal thyroid markers.
This year, they did raise that a couple of my thyroid nodules have been slowly growing, and if that continues to be the case, they will biopsy them next year. I will cross that bridge when I get there.
✅ TAKEAWAY
You know your body best. Trust your gut. I knew something was off with my neck. I knew I wasn’t satisfied with the answers from the first two hospitals. I am so thankful for MD Anderson’s patience and utmost professionalism throughout this journey. They saved me from essentially destroying my health with no thyroid and radiation at 26 years old.
If the cancer does appear, it won’t be a surprise. I will be ready for it, happily knowing I gave myself more time with a normal life and a hard-working half thyroid. 🩷
Thyroid cancer diagnosis can sometimes be complex, especially with rare variants like papillary carcinoma solid variant, which has been previously documented in unique cases, such as Chernobyl survivors. This form of thyroid cancer is uncommon and can be mistaken for other benign conditions such as goiters or benign tumors, especially when initial biopsies are inconclusive. Misdiagnosis can lead to aggressive treatments including total thyroidectomy and radioactive iodine therapy, which carry lifelong consequences such as dependence on thyroid hormone replacement and potential side effects from radiation. In cases of rare thyroid cancer variants, seeking multiple medical opinions—especially from specialized cancer centers like MD Anderson Cancer Center—is crucial. Experienced multidisciplinary panels can reassess biopsy slides and integrate clinical findings to reclassify tumors, sometimes shifting the diagnosis from cancer to precancerous condition. This holistic evaluation helps to avoid overtreatment and prioritize patient quality of life, particularly in young adults. The "watch and wait" approach is recognized in certain low-risk thyroid cancer cases, where close monitoring through annual ultrasounds and blood tests ensures early detection of any progression while sparing patients from invasive interventions. Maintaining partial thyroid function preserves natural hormone balance and reduces the need for lifelong medication. Patients experiencing symptoms such as neck lumps, fatigue, or unexplained weight changes should advocate for themselves by requesting thorough evaluations and not hesitate to seek second or third opinions. Understanding the subtleties of thyroid disease and cancer variants empowers patients to make informed decisions aligned with their long-term health goals. This story highlights the importance of patient awareness, the value of specialized expertise in rare cancers, and the benefits of individualized treatment plans in thyroid cancer management.
it is really good to trust your gut . Getting another opinion is not a bad thing, though you might spend extra change, but it does save unnecessary stress. Radiation could even cause another problem by killing healthy tissue . You really did well checking out with the third consultation .I would never have thought of thar .Thanks for sharing 🥰