I travelled to Tampa, Florida area in June to have thyroid cancer surgery by Dr. Gary Clayman and his surgical team (Dr. Rashmi Roy and Dr. Nate Walsh) for what I now know to be persistent metastatic thyroid cancer. Dr. Clayman and his team came highly recommended by my thyroid specialist. They do over 600 thyroid cancer surgeries per year, so they are quite possibly the most experienced thyroid cancer surgeons in the United States, if not the world. I was in good hands.
We booked a room at a newish little hotel not far from the hospital where I would have my evaluation and surgery. I went in on Monday for my evaluation which included two sonograms, blood work, a laryngoscopy, a CT scan with contrast, and then a meeting with one of the surgeons. Everyone was great and I was in and out in less than 3 hours. I was given a surgical scrub and told to shower with it that night and again the next morning before the surgery.
I had to be back at the hospital at 5:30 AM the next day for my surgery. The next couple hours leading up to my surgery are a blur. Lots of medical professionals in and out of my room. Finally, the nurse anesthesiologist came in and injected something into my IV, everyone looked at me and we all laughed as I was wheeled off to the OR. The next thing I knew I was in my recovery room after the surgery.
The surgery ended up being more extensive than expected. Originally the surgery was expected to last about 45 minutes, but ended up being over an hour and a half. When they opened up my neck, they found lots of residual thyroid tissue in my thyroid bed, weaving around my vocal cords and nerves. My surgical team did what was basically a completion thyroidectomy and scraped all the cancerous thyroid tissue out of my thyroid bed and off my vocal cords and nerves. They also performed a modified radical right neck dissection. They removed 58 lymph nodes and 2 “primitive” muscles. I stayed in the hospital overnight and was sent back to the hotel the next morning. I was asked to stay in the area for 2 to 3 days, just in case there were complications.
A nurse called me the next day to read the pathology report to me. Only 2 of the 58 lymph nodes were malignant. The residual thyroid tissue removed was also malignant. The surgeons declared the surgery to be “curative”
A lot has gone on since the last time I posted an update in July of 2020. I had another alcohol ablation. I also had a multitude of doctor visits, sonograms, labwork, and scans. The alcohol ablation procedures succeeded in reducing 2 of my 3 malignant lymph nodes. The third malignant lymph node is located far back in the thyroid bed behind the carotid artery and not a candidate for alcohol ablation. We have been watching it and waiting for it to get big enough for surgery. Since November of 2020 it has had a growth spurt and now it’s time to get it out of my neck.
I’m traveling to Tampa, Florida on Saturday to be a patient of the Clayman Thyroid Center. I will be having thyroid cancer surgery next Tuesday to remove the 3 malignant lymph nodes in my neck and to have my neck cleaned out, so to speak. I will be under the care of three of the best thyroid cancer surgeons in the world. I’ll be in good hands. I’m nervous, scared, excited, etc., but am hopeful that I will finally be cancer free after this surgery.
I traveled to Charleston for an alcohol ablation procedure, also known as an ultrasound-guided percutaneous ethanol injection (PEI), appointment with a Thyroid Specialist. The doctor was awesome! She did a sonogram to look at the 4 nodules in my neck. Only one, the .8 cm one that had a positive for papillary thyroid cancer biopsy result, qualified for alcohol ablation. The one right next to it is too small for the procedure. She will watch it and ablate it when it gets big enough. Those two nodules are right behind the carotid artery. She agreed with the endocrinologist that the most recently found nodule found didn’t appear to have characteristics to indicate it was cancerous. She will keep an eye on it, but didn’t feel it needed to be ablated. She said it appears the the cystic nodule (that had a negative biopsy result) has a solid component. She thinks it’s probably malignant. She said it shouldn’t be there, it’s not a candidate for alcohol ablation, and needs to be surgically removed. It is also near the carotid artery and nerves and would require a very skilled thyroid surgeon. She said she would send me to Tampa to see one of the top thyroid surgeons in the country. She would have him do the surgery and clean up the rest of my neck in the process. In the meantime, she wants me to have a PET scan to check for distant metastasis. She will call my oncologist to get him to schedule the scan. It was a lot to take in. I was hopeful that I could have them all ablated and be done. It’s more complicated and appears that surgery is indeed in my future.
The alcohol ablation procedure was quick and painless. Much like a biopsy, the thyroid specialist used the sonogram image as a guide. She numbed my neck with a local anesthetic, inserted the needle into the targeted nodule, and injected a tiny amount of medical-grade ethyl alcohol into the nodule. A few minutes later she used the sonogram machine to check the nodule for blood flow. It had already been greatly reduced. That was it. The process took less than 15 minutes! I will go back in September to check to see how successful the treatment was. She is hoping to see about an 80% reduction in the nodule and a decrease in my thyroglobulin levels. Another injection might be needed at that time. My neck was a little sore and stiff for two days, nothing a little Tylenol didn’t knock out.
I had my follow-up sonogram about a week and a half ago. My endocrinologist confirmed a second lymph node right next to the one that the biopsy confirmed was malignant. She thinks it is also malignant. She also found another nodule, but doesn’t think it has characteristics to indicate it is cancer. The good news is that the malignant node has not grown since January. She checked on the cyst she found in January and it has gotten smaller (probably because the doctor that did the biopsy removed fluid from it – it tested negative for cancer).
We discussed me getting a second opinion at Mayo Clinic. She would prefer that I go to the one in Rochester, MN, but knows that it would be easier for me to get to Jacksonville, FL. She said they might be able to do an alcohol ablation. I told her that I was glad she brought it up because I was going to ask her about it. I told her that I knew of a doctor at a new thyroid-only practice in Charleston that performed alcohol ablation. She had no idea that someone did the procedure in state. She asked a colleague if he knew of the doctor and he replied that her office had sent over materials about the practice but he had never looked at it. So, we decided that I would go to Charleston (only 2 hours from my house) for the alcohol ablation. We will hold out on Mayo Clinic for now.
My doctor referred me to the thyroid-specific endocrinologist in Charleston for alcohol ablation. Someone from her office called today to set up an appointment. The doctor is booked into October, but they just had a cancellation for July 22nd. I took it. I am so glad that I will be going for alcohol ablation in two weeks instead of 3+ months. I’m so happy things are falling into place.
I am a little obsessed with Everything Bagel Seasoning. I sprinkle it on a plain bagel with plain cream cheese. It’s also pretty rad on avocado toast. I typically use the Trader Joe’s Everything Bagel Seasoning, but it contains sea salt and is not acceptable for a low iodine diet. I just happened to have all the ingredients to make a LID-safe batch.
1 tablespoon poppy seeds
1 tablespoon sesame seeds
1 tablespoon black sesame seeds (I got them from www.penzeys.com)
1 tablespoon dried minced garlic
1 tablespoon dried minced onion
1 teaspoon non-iodized kosher salt
Combine the poppy seeds, sesame seeds, black sesame seeds, dried minced garlic, dried minced onion, and non-iodized kosher salt. Store in a sealed container.
The hospital had not called to schedule the scan week yet, so I called them. They had no orders for me. I called my doctor’s office and left a message. A few hours later I get a call from a nurse saying that I was scheduled for the week of the 16th. I told her that the doctor had told me that it would be the week of the 9th. She said that since I would not have been on the low iodine diet for a full 10 days, the doctor decided to move it to the next week. I told her the doctor told me to start the diet on that Sunday and that I had already been on the diet 6 days. She said that would have only been 9 days. So I have been on the diet for 6 days that I didn’t need to be on it. I felt like my head was going to explode! I was admittedly hangry because I had to work late and had not had lunch. It’s not like I can just go pick up something to eat real quick.
My scan is scheduled for Friday, March 20th. I will go in on Monday, March 16th for the first Thyrogen shot, get another the next day, and then get a small dose of radioactive iodine on Wednesday, March 18th. I am scheduled to go directly to my doctor’s office with the disc right after the scan. I hope I get results then. Thyroid cancer is bullshit!
Things have changed so much since the first time I did LID in 2014. There are so many more LID-safe dairy alternatives that actually taste good available on the market. Many of the dairy alternatives still contain sea salt or seaweed products (carrageenan), so you really have to be careful and always read ingredient lists.
Here are some of the new products I have discovered this time around:
Elmhurst Milked Cashews – This stuff is delicious! It’s great on oatmeal. It is also really good in coffee, adding the essential creaminess that the other creamer alternatives just don’t provide. There are two types of Elmhurst Milked Cashews….an unsweetened variety and a “Barrista approved” variety. Get the second one if you want to use it in coffee. The company does not use iodized salt in the products that contain salt and they do not use carrageenan. There are several other types of Elmhurst products and you can order from their website. The only downside is that the products are a bit pricey. I paid $6 for a quart-size container at Publix.
Kite Hill Almond Milk Cream Cheese Style Spread – This vegan cream cheese option is perfect for smearing on LID-safe bagels for a quick breakfast. They have several different flavors and are priced similarly to other cream cheese products.
So Delicious Dairy Free Coconutmilk Yogurt Alternative – I was surprised at how good this yogurt is. The Key Lime flavor is sublime. There are a bunch of different flavors and it’s widely available. I found it in Publix and in Target. It cost about $1.25 per container, so it’s on par with other yogurts.
Ben & Jerry’s Non-Diary Frozen Dessert – Chocolate Fudge Brownie – I picked this up when it was on sale (BOGO) at Publix. It’s fine. It’s not so good that the rest of the family eats it, but it’s nice for a few bites as a treat here and there. There are other flavors available.
Coffee Mate Natural Bliss Coconut Milk Creamer – I thought I had finally found the perfect dairy-free, LID-safe coffee creamer. It tasted fine on it’s own, but I don’t like the way it tastes in coffee. It may just be me. I don’t like coconut and coffee together. This brand has other types of non-dairy creamers. The almond milk varieties contain sea salt and are not appropriate for LID. It looks like there is a cashew variety and an oat variety that are suitable for LID. I found this particular creamer alternative at Publix for just under $4.
Recipes for Broccoli Salad often feature lots of mayonnaise. Although there are some LID-safe mayonnaises on the market, I am not a mayo fan. The slightly sweet vegan, LID-safe dressing in this recipe is a perfect replacement for a mayonnaise-based dressing. Not only is it lower in calories, it also doesn’t mask the flavors of the fresh ingredients. This salad is not drowning in dressing. You could double the dressing recipe if you would like a bigger dressing to salad ratio.
Broccoli and Apple Salad (LID)
1 large bunch of broccoli (about 2 big stalks), washed, and cut into bite-size florets (save the stalk for something else)
1 large apple (I prefer Fuji or Honeycrisp), cored and chopped
1/4 cup Craisins (dried cranberries)
1/4 cup unsalted sliced almonds (or pecans, walnuts, or sunflower seeds)
Dressing
1 tablespoon Dijon or brown mustard (French’s and Gulden’s are LID-safe)
1 tablespoon sugar
4 tablespoons white wine vinegar
non-iodized salt and black pepper, to taste
1 tablespoon olive or canola oil
Combine the broccoli florets, chopped apples, Craisins, and sliced almonds in a bowl.
In a small bowl, whisk together the Dijon mustard, sugar, white wine vinegar, non-iodized salt, and pepper. Slowly whisk in the canola oil. Alternatively, shake the dressing ingredients together in a sealed Mason jar.
Pour the dressing over the broccoli salad and toss to combine. Refrigerate until ready to serve.
This salad keeps up to 3 days in the fridge, although it is best the second day.
My new endocrinologist called me Friday afternoon with my biopsy results. The one nodule that was biopsied is positive for papillary thyroid cancer. The cyst is not malignant. She told me I would need to do a whole body scan and a CT scan. Then she said the dreaded words, “you need to start the low iodine diet tomorrow.” “I can’t! I have a thing tomorrow!”, I replied. I have been working on a fundraiser at work for over 2 months and it was finally happening. She tells me to enjoy my party and to start LID on Sunday.
After getting off the phone with her, I left my office because the tears were welling up. I went outside and cried and cried. I composed myself and headed back in. I had too much work to finish. I did not have time for freaking out.
The hospital should be calling me, after it is all cleared with my insurance company, to schedule Thryogen shots, a small dose of radioactive iodine, a nuclear whole body scan, and a CT scan. Hopefully it all works out for the week of March 9 – 13. I have the 9th and 13th off of work. That will make it easier.
I will have to get up Sunday morning and going grocery shopping for the low iodine diet with absolutely no time to plan. Oh, joy.
After waiting 6 long weeks, I finally had a biopsy on Friday. It was performed by a doctor in my new endocrinologist’s office I have not seen before. He was thorough. I was on the table for 2 hours.
He started by doing another sonogram of my neck. He found a third nodule. All of them are smaller than 1 centimeter. Two of them are close together, behind the carotid artery and hard to get to surgically. One is a cyst.
While he was doing the sonogram, he mumbled something about having had Hashimoto’s can cause regrowth of thyroid tissue, but that the body also attacks that tissue so even if it is malignant, it’s typically not that bad. I have never read about Hashimoto’s causing regrowth.
The doctor did a great job deadening my neck with lidocaine. I felt no discomfort at all, a stark contrast to the first biopsy I had at a hospital 6+ years ago. He was only able to biopsy 2 of the 3 nodules. He biopsied the cystic nodule, pulled out fluid, causing it to shrink in size. He’s not too worried about that one. He had a hard time getting to the other one because of its location. He surmised that since the two that are right next to each other and look similar that they are probably the same type.
After the biopsy, he had me lay on the table for 15 minutes holding gauze to my neck and applying pressure. He told me he did not puncture an artery. Wait, what? I was kind of light-headed (I guess from having my head tilted back for so long), so was glad I wasn’t rushed out of the office. A nurse came in and helped me sit up. They left me sitting there for another 10 minutes. The doctor came back in and did another sonogram of my neck and confirmed that the cystic one did shrink. He told me that if I don’t hear anything by Wednesday to call on Thursday.
On a Butterfly's Wings 
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