It’s been a little over a year and a half since my modified radical neck dissection. Overall, things are going well. I’m busy with life and haven’t had time to write on this blog. I do love reading comments people leave and am glad that sharing my experience has been helpful to some.
I get bloodwork done and see my thyroid specialist every 3 months and have an ultrasound of my neck every 3 – 6 months. We are keeping an eye on a spot on the left side of my neck. It hasn’t really changed much in the past year, but my thyroglobulin and antibodies values rose when we checked in September. My specialist tried to ease my mind by saying it could be because I had just gotten over Covid. I will have labs done later this week, so I’m anxious to see if those numbers have continued to increase. I see my oncologist every 6 months but will go to once a year after the next visit in June.
I developed lymphedema in my neck after my second surgery. It sucks and I hate it. It has been a challenge. I went to physical therapy for a bit and it was so helpful, but it is not something I can do on an ongoing basis (stupid insurance company). I wish I could. I do want to find a local massage therapist that does manual lymphatic massage. I try to manage it myself with massage and a lymphedema pump. Luckily, the swelling isn’t as bad in the cooler months, so I’m experiencing a little break.
I also have nerve damage due to my surgery. I am still experiencing significant numbness from my ear, alongside my jaw, down my neck, and across my shoulder. Nerves take a long, long time to heal. There has been improvement since my surgery (half of my earlobe feels almost normal!), but at this rate, it will be another 2 years or more before it is markedly improved.
I’ve been living with thyroid cancer for 9 years now. It’s hard to believe. It doesn’t define or rule my life, but I doubt a day goes by that I don’t think about it (mostly because of the discomfort from the lymphedema and/or nerve damage reminds me). I’ll keep doing what I have to do.
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.
This is a super easy dessert that is a perfect ending to any LID meal. It is also great for breakfast. There is no need to defrost the frozen cherries, but I do like to cut them in half before tossing them with the sugar, cornstarch, and almond extract. Adjust the amount of sugar in this recipe to your tastes. Some cherries are naturally sweeter than others and keep in mind that the crumble topping has sugar in it too. Unsalted nuts (almonds, pecans, or walnuts) are a great addition to the crumble. Any frozen fruit could be used for this dish. Serve warm or at room temperature.
Cherry Crumble (LID)
1 12 – 16 ounce bag frozen pitted cherries 1/4 – 1/2 cup sugar (to taste) 2 tablespoons corn starch 1/2 teaspoon almond extract 1/4 cup Earth Balance Soy-Free Buttery Spread 1/2 cup flour 1/2 cup brown sugar 3/4 cup rolled oats 1/4 teaspoon non-iodized kosher salt
Mix the cherries, sugar, almond extract, and corn starch together. Place in a baking dish.
Combine the flour, brown sugar, oats, and non-iodized salt in a bowl. Work the Earth Balance Soy-Free Buttery Spread into the mixture with a fork, pastry cutter, or with your hands until evenly distributed. Top the cherry filling with the crumble mixture.
Bake at 400 degrees for 30 minutes or until bubbly.
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.
It’s nerve-wrecking to go through the week-long process for a thyroid nuclear whole body scan, but it is even more so during a global pandemic. It was a bizarre week.
I got a call from someone in the Nuclear Medicine Department to ask me if I had any questions and to assure me that the week would proceed despite an order for hospitals to cancel non-mandatory procedures. When I arrived at the hospital Monday morning I found all the entrances closed except one. Of course it was around the other side of the hospital from where I parked. I was questioned, my temperature was taken, and I was given a mask to wear. I found my way through the eerily empty hospital to Nuc. Med. Once there, I was taken to another part of the hospital for a blood draw (for a pregnancy test). I had to find my way back to the Nuclear Medicine department, which was in another building across the street. All the crosswalks were closed, so I had to exit the building, cross the street, and find the one open entrance again. Once back at Nuc. Med., I was given my first Thyrogen shot after they got my pregnancy test results. I went back Tuesday for my second Thyrogen shot. That visit was a little easier since I was able to park closer to the one open entrance and knew what to expect with the new protocols. On Wednesday, I was not given a mask. They were already running low. I got my tracer dose of radioactive iodine and was on my way.
I got to the hospital at 7:30 AM on Friday. I had 4 scans including the nuclear whole body, a nuclear neck scan, and 2 CT scans. It took about 3 hours. I was given a disc with my scan results to take directly to my endocrinologist. My husband met me at the endocrinologist’s office, but they wouldn’t let him in with me. I was so exhausted and feeling the affects of being off my meds for a week, going through the stress of the scans (not to mention the stress of all the restrictions and changes due to the coronavirus pandemic). My endo went over my scans with another endo in the office and was able to give me results.
The results were unexpected. Nothing showed up on the scans, not even the nodule that had been confirmed with sonogram and biopsy. My endo thinks that indicates that my thyroid cancer is RAI-refractory. It doesn’t uptake the radioactive iodine, so that means RAI is not long a viable option for detecting or treating my thyroid cancer. My doctor tells me not to worry yet. She thinks that the cancer has been there for quite some time (my thyroglobulin levels have never been lower than 5) and that it is localized in my neck. She told me that she will refer me to Duke for a second opinion after my next sonogram in June (right now might not be the best time with the uncertainty of the virus).
I don’t know how to process it all. If the cancer I know is there is not showing up, what else is not showing up? It’s scary to know that RAI is no longer a treatment option. Why didn’t it show up on the CT scan? Is it too small? Could it be too small to uptake enough RAI and that is the reason it didn’t show up? Disappointed that I don’t have answers and that I have to wait longer knowing that there is cancer in my neck that could kill me if it metastasizes. Is “the good cancer” going to kill me!?
I made the mistake of googling RAI-refractory thyroid cancer. It’s really scary to read articles that call people with RAI-refractory thyca as “unfortunate” and that the 10 year survival rate goes down to 10% with metastasis. I can’t deal. I’m shutting down for awhile.
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.
On a Butterfly's Wings 
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