June Sonogram

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.

What a Week

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.

Everything Bagel Seasoning (LID)

Everything Bagel Seasoning

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.

For the low iodine diet, I have found that Thomas brand plain bagels are safe. Kite Hill Almond Milk Cream Cheese Style Spread is also LID-safe and tastes good.

Everything Bagel Seasoning (LID)

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
2 teaspoons 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.

Bagel

This Sucks!

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!

Dairy-Free Alternatives

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

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 Cream Cheese

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.

 

Yogurt

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.

 

Ice Cream

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.

 

Creamer

 

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.

 

Broccoli and Apple Salad (LID)

Broccoli and Apple Salad

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.

Results are In

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.

Waiting on Biopsy Results

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.

So now I wait.

Strawberry Margaritas (LID)

Strawberry Margarita

There is no reason you cannot enjoy a nice cocktail while on a low iodine diet (as long as it adheres to the rules of LID). These Strawberry Margaritas are delicious! You can easily double, triple, quadruple, etc… this recipe.

Strawberry Margaritas (LID)

1 1/2 ounces tequila
1 1/2 ounces triple sec
1 1/2 ounces fresh lime juice
1/4 cup frozen strawberries
ice

lime slices, to garnish (optional)

Blend the tequila, triple sec, fresh lime juice, frozen strawberries, and about 1/2 cup of ice (more or less, to taste) in a blender until smooth. Garnish with a lime slice.

It’s Back.

Unfortunately, it looks like my thyroid cancer is back. I was looking forward to the 6 year anniversary of my total thyroidectomy at the end of January. Now, I am facing dealing with thyroid cancer again.

My oncologist retired in December. The doctor that took on her patients did not want to keep me on, as he does not treat thyroid cancer. I spent a couple of months looking for a new doctor. I found an endocrinologist in another town not too far away. I wasn’t totally thrilled with him, but thought he’d be fine for bi-annual check ups. I saw him for the first time in September. Not long afterwards, I got a letter in the mail saying he was quitting with no future plans. He saw me one last time to make sure I had a prescription for my Levoxyl and referred me to an endocrinologist in Columbia.

The reason I was seeing an oncologist instead of an endocrinologist was because I had a horrible experience with one of the few endocrinologists here. He told me that nothing was wrong with me, I needed to stay off the internet, I needed to be on antidepressants, and there was nothing he could do for me. I was his patient for 2 1/2 years (I was hypothyroid for years before the cancer diagnosis) and during that time he never once physically examined my neck and only ran blood tests for TSH. Imagine my dismay when I found out I had been referred to his office. I didn’t respond to his office’s request to schedule a consultation for a couple of weeks. I started looking for a doctor in Charleston or Rock Hill. It would be hard to make a 2 hour trek for appointments, but I would make it work if I had to. After thinking about it for a while, I decided to call the local office and ask for another doctor. I told the woman on the phone I could absolutely not be the one guy’s patient again and asked her to pair me with the doctor in the office that was best for a thyroid cancer survivor. Without hesitation, she recommended a female doctor in the office. She just so happened to have an availability the next day. I went in with low expectations and a positive attitude. The new doctor is awesome!

During the consultation, she said everything I had hoped she would say. She could not understand why I was not getting yearly sonograms since my thyroglobulin number have never been under 5. I have antibodies from having Hashimoto’s so it complicates the reliance of thryoglobulin as a tumor marker. She gave me information on natural desiccated thyroid medication, scheduled me for a sonogram at the end of June (her first availability), and sent me to the in-office lab. She called me a week later with the blood test results. She was concerned with my thyroglobulin level of 7 and wanted me to come in Friday morning at 7:30 AM for a sonogram.

I went in on Friday for the sonogram. With in a few minutes, she had found 2 nodules in my neck. One was just below my thyroid bed. She explained that it looked like it could be a fluid-filled cyst. Another nodule, deep in my neck tissue on the right side appeared to be hard and she was concerned. It measured 1.1 cm. The nodules are not in the lymph nodes. I had a total thyroidectomy and radioactive iodine ablation. Those nodules should not be there. She tells me that I will need a biopsy and then we can decide on an action plan – more radiation, surgery, or a wait-and-see approach. Surgery might not be an option because of the size and location of the nodule. She would have another endocrinologist in the office do the biopsy. His first availability is Friday, February 21st. So, I’m scheduled for a biopsy. Now I wait. I do not want to do this again. I cried all the way to work.

Luckily, I am busy and don’t have much time to dwell. I kind of know what to expect and I am not scared for my life. Still, this sucks. Hard.

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