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.

Scan Results are In!


My oncologist’s office called. My scans were clear!! Everything looked good! I don’t have to go back to my oncologist until August. I am so relieved!

The Results Are In

Never Be Ashamed of a Scar

It’d been a week since my whole body scan and I still hadn’t heard from my oncologist. My stomach had been in knots all week.

I finally mustered up the courage to call my cancer center and asked about my results. I left a message and someone actually called me back in less than 3 hours. The lady (not my doctor, physician’s assistant, or nurse) read the report to me.

The report read that there was no visible thyroid. There was uptake in the salivary glands, liver, and GI tract, all which are considered to be normal. There was “no abnormal distribution!” I asked her if the lymph nodes were clear and she repeated that the report stated that there was “no abnormal distribution.” This is good. This is very good.

My Whole Body Scan is Scheduled

I had an appointment with my oncologist last week. She was in a hurry. She didn’t say a thing about my thyroglobulin levels. We had previously discussed a whole body scan a year out from my RAI. She told me I wouldn’t have to do the low iodine diet, get the Thyrogen shot, or be isolated with a tracer dose of I-131. Ummmm, I’m pretty sure that’s not the case. Maybe she was confused with some other test. She was out the door before I could ask any questions.


As an aside, it is so important for you to learn everything you can about your body and your cancer. You have to be knowledgeable enough to be proactive in your treatment. Doctors make mistakes. They are in a hurry. Trust them, but don’t trust them. You know what I mean? It’s like my dad told me, “when it comes down to it, nobody really cares about you.”  I love my dad’s candor. : ) You take care of you.

Anyway, after my doctor left, I spent time with the scheduler, who was on the phone with the Nuclear Medicine people at the hospital where I will be having my scan. I will have to do the diet. I will have to get the Thyrogen shots (Yay! I don’t have to come off my meds). There will be some kind of isolation (although I’m not sure what the requirements are yet….I’ll have to call the Nuke Med. Dept. myself). Duh.

So, I am scheduled for my first Thyrogen shot on Monday, March 16th. Second shot on Tuesday and tracer dose of I-131 on Wednesday. My scan will be Friday morning, March 20th. Of course I won’t get my results immediately. My doctor said if I haven’t heard from them in 5 business days post scan to give them a call. Ugh.

I will start LID next Wednesday (two weeks from the tracer dose of I-131). Again, I was given no instructions from my doctor. I pretty much follow the diet found on ThyCa’s website. I’m prepping some foods today to freeze. I’ll post recipes when I can.

Umami Sauce (LID)

Umami Sauce 2

I’ve been trying to come up with a soy-free, fish-free, and iodized (or sea) salt-free substitute for soy sauce and fish sauce. I  I saw a blurb in the January 2015 issue of Saveur magazine about a chef (Christian Puglisi of Relae in Copenhagen, Denmark) who makes a Mushroom “Soy” Sauce to add umami to his dishes. I adapted his recipe to fit my needs for a low-iodine diet (LID) I have to go on soon.

Use the Umami Sauce instead of soy sauce or fish sauce (a great way to veganize Asian dishes) in recipes or incorporate  into other dishes to add a umami/mushroom flavor. I used the umami sauce in a low iodine diet version of Pad Thai. I was really happy with the results.

Umami Sauce

Umami Sauce

8 ounces white button mushrooms
1 teaspoon non-iodized salt (I use Morton’s Coarse Kosher Salt)

Slice the mushrooms and place in a bowl. Sprinkle the non-iodized salt over the mushrooms and mix to distribute. Let the mushrooms sit for 1 to 2 hours, stirring occasionally.

Line a small colander or mesh strainer with cheesecloth over a bowl or measuring cup. Pour the mushrooms and their liquids into the strainer. Gather the edges of the cheesecloth and squeeze out all the liquid from the mushrooms. You can use the mushrooms for another purpose. Store the mushroom liquid (Umami Sauce) in the fridge for up to two weeks.

Saag Chole (Spinach and Chickpeas) (LID)

Saag Chole (LID)

I am already planning for the low iodine diet I will have to go on in March to prepare for a whole body scan to check for persistence/recurrence of thyroid cancer. I’ve been looking through some of my favorite recipes, trying to find ones that are LID-friendly or can be easily adapted. This is one of my husband’s favorite Indian dishes. It is so flavorful and easy to make. I serve it with Basmati rice. This dish freezes very well. I put individual portions with some cooked Basmati rice in the freezer for use in March. It will be nice to have quick LID meals to pop into the microwave.

Some people are told they cannot have or need to limit spinach on their low iodine diet. Follow the instructions you were given. Also, when buying frozen spinach, read labels. Several brands contain salt.

saag chole

Saag Chole (Spinach and Chickpeas)

2 medium onions, quartered and thinly sliced
1/2 inch piece fresh ginger, skin removed and minced
2 cloves garlic, minced
3 tablespoons vegetable oil
1/2 teaspoon cumin seeds
2 medium tomatoes, coarsely chopped
1/2 teaspoon ground coriander
1/2 teaspoon ground turmeric
non-iodized salt (I use Morton’s Coarse Kosher Salt), to taste
1/4 teaspoon cayenne pepper (or to taste)
20 ounces (2 packages) frozen chopped spinach, thawed and drained (make sure it doesn’t contain salt)
1 14.5 ounce can (no salt added) chickpeas, drained (or about 1 1/2 cups of chickpeas you cooked yourself)
1 teaspoon garam masala (recipe below)
1 tablespoon lemon juice

Heat the oil in a large heavy-bottomed skillet over medium heat. Add the onions and saute until lightly browned. Add the ginger, garlic and cumin seed and saute until the cumin seeds darken. Add the tomatoes, spices, non-iodized salt, spinach and chickpeas along with 1/4 cup water. Reduce the heat to medium-low, and cook the Saag Chole for 25 minutes, stirring occasionally. Just before serving, add the garam masala and lemon juice. Serve hot with cooked Basmati rice.

Adapted from a recipe in: From Bengal to Punjab: The Cuisines of India by Smita Chandra (The Crossing Press, 1991).

Garam Masala

This is a garam masala spice mix that I use in Indian dishes. It is easily doubled and keeps well in a glass jar. I love mixing these spices together. They smell amazing! Use this spice mix in any Indian dish that calls for garam masala.

Garam Masala

2 tsp. ground cumin
4 tsp. ground coriander
1 tsp. ground cardamom
1 tsp. ground cinnamon
1/2 tsp. ground cloves
1/2 tsp. ground black pepper

Combine spices. Store in glass jar.

Spicy Thai Cucumber Salad (LID)

Spicy Thai Cucumber Salad (LID)

I love cucumber salads. This is my favorite one. It’s adapted from a recipe in one of my all-time favorite cookbooks, The Best of Vietnamese & Thai Cooking by Mai Pham (Prima Publishing, 1996).

I often make this salad using regular cucumbers found at the grocery store. Peel and then remove the seeds before slicing. Most of the time I make this salad only using cilantro since it’s an easy-to-find and inexpensive herb. In the summer months, I also use mint and Thai basil that I grow in my garden. I love the combination of cilantro, mint, and basil in Southeast Asian foods. Use any one of these herbs or a combination when you make this salad.

Spicy Thai Cucumber Salad

2 cucumbers (English cucumbers work well), cut in half lengthwise and thinly sliced
1/2 small sweet onion, thinly sliced
1 – 3 jalapenos or other hot chile (to taste), seeded, quartered lengthwise, and thinly sliced
fresh herb(s), to taste
….fresh cilantro, chopped
….fresh mint leaves, chopped
….fresh Thai basil leaves, chopped
1/4 cup rice vinegar
1/4 cup sugar
3 tablespoons water
1/2 teaspoon non-iodized salt (I use Morton’s Coarse Kosher Salt)

Combine the sliced cucumbers, onion, jalapenos, and herb(s) in a bowl. In another bowl (or measuring cup) combine the rice vinegar, sugar, water, and non-iodized salt. Pour the mixture over the cucumber salad. Mix to combine. Let sit at least 15 minutes before serving.

My Scar – 6 Months Out

My scar continues to look better. There are some days I don’t even think about it.

This picture was taken 6 months from my surgery date.

My Scar at 6 Months


I went this week to sign up for the LIVESTRONG Program for adult cancer survivors at the YMCA. It’s a 12 week program designed specifically for cancer survivors who are in that transitional period after completeing treatment.

I had been telling my husband that I wished there was some kind of program that would help cancer survivors rebuild strength, stamina, and muscle mass. I also need help losing weight. I have gained 17 pounds since my surgery. Anything to boost my non-existent metabolism would be helpful. I can’t afford a personal trainer and I’m too tired to do it on my own. I found out about the LIVESTRONG Program at the Y when I went to find out more about scheduling a mammogram at the one of the local hospital’s websites. I tried not to get too excited. It seemed too good to be true.

The lady I met with at the Downtown YMCA in Columbia, SC was amazing. She explained the program and asked me questions about my health. She asked me to tell my story. She listened. She acknowledged that I am a different person emotionally and physically since my treatment. No one has really done that before and I really needed to hear someone say that. I was afraid that I wouldn’t be accepted into the program because some people don’t consider thyroid cancer to be a real cancer. She told me that I shouldn’t discount my cancer because I didn’t have to go through as hard of a treatment as others. I wanted to hug her! She even introduced me to a guy who worked the front counter who was also a thyroid cancer survivor. I got to chat with him a few minutes. It was the first time I had met a thyca survivor face-to-face. So, overall, a very positive experience. The program starts towards the end of September. I go in next Tuesday for an intake and physical assessment with a trainer who has been trained by LIVESTRONG to work with cancer survivors. I’m so excited to get started! Oh, and it’s FREE!!

Here’s a link to more information about the LIVESTRONG at the YMCA Program.

Here’s a link to a map to help you find a LIVESTRONG at the YMCA Program near you.

Also, here is a video about the program. Have the tissues ready.

CT Scan and Results

ct scan
I had CT scans on Wednesday to check on the two vague spots that showed up during my whole body scan. Good news! The CT scan showed nothing was there. It also didn’t show anything else and my oncologist gave me the thumbs up. I would have really liked to hear the words “you are cancer-free” but I’m figuring out that is not the way this works.

This was my first time having a CT scan and I didn’t particularly enjoy it. They ran an IV in my arm, made me drink a big cup of thick liquid (I got to choose the flavor – vanilla – and it didn’t taste too bad), and then had me pull my pants down to my ankles after I got onto the table. I was asked to raise my arms over my head and was told someone else would come in to inject dye into the IV. I was moved through the scan once and then a guy came in, put a heavy cover over my chest and injected the warm dye into my IV. I could feel the warmth rushing through my veins and to my pubic area and down my legs. Freaky. It kind of felt like I peed myself. So strange. I was moved back through the scanner as the machine told me to breathe in and hold my breath. I got lightheaded and my heart was pounding. I got that fight or flight feeling. I felt like I was going to puke. I thought I might be having a heart attack or a reaction to the dye. Of course, it was just a panic attack. Fortunately, the process didn’t take very long and I was back in my oncologist’s office shortly after. I hope I don’t have to do those scans very often. No fun.

They did blood work at this visit and I haven’t heard back about anything other than my TSH, which was .0104. It’s suppressed and where she wants it. I was expecting it to be higher because I’m having a plethora of hypo symptoms, including gaining 13 pounds since the surgery. Even though I discussed all the symptoms I’m having (sore, tight muscles, joint pain, weight gain, dry skin, shortened menstrual cycle with heavier bleeding, fatigue, etc…) the doctor doesn’t want to change my dosage. The new normal. Yay. I’ll probably hear back about my thyroglobulin levels next week. I’m hoping they are close to 0.

I had an appointment on Friday with my surgeon. He’s still not completely happy with my scar and did not release my from his care. He said he’s going to keep me for at least 1 year and possibly even longer. I will go back to see him in August.

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