lilly barone feature

You may be wondering about the title of this article. Is it because I had a positive outcome and am cured of my cancer? Yes.

Is it because I had great doctors, nurses, clinical professionals and other medical staff handling my case? Yes.

Is it because I had an early diagnosis and smooth treatment process? Yes.

Is it because I had a good experience or good type of cancer? No.

Many people told me, “If I had to get cancer, thyroid cancer was the best kind I could get.” While I appreciate the well-intentioned friends, family and clinicians who said this to me, they could not be more wrong.

Cancer, of any type, is nothing short of torture. The words, “You have cancer,” are some of the hardest words to hear. Even if you are reassured you will be OK, you will never mentally or emotionally recover from the diagnosis of cancer.

Maybe in 20 years from now my outlook will be different, but for now, I wholeheartedly believe there is no emotional recovery from a cancer diagnosis. Even a “good” one.

Well, let’s talk about how my journey started. It started in 2014 when I was a sophomore in college. I went to bed after having a glass of wine with my roommates. I was laughing, joking around and happy. I called it an early night because I was tired and my neck was a little stiff.

Fast forward to 2:30 a.m. when I awoke with 103 degree fever, unable to speak, barely able to move and unable to stand up straight. I went straight to the emergency room (by myself) and was given an IV of fluids and a prescription for ibuprofen and told to wait out the virus.

Over the next 24 hours my condition worsened. I couldn’t speak at all, I couldn’t brush my teeth without crying and I could barely move. My mom took me to a different emergency room where I stayed overnight and was given an intensive dose of steroids and antibiotics intravenously. However, I left the following afternoon without a diagnosis. I left without answers, only a referral to an ENT (otolaryngologist).

I was very familiar with the ENT office. I had grown up with severe sinus problems and had already had my tonsils and adenoids removed, tubes in my ears, sinuses drained, polyps removed and a deviated septum fixed.

When I saw my ENT, he took one look at me and knew immediately I had “lingual tonsil hypertrophy.” This diagnosis stunned me because at the time, I didn’t even know what lingual tonsils were, and I had already had my tonsils removed, so how were they causing problems now?

Well, I learned there are three sets of “tonsils” in the body: the traditional palatine tonsils everyone talks about when referring to tonsils, the adenoids and the lingual tonsils.

Lingual tonsils are made from tissue from the lymphatic system; they rest on the base of one’s tongue and are usually never a problem for most people. However, mine were extremely enlarged, infected and blocking my airway. My doctor said they would never return to normal size because once they become enlarged they don’t have the ability to drain like regular tonsillar tissue. So I signed up for surgery and the enlarged tissue was removed.

It was 30 days after the surgery, and something was wrong. The doctor said the tissue had returned. I signed up for surgery number two. The tissue was again removed. In the months following surgery number two, I noticed a lump in my neck. I was panicked the tissue had again regrown, and I would need surgery number three.

When I returned to my doctor he said the tissue had not returned. (Sigh of relief). However, he wanted me to see another doctor in the practice after I got an ultrasound of my neck. He didn’t like the lump I felt. At the time I thought this was a strange request. But I complied.

While waiting for my appointment with the other ENT, I was anxious for the esults of the ultrasound. And in my infinite wisdom as an undergraduate speech-pathology student, I thought I could interpret a radiology report. So, I went to the imaging center and requested a copy of my radiology report.

*Cue the tears.*

I had diagnosed myself with cancer. Based on Google and the findings of the radiology report, which read “thyroid nodule with microcalcifications,” I was nothing short of certain this was cancer.

To my surprise (and my mother’s delight), at the new ENT appointment the doctor said I did not have cancer and my nodule was only 2 mm — nothing to worry about, even remotely.

I was not convinced. I told him I thought this was something.  I was still having trouble swallowing and my throat hurt. It had to be significant. The doctor proceeded to call me foolish (in a sugar-coated, not-so-loving way). I was dismissed and told he would follow up with ultrasounds annually.

Every year from 2014-2016 I would go to my annual neck ultrasound and again, be dismissed and told I was fine. Finally in 2017, four years after my initial ultrasound and after four years of being told repeatedly, “You’re fine,” I almost declined my annual ultrasound. In my mind I was ruled out for cancer.

The annual results were the same from year to year. Why waste my time? Well, the ultrasounds don’t hurt and the imaging center isn’t too far from my house, so I thought I would go and just make this my last one.

A few days after my ultrasound I got a call from a PA who told me the nodule grew “significantly” and I needed a biopsy.

Woah. Slow down. Biopsy. Nodule growth. This was all foreign to me. The PA could hear my panic and stated it was routine and less than one percent of nodules are cancerous so I shouldn’t worry. Just standard procedure.

So, I prepared for my biopsy. My mom was working and wasn’t very concerned because, like me, she thought there was no possible way for me to have cancer. The doctor already ruled out and told me I was fine… four years ago. So instead, I took my boyfriend to the appointment.

I was more apprehensive about the procedure itself than the results. I kept saying it was stupid for me to be there, it wasn’t cancer and it was just an unnecessary procedure. My boyfriend tried to reassure me it would be helpful to just get it done. I begged to differ because he wasn’t the one getting a needle probed into his neck. When it was time for the biopsy to start, they told me my boyfriend would not be allowed in the room. I panicked. I went out into the waiting room where my boyfriend was patiently waiting and broke down crying. I told him “I do not have cancer. I’m not doing this without you. Let’s go.”

Looking back on this moment I couldn’t be more thankful my boyfriend had a very level head and knows me well enough to know with a little support, he can push me to do the right thing. So he spoke to the office staff and informed them  I was ready to run and would do so, unless he was allowed to hold my hand. The office staff was not pleased; however, they conceited because a calm, present patient was much better than what I would have been.

The biopsy was painful but I survived. Again I found myself waiting for results. The impatient personality I have, coupled with my new masters degree in speech-pathology, made me think I could again, pick-up my radiology report with the biopsy results (prior to discussing the results with my doctor) and this time I would interpret it correctly.

I was fully expecting to see “benign” written on the report. Instead, in the parking lot of the imaging center by myself, I opened an envelope that said, “Suspicious for malignancy.” My heart dropped, panic set-in, followed by confusion, followed by tears.

I called my mom. I called my boyfriend. They both said the same thing. I was silly for going to get the report and I shouldn’t panic before I see the doctor. It’ s probably nothing, just like it was last time.

Thankfully, the doctor who told me I was foolish in 2014, had left the practice. A new doctor had taken his place. He was lovely, well-spoken and kind. He gently told me my results did indicate suspicious cells that had a high likelihood of malignancy. However, he reassured me this was not an aggressive cancer and I could sign up for the wait and watch protocol, which would involve an ultrasound every three months until the cancer grew large enough to take out or plateaued and stopped growing.

Or, I could opt for surgery right away. I agreed to sign up for the wait and watch protocol until I could think about my options more.

My mom (being a mother, a saint, and the type-A personality she is) was not convinced. She was worried for my health and wanted a second opinion. So I was then sent to another hospital, despite my resistance. I was convinced I was fine. This probably wasn’t cancer. There was a 30 percent chance this wasn’t cancer. And even if it was, the doctor said I was fine. So why go to a cancer center? I’m not sick enough to go to a cancer center, I thought.

My mom disagreed, so off we went to another cancer center. Thank goodness for moms, especially mine. She is amazing, and even if I didn’t see it at the time, somehow she’s always right (with everything). And my journey never would have been the same without her.

I met with the doctor, who had requested all of my reports from the other doctor, and also requested the actual pathology slides so the center could review them. The doctor was lovely, kind and reassuring I would be OK, and whatever option I chose, I was in good hands. He said the pathology slides were still under review but they almost never disagree with the pathology findings from my previous doctor’s office, so I shouldn’t worry. He offered me the same options as the other doctor: watch and wait or a hemithyroidectomy.

Given my impending enrollment in a full-time PhD program at Columbia University, I wanted to take care of surgery sooner, rather than later. So I made the decision to opt for surgery.

That night I got a call from the doctor’s office, but I was on a ferry on my way to Fire Island, so I missed the call. When I got off the ferry I had a voicemail saying I needed to call the office back first thing Monday morning. But the office was closed for the weekend.

To say my fourth of July weekend was ruined is an understatement. I couldn’t help but obsess over what the office wanted and why they were calling me.

Fast forward to Monday. I called the office and was informed the pathology results were in and this hospital had disagreed with the initial results from the other hospital. Something the doctor said “almost never happens.” Well, of course it would happen to me.

The answer was a repeat biopsy.

My mom took me into the city for my second biopsy. It was one of the most painful procedures I had endured up to this point in my life. I wasn’t given any sedatives or numbing cream. Just a hand to hold and the reassurance it would be over quickly. Four needle passes later and lots of tears from my end, the biopsy was over.

Again, I found myself waiting for results. Something I had become accustomed to by this point in my journey. However, this time I learned my lesson and waited patiently for my results. The new results came in and I was confirmed to have malignant papillary thyroid carcinoma with 99 percent certainty. The highest degree of certainty awarded to specimens collected via fine-needle biopsy.

Well, good thing I scheduled that surgery already, right?

On August 23rd, 2017 I went to the new cancer center to have half of my thyroid removed. I signed a consent form indicating I was OK with the doctor taking out my whole thyroid if he noticed the cancer had spread while in the operating room.

I came out of surgery in pain, but relieved to hear my mom say he saved half of my thyroid and everything went well. So, I still had half of my thyroid.

The doctor had previously mentioned the likelihood I would need to take thyroid hormone replacement pills every day for the rest of my life was 100 percent if he did a total thyroidectomy but only 30 percent if he did a hemithyroidectomy. These odds were good.

I wouldn’t say I was comfortable with the odds and I was tired of hearing percentages, but nonetheless, I would rather take my chances with 30 percent odds rather than know 100 percent I didn’t have a chance of living without the medication. So, I let this go for now and focused on recovering.

The first two weeks of recovery were frustrating. I spent a lot of time in bed, uncomfortable or in pain. I couldn’t do anything. I tried to go to a wedding for my friends three days post-op. I barely made it through the ceremony and left before the reception.

I was frustrated at myself for not being able to do anything except lay in bed. But I tried to be a good patient. Two weeks later on September 5, I started my PhD program. I got a clean bill of health from my surgeon and was told I was cancer-free.

I had indeed, had papillary thyroid cancer with two spots of cancer in the left side of my thyroid. But it was all gone now, and I shouldn’t have problems ever again. I need continued monitoring to check my hormone levels, but the levels take time to figure out, so currently I am waiting until mid-October to get some blood work.

So, what did I learn from my “good” cancer story?”

There’s no such thing as “good” cancer.

I had so much anxiety waiting for results and trying to navigate the decision-making process when given percentages to work with instead of clear-cut answers.

It was nothing short of miserable for a solid four months.

And the surgery was no walk in the park. Staying overnight in the hospital, coupled with the pain and frustration post-operatively, was not good.

To say I have a “good” cancer story needs to be taken into context. I am so happy and thankful for the amazing support I received from friends, family, doctors, nurses and medical staff during my time.

Cancer isn’t an easy word to hear, but my diagnosis and journey was made a little better, thanks to all of the individuals who supported me. My journey is still not over, but I hope my story can reassure someone else there aren’t many clear-cut answers, and it’s OK to be anxious.

There is no “good” cancer. But, keep in mind the high-survival rate and think about my story, and hopefully one day you, too, can be cancer-free.

Yes, this is a life-changing diagnosis, but it doesn’t have to be a lifelong sentence, at least physically. So hang in there and be a thyroid cancer warrior and one day, hopefully you will be a thyroid cancer survivor.

Lilly Barone Thyroid Cancer Awareness

My best wishes to all who are fighting and all those who have fought any type of cancer, especially thyroid cancer. Please help raise awareness for others and spread the word to check your neck.

We want to hear your story. Become a Mighty contributor here.

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These past two years have been rough.

In 2015, I was getting sick every month with a sinus infection, taking antibiotics all the time and becoming immune to most of them. I went to an ear, nose and throat doctor and he said I had a deviated septum and large turbinates that needed to be shaved.

After the surgery I wasn’t getting sick anymore, but the indicating lymph node that was always enlarged when I kept getting the sinus infections hadn’t disappeared. I asked my primary doctor what that was and she ran blood work on it. She said nothing came back negative, so I asked her what was next?

I was told I had to get an ultrasound, so as soon as I did that I immediately got a phone call saying I needed to get a biopsy. All these immediate appointments made me nervous, but I had no idea what was to be expected.

As soon as my biopsy was completed, my doctor called me the next morning. Her exact words were, “Can you come into the office with a parent?”

I was 22 at the time, and have never come in with a parent before. As a matter of fact, my primary doctor had never met my mom until that day, August 19, 2016. As soon as I heard those words, I told her yes, hung up and immediately started crying.

Thankfully, when I was on the phone call my boyfriend was right by side. I called my mom crying. She was already at work for the day, but I asked if she could come with me to the doctor’s office as soon as possible. My mom, always the calming force, said she’ll be there in 30 minutes.

We arrived and sat in the exam room and the doctor walked in, sat down, and just said it (there’s never a good way to deliver bad news): “Your biopsy came back positive as papillary thyroid cancer.”

Instantly I broke into tears. Absolutely crushed. Cancer? What does this all mean?

My doctor tried to answer as many questions as we had, but being in shock, there weren’t too many. She gave me a name for a local surgeon and we were on our way. We left the office and went straight home.

My mom, being “the researcher” she is, instantly looked up everything she could. I, on the other hand, read one thing: “This procedure can effect your vocal chords.” I exited out of the website, broke out into tears and refused to look up anything else.

See, I have been singing ever since I was a baby. I would hum tunes to myself as an infant, to fall asleep, and I joined any singing event I could throughout my grade school career. Reading that was torture.

Before I managed to completely stop reading, one thing I read was, “If you get thyroid cancer, that’s the cancer to have.”

Having experienced everything I went through, I’m here to tell you absolutely no cancer is a cancer to have. Cancer changes your life, and it puts you in a mood no one who hasn’t been diagnosed can understand. Your life is put on pause. All you worry about is what’s next in this journey ahead of you.

When I was diagnosed, I had been working at The Boys and Girls Club. A coworker of mine had explained the wonderful story of the Japanese tradition of 1,000 cranes. For those who don’t know, an ancient Japanese legend promises anyone who folds a 1,000 origami cranes a wish granted by the gods. Some stories believe you are granted happiness and eternal good luck (instead of just one wish), such as long life or recovery from illness or injury.

I worked in the art room, so I was in charge of creating and leading classes for middle school and high school kids. I was very open with my kids and told them I needed surgery to remove my cancer. We made a goal chart to reach 1,000 cranes before my surgery date.

japanese origami cranes

My surgery date changed three times and my kids were all able to help me reach my goal of making 1,000 cranes. I strung them and hung them from my ceiling until I had to leave to begin this unexpected journey.

My surgery date was slowly approaching, and nothing could have prepared me for the journey that was about to begin. I was the first one on the schedule to get my surgery done. They had allotted six hours (which they thought that was going to be plenty of time) for my procedure.

In most cases, thyroid cancer patients need their thyroids taken out with a small incision in the middle of their neck. In other cases, such as mine, I needed my thyroid taken out and all the lymph nodes removed because the cancer had spread. That meant an incision going from the center of my neck, following the base of my neck to the clavicle.

carina campanella neck thyroid cancer surgery

My surgery ended up taking six-and-a-half hours to complete. After coming out of surgery my parents were told I had very “unique anatomy,” so they called in certain specialists during the procedure to make sure they were doing the absolute best for me. They had to leave a drain in to collect the fluid that was collecting in the wrong spot. Apparently I have a “large thoracic duct.”

When you are told about the procedure, they tell you to expect two to three days in the hospital. But since I’m so “unique” I stayed 11 days. The drain they put in was outputting two liters of fluid a day, and while I was losing that, they were inputting two liters of saline water to subsidize for that.

carina campanelle thyroid cancer neck drain

Doctors orders made me unable to eat since I had liters of fluid exiting my body through the drain for five days. I was only able to have food through IVs until I had to have a feeding tube put up into my nose and down my throat.

My surgery was on a Wednesday, and as soon as my procedure was over, my surgeon left on a business trip to go to a conference with all the best head and neck surgeons. She called my parents and explained how she did not want to leave and she was so sorry, but she has a great team watching everything I’m going through and she’d check in every day.

She had discussed my story with all of her colleagues while at the conference, and all of them came up with a solution. My case was so “unique” she had not seen anything like it in all the years she’s been doing this. My surgeon cared so deeply for me that as soon as she flew in Sunday night, she went home to feed her dogs, left and came to check on me.

carina campanella neck surgery

Once Monday came around they had a master plan to have the intervention radiology department help in this situation (which had never been done before on a thyroid patient). Monday night they took me in to get ready for the procedure. At 4:30 p.m. I started prepping and by 5 p.m. they wheeled me in for a procedure that should only take two-and-a-half hours.

Six-and-a-half hours later the procedure was done. I woke up in shock. I was in the recovery room before I was wheeled back up to my room and I saw what time it was and instantly freaked out. No one was in the room with me and it was something like 11 p.m. What day was it? Where is everyone? When one of the nurses came in, I asked where my parents were and she told me they’re waiting for you in your room and I’d be wheeled up shortly.

The leak was gone! I had been getting bubbles of fluid near my neck where the drain wasn’t able to get rid of the fluid and they weren’t coming back. A procedure like that was so crucial to helping me through this terrible time.

carina campanella hospital room

Those five days of not knowing what’s next were miserable. I struggle with anxiety and had to take a sedative before the initial procedure and after coming out of surgery being in major pain and only receiving pain meds that didn’t work was making my panic attacks heighten and made any little thing unbearable.

The IVs were not my friend — they kept stopping because so many things were going through them and my right arm had nothing available. No veins were showing, and they would put one in and it would hurt so bad because they weren’t getting them in completely. But after getting the feeding tube it made it much easier for me because they were able to change the IVs into oral medication through my feeding tube and I was finally IV-free!

carina campanella IV tube

The hospital let me go home, but I had to keep my drain in just in case. After 11 days I was able to introduce real food into my everyday routine, even though it was a very strict diet.

When I met with the surgeon for the post-op and to see if I could finally take the drain out, I was told there were still microscopic cells that could make the cancer come back. That meant I needed to do a radioactive iodine treatment to get as much of the cancer completely out.

Learning about this treatment I thought I was going to be “unique” with this one for sure. And to my belief, I was. Although, in this case, it was to my advantage. Radioactive iodine was a pill I had to take and go into isolation for three to five days. Twenty-four hours later I was released because the level of radiation was gone. I was sent home and asked to stay isolated for three days in my room to be on the safe side because never in their career had they seen something like this.

On February 17, 2017 after my full body scan I was told I was cancer-free!

I am grateful for all the great resources around me. The first surgeon I met was not personable, and I felt she had no empathy towards a young girl where singing and art was her life. Nothing about her made me feel comfortable, so I told my mom I wanted to leave.

We called my sister-in-law, who is an oncologist, and she told us about my doctor, who was a complete angel sent from above. I told her the same concerns about my voice, and she told me about a monitor they can use to make sure nothing happens to the vocal chords. That instantly made me feel better.

Everything from that point on was amazing, aside from the pain and misery that comes with any surgery procedure. If we never found my doctor, the first hospital would not have had the resources she did, and she would have had to crack my chest open to find the source of the leak from my thoracic duct. My doctor and her colleague who continued with my thoracic embolization were the best.

carina campanella after surgery

If I could offer any advice, I would say be an advocate for your body and soul, and if you know something is wrong, you have the option to get up and go. I’m so glad I did – it brought me to the doctors and place that cured me!

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The diagnosis of cancer is frightening. It doesn’t matter the type or the statistics given by the doctor — the word itself invokes a feeling of uneasiness within us. But that uneasiness should not stop us from knowing the warning signs.

In recognition of Thyroid Cancer Awareness Month, and for all of those who have fought and are currently fighting the battle, we’d like to share some things you should know about thyroid cancer (and squash some misconceptions).

1. Thyroid cancer is becoming more common.

Of all cancers, thyroid cancer is said to have the fastest-growing rate of incidence in the United States. Since 1990, the chance of being diagnosed with thyroid cancer has more than doubled. The American Cancer Society has estimated that there will be nearly 57,000 new instances of thyroid cancer diagnosed this year. It is expected most of this group will be composed of women because nearly 75% of thyroid cancer cases are found among females.

Part of the increased prevalence of the condition may be attributed to greater detection such as thyroid ultrasound, which is capable of identifying smaller thyroid nodules. Others hypothesize the greater occurrence is due to increased exposure to toxins and chemicals, more cases of autoimmune disease and greater exposure to radiation.

No matter the cause, it is important to be aware of this greater occurrence and keep yourself informed.

2. Thyroid cancer may not present symptoms.

You are probably aware of the common signs of thyroid cancer, including swelling and pain in the neck, hoarseness or loss of voice, and growths or tumors located in and around the neck. This is all pertinent knowledge, but recognizing symptoms may not prove to be the best method of identifying thyroid cancer.

Some forms of thyroid cancer may be asymptomatic or completely without symptoms. This means even if you do not present symptoms of thyroid cancer, there is a possibility it has developed. Because of this, it is critical you take advantage of and follow through with regularly scheduled doctor’s visits.

During these clinical visits, a physical thyroid examination done by your doctor may uncover an abnormal growth or thyroid nodule. Even then, some forms of thyroid cancer may only be identified through x-rays and image testing of the neck.

Therefore, it is of utmost importance you be vigilant and aware of your current thyroid health.

3. How you can recognize a cancerous lump.

Even though some forms of thyroid cancer are hard to identify, most thyroid nodules, lumps and goiters can be identified through a simple self-examination. Identifying an abnormal growth through this easy and repeatable neck check can be the difference in detecting and treating thyroid cancer or not.

Although most goiters and other thyroid-related growths are most frequently discovered during a clinical examination with your doctor, this simple self-check can help you recognize thyroid abnormalities and take appropriate action.

Thyroid Neck Check

To conduct this thyroid check all you need is a mirror and some water.

First, position yourself in front of the mirror in such a way you can easily see your neck.

Next, tilt your head back and swallow a small amount of water. Visually examine the throat while swallowing to see if any lumps are present.

You can further examine your neck by using one of your hands to feel for lumps while swallowing. This simple exam can occasionally catch a growth, prompting you to seek proper testing and medical assistance.

4. If you are a thyroid cancer patient, you are at risk of developing other cancers.

Unfortunately, the majority of thyroid cancer patients are not aware that they have an increased risk of developing secondary forms of cancer. Although thyroid cancer has a high rate of survivability, with nearly 95% of all cases not ending in mortality, it is important for thyroid cancer survivors to remain vigilant during and after treatment.

After the first year of treatment thyroid cancer, patients are at their highest risk of developing other less-survivable cancers including: non-melanoma skin cancer, prostate cancer, kidney cancer, adrenal gland cancer and non-Hodgkin’s lymphoma.

Those with thyroid cancer have a greater survival rate than others diagnosed with more aggressive cancers, but their risk of developing more unforgiving conditions increases significantly.

5. You may not need surgery.

A common response to inconclusive or indeterminate results of a thyroid nodule biopsy is to remove the thyroid surgically. This process is called a thyroidectomy and involves the complete removal of the thyroid. If your thyroid has been conclusively diagnosed as cancerous, then a thyroidectomy is certainly the right choice.

However, most thyroid nodules are benign, and if a doctor has concerns or suspicions of a thyroid nodule, they may still recommend a thyroidectomy. Unfortunately, if your doctor incorrectly diagnoses a thyroid nodule as being cancerous, this irreversible procedure results in you being hypothyroid for the rest of your life.

Recent research and procedures have become available that allow for greater accuracy regarding thyroid nodule biopsies and analysis. Before hastily moving forward with a thyroidectomy, it is best to consider other testing and analysis methods.

Spread the message.

With greater knowledge of thyroid cancer comes better treatment, awareness and wellness. You can do your part this September and celebrate Thyroid Cancer Awareness Month by sharing what you have learned and informing others of the various need to know aspects of thyroid cancer.

The National Academy of Hypothyroidism is a non-profit, multidisciplinary medical society dedicated to the dissemination of new information on the diagnosis and treatment of hypothyroidism.

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Thinkstock photo by Tonkovic


September marks the beginning of pumpkin spice latte season and kids going back to school. But did you know it’s also Thyroid Cancer Awareness Month? According to the American Cancer Society, nearly three out of four cases of thyroid cancer occur in women and about 56,860 new cases of it will be found this year.

One of the most alarming facts about thyroid cancer — cancer in the small butterfly-shaped gland located at the base of your neck — is that many people don’t experience symptoms or warning signs until a lump appears in their neck. Fortunately, if caught early enough, the cancer is usually treatable.

To help raise awareness, we wanted to show you photos of people living with thyroid cancer as well as thyroid cancer survivors. From pre-surgery to years after diagnosis, these people have shared their photos and stories on Instagram, offering inspiring and heartfelt messages similar to that of Tarek El Moussa and Brooke Burke-Charvet, celebrities who have both been diagnosed with thyroid cancer.

Pre-Surgery

Prepping for a Total thyroidectomy surgery @ Memorial Sloan Kettering Cancer Center in August 2012.

A post shared by Danielle Nicosia (@findinghopewiththyroidcancer) on

Post-Surgery

#ThrowbackThursday October 10, 2015 MD Anderson Cancer Center in Houston Texas, the morning after my thyrectomy due to cancerous nodules. It would be a few more months before i got the all clear but my surgeon was confident that got it all. I remember being scared of what the future would hold as the experiences other thyroid cancer shared were concerning. But my life after thyroid cancer has been very close to normal. I attribute that to fitness, good nutrition and God’s grace. Our current circumstances and struggles do not dictate our future! #RELENTLESS #TEAMRELENTLESS #cancersurvivor #imasurvivor #fuckcancer #thyroidcancersurvivor #thyroidcancer #thyroidcancersucks #thyca #thycawarrior #thyroidhealth #nutrition #fitness #findacure

A post shared by JD Duran (@journeystarts2day) on

Today I got my drain taken out ! Last step for a while, besides the check ups, Next step Radioactive Iodine(probably getting it done in January). The “hard part” feels like it’s officially over! I could not have done it without my mom by my side each and every minute of it.. literally sleeping on a futon chair/bed every night by my side and using the village at city of hope to freshen up for the day. I am so thankful to have had such an amazing support team there, having my sister and dad come in with their busy days, to visit me at the hospital. There were good days and miserable days and I couldn’t have done it with out you! Thanks Momma!???? #cityofhope #support #love #compassion #momma #thyroidcancersucks #fuckcancer #battlescar #drain

A post shared by Carina Campanella (@carinaallayne) on

This was the beginning of the most difficult week in my life. The goal was to get my entire thyroid out on Monday May 15th. After surgery I had come to find out only my left side was removed as well as several lymph nodes and a vocal nerve that was covered in the cancer. (Papillary thyroid carcinoma). My left side of my thyroid was completely covered in tumors and so were the surrounding tissue/lymph nodes/vocal nerve. Luckily, that side is gone forever. Today we confirmed the second surgery to remove the rest of my thyroid on Friday May 26th. My right side of my thyroid only has one tumor that is 4mm in size. (Pretty small.) There is still always a chance of complications of course, but I have faith in success of this next surgery. As of right now, my voice is very weak and is only a whisper. I only have energy that last about 3-4 hours. I am always exhausted. I stopped taking my pain meds due to how they made me feel. Recovery is happening, but another surgery is on the horizon. Thank you to everyone for the love and support. ???????????? #thyroidcancer #thyroidcancersucks #thyroidectomy #CheckYourNeck

A post shared by Julie Shaw (@wahseiluj) on

3 years cancer free! #suckitcancer #cancerfree #checkyourneck #thyroidcancerawareness

A post shared by Erin Murphy (@emurph92) on

Before and After

Today officially marks 1 year since having my total thyroidectomy. 1 year since my life was completely changed. Going into surgery, I didn’t know the golf ball size tumor was wrapping itself around my vocal chord. I didn’t know that would cause serious damage to my vocal chord and would leave me sounding like I had permanent laryngitis for over 6 months. I didn’t know the cancer had spread to 11 of the 20 lymph nodes my surgeon removed from my neck. I didn’t know my scar would be 3 inches longer than I was originally told. I didn’t know how much of a struggle it would be to go on living your life without your thyroid. I didn’t know that just about every single cell in your body depends on your thyroid in order to function properly. I didn’t know that I would never feel “normal” again. And I definitely didn’t know I’d have a reoccurrence and have to go through the whole thing all over again just a few months after. Although it hasn’t been easy, I’ve finally adjusted to this new life of being a cancer patient. I’ve gotten used to the scar, and the strange looks when people see it. I’ve gotten used to waking up every morning and needing to take a tiny little pill in order to function (but definitely haven’t gotten used to having to wait an hr afterwards before having coffee….). I’ve gotten used to no fat and low iodine diets. I’ve gotten used to numerous blood tests and scans. I’ve gotten used to telling people, “I have battled thyroid cancer twice”. I’ve gotten used to telling people that I was radioactive twice. I’m surprisingly getting very emotional as I type this as I’m thinking about how far I’ve come in the last year, and honestly I am so damn proud of myself. Now, I’m 4 months away from another body scan to determine if I am finally cancer free or not. 4 months away from saying I’ve beaten this ugly disease twice. Am I scared that I could have another reoccurrence? You bet I am. But I won’t let that get me down. Everyday is a battle, everyday is a struggle, but I will never ever ever stop fighting, or bringing awareness. ????????????????”She let her butterfly go so she could live” ????????#ThyroidCancerAwareness

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Filed Under: #NoFilters ~ seeing is believing ~ my labs were “normal” but, the biopsy told a different story or, two… > #September is #ThyroidCancerAwarenessMonth ~ Please, get your neck checked, find a doctor that listens to you & find a #ThyCa support group bc if you haven’t lived sans #Thyroid ~ you don’t understand… words of wisdom > * This was me two years ago ~ #IWillSurvive ~ #GloriaGaynor ~ you know the lyrics ~ ???? . . . . . #GetYourNeckChecked #NeckCheck #ThereIsNoGoodCancer ✌️ #ThyroidCancer #ThyroidCancerAwareness #ThyroidDisease #AutoImmuneDisease #Hashimotos #Graves > > > now, back to #Music #MusicIsLife #September #EarthWindAndFire ~ ~ ~ ~ ~ Do you remember the 21st night of #September? Love was changing the minds of pretenders While chasing the clouds away Our hearts were ringing In the key that our souls were singing. As we danced in the night, Remember how the stars stole the night away Ba de ya – say do you remember Ba de ya – dancing in September Ba de ya – never was a cloudy day . . . My thoughts are with you Holding hands with your heart to see you Only blue talk and love, Remember how we knew love was here to stay Now December found the love we shared in September. Only blue talk and love, Remember the true love we share today . . . The bell was ringing, aha Our souls were singing Do you remember Never a cloudy day There was a Ba de ya – say do you remember Ba de ya – dancing in September Ba de ya – never was a cloudy day There was a Ba de ya – say do you remember Ba de ya – dancing in September Ba de ya – golden dreams were shiny days . . . ✌️❤️ & #RockAndRoll ~ #iPaintToMusic ~ #Art #Artist #LouisianaArtist # ~ #iPhonePic #NotAPhotog

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Survivorship

I don’t know about y’all but I’m so glad today is Thursday. I only had a 4 day work week yet every day has drug on. I’m so ready for weekend. You know what else I’m ready for??? Honesty. So here goes…today I woke up all in a tizzy because the scale is going up again. Now you would think I wouldn’t be surprised since my thyroid levels are off, meds are being adjusted, spent much of the last 3 weeks sidelined by a kidney infection, etc. But then there’s all the posts about exercise and nutrition, knowing what to eat and what not to eat follow this program, move every day, blah, blah, blah. Now don’t get me wrong…I know what works and I know what to do. But at what point does the journey become less about me and more about the numbers? More about the quantity and not quality??? More about saving face? I’ll be honest, I’ve hit that point. Telling myself that if I took a break that meant I wasn’t committed to myself. That I was being lazy. That I didn’t care. None of those things could be farther from the truth. Truth is I care alot. Not just about my physical but my mental too. I looked in the mirror this afternoon and you know what I saw…that I look pretty good if I must say so myself.???? I needed to hear myself say that because I work so hard…some days as if I’m unacceptable to myself. But I am. So I’m taking a break. Giving myself permission to just be for a little. May be a day, may be a week. I share this because we all stick to things because we think we have to. Give yourself permission to step back until you’re ready to step up! Happy Thursday Evening!???? #behonestwithyourself

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28 Radioation, 2 radioactive iodine treatments, 8 surgeries (2 non-cancer related) and lots of scars on my body and soul. And my neck look like an old shapai. But I feel great and feel comfortable in my own skin. They suspect some more cancer nodules in my armpit. But I’m ok. My doctor told me I could hide the scars away, but I don’t wanna do that. I carry them with pride. Once and a while it does overwhelm me. But life is a blessing and if there is anything I learned from cancer is to live the fullest. To exersice and move ever day, and to do things I love ❤️ with people I love ???????? #lifestyle #malta #instalove #kickcancer #luckyme #lovelife #coolhunter #luckygirl #passion #postsurgery #thyroidcancer #embraceyourself #loveyourscars #thyroidcancerawareness

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Thyroidless Julie Update: My scar doesn’t look too bad! My voice is slowly coming back. (Super raspy) Work has been insane, but has really put my energy level and endurance to the test. I’ve been doing at least 13k a night and I’ve kept up pretty well! Other than my voice, it’s difficult to stay cool in a 90° hotel. (Always sweaty… I know gross but my body is trying so hard to cool down.) My body is constantly burning up-Thanks lack of thyroid!!! Anyways, here is my timeline of events, past and future: •May 15th 2017: left side of thyroid and vocal nerve removed. •May 26th 2017: right side of thyroid removed. •June 21st 2017: began low iodine diet for my RAI treatment. •June 29th 2017: I stop taking my thyroid medication in preparation for radiation. •July 5th 2017: first injection to lower my TSH levels. •July 6th 2017: second injection. •July 7th 2017: Radioactive I-131 dose and also the beginning of my seclusion for 7 days-due to being radioactive. •TBA: post RAI scan to see if external beam radiation is needed. (Praying that it won’t!!) ….and lots and lots of blood work! #thyroidectomy #thyroidcancer #papillarycarcinoma #cancersucks #RAI #thyroidcancersucks

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????????Swipe ➡️➡️➡️ Here’s to ONE year cancer free!!! One year ago today I underwent a complete thyroidectomy, radical neck dissection and reconstruction on my recurrent laryngeal nerve. Isn’t that a mouthful? ????????‍♀️ anyways, sooo grateful to be cancer free and not suffer from “as many” thyroid issues. I went almost A YEAR feeling like crap before a doctor actually listened to me and ordered the necessary tests to find my cancer. Don’t ever let medical professionals discredit how you feel due to your age. I had multiple doctors tell me I was too young and that all I had was anxiety ????????????????. YOU KNOW YOUR BODY better than ANYONE else, don’t forget that!!! So here’s a post for awareness: if you feel like crap- GO GET CHECKED! And don’t forget to always #CheckYourNeck because thyroid cancer is on the rise, so always add your TSH, T3 & T4 levels into your yearly blood work and if you notice your neck is slightly enlarged, go to your primary care physician and ask them to order an ultrasound. Be smart about your health, we only get one body- take care of it. Xoxox ???????????? #ThyroidCancer #ThycaWarrior #ThyroidCancerAwareness

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Oldie but goodie. #thyroidcancerawareness

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Have a thyroid cancer picture you want to share? If so, post it in the comments below.


When people first meet me, a few of them ask, “Are you afraid?”

Normally I say, “No, it’s OK. We all have battles.” I do believe this, but I’m afraid I’ve met very few people who can really handle the fear for dying.

When I was diagnosed with thyroid cancer they told me one of the tumors was almost 5 centimeters in length, and there were even a few small tumors outside of the thyroid. They also think I had cancer many years before I was actually diagnosed.

The irony is knowing this has been one of my biggest comforts since I got diagnosed. If I had found out I had cancer before then, I would have had RAI treatments, and I would not have been allowed to have children. That means my two beautiful babies might not have been born.

But I also never really felt it was unfair to be told this because the alternative is so much worse.

Shortly after I was diagnosed I joined a lot of Facebook groups for people who have thyroid cancer. I quickly realized some people acted like they had given up hope. I don’t blame them — it’s a hard uphill battle. Many people rarely acknowledge thyroid cancer as a “real” cancer. I’ve seen other people look so relieved when they realize it’s “just” thyroid cancer.

After two years of treatment and self-pity, and constantly fighting with my husband and other people, I finally understood — I will never be the person I was before I got sick. The more I tried, the more I felt defeated because I had already changed too much.

From that point on I started embracing every challenge set before me by developing the new me. When I couldn’t run for a long period because of double ankle surgery, I started swimming. When I couldn’t swim because of nerve damage and muscle spasms, I started biking.

By giving myself a good and stable routine I managed to lose weight (despite getting hormone treatments and thyroid supplements). The days I don’t have the energy to exercise I just walk. Sometimes I put a movie on and step for 30 minutes.

But I move every day — no exceptions.

My friend, who is also going through some health problems, told me she feels the worst part is the waiting and not being able to plan. I think that’s a mistake a lot of people make when they get sick or go through hard times. They often wait to start living after they are diagnosed, and they even expect to come back to “normal.”

But there is no “normal” anymore. We change too much and we can´t wait to live until after. Instead, we have to grab life even more now and make sure to get the fullest and most of it.

I’m 40  and I admit up until now, I have spent a lot of time seeking other people’s approval. I no longer seek it anymore. I decided to start doing all the things I found interesting — I started working with fashion again, I started studying and I exercise every day. My low self-esteem has been replaced with energy, and I have — ironically enough — finally started living.

When I lost my voice last year because one of my vocal cords was severely damaged, I got depressed. A big part of my personality was talking. But I gave myself a voice online, and when I started relaxing, my voice came back.

The anger and mental struggling I have felt most of my life has been replaced with joy and optimism.

I don’t know what the future brings. At my last check-up the tumor marker had increased, and it looks like it spread to my arm. I already had one surgery there, so there is some numbness, and they told me I could loose more mobility in it.

But if that happens I will find a way to write about it with one arm. Or maybe I’ll start a video blog.

No matter what, I will find a way.

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Thinkstock photo by bersigns


My name is Line. I’m 40 years old, have two wonderful kids and a loving husband whom I just celebrated a 10- year anniversary with. In many ways I have a picture perfect life on the surface. But I have always struggled with depressionself-harm and pain.

When I was 3 years old my Korean mother decided to choose adoption, and 20 days before my 4th birthday I was adopted to Denmark to a wonderful loving family.

Four years ago I was diagnosed with thyroid cancer — “the good cancer” — which everyone told me was fairly easy to be cured and had a low fatality rate. So on the surface, to my friends and family, I seemed somewhat “normal.”

I had my first surgery that removed my thyroids. Doctors found three tumors, but they were a bit vague about exactly what else they found. Still, I was pretty optimistic. After all I thought it was the “good cancer,” and I didn’t want to worry my family and friends too much. When I realized I had to have more treatment I remember sitting in the car for about a hour, listening to Johnny Cash and reflecting on my life.

Even when someone says you are sick, it is still very surreal to believe. I ran my first half marathon the day after. I was not a strong runner, but I’m exceptionally stubborn. And I somehow convinced myself if I could run a half marathon my body could do what ever I told it to!

I had my first radioactive iodine treatment, after which I had to stay in isolation for quite some time because my kids at that time were only 8 months and 2 years old. I stayed away from my family for four weeks, only seeing my husband one hour a day. It was a very depressing time, but I kept active by running and working to keep my mind busy.

After some time my oncologist concluded the treatment had not worked, so he wanted to do it again but on a higher dose. During this time I had also ruptured a ligament in my ankle. So I decided to prepare for the second treatment and have double ankle surgery. This time I was even more limited on crutches and had six weeks of isolation from my family, plus I had four weeks without my hormones (the ones which compensate for my missing thyroids).

This was the worst and hardest thing I have ever tried — constant pain, isolation from people and constantly depressed. Unfortunately, in the middle of my isolation period, I found out the second treatment didn’t work either.

About two years ago one of my good friends convinced me to get a second opinion in London. I found out I have the rare version of thyroid cancer, where I’m immune to radioactive iodine (making it almost impossible to trace or get rid of). They also instantly found four more tumors, so I got yet another surgery in the neck where they removed 21 lymph nodes. Nine of these were cancerogenic. One of these was very close to the chest area so they scheduled me for a split sternum surgery.

I have now had in total six surgeries related to cancer, two ankle surgeries, two radioactive iodine treatments, two-and-a-half months of isolation from my family, 28 radiation beams to my neck, I have been flying back and forward between Malta and other countries 30 times, and I’ve spent more than 130 days in hotels.

Despite all of this I am OK.

Yes it sucks to have cancer. But I have made the best out of this situation. I keep active and busy, even on the days I lie on the floor throwing up blood. I have co-founded companies. I walk or bike a minimum of one hour a day. I do my best not to look or feel sick. I want to look back at a person in the mirror who can kick cancer’s ass.

I don’t get better or live longer staying in my bed feeling sorry for myself. I know I will never be 100% cured, but if I’m lucky I will have breaks from surgery and treatment. A lot of people write to me and tell me how sorry they feel for me. Don’t! Don’t pity me! Because I can promise you — very few people enjoy and love life more than I do.

Last year I decided to stop making excuses for myself and start pursuing some of my biggest dreams, one being finding my Korean mother. Then the strangest thing happened —  three months into the search I was contacted by an American-Korean girl who was the daughter my mother had 10 years after me (and whom I, for obvious reasons, never knew about). I flew to the U.S. to meet her, her family and our little brother. And for my 40th birthday my sister and Korean mother came to Malta, Europe, where I live.

I think I will always be sick, and I will probably always have my periods with my depression, but I have decided to get the most out of the good days and to pursue life. So I signed up for university, I plan to make myself a herb garden and found (I think) a way to help a lot of people.

Line Peter Patient Photo

The only advice I can give: don’t wait to get sick to fully live your life. Don’t fill your life with things that slowly eat you up. You have one life so make the most of it. Live, love, make mistakes and learn from them. But mostly, learn and develop and be the person you want to be — instead of just talking or dreaming about it.

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