Thyroid Cancer Patient Profile: Beena Patel

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As Beena Patel shares the story of her thyroid cancer journey and path to becoming an integrative medicine professional personified, it becomes clear that she’s making a positive impact to many patients and to those seeking wellness. In her professional life, she works as an oncology physician assistant, holistic life & health coach, yoga teacher, and energy healer. Beena shares the initial feeling that sparked her passion for patient empowerment, “I felt like I’m meant to do this. And I had even more of a fire in me, like I’m going to help people, and I’m going to help cancer patients feel empowered over their care.” 

Beena’s cancer journey began when she was 21 and in Montreal celebrating post-college accomplishments with a group of friends. They were mainly driving to festivities and eating a lot of food. She felt like she must have gained 5 pounds, but found that she had actually lost 5 pounds after she was back home. She was in physician assistant school at the time and told her doctor about her weight loss, which prompted her to check her neck and thyroid. Her doctor said her thyroid felt palpable and decided to do further hormone testing, radiological testing, and an ultrasound. Something abnormal was found in the testing, which was followed up with a biopsy that confirmed diagnosis of thyroid cancer. Beena was shocked with her diagnosis at such a young age and felt unsettled with the timing for it to happen when she had just started physician assistant training.

Traveling back and forth between her doctor’s office and the hospital felt overwhelming for Beena. “It was a lot for a young woman and a woman of color, to see not only how painful it is to go through any type of diagnosis, let alone cancer, and having to feel so alone throughout the process. Also seeing how people do pass you off when you’re a young woman of color, and I would say a woman of any age, but I think women who are younger, trying to navigate life, and figuring out your path. And then you get a diagnosis and you’re like, ‘No one understands me,’ so it was a lot to handle.”

Beena’s thyroid cancer treatment included a total thyroidectomy to remove her entire thyroid gland. Her care team also tested some lymph nodes at that time, but didn’t find anything concerning. “I didn’t get radioactive iodine, but then three years later, I did have a mild recurrence, so they did do radioactive iodine at that time.” Beena is now doing well and takes thyroid replacement therapy to maintain her metabolism and other thyroid-related processes.

Empowering herself has been a vital piece of Beena’s patient journey. She felt like her first doctor on her cancer journey wasn’t really listening to her, so she found a different doctor. “You have to find the right fit. It’s like dating. Don’t settle until you feel like you not only have the scientific background, but the right doctor who has clinical expertise, who you feel has clinical knowledge and compassion, as well as the time to spend with you and to educate you as a patient. Your doctor should make you feel seen, heard, and understood. It’s a relationship that you’re creating with this provider, so it’s very important to find a good fit.” She also feels patient resources like NIH.gov, clinicaltrials.gov, and the Patient Empowerment Network (PEN) website are valuable in the process of patient education and empowerment.

Beena had to start physician assistant school a second time after her cancer became too disruptive, and she felt she became empowered at that time. She went through a difficult breakup about 6 months earlier and was feeling disconnected from her body. Yoga and meditation helped her cope with stress, but she was looking for something deeper. She found a Reiki practitioner in New York City and received a treatment for the first time. “I just felt like I transcended everything that I’d gone through in the last decade. I just felt good and calm and at peace. And so when I felt that, I knew I had to share that with patients, I knew there was something deeper.” After she was at Columbia University Irving Cancer Research Center for a few months, Beena had already started doing patient consultations with integrative medicine, and her patients were very responsive to the consultations.

 “Many patients aren’t aware of Reiki, or they don’t know that yoga is available to them, but I started doing consultations to educate them. They were willing to try something new, since we weren’t replacing the medication.” Beena realized that she had a gift with patients as she was able to bring peace when they were stressed or had a panicked look on their face. She also recalls during her cancer journey that a medical fellow actually lied to her about the diagnosis and seemed uncomfortable in telling Beena the actual diagnosis. “Some people don’t know how to be comfortable with emotions, because they weren’t taught emotional intelligence. And so I learned that when I would go into the room with a patient, I would hold it together even when I didn’t know what I was doing.”

Beena would request that someone else accompany her in the room, like another provider who was more experienced. She would maintain her calmness and return to her center, and she attributed that ability to her daily meditation practice. She would tell the patient to take a deep breath, and she could watch their heart rate decreasing in real time. The patients would become calmer. “So even if there was an emergency, I could hold it until the intensive care unit (ICU) or someone from another department came in to check on the patient, and it’s like we have that power to help people just by being emotionally and mentally balanced.” And when Beena went to Memorial Sloan Kettering Cancer Center, they were more supportive of integrative medicine. “Music therapists would come, and they had yoga nidra (yogic or psychic sleep) at nighttime and Reiki. They had a patient population that was more aware and educated about integrative medicine, so they would ask for it.”

Patients would request to do a technique like yoga or breath work before they went for radiation treatment in the hopes that it could eliminate the need for anxiety medication. “Sometimes it would work and other times it wouldn’t. Some would pass out at their radiation treatment. So we adjusted things to a combination of breath work and meditation and decreased the anxiety medication dosage. Patients loved having that ability to manage their care from an empowered standpoint.” Beena would also run the integrative medication combination by the care team to keep them informed about the patient.

Integrative medicine is at Beena’s core of medical values that use a mixture of Western and Eastern medicine techniques. She helps patients understand the energetic root of the issues that are happening in the body. “I do think in the future there could be more Eastern philosophies, I think we could get back to energy healing and understanding root causes, the ancient medicine that was passed on from our ancestors.”

Beena is grateful that she is feeling healthy and for the different ways that she’s able to help patients. As for her other advice for cancer patients, she recommends advocating for yourself for the sake of your health. “Be open to ask for support. It’s your body and your health. And be open to us for support, be open to ask when you don’t understand something, and let us know about any supplements that you take. If you feel like you don’t have a good relationship with your healthcare team, be willing to do empowered research and go to the person who you feel comfortable with and who you feel understands you.” 

Navigating Thyroid Cancer: Tips from Someone Who’s Been There

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So you’ve been diagnosed with the “C” word, specifically thyroid cancer, and now you’re seeing a whole new care team. This usually includes an endocrinologist who specializes in disorders of the endocrine system, including the thyroid. As a patient who has been living with thyroid cancer on and off for the past 5 years, here is a non-exhaustive list of tips about treatment and how to manage, including questions to ask your care team and tips for your appointments as you go along your own cancer journey.

11 Tips for Navigating Thyroid Cancer

  1. Have a good relationship with your endocrinologist, as they will be treating you for life. 
  2. Make sure your values, morals, and opinions are respected as part of the treatment process. The cure isn’t the only part of the cancer journey. 
  3. Ask about different treatment options (i.e. surgical removal). 
  4. Inquire about potential side effects of each treatment and how to mitigate them, especially if you undergo chemotherapy and/or radiation. 
  5. Ask for clarity on medical jargon, such as thyroid-specific blood tests. 
  6. Bring in a list of questions to each appointment. 
  7. If possible, have a caregiver, such as a family member or friend, come with you to each appointment as a second set of eyes and ears. 
  8. Join support groups that are available both online and in-person. 
  9. Utilize your patient portal, if you have one, for messaging your care team, renewing prescriptions, and viewing lab and ultrasound results. 
  10. If you end up having to take synthroid, keep a diary or log of how you feel at each dose to be able to report back to your care team. 
  11. Advocate for yourself if something doesn’t feel right. 

As a patient in a new and very unique environment with a disease you never thought you would get, knowing how to navigate this beautiful, yet terrifying journey is hard. However, if you stick to your values, ask questions, create a strong relationship with your care team, and advocate for yourself, it’ll make the process a lot smoother. 

Patient Profile: Vanessa Steil

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“PEN builds community and empowers you to be your own advocate.” – Vanessa Steil, thyroid cancer survivor and patient advocate.

When Vanessa Steil recounts how she was first diagnosed with thyroid cancer, you can tell it is a story she has told many times. The dates, the terminology, and which doctor told her what and when are all precisely chronicled in her memory. Yet it took her reflecting on her story as a survivor to process just how crucial all of the details were. Now, she’s passionate and committed to helping others, and she has dedicated much of her time—and career— over the past eight years to doing just that.

It all started in March 2013 during a routine visit to the gynecologist. The doctor, who performed a neck check as part of the exam, felt a lump on the right side of Vanessa’s thyroid. “I was taken off guard by the whole thing,” she says. She tried to convince herself that the lump was nothing serious, but she followed the doctor’s advice for further testing, and a month later was diagnosed with papillary thyroid carcinoma: thyroid cancer. She was 26 years old. “My whole world changed with just three words. In an instant, I went from feeling like a normal person to having to absorb all this new medical jargon,” she says.

It was a difficult time for Vanessa. She was young, she didn’t know anyone else her age who had cancer, and she didn’t know anyone with thyroid cancer. While she had support from friends and family, at the end of the day she felt very much alone. As the weeks passed by and her mind raced on, she began to second-guess her diagnosis, question whether she should have surgery, and considered having another biopsy. “I had to work through the emotional aspects of my diagnosis, including coming to grips with the fact that I had thyroid cancer and the fear I felt about the outcome,” she explains. “You have to be in a positive place when you are going to have surgery.” Fortunately, her cancer was not overly aggressive, and she was able to delay the surgery until she felt more prepared.

By June 2013, she was ready for surgery and had a total thyroidectomy that included the removal of six lymph nodes, one of which was positive for cancer. The surgery was successful, and so far, she hasn’t required any radiation therapy, a common follow-up treatment post thyroid cancer. While in 2017 her antithyroglobulin levels, a marker that can be used to monitor a possible cancer recurrence in those with an autoimmune condition, went up and remained that way, she continues to be monitored. Her bloodwork and scans are done twice a year, and once a year she has a neck ultrasound; each time she experiences what survivors call “scanxiety” until she gets an all clear from the results.

When Vanessa was diagnosed, her endocrinologist gave her a key piece of advice that she didn’t completely understand at the time, but it stuck with her, and the meaning soon became clear. He told her, “Don’t turn this diagnosis into a research project.” As someone who is naturally curious and was eager to learn all she could about her disease, as soon as she was diagnosed, Vanessa took to “Dr. Google” looking for information and answers, but she wasn’t always finding helpful information. “While online, I was landing on horror stories,” she says, adding that while it is important to be knowledgeable about your disease, it is imperative to get accurate information and to be careful about choosing which sites or social media outlets to use as resources. “The Internet can be a scary rabbit hole, and it can cause unnecessary worry,” she says. “Finding a reputable site, like Patient Empowerment Network (PEN), that’s done a lot of the legwork for you and has comprehensive resources available is invaluable,” she says. Vanessa especially appreciates that PEN helps prepare patients for doctor visits by providing a list of questions to ask and offers relevant insight to caregivers, and survivors. “I was impressed with the PEN content, because it helps the patient from diagnosis to recovery,” she says. She also recommends sites that offer a sense of community where you can interact with other patients who have had similar experiences. “PEN builds community and empowers you to be your own advocate,” she says. “You have to know your body and speak up for yourself. That’s where the community aspect comes in. As a survivor, I try to provide that sense of community for others.”

After her surgery, Vanessa found a creative outlet that allows her to provide support for others and helped her through her own recovery. She created a lifestyle and wellness blog, Living in Steil (pronounced style), where she shares her personal journey and favorite resources as well as beauty, food, fitness, and health and wellness information. She says she was inspired to start the blog in February 2014, while recovering from surgery and trying to put the pieces of her life back together. “You don’t often process the emotional aspects of cancer until later,” she says. “It’s been cathartic to blog about my experience and have the site resonate with so many other patients and survivors.”

Her work as a blogger has led to many more opportunities to share her story including being asked to participate in a book, Tough: Women who Survived Cancer by Marquina Iliev-Piselli and collaborations with other advocacy groups in the healthcare space. In addition to her blog, Vanessa is a health coach and Board Certified Patient Advocate who also works for a pancreatic cancer foundation where she manages public relations and social media. She credits her diagnosis with helping her find her career niche and a meaningful role that allows her to make a difference in the lives of patients every day.

As far as her cancer is concerned, technically she is in remission, but says she is vigilant about staying on top of her health. “I have never taken my survivor status for granted,” she says. She continues to be her own advocate and has found that sometimes means she needs to find new doctors. If they are not listening to her or are not open to communication, she knows it’s time to move on. “It’s important to find a doctor who takes your concerns to heart,” she says.

Through Vanessa’s own experience with cancer, she’s learned a lot about advocating for herself and others. Vanessa has experienced firsthand what works and what doesn’t, and she is grateful to be able to share her knowledge. “If I can bridge the gap for people with a cancer diagnosis and make it easier for them to get the resources they need, then that is rewarding for me,” she says. “I had a difficult diagnosis, but I learned from my challenges and now I can share that knowledge with others. I can’t think of a better way to pay it forward than that.”

Read more about Vanessa and follow along with her journey at www.livinginsteil.com or on social media at @livinginsteil.

Read more patient stories here.

“Wait, There’s a Good Cancer?”

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When the Luck of the Draw Leads to the Short End of the Stick

Cancer is one of the most feared diseases. Everyone is affected by it in some way, but no one really imagines getting it themselves. So imagine hearing that you got the “good” cancer, a commonly used term for thyroid cancer. That can’t be right. Cancer is cancer…isn’t it? But who are we, as patients, to question what our doctors tell us? They’re the ones who went to medical school and have years of training. But maybe thyroid cancer isn’t that bad?

That’s what I thought when I was told that my cancer was the “good” one by more than one doctor. In fact, one doctor told me that thyroid cancer was “the cancer to have if you had to get it.” I didn’t have any symptoms at the time, so I took these words, spoken to me by medical professionals, as truth. Unfortunately, I learned that there was no such thing as a “good” cancer once I began treatment.

While thyroid cancer is slow-growing, does have a very good prognosis, and can be easily treatable, no cancer is the same. For example, I had the papillary variant of thyroid cancer, a common diagnosis amongst most thyroid cancer patients. I underwent surgery to remove half of the thyroid with the tumor, but my treatment didn’t end there. It was discovered in the pathology report that I had metastasis that was not shown on the original ultrasound that showed the tumor in my thyroid. As a result, I had to undergo a second surgery for the removal of the remaining half of my thyroid. Additionally, I was told by my surgeon that, because of the metastasis, he didn’t know if cancer could be elsewhere in my body, and I would need to undergo oral radiation therapy. “Wasn’t this the ‘good’ cancer?” I thought over and over.

Furthermore, what doctors don’t explain, at least very well in my case, is what not having a thyroid is going to be like. I wasn’t aware of what a thyroid was nor its functions when I was told that it was harboring a tumor. Nor did I know until I had to be placed on a supplement, or rather a replacement, for my lack of thyroid. I learned quickly that the thyroid essentially interacts with every other system in the body through controlling metabolism, heart rate, temperature, energy level, etc. My body slowly adjusted to this new medication with a prescribed dose that was initially “simply a guess” based on my age, weight, and overall health. From there, my healthcare team and I adjust the dose based on how my body responds. If I think about this, especially as a woman, my body goes through many changes as I age, and I’m sure many of them are affected by a properly-functioning thyroid, which I no longer have. I’m not saying that I’m not eternally grateful for their actually being a supplement I can take to, quite literally, live, on a daily basis. What I am saying is that the stigma and the choice of words and phrases surrounding this cancer, perpetuated by medical professionals needs to stop. At the very least, they need to recognize thyroid cancer as a cancer, a diagnosis that inevitably impacts the life, good or bad, of every patient who has this terrible disease well into survivorship.

If you’re a thyroid cancer patient, whether newly-diagnosed, in treatment, no evidence of disease (NED), or anywhere in between, educate and advocate for yourselves. Find doctors who take the time to understand your wants and needs as an individual human being. Never think that your cancer is “less than,” because it matters.

What’s the Difference Between Hypothyroidism and Hyperthyroidism?

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This article was originally published by the US News on April 19, 2019 here.

The two conditions have similar-sounding names but are actually quite different.

IN THE WORLD OF medicine, many conditions have names that may seem unfamiliar to English speakers. Some of these diseases have names borrowed from other languages, and Greek is a usual suspect when it comes to terms that may not be immediately recognizable to many of us.

This is true for two common medical conditions that have to do with the thyroid gland. The terms hypothyroidism and hyperthyroidism describe two problems that can arise in the thyroid gland – a small, butterfly-shaped structure in the neck that produces hormones that regulate a wide range of bodily functions. At first glance, these words may seem identical. But a tiny change in a couple letters alters the meaning of the two terms substantially, referring to two different conditions.

What Is Hypothyroidism?

In Greek, “‘hypo’ means low or below normal,” says Dr. Joseph Wanski, an endocrinologist with L.A. Care Health Plan in Los Angeles. “Hypothyroidism defines the clinical condition of low or underactive laboratory levels of the thyroid hormone because the thyroid gland does not make enough” of the hormones that the body requires.

These hormones are important because they’re involved with all sorts of bodily functions from how the heart works to how fast your metabolism runs. “The thyroid gland in the neck manufactures a protein called thyroid hormone, which is crucial to the day-to-day function of every cell in the body,” says Dr. John Duncan, pediatric endocrinologist with Health First Medical Group in Melbourne, Florida. “Without it, all chemical functions within the cell slow down.”

Therefore, the term hypothyroidism is used to describe a state of inadequate levels of thyroid hormone, and it “accounts for the majority of issues people experience with their thyroid gland,” says Dr. Brian Jameson, an endocrinologist with Geisinger in Danville, Pennsylvania. “Hypothyroidism is also known as underactive thyroid. In other words, everything in the body slows down. When levels of two key thyroid hormones, thyroxine (T4) and triiodothyronine (T3) are too low in the blood, people experience symptoms.”

Symptoms associated with hypothyroidism include:

  • Fatigue.
  • Dry skin and hair.
  • Brittle nails.
  • Slowing of bowels or development of constipation.
  • Weight gain.
  • Puffy face.
  • Muscle cramps.
  • Irregular, infrequent or heavier than normal menstrual periods.
  • Forgetfulness.
  • Depression.
  • A hoarse voice.
  • Pain, stiffness or swelling of the joints.
  • Muscle weakness, aches or stiffness.

If hypothyroidism occurs in a child, it can result in short stature. In teenagers, it may cause an “alteration of pubertal characteristics,” Wanski says. Duncan points out that although being overweight is sometimes blamed on so-called glandular issues, AKA hypothyroidism, “not all individuals with excessive weight will be hypothyroid.”

What Is Hyperthyroidism?

At the other end of the thyroid spectrum is hyperthyroidism, in which the thyroid becomes overactive and generates too much thyroid hormone. “Hyperthyroidism is also known as overactive thyroid,” Jameson says. “In other words, everything in the body speeds up. When levels of two key thyroid hormones, thyroxine (T4) and triiodothyronine (T3) are too high in the blood, people experience symptoms.”

This overstimulation of the thyroid gland results in “a massive surplus of thyroid hormone. This accelerates all the chemical functions and all the cells,” Duncan says. This condition can cause a range of symptoms including:

  • Sleeplessness.
  • Rapid heart rate.
  • Heart failure.
  • Weight loss.
  • Tremor.
  • Bulging eyes or a fullness in the front of the neck.
  • More frequent bowel movements.
  • Seizures.
  • Heart disease.

Hyperthyroidism may also cause “an assortment of other undesirable clinical consequences,” Duncan says.

What Causes Hypothyroidism and Hyperthyroidism?

Duncan says that in most cases, these diseases are caused by “aberrant immunity cell function where white blood cells ‘attack’ the thyroid, which triggers under-function or over-function of the gland. However, there are infants who can be born without a thyroid gland (congenital hypothyroidism)” or the thyroid can be underdeveloped or “located in the wrong place,” Jameson adds. With hyperthyroidism, “there are infants who can inherit the immunity proteins and be born with hyperthyroidism,” Duncan says.

With hypothyroidism, “the most common cause is an autoimmune disease called Hashimoto’s thyroiditis,” Jameson says. “This disease causes the immune system to mistakenly attack a healthy thyroid gland. As a result, the thyroid becomes inflamed and is no longer able to make enough thyroid hormones. It may also become enlarged and develop lumps and bumps known as nodules.” Wanski adds that other causes of hypothyroidism include:

  • Radiation to the thyroid.
  • Thyroid surgery.
  • Damage to the pituitary gland, a pea-sized structure behind the nose at the base of the brain that regulates hormones throughout the body.
  • Certain medications.

The National Institute of Diabetes and Digestive and Kidney Disease reports that an autoimmune disorder called “Graves’ disease is the most common cause of hyperthyroidism in the United States. Wanski says other causes of hyperthyroidism include:

  • The development of a nodule or lump (or multiple nodules) in the thyroid gland that begins to produce excess hormone.
  • Certain medications.
  • Viral infections.

Jameson adds that in some cases, thyroid nodules can begin producing hormones when they shouldn’t, a condition called toxic nodular goiter. “Thyroid inflammation, also known as thyroiditis,” may also lead to the development of hyperthyroidism

Who’s Likely to Develop Thyroid Problems?

The American Thyroid Association reports that “more than 12 percent of the U.S. population will develop a thyroid condition during their lifetimes.” And because an “estimated 20 million Americans have some form of thyroid disease,” it may be something you’ll have to deal with at some point.

Although anyone can develop a problem with the thyroid at any age, there are a few risk factors that may make a thyroid issue more likely, including:

  • Being female.
  • Having recently been pregnant.
  • Being 60 or older.
  • Having a family history of thyroid or autoimmune disease.
  • Having a personal history of thyroid problems or surgery.
  • Having an autoimmune disease.

Duncan says problems with the function of the thyroid gland are “far more common in women than men,” ranging from 5 to 8 times more likely to develop in females. “Approximately 5 percent of women will eventually develop a thyroid problem.”

How Are These Conditions Diagnosed?

If hypo- or hyperthyroidism is suspected, your doctor will perform a physical examination and take a thorough medical history. A blood test can determine whether your body’s level of thyroid hormones is in the normal range or too high or too low.

Sometimes, your doctor may find a goiter upon examination. This is the term used to describe an enlarged thyroid, which may be obvious as a lump on the side of your throat. A goiter can be a sign of any issue with the thyroid, including hypo- or hyperthyroidism, cancer or simply a lack of dietary iodine. (Iodine is routinely added to table salt in the U.S. to help ward off this issue.)

If signs of hyperthyroidism are found, your doctor may want to conduct additional tests, including:

  • Radioiodine uptake test, in which a small dose of a radioactive iodine is administered and the amount that’s absorbed by the thyroid is measured.
  • Thyroid scan, in which a radioactive iodine isotope is injected and a camera creates an image of the thyroid once the isotope has been absorbed.
  • Thyroid ultrasound, in which sound waves are used to create an image of the thyroid.

Although your primary care physician may be able to diagnose and manage many thyroid issues, some patients may need to see an endocrinologist – a specialist doctor who focuses on diseases affecting the endocrine system and hormones.

How Are These Conditions Managed?

Both hypo- and hyperthyroidism can be dangerous, and “if left untreated, hypothyroidism can lead to unconsciousness and death,” Wanski says. On the other hand, hyperthyroidism “can cause significant weight loss, infertility, a heart irregularity called atrial fibrillation and double-vision.”

Therefore, it’s important to get appropriate medical care if you have either condition. “If you’re feeling unwell and experience any of the common symptoms of a thyroid problem, talk to your doctor,” Jameson says. “Treatment is relatively simple and can help you get back to feeling like yourself again.”

Depending on which condition you’re dealing with and what’s causing it, you may have a few options for treating it.

“In hypothyroidism, tablets of thyroxine – synthetic thyroid hormone identical to negative thyroid hormone – are administered daily and monitored through blood testing,” Duncan says. These medications restore normal levels of hormones and alleviate many of the symptoms of hypothyroidism.

With hyperthyroidism, the treatment may be somewhat more complicated. “Being multifactorial, hyperthyroidism may require one or more therapies,” Duncan says, but “the goal is to diminish or eliminate the overproduction of thyroid hormone.” Treatment options may include:

  • Anti-thyroid medications. These drugs slow the production of excess amounts of hormones.
  • Beta-blockers. Although usually used to treat high blood pressure, these medications can treat some of the symptoms of hyperthyroidism including tremor, palpitation and rapid heart rate.
  • Radioactive iodine. This approach destroys some or all of the thyroid to stop the overproduction of thyroid hormones.
  • Surgery. A thyroidectomy may be undertaken in certain instances to remove most of the thyroid gland and possibly the parathyroid glands, and Jameson says this approach may be a better option for pregnant women or “people who are unable to tolerate other medical treatments.” This approach will necessitate the use of medications for the rest of your life to replace the hormones that can no longer be manufactured within the body.

The most common treatment for hyperthyroidism tends to be radioactive iodine, which is typically administered as an oral pill, and may only require a single dose to be effective. Iodine is an element that is “essential for proper function of the thyroid gland, which uses it to make the thyroid hormone,” the American Thyroid Association reports. The thyroid absorbs iodine, and if it is radioactive, this can shrink or destroy the gland. This therapy is also sometimes used to treat thyroid cancer.

If the treatment destroys the gland or suppresses the thyroid too much, you may develop hypothyroidism as a side effect, but this can be addressed by medications that replace the loss of needed hormones. Hypothyroidism is generally considered easier to treat than hyperthyroidism.

Regardless of which condition you’re being treated for, it’s important to seek appropriate care, especially if you have other medical conditions, as “those may also be adversely affected by the problem until therapy has been introduced,” Wanski says.

The same is true for hyperthyroidism, which can have significant health consequences if it’s not addressed properly. If it’s “left untreated long enough, it can even cause seizures or severe heart disease,” Duncan says.

Jameson adds that “thyroid cancer is also a concern” in people with thyroid problems, particularly those with hypothyroidism. “Thyroid cancer is relatively common, and about three times as many women get thyroid cancer as men. It generally occurs in the nodular goiter of hypothyroidism but can be seen in people whose glands function properly. It’s rare to see thyroid cancer associated with hyperthyroidism.”

Even though it can happen, Jameson says you shouldn’t panic about developing cancer if you’re diagnosed with a thyroid problem. “Thyroid cancer is a very treatable cancer in most instances, usually with surgical removal of all or part of the thyroid and subsequent radioactive iodine tablets to treat the remaining cancer afterward.”

Communicating About Cancer: A Brief Guide to Telling People Who Care

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Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Thyroid Cancer Empowerment Lead

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The drip-drip-dripping of the sink in the radiology room echoed loudly in my brain as I waited for the pathologist. I just had a biopsy done for two spots on my neck—one suspected to be cancerous. “A nodule,” my primary care physician had previously explained at my annual physical. The radiologist had comforted me, casually saying, “I wouldn’t worry, though. There’s only a ten to fifteen percent chance.”

In just a few minutes, I would be given my fate.

In January 2017, I was diagnosed with thyroid cancer. I met my surgeon five months later. “What you have is called a papillarycarcinoma,” he said. “Doesn’t cancer come from tumors?” I thought. I looked up some terms in the National Cancer Institute’s Dictionary of Cancer

  • Nodule – A growth or lump that may be malignant (cancer) or benign (not cancer)
  • Carcinoma – cancer that begins in the skin or in tissues that line or cover internal organs
  • Tumor – an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancer) or malignant (cancer). Also called neoplasm.

The dictionary helped, but why weren’t these words explained to me by the doctors? It sounded like all the terms were being used interchangeably, and my brain was already feeling corrupted by the diagnosis—I was struggling to comprehend my diagnosis.

My bewilderment grew as I tried to understand how the thyroid hormones, T3 and T4, worked together with thyroglobulin (a biomarker), and the pituitary gland located in the brain. I understood what hypothyroidism vs. hyperthyroidism meant, but only because I knew the symptoms of each, and would be able to tell my doctor if I was experiencing any of them.

I was told by multiple doctors that I had the “good” type of cancer, and I felt hopeless and quite stupid for asking them to repeat what they had just said, or for asking them to explain a term or biological process in a different way.

Coincidentally, I had just started my fourth month of graduate school in a program focused on health communication—one of my first classes was writing for health communicators. That’s where I learned that, as of 2003, when the U.S. Department of Education measured health literacy of various populations across the country

  • Only 53% had intermediate health literacy, or “having the skills necessary to perform moderately challenging activities.”
  • 12% had proficient health literacy, or “skills necessary to perform more complex and challenging literacy activities.”
  • Which means that more than 40% of the population is only able to understand the basics of their health.

It only gets worse for people living in poverty, the elderly, and racial minorities.

So how can we create health literacy equality among all populations?

The answer lies with patient advocacy and patient empowerment.

The doctor-patient relationship has changed significantly—for the better. Where once a patient relied on their doctor for information, to learn about a condition or a symptom, today, patients are finding this information online—and bringing their knowledge to appointments. They’re asking questions about their health and treatment paths. Some are even looking for answers about things that the doctor may not have heard of…yet!  

As a health care professional, are you:

  • Using terms that are patient-friendly or that are at grade level?
  • Using pictures or diagrams to simplify complex concepts?
  • Asking questions to make sure patients understand your instructions?
  • Explaining test results, documents, brochures, etc.?

Most importantly, are you taking the time to listen to the patient’s concerns, and addressing them in a clear, understandable manner?

When doctors and health care providers take time to engage with them, patients feel more empowered to take charge of their health, and to become their own advocates. When the fearful become fearless is when real change happens.

Deceived But Not Defeated

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I never felt any symptoms. I mean, I was tired, but what young 20-something who had just started graduate school while maintaining a full time job wouldn’t be? It happened during a physical. A lump towards the top of my throat was felt by my doctor. “I would go and have that scanned,” he said. I wasn’t worried; he had never mentioned cancer. So I went and had the ultrasound. “Well, we see what your doctor was talking about, and it appears to just be a cyst,” the doctor said, “but there’s another spot on the right side of your thyroid. You have two options. You can wait to see if the spot grows or we can perform a biopsy to see if it’s cancer,” he explained. “Now, the chance of it being cancer is anywhere between 10-15%, a very very low chance,” he reassured me. “I want the biopsy,” I said, not wanting to take any chances. The biopsy was performed, and within minutes, the doctor returned saying he had bad news. “Unfortunately, it’s cancer, but the good news is that it’s very treatable. I recommend you having surgery.” And that was it; although, it hadn’t hit me, at least not as hard as I thought it should had – at least not immediately. I went to my car, called my mom, and asked her if she was sitting down. I told her the news, still shocked by the ordeal I was just handed. In an instant, my life had changed forever. I heard those three words no one ever wants to hear, “You have cancer.”

I wasn’t sure how to proceed. How advanced is my cancer? What doctor(s) do I go to? How quickly do I need surgery? I just started school – do I need to drop-out already? What about my job. All of these thoughts raced through my mind. However, the support of my family and, luckily, not having any symptoms kept me going. I was working in a hospital at the time, and I spoke with a few of the doctors I worked with. “Oh, the good type of cancer. You’ll be just fine,” one said. “‘Good type?’” I thought. What is good about having cancer? He gave me the name of a surgeon who specialized in thyroidectomies. It was a five month wait to get in.

When I eventually saw my surgeon, he gave me two options. The first, he explained, was a partial thyroidectomy. “We’ll only remove the lobe of the thyroid where your tumor is. The benefit of that is that the other lobe will continue producing enough of the hormones that your body needs so you don’t have to take a medication for the rest of your life. The second was a total thyroidectomy, rendering me to that medication, literally, for a lifetime. I went with the former, and had a successful surgery. Of course, it didn’t end there.

Two days after my surgery, my doctor called. “We performed pathology on some of the lymph nodes that we removed from your neck, and unfortunately, almost all of them had cancer. What this means is that we need to have you come back and perform another surgery to remove the rest of your thyroid. Then after, you’ll have to undergo radioactive iodine to rid your body of any residual thyroid tissue.” My heart sunk. My world was crushed yet again. Another surgery? What was radioactive iodine? I didn’t how to process the emotions that I was feeling as tears streamed down my face. “It never ends,” I thought.

After my second surgery, I was thyroid-free. Later, I went through the radioactive iodine procedure where I had to be a specific diet for approximately 3 weeks. I could consume very little to no iodine, or salt, which was essentially in every product. As I went up and down the grocery store aisles reading every nutrition label, I found myself frustrated finding almost nothing that I could eat. Don’t get me wrong, this was a very healthy diet, as I was essentially restricted to meats (without seasonings), fruits, and vegetables. But it wasn’t my favorite. I went to a nuclear medicine center where I consumed a pill that would make me radioactive. I was to stay physically away from people for approximately one week, slowly decreasing the amount of feet I could be within others as each day passed. I then had a whole body scan that showed that the cancer hadn’t spread, or metastasized, to any other place in my body, but there was still some residual thyroid tissue that the radioactivity would hopefully kill.

The journey continued. I would need to be on a medication for the rest of my life. I would need to see a specialist, an endocrinologist, for the rest of my life. They would decide the dosage of my medication based on a variety of factors, including how I was feeling emotionally and physically. It wasn’t until after I had my thyroid removed that I realized how much it does for our bodies. “It will take some time before we find the right dosage for you,” my endocrinologist explained. In other words, sometimes I would be hyperthyroid, other times, hypothyroid. My symptoms may be all over the place, including my metabolism rate, my body temperature, and even my mood. As a patient with chronic depression and anxiety, I could only hope that the “right” dosage would be found quickly.

Fast forward two years later from my diagnosis, and I have been deemed “cancer free,” no more thyroid tissue. While I am incredibly thankful for this result, I can’t help but feel survivor’s guilt. I often think, “Why me? Why did I get to survive and others don’t? How did I get by so easily?” Despite this guilt, I have used my cancer diagnosis and journey to become stronger both mentally and emotionally. I have unashamedly shared images on social media and written stories that have been published in the hopes to inspire others and to be an advocate for those who don’t feel like they have a voice. Yet, I don’t pretend to know everything. I still have questions that remain unanswered. How likely is my cancer to come back? Why do I keep losing so much hair? Why am I always so tired? Despite having the “good” type of cancer, there is nothing that great about it. Although I never had symptoms, I still went through two surgeries and a radioactive iodine procedure, which had its own side effects.

As a result of what I went through and my never-ending passion for helping others, I believe that my diagnosis happened for a reason – to lead me to a career in patient advocacy. I have a background in health administration, policy, and communication. I have worked at doctor’s offices and hospitals. I feel I had an advantage in having the knowledge that I did/do, and access to physicians. However, I still get confused when I ask my doctor a question, and I receive an answer that’s in medical jargon. I think, “I can’t be the only one who feels lost, who feels confused.” Plus, I know that there are patients who are going through worse situations than I did. There has to be a way to mend the physician-patient relationship that is currently suffering. There’s not enough time dedicated to each patient, to hear what they’re going through each day. Physicians also need to make sure that what they’re saying/explaining makes sense to the patient, especially when it comes to taking medication(s) (patients with chronic conditions usually have multiple, which can be hard to keep track). There are solutions coming to the forefront, such as pill packs, patient portals, and support groups. But I believe this is just the beginning. Every cancer is different. No two patients are the same – indifference is ignorance. It’s time to combine research, health literacy, and ultimately, compassion for a patient’s story, to provide the best care and create better health outcomes.