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The Power of Shared-Decision Making: A New Revolution of Care

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I remember my treating surgeon discussing my treatment options with me when I was first diagnosed with cancer back in 2017 at the age of 27. I didn’t know much about thyroid cancer, what a thyroid was, or about cancer itself. Of course, no one plans to get cancer in the first place, especially at a young age, so I felt like I was being guided by my care team appropriately. I believed in the “power” of the white coat, a doctor who knew I had my best interest at heart. What I didn’t know was about different options when it came to treating my type of cancer, which my doctor explained to me in terms that I understood. I didn’t know it at the time, but my doctor was engaging in what’s called “shared-decision making,” when the patient and their care team, including their doctor, take the time to talk about different options and how it will affect the life of the patient moving forward.

To give an example, I was given the option of removing the half of the thyroid that contained the tumor and leaving the other half in, as opposed to removing the entire gland. My doctor explained the pros and cons of both types of surgeries so that I could make a well-informed decision with my caregivers, and as a result, I felt like a more prepared patient.

From this experience, I learned how important it is to have a good relationship with your entire care team, especially with your treating physician, such as an oncologist, or in my case, a surgeon and endocrinologist. Having an ongoing back and forth conversation that fuels this type of relationship is especially important, too, as I believe it can directly impact patient compliance. For example, as part of ongoing surveillance for my diagnosis, and typically for any cancer diagnosis, ultrasounds and bloodwork are performed on a routine basis, such as every 3-6 months, or even yearly. If a patient doesn’t know why this is being done, they may forgo either of these types of appointments, especially if they’re expensive.

Another example of patient compliance is compliance to medication instructions. Doctors and patients alike should have a conversation about how these medications are to be taken, especially if the medications are newly prescribed. Often patients are labeled as “non-compliant,” but more likely than not, they don’t understand. This is where communication, a strong relationship, and shared decision making come in to enhance patient outcomes.

As patients, we have to be advocates for ourselves when it comes to our health, which also involves our care team involving us in our own healthcare. We should feel emboldened to do this, not afraid. If you don’t feel comfortable discussing your treatment and your opinions with your physician and care team, then it’s time to find another group, and that’s 100% okay. Be your own empowered patient!

Carly Flumer

Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.

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

Have a good relationship with your endocrinologist, as they will be treating you for life.
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.
Ask about different treatment options (i.e. surgical removal).
Inquire about potential side effects of each treatment and how to mitigate them, especially if you undergo chemotherapy and/or radiation.
Ask for clarity on medical jargon, such as thyroid-specific blood tests.
Bring in a list of questions to each appointment.
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.
Join support groups that are available both online and in-person.
Utilize your patient portal, if you have one, for messaging your care team, renewing prescriptions, and viewing lab and ultrasound results.
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.
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.

Carly Flumer

December 2021 Notable News

December 20, 2021/in Notable News, PEN Blog, Uncategorized /by Jennifer Lessinger

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If you are like pretty much everyone in the world, you are tired of hearing about viruses, but there is a type of virus that you’ll be glad to learn about. You’ll also be glad to learn that blood tests are detecting cancer, immune cells are communicating with each other, and researchers are taking steps to reduce disparities in healthcare. You may not care to learn that there is yet another link between obesity and cancer, but there is, and that probably doesn’t come as a surprise at this point.

A study in Australia shows that obesity could lead to 10,000 cases of thyroid cancer in the next ten years, reports medicalxpress.com. The study found that one in five future thyroid cancers in the future will be linked to obesity levels today. The study shows the importance of preventing obesity in order to prevent cancer. The findings are especially troubling because the occurrence of obesity has doubled in Australia over the last 20 years. Obesity has been called a causal risk factor for thyroid cancer. Learn more about the study here.

Researchers have developed a new tool for determining the risk of breast cancer in black women in the United States, reports cancer.gov. Black women are usually younger when diagnosed and are more likely to be diagnosed with aggressive or advanced forms of breast cancer. Black women are also more likely to die from breast cancer. The tool, called the Black Women’s Health Study Breast Cancer Risk Calculator, is an online questionnaire that uses information about a woman’s medical, reproductive, and family history. The new screening tool is a step toward reducing the disparities in care for black women. Learn more about the risk calculator here.

Scientists have discovered how immune system cells communicate with each other to identify and eliminate tumors, reports sciencedaily.com. The information could help improve the number of patients who are able to benefit from immune therapies and could lead to the development of vaccines that could increase the survival rate for several cancers. Learn more about the findings and how the cells communicate with each other here.

A California company has developed a simple blood test that could detect up to 50 different kinds of cancer, reports webmd.com. The test, called Galleri, can even reportedly detect pancreatic, ovarian, and esophageal cancers, which are generally hard-to-detect. The test detects whether cancer signals were or were not detected and could lead to early detection of cancers. The test does not diagnose cancer and is not meant to replace regular recommended screenings but could help detect cancers that don’t have screening tests. The test doesn’t have full Food and Drug Administration (FDA) approval yet, and it’s meant for people at high risk for cancer. Patients can expect to pay $950 for the test which isn’t covered by insurance. Learn more about the Galleri test here.

Believe it or not, some viruses can help to fight diseases like cancer, reports sciencedaily.com. Oncolytic viruses are able to target and destroy cancer cells all while leaving healthy cells alone. Viruses outnumber all other life forms combined, and they infect every form of cellular life. The oncolytic viruses are known as specialists in that they are selective in the type of organisms they infect, and because they kill cancer cells and don’t harm normal cells, they could provide a key to new cancer therapies. Learn more about the potential cancer fighting viruses here.

Let’s hope that in 2022 the viruses that are making headlines are the cancer-fighting kind. Wishing you health, peace and hope in 2022 and beyond. Happy New Year.

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

Patient Profile: Vanessa Steil

March 9, 2021/in Patient Stories, PEN Blog, Thyroid Cancer, Thyroid Cancer Blog ND, Thyroid Cancer Newly Diagnosed, Women Patient Stories /by PEN Editorial Staff

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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.

Thyroid Awareness: January and Beyond

February 4, 2021/in Thyroid Cancer, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource ND /by Kara Rayburn

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This post was originally published by Sharon O’Day on MedicareGuide on January 21, 2021 here.

Most people with thyroid disease don’t even know they have it. More than one in eight Americans will develop a thyroid condition during their lifetime, but up to 60% are unaware of it.¹

That’s because the symptoms — fatigue, depression, sleep disturbances and weight loss or gain, among others — could just as well be signs of other medical conditions and life stages.

That’s what makes Thyroid Awareness Month, which falls in January each year, so important. If both people and doctors think of thyroid problems more often, cases can be diagnosed earlier and the disease can be managed sooner.

What Is Thyroid Disease?

Thyroid disease is a medical condition that keeps your thyroid from producing the right amount of the hormones needed by your body’s systems to function. This small, butterfly-shaped gland at the lower front of your neck affects how well every cell, tissue and organ in your body works.

The cause of thyroid disease is unknown, but it can often be managed with medical attention. But first it has to be diagnosed through blood tests, imaging (scans or ultrasounds) and physical exams.

With hypothyroidism, the gland doesn’t make enough thyroid hormone and you can feel tired, gain weight and feel the cold more intensely.
On the flip side, when the gland produces too much hormone you can develop hyperthyroidism, leaving you feeling tired and nervous. You may also lose weight and find your heartbeat is rapid.

Graves’ disease is a specific form of hyperthyroidism, an autoimmune genetic disorder that affects about 1% of the U.S. population.²

Women are five to eight times more likely than men to be among the estimated 20 million Americans with a thyroid condition.³

Different types of benign (non-cancerous) growths and malignant (cancerous) tumors can develop in the thyroid gland. Thyroid nodules, for example, are common and usually benign; these lumps can be solid or filled with fluid. You should still seek immediate medical attention because, while most growths don’t turn out to be cancer, some do.⁴

What About Thyroid Cancer?

When the cells in the thyroid grow out of control, the disease can become thyroid cancer. In 2017, the latest year for Centers for Disease Control statistics, more than 33,000 women and nearly 12,000 men were diagnosed with thyroid cancer.⁵

Thyroid cancer has more specific symptoms than other forms of thyroid disease: a lump or swelling on the side of the neck, trouble or pain breathing or swallowing and a hoarse voice.⁶

What Are the Trends in Thyroid Cancer?

The yearly number of new thyroid cancer cases in the U.S. has grown steadily, from 18,000 in 1999 to a peak of 49,500 in 2015, with a small drop-off after that.⁷

In 2017, for every 100,000 Americans, 14 new thyroid cancer cases were reported and one person died.⁸

Scientists aren’t sure what causes thyroid cancer. But the risk factors include:⁹

Being female.
Being between the ages of 25 and 65.
Being exposed to radiation as a child.
Having a history of an enlarged thyroid.
Having a family history of thyroid disease.
Having certain genetic conditions, including familial medullary thyroid cancer (FMTC), multiple endocrine neoplasia type 2A syndrome (MEN2A) and multiple endocrine neoplasia type 2B syndrome (MEN2B).

Gender and Race

The chances of a thyroid cancer diagnosis are nearly three times higher for women than for men.¹⁰

But if you’re Black or American Indian/Alaska Native, you have about a 45% lower chance of being diagnosed with thyroid cancer than if you’re white, Asian/Pacific Islander or Hispanic.¹¹

Survival Studies

Three factors influence the five-year survival rate for thyroid cancer patients: gender, age and race.¹²

Survival rates are higher for women than for men: 98% versus 93.6%.
Survival drops as people age, from 99.4% for those under 45 to 86.1% for those over 75.
Survival is slightly lower for Blacks compared with whites and people of other races/ethnicities.

For women, thyroid cancer has the highest five-year survival rate of all cancers. For men, only prostate cancer and testicular cancer have higher survival rates.

Regional Glances

Across all ages, genders, races and ethnicities, the rate of new cancers is higher in the extended New England area and some western and midwest states, including Utah, Wyoming, North Dakota and Kansas.¹³

How You Can Raise Awareness About Thyroid Disease

Thyroid Awareness Month highlights the crucial role the thyroid plays in the ability of major organs to function. It aims for more people to get tested if they have unexplained symptoms like those mentioned above. And it promotes early treatment.

As with any type of cancer, greater awareness leads to earlier detection, which can save lives. A cancer stage is defined by whether cancer cells have been contained within the thyroid or traveled to other parts of the body, which influences your treatment options as well as the odds of recovery.¹⁴

If you want to participate in Thyroid Awareness Month, here are six simple ways to get involved:

Do a thyroid neck check. You’ll need a hand-held mirror and a glass of water. Tip your head back, take a sip of water and swallow. Using the mirror as you swallow, watch the lower front of your neck for any bulges or protrusions. If you see any, talk to your physician right away.

Encourage friends and family to get tested. Although symptoms are pretty general, if a loved one complains of feeling cold, not sleeping well or having trouble swallowing, ask them to do the at-home neck check and suggest they see their doctor.

If you can, donate. Even if thyroid disease hasn’t affected you directly, consider donating to:

- The American Thyroid Association (ATA): The ATA’s purpose is to improve the lives of those living with thyroid disease and cancer through research, awareness and education. Visit this link for donations.
- Thyroid Cancer Survivors’ Association (ThyCa): ThyCa provides education and comfort to all people diagnosed with thyroid cancer and their loved ones. Visit this link for donations.
- Thyroid, Head & Neck Cancer (THANC) Foundation: Apart from being a major fundraiser for thyroid, head and neck cancer research—like finding new treatments and better therapies—THANC focuses on community awareness and education, as well as patient outreach and support initiatives.

Share information online and off. ThyCa offers free materials to increase awareness of thyroid issues. Order some today and help spread the word.

Share Your Thyroid Story. Paloma Health developed a video campaign that invites people to share their thyroid story to help raise awareness for thyroid disease symptoms, risk factors and treatment options. According to the organization, when someone submits a story, they’re automatically entered for a chance to win a thyroid support bundle giveaway.

Use hashtags to raise awareness on social media. By using these designated hashtags from the ATA and ThyCA, your efforts to raise awareness will be multiplied:
- #thyroid #hypothyroidism #thyroidhealing #thyroidproblems #thyroiddisease #thyroidhealth #autoimmunedisease #hormones #hyperthyroidism #hypothyroidism #hashimotos #cancer #thyroidcancer #autoimmune #thyroidweightloss #covid #hashimotosdisease #thyroidwarrior #thyroidawareness #thyroidectomy #hypothyroid

Next Steps

January is Thyroid Awareness Month and September is Thyroid Cancer Awareness Month. But your efforts to raise awareness are needed year-round because most thyroid disease cases go undetected in their early stages.

Check yourself regularly with the swallow test. It only takes a minute or two. And stay vigilant when friends and family mention unexplained symptoms. If the signs fall in general categories such as fatigue, depression, sleep disturbances and weight loss or gain, encourage them to visit their doctor to have their thyroid checked.

Your efforts to promote Thyroid Awareness Month can help reduce the number of Americans who have a thyroid problem but don’t know and don’t get checked before a very treatable issue becomes much more serious.

American Thyroid Association. “General Information/Press Room.” thyroid.org (accessed December 18, 2020).
“General Information/Press Room.”
“General Information/Press Room.”
American Cancer Society. “What Is Thyroid Cancer?” cancer.org (accessed December 18, 2020).
Centers for Disease Control and Prevention. “United States Cancer Statistics: Data Visualizations.” gis.cdc.gov (accessed December 18, 2020).
Centers for Disease Control and Prevention. “Thyroid Cancer.” cdc.gov (accessed December 18, 2020).
“United States Cancer Statistics: Data Visualizations.”
“United States Cancer Statistics: Data Visualizations.”
National Cancer Institute. “Thyroid Cancer Treatment (Adult) (PDQ®)–Patient Version.” cancer.gov (accessed December 18, 2020).
“United States Cancer Statistics: Data Visualizations.”
“United States Cancer Statistics: Data Visualizations.”
“United States Cancer Statistics: Data Visualizations.”
“United States Cancer Statistics: Data Visualizations.”
“Trends in Thyroid Cancer Incidence and Mortality in the United States, 1974-2013.”

Patient Profile: Bob Lawson

January 27, 2021/in Patient Stories, PEN Blog /by Kara Rayburn

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“I had a clinical trial in my hip pocket already because I had taken the extra steps. I think it saved my life and got me in the right place,” says empowered patient Bob Lawson who is currently participating in a clinical trial for his non-small cell lung cancer, which recurred a little over three years after his initial cancer diagnosis and treatment. While Bob is in the right place now, his cancer journey has not been an easy one, and he has had to be actively involved in his treatment to ensure the best possible outcome. “It’s so difficult to know what to do, it’s overwhelming. You have to do research on your own,” says Bob, who recommends the Patient Empowerment Network (PEN) website for patients looking for a place to start. “For patients seeking out advocacy, PEN has something that’s very important,” he says referring to the free, online resources provided by PEN. Bob especially likes the PEN-Powered Activity Guides, found here, and says they are powerful tools for patients to find hope and ways to benefit from the new technology and treatments available. His best advice, though, is to do what he’s done all along. “I would say ask questions. A lot of them. You want to ask the right questions and the right questions change,” he says. “If you don’t ask the questions, you’ll never know.”

When he was first diagnosed with lung cancer, Bob says he had no idea what to expect. “At that time, I didn’t know anything about anything,” he says, but he adds that he did know enough to ask questions, and by asking questions, he improved his treatment outcomes. He was diagnosed as the result of some testing that was done for a medical episode that ultimately turned out to be a transient ischemic attack (TIA), which is often referred to as a mini stroke. During the testing, an x-ray revealed a shadow on his left lung, and a fine needle biopsy confirmed that it was cancer.

Bob says when he talked to the surgeon at the hospital, he wasn’t comfortable with the treatment plan, which included a surgery where his ribs would be cracked. He asked the doctor if the invasive surgery was really the only option, and that question got him referred for a second opinion. “Most doctors encourage a second opinion,” he says. “You have to become educated very quickly about what you’re dealing with.”

Bob says the second doctor won his confidence almost immediately. He recommended a minimally invasive lobectomy of the upper left lung and, although his cancer was stage 1B and did not require chemotherapy, the doctor strongly recommended it. The surgery was successful as was his round of chemotherapy. “I did the entire regimen, rang the bell on my way out the door, and they said I was cancer free,” says Bob. That was seven years ago.

Bob Lawson

A few years after being declared cancer free, Bob decided it was time to address the TIA he’d experienced. The cause of the TIA had never been discovered so Bob had a scan of his carotid artery. His artery was clear, but the technologist noticed something on his thyroid. That something turned out to be cancer. It was a nodule classified as malignant neoplasm, and it was unrelated to his lung cancer. Fortunately, the nodule was completely encapsulated in the tissue and was removed. However, the treatment protocol at the time was to completely remove the thyroid. “I didn’t like the sound of that,” says Bob who once again asked a question. “What would you do,” he asked his doctor. Later that night, Bob says his doctor called him. Because of Bob’s question the surgeon dug a little deeper and spoke with the pathologist who said he wouldn’t remove the thyroid. Bob kept his thyroid and, with the assistance of minimal medication, he’s had no problems with his thyroid since. He says five months after he turned down surgery to remove his thyroid, the nodule he had was declassified as cancer.

However, just ten months after the issue with his thyroid, Bob lost his voice and noticed he was coughing a lot. At the same time, he was experiencing significant pain in his right hip. He attributed the hip pain to not getting any younger and the natural consequences from old injuries, but it bothered him enough that he went in for some tests. The tests revealed a little bit of discoloration on the bone that the doctor said he normally wouldn’t worry about, but since Bob had a history of cancer, he wanted to do a scan of the area. “The scan lit up like a Christmas tree,” says Bob. His lung cancer was back, and it had spread to his right femur and hip. Bob had successful radiation treatment on his hip, but he couldn’t have radiation on the tumor in his lung because of its location near the vagus nerve and vital organs. The tumor location also meant surgery was not an option, so his doctor recommended a targeted monoclonal antibody immunotherapy.

Once again, Bob sought a second opinion. “What I had done when they discovered the hip tumor was called the insurance company and got permission to get a second opinion,” he explains. He actually got the opinion of two other oncologists who both agreed with his doctor’s recommended treatment course, but the second doctor, with Johns Hopkins Medicine, went a step further and said, if the treatment stopped working, he had a clinical trial that Bob might want to consider. So, Bob took home the paperwork for the trial and began immunotherapy treatment with his doctor.

It was a relatively new therapy at the time, and, for a while, it worked to reduce the size of the tumor in his lung. Then, he had two months in a row where his scans showed disease progression, and he was taken off the therapy and given a prognosis of 10 to 18 months to live. He asked his doctor what they were going to do, and his doctor said he could do chemotherapy again. “That was the last thing on earth I wanted to do,” says Bob, who asked his doctor about a clinical trial. The doctor agreed that a trial was probably the best course of action for Bob, but he didn’t have any to recommend.

That’s when Bob pulled the Johns Hopkins clinical trial out of his hip pocket. He’s been having infusions every month for the past 17 months, and he’s really happy with the results. “The tumor is steady or reducing all the time, which is great, obviously,” he says.

Bob remains vigilant about his healthcare and continues to pay attention to what other treatments might be available to him should this trial stop working. He continues to research other trials, sometimes reviewing as many as 20 in a week. “Most people just trust the doctor, and that’s the wrong approach,” he says. “Get a second, third, and fourth opinion, and have something ready to go in case what you’re doing doesn’t work.” Bob has learned that approach through experience, but he hopes his story will help make it easier for others. “How can I best support someone who’s like me,” he often asks himself. “I think that’s something I’d like to do,” he says.

Patients who want to ask questions like Bob did, but aren’t sure what the right questions are, can start here with the PEN downloadable office visit planners available for free at powerfulpatients.org.

“Wait, There’s a Good Cancer?”

December 14, 2020/in Carly Flumer, Featured Network Manager, PEN Blog, Thyroid Cancer, Thyroid Cancer Blog ND, Thyroid Cancer Newly Diagnosed /by Carly Flumer

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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.

Carly Flumer

Do You Need to See an Endocrinologist for Your Thyroid Disease?

September 2, 2020/in Thyroid Cancer, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource ND, Thyroid Cancer Resource T, Thyroid Cancer Testing /by Kara Rayburn

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This resources was originally published by the Verywell Health here.

In most cases, the diagnosis of a thyroid condition is made by a person’s primary care doctor, who may then refer you to an endocrinologist, a physician who treats hormone problems like thyroid disease and others. But that’s not always the case—or necessary. Sometimes, your general practitioner is comfortable managing your thyroid condition on his own, and this is perfectly sensible for certain thyroid diagnoses.

There are other healthcare practitioners, such as naturopaths and chiropractors, who also treat thyroid patients. While their expertise may be helpful as a complement to your thyroid care, it should not be a substitute for that of a primary care doctor or endocrinologist.

How to Work With Your Thyroid Medical Team

As managing thyroid disease can be challenging and is, in most cases, a lifelong commitment, it’s important to have the right team of professionals helping you along the way.

Thyroid Disease Doctor Discussion Guide

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Primary Care Doctors

Your primary care doctor may be able to manage your thyroid disease, especially if you are diagnosed with hypothyroidism. This is because most primary care doctors are comfortable and trained to monitor thyroid stimulating hormone (TSH) levels and adjust thyroid hormone replacement medication accordingly

That said, there are some specific situations that warrant a referral to an endocrinologist.

If you are pregnant or planning pregnancy
A newborn or child with a thyroid condition
Presence of thyroid nodules or an enlarged thyroid gland (goiter)
Any type of hyperthyroidism, including Graves’ disease
Secondary hypothyroidism (if a pituitary problem is causing hypothyroidism)
Thyroid eye disease
Suspected thyroid cancer

Endocrinologists

An endocrinologist is a doctor who completes training in internal medicine (like a primary care physician) and then undergoes more training (usually two to three years) in the field of endocrinology.

Endocrinologists diagnose and treat hormonal imbalances, usually due to various gland conditions, such as:

Thyroid disorders
Diabetes
Osteoporosis and bone health
Adrenal disorders
Pituitary disorders
Menopause issues in women
Testosterone problems in men2

While primary care doctors can manage some endocrine conditions, like “textbook” hypothyroidism and diabetes, other conditions warrant the care of an endocrinologist, like pituitary or adrenal gland problems or hyperthyroidism.

Even if you have “textbook” hypothyroidism, do not be surprised if your primary care doctor refers you to an endocrinologist. This can be for a number of reasons—perhaps you have multiple other medical problems (making your case a complex one), or perhaps your doctor does not have a lot of experience treating patients with such a disorder.

Sometimes, primary care doctors simply want an “extra set of eyes” from an endocrinologist, whether that’s taking a second look at your diagnostic test results and/or modifying your treatment plan—all of this is OK, if not, a sign of good care.

Depending on your diagnosis and treatment plan, your endocrinologist may opt to manage your condition on his own, as in the case of Graves’ disease or monitoring thyroid nodules.

Alternatively, your endocrinologist may work alongside your primary care doctor to manage your condition. For example, your primary care doctor may refer you to an endocrinologist for an initial diagnosis of Hashimoto’s disease. Once your endocrinologist stabilizes your thyroid hormone replacement dose, your primary care doctor may then follow your TSH levels. You may then only see your endocrinologist if a problem arises, or once a year for a check-in.

Other Practitioners

Many thyroid patients look to seek out 360-treatment plan—that is, one that includes the expertise of practitioners of different disciplines and takes a “whole body” approach. Naturopaths and chiropractors are two professionals who are sometimes consulted.

If you consult with these or other practitioners, be sure that you only do so as an adjunct to your care by a primary care doctor or endocrinologist. He or she should also be aware of any treatments recommended by other clinicians.

Naturopathic Doctors

A licensed naturopathic doctor (ND) graduates from a four-year graduate level holistic medical school. Their approach to healthcare tends to be more integrative perhaps than traditional doctors in that NDs believe no part of your body operates in complete isolation from the rest of the system.3

So, for example, an ND may discuss the aspects of how nutrition affects thyroid disorders and make sure that you have a diet plan that works to support your thyroid health. In addition, by ordering labs and imaging tests, an ND may evaluate other hormones such as the sex hormone estrogen and cortisol (the “stress hormone” produced by your adrenals glands).

Complement to Your Thyroid Care

While an integrative approach to your thyroid health is appealing, NDs do not necessarily follow the guidelines recommended by professional societies like the American Thyroid Association (ATA) or the American Association of Clinical Endocrinologists (AACE).

For instance, for the treatment of hypothyroidism, many NDs prescribe desiccated thyroid hormone, which is derived from the dried thyroid glands of pigs or cows and provides both T4 (thyroxine) and triiodothyronine (T3). Alternative names include natural thyroid, thyroid extract, porcine thyroid, pig thyroid; brand names include Nature-throid and Armour Thyroid.

This type of thyroid hormone replacement medication provides a ratio of T4:T3 that is not natural to humans (4:1 instead of 16:1), which tends to produce some degree of hyperthyroidism. That is why most expert bodies (the AACE and ATA, for instance) do not recommend its usage, except for perhaps select patients. Instead, for the vast majority of patients, experts recommend sticking with levothyroxine alone (brand names: Synthroid, Levoxyl, and Tirosint).4

Lastly, some NDs practice botanical medicine, recommending herbs for the care of various medical problems. Taking herbs and supplements can be especially harmful to a person with thyroid disease as they may interfere with your medication and/or the functioning of your thyroid gland.

Chiropractors

According to the American Chiropractic Association, chiropractors are designated as “physician-level providers,” in the vast majority of states. While the doctor of chiropractic (DC) program is similar to the doctor of medicine (MD) program in the first two years, the programs diverge in the second half. During this time, the DC program focuses on diet, nutrition, and spinal manipulation, while the MD program emphasizes the study of pharmacology.5

Complement to Your Thyroid Care

While your chiropractor may have been the one to diagnose your thyroid disease (they can order laboratory tests and imaging studies, like a naturopath), once diagnosed, your chiropractor must refer you to a medical doctor for proper treatment—for instance, thyroid hormone replacement for hypothyroidism and either an anti-thyroid drug, surgery, or radioactive iodine ablation for hyperthyroidism.

Chiropractors can, however, provide supportive thyroid care, such as nutritional guidance or ways to ease musculoskeletal pain associated with the underlying thyroid disease (like carpal tunnel syndrome or joint aches).

Chiropractors are legally prohibited from prescribing thyroid medication, which means that they cannot treat or cure thyroid conditions.

A Word From Verywell

The decision to find a doctor for your thyroid care can be a challenging one, as the relationship is an intensely personal one, and it’s not easy to find the right match, particularly when you may be limited by geography and insurance.

Remain proactive in seeking out the right doctor-patient relationship. And keep a positive mindset, too. When you find that trusting, compassionate partnership, you will just know it.

Tests for Thyroid Cancer

September 2, 2020/in Thyroid Cancer, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource ND, Thyroid Cancer Resource T, Thyroid Cancer Testing /by Kara Rayburn

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This resources was originally published by the American Cancer Society here.

Thyroid cancer may be diagnosed after a person goes to a doctor because of symptoms, or it might be found during a routine physical exam or other tests. If there is a reason to suspect you might have thyroid cancer, your doctor will use one or more tests to confirm the diagnosis. If cancer is found, other tests might be done to find out more about the cancer.

Medical history and physical exam

If you have any signs or symptoms that suggest you might have thyroid cancer, your health care professional will want to know your complete medical history. You will be asked questions about your possible risk factors, symptoms, and any other health problems or concerns. If someone in your family has had thyroid cancer (especially medullary thyroid cancer) or tumors called pheochromocytomas, it is important to tell your doctor, as you might be at high risk for this disease.

Your doctor will examine you to get more information about possible signs of thyroid cancer and other health problems. During the exam, the doctor will pay special attention to the size and firmness of your thyroid and any enlarged lymph nodes in your neck.

Imaging tests

Imaging tests may be done for a number of reasons:

To help find suspicious areas that might be cancer
To learn how far cancer may have spread
To help determine if treatment is working

People who have or may have thyroid cancer will get one or more of these tests.

Ultrasound

Ultrasound uses sound waves to create images of parts of your body. You are not exposed to radiation during this test.

This test can help determine if a thyroid nodule is solid or filled with fluid. (Solid nodules are more likely to be cancerous.) It can also be used to check the number and size of thyroid nodules as well as help determine if any nearby lymph nodes are enlarged because the thyroid cancer has spread.

For thyroid nodules that are too small to feel, this test can be used to guide a biopsy needle into the nodule to get a sample. Even when a nodule is large enough to feel, most doctors prefer to use ultrasound to guide the needle.

Radioiodine scan

Radioiodine scans can be used to help determine if someone with a lump in the neck might have thyroid cancer. They are also often used in people who have already been diagnosed with differentiated (papillary, follicular, or Hürthle cell) thyroid cancer to help show if it has spread. Because medullary thyroid cancer cells do not absorb iodine, radioiodine scans are not used for this cancer.

For this test, a small amount of radioactive iodine (called I-131) is swallowed (usually as a pill) or injected into a vein. Over time, the iodine is absorbed by the thyroid gland (or thyroid cells anywhere in the body). A special camera is used several hours later to see where the radioactivity is.

For a thyroid scan, the camera is placed in front of your neck to measure the amount of radiation in the gland. Abnormal areas of the thyroid that have less radioactivity than the surrounding tissue are called cold nodules, and areas that take up more radiation are called hot nodules. Hot nodules usually are not cancerous, but cold nodules can be benign or cancerous. Because both benign and cancerous nodules can appear cold, this test by itself can’t diagnose thyroid cancer.

After surgery for thyroid cancer, whole-body radioiodine scans are useful to look for possible spread throughout the body. These scans become even more sensitive if the entire thyroid gland has been removed by surgery because more of the radioactive iodine is picked up by any remaining thyroid cancer cells.

Radioiodine scans work best if patients have high blood levels of thyroid-stimulating hormone (TSH, or thyrotropin). For people whose thyroid has been removed, TSH levels can be increased by stopping thyroid hormone pills for a few weeks before the test. This leads to low thyroid hormone levels (hypothyroidism) and causes the pituitary gland to release more TSH, which in turn stimulates any thyroid cancer cells to take up the radioactive iodine. A downside of this is that it can cause the symptoms of hypothyroidism, including tiredness, depression, weight gain, sleepiness, constipation, muscle aches, and reduced concentration. One way to raise TSH levels without withholding thyroid hormone is to give an injectable form of thyrotropin (Thyrogen) before the scan.

Because any iodine already in the body can affect this test, people are usually told to avoid foods or medicines that contain iodine for a few days before the scan.

Radioactive iodine can also be used to treat differentiated thyroid cancer, but it is given in much higher doses. This type of treatment is described in Radioactive iodine (radioiodine) therapy.

Chest x-ray

If you have been diagnosed with thyroid cancer (especially follicular thyroid cancer), a plain x-ray of your chest may be done to see if cancer has spread to your lungs.

Computed tomography (CT) scan

The CT scan is an x-ray test that makes detailed cross-sectional images of your body. It can help determine the location and size of thyroid cancers and whether they have spread to nearby areas, although ultrasound is usually the test of choice. A CT scan can also be used to look for spread into distant organs such as the lungs.

One problem using CT scans is that the CT contrast dye contains iodine, which interferes with radioiodine scans. For this reason, many doctors prefer MRI scans for differentiated thyroid cancer.

Magnetic resonance imaging (MRI) scan

MRI scans use magnets instead of radiation to create detailed cross-sectional images of your body. MRI can be used to look for cancer in the thyroid, or cancer that has spread to nearby or distant parts of the body. But ultrasound is usually the first choice for looking at the thyroid. MRI can provide very detailed images of soft tissues such as the thyroid gland. MRI scans are also very helpful in looking at the brain and spinal cord.

Positron emission tomography (PET) scan

A PET scan can be very useful if your thyroid cancer is one that doesn’t take up radioactive iodine. In this situation, the PET scan may be able to tell whether the cancer has spread.

Biopsy

The actual diagnosis of thyroid cancer is made with a biopsy, in which cells from the suspicious area are removed and looked at in the lab.

If your doctor thinks a biopsy is needed, the simplest way to find out if a thyroid lump or nodule is cancerous is with a fine needle aspiration (FNA) of the thyroid nodule. This type of biopsy can sometimes be done in your doctor’s office or clinic.

Before the biopsy, local anesthesia (numbing medicine) may be injected into the skin over the nodule, but in most cases an anesthetic is not needed. Your doctor will place a thin, hollow needle directly into the nodule to aspirate (take out) some cells and a few drops of fluid into a syringe. The doctor usually repeats this 2 or 3 more times, taking samples from several areas of the nodule. The biopsy samples are then sent to a lab, where they are looked at to see if the cells look cancerous or benign.

Bleeding at the biopsy site is very rare except in people with bleeding disorders. Be sure to tell your doctor if you have problems with bleeding or are taking medicines that could affect bleeding, such as aspirin or blood thinners.

This test is generally done on all thyroid nodules that are big enough to be felt. This means that they are larger than about 1 centimeter (about 1/2 inch) across. Doctors often use ultrasound to see the thyroid during the biopsy, which helps make sure they are getting samples from the right areas. This is especially helpful for smaller nodules. FNA biopsies can also be used to get samples of swollen lymph nodes in the neck to see if they contain cancer.

Sometimes an FNA biopsy will need to be repeated because the samples didn’t contain enough cells. Most FNA biopsies will show that the thyroid nodule is benign. Rarely, the biopsy may come back as benign even though cancer is present. Cancer is clearly diagnosed in only about 1 of every 20 FNA biopsies.

Sometimes the test results first come back as “suspicious” or “of undetermined significance” if FNA findings don’t show for sure if the nodule is either benign or malignant. If this happens, the doctor may order lab tests on the sample (see below).

If the diagnosis is not clear after an FNA biopsy, you might need a more involved biopsy to get a better sample, particularly if the doctor has reason to think the nodule may be cancer. This might include a core biopsy using a larger needle, a surgical “open” biopsy to remove the nodule, or a lobectomy (removal of half of the thyroid gland). Surgical biopsies and lobectomies are done in an operating room while you are under general anesthesia (in a deep sleep). A lobectomy can also be the main treatment for some early cancers, although for many cancers the rest of the thyroid will need to be removed as well (during an operation called a completion thyroidectomy).

Lab tests of biopsy (or other) samples

In some cases, doctors might use molecular tests to look for specific gene changes in the cancer cells. This might be done for different reasons:

If FNA biopsy results aren’t clear, the doctor might order lab tests on the samples to see if there are changes in the BRAF or RET/PTC genes. Finding one of these changes makes thyroid cancer much more likely.
For some types of thyroid cancer, molecular tests might be done to see if the cancer cells have changes in certain genes (such as the BRAF, RET/PTC, or NTRK genes), which could mean that certain targeted drugs might be helpful in treating the cancer.

These tests can be done on tissue taken during a biopsy or surgery for thyroid cancer. If the biopsy sample is too small and all the molecular tests can’t be done, the testing may also be done on blood that is taken from a vein, just like a regular blood draw.

Blood tests

Blood tests are not used to find thyroid cancer. But they can help show if your thyroid is working normally, which may help the doctor decide what other tests may be needed. They can also be used to monitor certain cancers.

Thyroid-stimulating hormone (TSH)

Tests of blood levels of thyroid-stimulating hormone (TSH or thyrotropin) may be used to check the overall activity of your thyroid gland. Levels of TSH, which is made by the pituitary gland, may be high if the thyroid is not making enough hormones. This information can be used to help choose which imaging tests (such as ultrasound or radioiodine scans) to use to look at a thyroid nodule. The TSH level is usually normal in thyroid cancer.

T3 and T4 (thyroid hormones)

These are the main hormones made by the thyroid gland. Levels of these hormones may also be measured to get a sense of thyroid gland function. The T3 and T4 levels are usually normal in thyroid cancer.

Thyroglobulin

Thyroglobulin is a protein made by the thyroid gland. Measuring the thyroglobulin level in the blood can’t be used to diagnose thyroid cancer, but it can be helpful after treatment. A common way to treat thyroid cancer is to remove most of the thyroid by surgery and then use radioactive iodine to destroy any remaining thyroid cells. These treatments should lead to a very low level of thyroglobulin in the blood within several weeks. If it is not low, this might mean that there are still thyroid cancer cells in the body. If the level rises again after being low, it is a sign that the cancer could be coming back.

Calcitonin

Calcitonin is a hormone that helps control how the body uses calcium. It is made by C cells in the thyroid, the cells that can develop into medullary thyroid cancer (MTC). If MTC is suspected or if you have a family history of the disease, blood tests of calcitonin levels can help look for MTC. This test is also used to look for the possible recurrence of MTC after treatment. Because calcitonin can affect blood calcium levels, these may be checked as well.

Carcinoembryonic antigen (CEA)

People with MTC often have high blood levels of a protein called carcinoembryonic antigen (CEA). Tests for CEA can help monitor this cancer.

Other blood tests

You might have other blood tests as well. For example, if you are scheduled for surgery, tests will be done to check your blood cell counts, to look for bleeding disorders, and to check your liver and kidney function.

Medullary thyroid carcinoma (MTC) can be caused by a genetic syndrome that also causes a tumor called pheochromocytoma. Pheochromocytomas can cause problems during surgery if the patient is under anesthesia (in a deep sleep). This is why patients with MTC who will have surgery are often tested to see if they have a pheochromocytoma as well. This can mean blood tests for epinephrine (adrenaline) and a related hormone called norepinephrine, and/or urine tests for their breakdown products (called metanephrines).

Vocal cord exam (laryngoscopy)

Thyroid tumors can sometimes affect the vocal cords. If you are going to have surgery to treat thyroid cancer, a procedure called a laryngoscopy will probably be done first to see if the vocal cords are moving normally. For this exam, the doctor looks down the throat at the larynx (voice box) with special mirrors or with a laryngoscope, a thin tube with a light and a lens on the end for viewing.

What’s the Difference Between Hypothyroidism and Hyperthyroidism?

September 2, 2020/in Thyroid Cancer, Thyroid Cancer Blog ND, Thyroid Cancer Newly Diagnosed /by Kara Rayburn

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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.”

Signs and Symptoms of Thyroid Cancer

September 2, 2020/in Thyroid Cancer, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource ND /by Kara Rayburn

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This resources was originally published by the American Cancer Society here.

Thyroid cancer can cause any of the following signs or symptoms:

A lump in the neck, sometimes growing quickly
Swelling in the neck
Pain in the front of the neck, sometimes going up to the ears
Hoarseness or other voice changes that do not go away
Trouble swallowing
Trouble breathing
A constant cough that is not due to a cold

If you have any of these signs or symptoms, talk to your doctor right away. Many of these symptoms can also be caused by non-cancerous conditions or even other cancers of the neck area. Lumps in the thyroid are common and are usually benign. Still, if you have any of these symptoms, it’s important to see your doctor so the cause can be found and treated, if needed.

What Is Thyroid Cancer?

September 2, 2020/in Thyroid Cancer, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource ND /by Kara Rayburn

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This resources was originally published by the American Cancer Society here.

Thyroid cancer is a type of cancer that starts in the thyroid gland. Cancer starts when cells begin to grow out of control. (To learn more about how cancers start and spread, see What Is Cancer?)

The thyroid gland makes hormones that help regulate your metabolism, heart rate, blood pressure, and body temperature.

Where thyroid cancer starts

The thyroid gland is in the front part of the neck, below the thyroid cartilage (Adam’s apple). In most people, the thyroid cannot be seen or felt. It is shaped like a butterfly, with 2 lobes — the right lobe and the left lobe — joined by a narrow piece of gland called the isthmus (see picture below).

The thyroid gland has 2 main types of cells:

Follicular cells use iodine from the blood to make thyroid hormones, which help regulate a person’s metabolism. Having too much thyroid hormone (hyperthyroidism) can cause a fast or irregular heartbeat, trouble sleeping, nervousness, hunger, weight loss, and a feeling of being too warm. Having too little hormone (hypothyroidism) causes a person to slow down, feel tired, and gain weight. The amount of thyroid hormone released by the thyroid is regulated by the pituitary gland at the base of the brain, which makes a substance called thyroid-stimulating hormone (TSH).
C cells (also called parafollicular cells) make calcitonin, a hormone that helps control how the body uses calcium.

Other, less common cells in the thyroid gland include immune system cells (lymphocytes) and supportive (stromal) cells.

Different cancers develop from each kind of cell. The differences are important because they affect how serious the cancer is and what type of treatment is needed.

Many types of growths and tumors can develop in the thyroid gland. Most of these are benign (non-cancerous) but others are malignant (cancerous), which means they can spread into nearby tissues and to other parts of the body.

Benign thyroid conditions

Thyroid enlargement

Changes in the thyroid gland’s size and shape can often be felt or even seen by patients or by their doctor.

An abnormally large thyroid gland is sometimes called a goiter. Some goiters are diffuse, meaning that the whole gland is large. Other goiters are nodular, meaning that the gland is large and has one or more nodules (bumps) in it. There are many reasons the thyroid gland might be larger than usual, and most of the time it is not cancer. Both diffuse and nodular goiters are usually caused by an imbalance in certain hormones. For example, not getting enough iodine in the diet can cause changes in hormone levels and lead to a goiter.

Thyroid nodules

Lumps or bumps in the thyroid gland are called thyroid nodules. Most thyroid nodules are benign, but about 2 or 3 in 20 are cancerous. Sometimes these nodules make too much thyroid hormone and cause hyperthyroidism. Nodules that produce too much thyroid hormone are almost always benign.

People can develop thyroid nodules at any age, but they occur most commonly in older adults. Fewer than 1 in 10 adults have thyroid nodules that can be felt by a doctor. But when the thyroid is looked at with an ultrasound, many more people are found to have nodules that are too small to feel and most of them are benign.

Most nodules are cysts filled with fluid or with a stored form of thyroid hormone called colloid. Solid nodules have little fluid or colloid and are more likely to be cancerous. Still, most solid nodules are not cancer. Some types of solid nodules, such as hyperplastic nodules and adenomas, have too many cells, but the cells are not cancer cells.

Benign thyroid nodules sometimes can be left alone (not treated) and watched closely as long as they’re not growing or causing symptoms. Others may require some form of treatment.

Types of Thyroid Cancers

The main types of thyroid cancer are:

Differentiated (including papillary, follicular and Hürthle cell)
Medullary
Anaplastic (an aggressive cancer)

Differentiated thyroid cancers

Most thyroid cancers are differentiated cancers. The cells in these cancers look a lot like normal thyroid tissue when seen in the lab. These cancers develop from thyroid follicular cells.

Papillary cancer (also called papillary carcinomas or papillary adenocarcinomas): About 8 out of 10 thyroid cancers are papillary cancers. These cancers tend to grow very slowly and usually develop in only one lobe of the thyroid gland. Even though they grow slowly, papillary cancers often spread to the lymph nodes in the neck. Even when these cancers have spread to the lymph nodes, they can often be treated successfully and are rarely fatal.

There are several subtypes of papillary cancers. Of these, the follicular subtype (also called mixed papillary-follicular variant) is most common. It has the same good outlook (prognosis) as the standard type of papillary cancer when found early, and they are treated the same way. Other subtypes of papillary carcinoma (columnar, tall cell, insular, and diffuse sclerosing) are not as common and tend to grow and spread more quickly.

Follicular cancer (also called follicular carcinoma or follicular adenocarcinoma): Follicular cancer is the next most common type, making up about 1 out of 10 thyroid cancers. It is more common in countries where people don’t get enough iodine in their diet. These cancers usually do not spread to lymph nodes, but they can spread to other parts of the body, such as the lungs or bones. The outlook (prognosis) for follicular cancer is not quite as good as that of papillary cancer, although it is still very good in most cases.

Hürthle (Hurthle) cell cancer (also called oxyphil cell carcinoma): About 3% of thyroid cancers are this type. It is harder to find and to treat.

Medullary thyroid carcinoma

Medullary thyroid cancer (MTC) accounts for about 4% of thyroid cancers. It develops from the C cells of the thyroid gland, which normally make calcitonin, a hormone that helps control the amount of calcium in blood. Sometimes this cancer can spread to lymph nodes, the lungs, or liver even before a thyroid nodule is discovered.

This type of thyroid cancer is more difficult to find and treat, There are 2 types of MTC:

Sporadic MTC, which accounts for about 8 out of 10 cases of MTC, is not inherited (meaning it does not run in families). It occurs mostly in older adults and often affects only one thyroid lobe.
Familial MTC is inherited and 20% to 25% can occur in each generation of a family. These cancers often develop during childhood or early adulthood and can spread early. Patients usually have cancer in several areas of both lobes. Familial MTC is often linked with an increased risk of other types of tumors. This is described in more detail in Thyroid Cancer Risk Factors.

Anaplastic (undifferentiated) thyroid cancer

Anaplastic carcinoma (also called undifferentiated carcinoma) is a rare form of thyroid cancer, making up about 2% of all thyroid cancers. It is thought to sometimes develop from an existing papillary or follicular cancer. This cancer is called undifferentiated because the cancer cells do not look very much like normal thyroid cells. This cancer often spreads quickly into the neck and to other parts of the body, and is very hard to treat.

Less Common Thyroid Cancers

Less than 4% of cancers found in the thyroid are thyroid lymphomas, thyroid sarcomas, or other rare tumors.

Parathyroid cancer

Behind, but attached to, the thyroid gland are 4 tiny glands called the parathyroids. The parathyroid glands help regulate the body’s calcium levels. Cancers of the parathyroid glands are very rare — there are probably fewer than 100 cases each year in the United States.

Parathyroid cancers are often found because they cause high blood calcium levels. This makes a person tired, weak, and drowsy. It can also make you urinate (pee) a lot, causing dehydration, which can make the weakness and drowsiness worse. Other symptoms include bone pain and fractures, pain from kidney stones, depression, and constipation.

Larger parathyroid cancers may also be found as a nodule near the thyroid. No matter how large the nodule is, the only treatment is to remove it surgically. Parathyroid cancer is much harder to cure than thyroid cancer.

Top Resources for Thyroid Cancer

July 27, 2020/in PEN Blog, Thyroid Cancer, Thyroid Cancer Access & Affordability, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource AA, Thyroid Cancer Resource ND, Thyroid Cancer Resource T, Thyroid Cancer Resource TC, Thyroid Cancer Resource WN, Thyroid Cancer Resource WPS, Thyroid Cancer Testing, Thyroid Cancer Treatment & Clinical Trials, Thyroid Cancer What's Next, Thyroid Cancer Whole Patient Support /by Carly Flumer

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General Resources, Including Medical Information

thyca.org– Thyca, Inc. (has everything you need to know about thyroid cancer as well as general thyroid information)
cancer.gov– National Cancer Institute
aacr.org– American Association for Cancer Research
asco.org– American Society of Clinical Oncology
cancer.org– American Cancer Society
thyroid.org– American Thyroid Association
clinicaltrials.gov– Find a clinical trial
nccn.org– National Comprehensive Cancer Network
oncolink.org– University of Pennsylvania’s Abraham Cancer Center
cancer.net
cancercare.org
nord.org- National Organization of Rare Diseases
triagecancer.org
cancerquest.org
thyroidawareness.com
thancguide.org – The Thyroid, Head and Neck Cancer (THANC) Foundation
thepatientstory.com/cancers/thyroid – Patient stories

Find a Physician

healthgrades.com
zocdoc.com
American Thyroid Association – find an endocrinologist
American Association of Clinical Endocrinologists – find an endocrinologist
The American Association of Endocrine Surgeons – find an endocrinologist

Support Groups

Many support groups can be found on Facebook by type of cancer and/or variant
Thyca
Our Odyssey– for young adults
Inspire
CancerCare
Immerman Angels
Lacuna Loft– for young adults
Stupid Cancer– for young adults
Cancer Support Community

Carly Flumer

Thyroid Cancer Glossary of Terms

July 16, 2020/in PEN Blog, Thyroid Cancer, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource AA, Thyroid Cancer Resource ND, Thyroid Cancer Resource T, Thyroid Cancer Resource TC, Thyroid Cancer Resource WN, Thyroid Cancer Resource WPS /by Carly Flumer

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Thyroid Conditions

Hyperthyroidism – A condition that occurs when the thyroid gland makes more thyroid hormones than the body needs. Thyroid hormones control the way the body uses energy and affect the body’s metabolism. Signs and symptoms include weight loss, fatigue, rapid or irregular heartbeat, sweating, diarrhea, nervousness, mood swings, shaky hands, trouble sleeping, trouble tolerating heat, muscle weakness, and a goiter (an enlarged thyroid gland that may cause the bottom of the neck to look swollen). Also called overactive thyroid.

Hypothyroidism – Too little thyroid hormone. Symptoms include weight gain, constipation, dry skin, and sensitivity to the cold. Also called under active thyroid

Types of Thyroid Cancer

Anaplastic Thyroid Cancer – a rare, aggressive type of thyroid cancer in which the malignant (cancer) cells look very different from normal thyroid cells

Follicular Thyroid Cancer – cancer that forms in follicular cells in the thyroid. It grows slowly and is highly treatable. The cancer cells look and act in some respects like normal thyroid cells

Medullary Thyroid Cancer – cancer that develops in C cells of the thyroid. The C cells make a hormone (calcitonin) that helps maintain a healthy level of calcium in the blood

Papillary Thyroid Cancer – cancer that forms in follicular cells in the thyroid and grows in small finger-like shapes. It is the most common type of thyroid cancer. The cancer cells look and act in some respects like normal thyroid cells. Variants include:

Columnar cell
Cribiform-Morular
Diffuse sclerosing
Encapsulated
Follicular variant of papillary
Hobnail
Hürthle cell
Insular
Macrofollicular
Oncocytic
Solid/trabecular
Spindle cell
Tall cell
Warthin-Like

Poorly Differentiated Thyroid Cancer – a rare form of thyroid cancer that is often aggressive. It is associated with high risk of cancer recurrence, spread to lung and/or bones and increased risk of death. Patients are often treated with a combination of surgery, radioactive iodine and/or radiation therapy and possibly newer, molecular targeted therapies

Thyroid Cancer Terms to Know

Adenocarcinoma – Cancer that begins in glandular cells. Glandular cells are found in tissue that lines certain internal organs and makes and releases substances in the body, such as mucus, digestive juices, or other fluids

Advanced – Has spread to other places in the body; far along in course

Benign – Not cancerous. Benign tumors may grow larger but do not spread to other parts of the body. Also called non-malignant

Lobe – a portion of an organ (ex. thyroid)

Lobectomy – surgery to remove a whole lobe (section) of an organ (ex. thyroid)

Locally Advanced – has spread to nearby tissues or lymph nodes

Malignant – Cancerous. Malignant cells can invade and destroy nearby tissue and spread to other parts of the body

Metastatic – spread of cancer from the primary site (place where it started) to other places in the body

Neoplasm – An abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Neoplasms may be benign (not cancer), or malignant (cancer). Also called tumor

Nodule – A growth or lump that may be malignant (cancer) or benign (not cancer)

Partial Lobectomy – surgery to remove a whole organ (ex. thyroid)

Radioactive Iodine – a radioactive form of iodine, often used for imaging tests or to treat an overactive thyroid, thyroid cancer, and certain other cancers. For imaging tests, the patient takes a small dose of radioactive iodine that collects in thyroid cells and certain kinds of tumors and can be detected by a scanner. To treat thyroid cancer, the patient takes a large dose of radioactive iodine, which kills thyroid cells. Radioactive iodine is given by mouth as a liquid or in capsules, by infusion, or sealed in seeds, which are placed in or near the tumor to kill cancer cells

Recurrent – Cancer that has recurred (come back), usually after a period of time during which the cancer could not be detected. The cancer may come back to the same place as the original (primary) tumor or to another place in the body. Also called recurrence and relapse

Refractory – Cancer that does not respond to treatment. The cancer may be resistant at the beginning of treatment or it may become resistant during treatment. Also called resistant cancer

Risk – patients with differentiated thyroid cancer (papillary or follicular) have different levels of risk of a recurrence or of persistent disease

Low Risk of recurrence or persistent disease means: no cancer in nearby tissue or outside the thyroid bed other than 5 or fewer small involved lymph nodes (under 0.2 centimeters), and cancer that is not one of the variants.
Intermediate Risk (Medium Risk) means some tumor in nearby neck tissue at the time of surgery, more than 5 lymph node metastases 0.2 to 3 centimeters in size, or a tumor that’s a variant or has vascular invasion
High Risk means extensive tumor outside the thyroid, distant metastases, incomplete tumor removal, or a cancerous lymph node over 3 centimeters in size.

T3 – also called triiodothyronine; a type of thyroid hormone

T4 – also called thyroxin and thyroxine; a hormone that is made by the thyroid gland and contains iodine. T4 increases the rate of chemical reactions in cells and helps control growth and development. T4 can also be made in the laboratory and is used to treat thyroid disorders

Thyroglobulin – the form that thyroid hormone takes when stored in the cells of the thyroid. Doctors measure thyroglobulin level in blood to detect thyroid cancer cells that remain in the body after treatment. If the thyroid has been removed, thyroglobulin should not show up on a blood test. Some patients produce anti-thyroglobulin antibodies, which are not harmful but which mask the reliability of the thyroglobulin value

Thyroid Gland – a gland located beneath the larynx (voice box) that makes thyroid hormone and calcitonin. The thyroid helps regulate growth and metabolism. Also called thyroid gland

Thyroid Gland Squamous Cell Carcinoma – A rapidly growing primary carcinoma of the thyroid gland composed of malignant squamous cells (cells are found in the tissues that form the surface of the skin, the passages of the respiratory and digestive tracts, and the lining of the hollow organs of the body). The clinical course is usually aggressive

Stage – The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer, and whether the cancer has spread from the original site to other parts of the body

Unresectable – Unable to be removed with surgery

Sources:

ncithesaurus.nci.nih.gov

cancer.gov

thyca.org

thyroid.org

Carly Flumer

June 2020 Notable News

June 26, 2020/in Notable News, PEN Blog /by Jennifer Lessinger

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It’s officially summer so grab a cup of coffee and soak up some vitamin D because this month we learn that both of those things can help prevent cancer. We also learn about the recall of a popular drug and the approval of some others. In addition, there’s a new blood test to diagnose liver cancer and some tips on how to recognize skin cancer. Finally, research shows that COVID-19 remains a very real threat, especially for cancer patients.

Vitamin D and Coffee Benefits

With so much going on, your vitamin D status may not be on your mind, but you might want to give it some thought, reports sciencedaily.com. It turns out that a good vitamin D status is good for cancer prevention and prognosis, especially for colon and blood cancers like leukemia and lymphoma. Conversely, a low vitamin D status often correlates with higher incidence of cancer and lower survival rates. You can learn more about vitamin D and cancer here.

While you’re out soaking up the vitamin D from the sun’s rays, you might want to bring your favorite cup of coffee because there’s evidence that coffee could reduce the risk of cancer, reports dailycoffeenews.com. The news comes from an update in the diet activity guidelines from the American Cancer Society. It’s not known how or why coffee seems to help prevent several types of cancers, but there’s been a decade of research that supports the claim. In addition to coffee, the American Cancer Society recommends following a healthy diet, limiting alcohol, staying active, and maintaining a healthy weight. Research shows that diet and exercise lifestyle choices are connected to 18 percent of all cancer cases in the United States. Learn more about coffee and cancer here.

Take a Look at Your Skin

All this talk about sun exposure makes it a good time to think about skin cancer. Especially since there’s room for improvement in skin cancer survival rates, says consumerreports.org. Getting to know your own skin could be the key to survival. A Consumer Reports survey found that only 52 percent of Americans have their skin regularly checked by a doctor. There’s debate about whether or not everyone should see a dermatologist every year, but early detection of skin cancer makes a big difference. When skin cancer is found early treatment is relatively non-invasive and early stage melanoma has a 98 percent survival rate. So, whether you see a doctor or not, you should perform monthly skin checks of your own. Get familiar with the moles and marks on your skin and look for any that don’t seem to fit in. If you find something that looks irregular, let your doctor know. Learn more and find examples of what skin cancer looks like here.

Metformin Hydrochloride Recall

While you’re checking your skin, you might also need to check your list of medications. A popular diabetes drug has been recalled due to cancer risk, reports webmd.com. All lots of metformin hydrochloride extended release 500 mg tablets were recalled due to the possibility that they contained high levels of N-Nitrosodimethylamine (NDMA) which is a chemical thought to cause cancer. A test by the United States Food and Drug Administration (FDA) found higher than allowed levels of NDMA in one lot of metformin. Get more information about the recall here.

FDA Expands Indication for Gardasil 9

The FDA has given accelerated approval for the use of a vaccine to prevent head and neck cancers, reports statnews.com. The human papilloma virus (HPV) vaccine, Gardasil 9, is recommended for both males and females ages 9 through 45 to prevent several cancers. However, the vaccine was not previously recommended as prevention for head and neck cancers even though they are commonly caused by HPV in the United States. The hope is that, by including head and neck cancers in the list of cancers the vaccine prevents, it will raise awareness for and help prevent the occurrence of these types of cancers. Find more about Gardasil here.

Good News for Thyroid and Non-Small Cell Lung Cancer

The FDA has also given accelerated approval for a drug to treat thyroid and lung cancer, says cancer.gov. The drug selpercatinib (Retevmo) will treat people with thyroid or non-small cell lung cancer with tumors that have a gene alteration called RET. The drug blocks the RET proteins and was shown to shrink tumors. Selpercatinib has fewer side effects than older RET blocking drugs. Accelerated approval means that, although the drug has not gone through all required levels of testing, it can be approved for use, but testing must continue while the product is on the market. The process is only used for drugs that treat serious or life-threatening diseases without better treatment options. Learn more about the accelerated approval of selpercatinib here.

Combatting Nausea

There’s another drug of note this month giving hope to advanced cancer patients who have nausea and vomiting, says cancer.gov. In a study conducted by the National Cancer Institute the drug olanzapine (Zyprexa) was found to reduce nausea and vomiting in advanced cancer patients. Olanzapine is an antipsychotic medication mainly used to treat bipolar disorder and schizophrenia and has also been used off-label to prevent nausea and vomiting in cancer patients. Learn more here.

Detecting Liver Cancer

The National Cancer Institute was also involved in a study where a blood test has been developed to determine which people are most likely to develop liver cancer, says cancer.gov. The simple blood test is used to check for exposure to certain viruses that lead to the development of hepatocellular carcinoma (HCC) which is the most common form of liver cancer. The test could help lead to early diagnosis and treatment. Most patients with HCC are diagnosed when the cancer is advanced and incurable, but when caught early the prognosis is much better. With HCC on the rise in the US, a test that could help with early detection is welcome news. Learn more about the testing here.

COVID-19 Update

The not-so-welcome news continues about the novel coronavirus. There are some new studies that emphasize the danger of the coronavirus for cancer patients, reports apnews.com. The studies showed that current and former cancer patients who developed COVID-19 were more likely to die within a month than people without cancer. One study showed that 13 percent of cancer patients with COVID-19 died. Another study found the death rate to be 28 percent. The studies are a reminder of how critical it is for cancer patients to do all they can to follow safety guidelines so they can avoid contracting the virus. Find out more here.

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

Tag Archive for: thyroid cancer

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11 Tips for Navigating Thyroid Cancer

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What Is Thyroid Disease?

What About Thyroid Cancer?

What Are the Trends in Thyroid Cancer?

Gender and Race

Survival Studies

Regional Glances

How You Can Raise Awareness About Thyroid Disease

Next Steps

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

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How to Work With Your Thyroid Medical Team

Thyroid Disease Doctor Discussion Guide

Primary Care Doctors

Endocrinologists

Other Practitioners

Naturopathic Doctors

Complement to Your Thyroid Care

Chiropractors

A Word From Verywell

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Medical history and physical exam

Imaging tests

Ultrasound

Radioiodine scan

Chest x-ray

Computed tomography (CT) scan

Magnetic resonance imaging (MRI) scan

Positron emission tomography (PET) scan

Biopsy

Lab tests of biopsy (or other) samples

Blood tests

Thyroid-stimulating hormone (TSH)

T3 and T4 (thyroid hormones)

Thyroglobulin

Calcitonin

Carcinoembryonic antigen (CEA)

Other blood tests

Vocal cord exam (laryngoscopy)

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What Is Hypothyroidism?

Symptoms associated with hypothyroidism include:

What Is Hyperthyroidism?

What Causes Hypothyroidism and Hyperthyroidism?

Who’s Likely to Develop Thyroid Problems?

How Are These Conditions Diagnosed?

How Are These Conditions Managed?

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Where thyroid cancer starts

Benign thyroid conditions

Thyroid enlargement

Thyroid nodules

Types of Thyroid Cancers

Differentiated thyroid cancers

Medullary thyroid carcinoma

Anaplastic (undifferentiated) thyroid cancer

Less Common Thyroid Cancers

Parathyroid cancer

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General Resources, Including Medical Information

Find a Physician

Support Groups

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Thyroid Conditions

Types of Thyroid Cancer

Thyroid Cancer Terms to Know

Sources:

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Vitamin D and Coffee Benefits

Take a Look at Your Skin

Metformin Hydrochloride Recall