Tag Archive for: Carly Flumer

Finding Value in Your Care: Take Action Checklist

1. Am I getting the best care or even offered the best?  

  • Is the care appropriate for my age? My condition?
  • Am I being given more than one option, if at all possible, with the pros and cons explained to me?
  • Is my provider willing to recommend me to a colleague for a second opinion if I feel that I need one?
  • Does my healthcare provider care for me as an individual or do I feel lumped together with other patients?
    • Do I feel comfortable asking questions? 

2. Are the ordered scans and blood work helping me in my care or are they ordered “just because?”

  • Does my provider explain the reasoning behind these orders (i.e. what information we’re looking for, how this will help progression of my care, etc.)?
  • When the results come back:
    • Do I have access to them? If so, are they easy to find?
    • Are they explained to me in a way that makes sense?

3. Is insurance providing me coverage or am I consistently receiving denials/is my provider having to do a peer-to-peer? 

  • Does my coverage make sense?
    • Are providers transparent about how much something may cost?
  • Are terms explained?
  • Can I easily receive access to a care representative?

4. Does my employer offer benefits that fit what I need? 

  • Health insurance 
  • Short-term and long-term disability 
  • Options for FSA and/or HSA accounts 
  • Employee assistance programs 

5. Are the medications that are prescribed working as intended? 

  • Do I understand how to use them correctly? 
  • Do I feel comfortable telling my doctor if I have any side effects and need to switch to something else? 
  • Are they affordable or are there alternatives? 

6. Is a patient portal available and easily accessible? 

  • Is it easy to find what I’m looking for? 
  • What capabilities does the portal have?
    • Can I message my provider?
    • Can I view lab and imaging results?
    • Can I schedule appointments and see upcoming appointments?
    • Can I see visit summaries of previous appointments? 

Is This for Real? Discerning Health Information Across the Web

Googling something is easy. Researching a topic and finding well-sourced, credible information is another story, especially in the healthcare sector. As we’ve learned through the pandemic, there’s a ton of health information on the internet and other forms of media, including television, social media, advertisements, and video that competes for our attention. Unfortunately, it’s up to us to determine what is “true vs. false,” to be able to apply it to our lives and potentially share with others, including family members, friends, support group members, and our healthcare staff.

How do we discern health information that’s fact vs fiction when we’re looking at different sources?

Where is the information coming from? Try looking for:

Additional websites that are reviewed by physicians and other healthcare professionals:

Social media is a good place to make friends and join support groups that consist of other people with the same disease

  • Sharing health information about different experiences, including symptoms and side effects can be a great way to learn about different aspects of the disease you may have not considered or heard about
    • However, remember that people’s experiences are purely anecdotal and every patient is different. This can be true of blogs and other healthcare websites
  • If you find information that may be relevant to you and/or that you may be concerned about, share it with your healthcare team

Managing Medical Mistrust: Creating a Healthy, Trust-Based System

If there’s anything “positive” that has come out of the pandemic, it’s that it has brought to light the many disparities that are still prevalent in healthcare. These have translated into disparities in the Covid world based on where people live, their education level and income, and their race, among others.

The same can be said about oncology specifically. Health disparities in the diagnosis and management of cancer can be described as being “higher cancer death rates, less frequent use of proven screening tests, and higher rates of advanced cancer diagnoses.” This was (and still is in some areas) exacerbated by the pandemic, where patients either opted to delay treatment or were told they couldn’t undergo treatment because of the surge of Covid patients in clinics and hospitals. Additionally, there have been delays in patients undergoing screenings for cancers, including colon, cervical, and breast cancers, especially among those of racial and ethnic groups, who already had a decreasing level of access to healthcare services at the beginning of the pandemic.

Undoubtedly, this has increased the level of mistrust in the healthcare system. How are patients supposed to get the care they need? How do providers increase their level of trust with their patients who are already at a disadvantage and have a greater risk of becoming infected with Covid or any other disease? Below are ways the healthcare system can bring patients and providers together to create a healthy, trust-based system:

Providers should:

  • Establish empathy and understanding of patients’ needs and values (and reiterate them back to the patient)
  • Offer different treatment options, if available. Be willing to discuss the pros and cons of each option, including recommendations
  • Discuss clinical trials as a treatment option, if applicable. Yes, healthcare is a business, but instead of a provider seeing it as “giving up” a patient, understanding that the patient’s health and well-being comes first is much more important
  • Work with the patient’s insurance, if necessary, for prior-authorizations on medications and procedures
  • Be honest with your patients. Gauge and/or ask about the amount of information they can handle when providing a diagnosis
  • Tell a patient if they don’t know something and/or if errors have been made. Being vulnerable and transparent in this regard demonstrates that you’re human

Patients should:

  • Be respectful of the physician’s (and other patients’) time during each appointment by bringing in a list of questions that need to be answered
  • Utilize patient portals!
  • Ask questions if unsure of anything spoken about during an appointment, especially medications
  • Be your own advocate when discussing your health (i.e. bring up why certain solutions are important to you)
  • Understand there are multiple patients being taken care of and no one patient’s needs are more or less important than another

Involving Patients in their Care: The Clinical Trial and Drug Development Processes

Patient involvement in every facet of healthcare is incredibly important in creating better patient outcomes. I believe this is especially true in the rare and chronic disease communities, including cancer. One facet that is particularly key for patient engagement is the development of drugs produced through the clinical trial process.

Clinical trials can cost millions to fund with the goal of producing a product(s) that may or may not help it’s targeted disease population. Thousands of patients rely on these trials to find a cure and/or enhance their quality of life by providing symptoms of relief. Yet many don’t know about them, and if they do, it’s a struggle to find them, much less enroll in one.

As a person who takes on many roles, including a rare disease patient and a cancer patient, as well as someone who has translated clinical trial protocols for a lay audience and now recruits for those trials, I have seen firsthand the barriers that patients face when it comes to potentially life-saving treatments. Below is what I have encountered and what we as healthcare professionals can do about it:

Visibility Into Clinical Trials

While most patients know of and about clinical trials, they are often not aware that they may be an option for treatment. Healthcare is a business, and because of this, doctors feel like they’re “losing” their patients (aka revenue) when they refer their patients. However, most healthcare organizations, facilities, etc. boast that they’re focused on patient-centered care. Patient-centered care means focusing on the needs of each patient and providing the best treatment possible even if it comes from another source.

The Language of Clinical Trials

Clinical trials are often discussed using medical jargon that is too confusing for patients to understand, especially the eligibility criteria. Patients should not be expected to learn a new language to understand the treatment process. Rather, they need resources that will help them understand if they qualify, what will happen in the trial, and how long they’ll be in the trial for.

Outcomes of Clinical Trials

A patient who had participated in a clinical trial once told me that the investigators focused mainly on whether the drug that she was receiving was treating her condition and never considered her quality of life. Quality of life should automatically be included as a measurable outcome in each clinical trial even if it’s not the main purpose.

Involvement in Clinical Trials and Drug Development

Patient centricity, as written above, has become a buzzword in the healthcare industry. The drug company, AstraZeneca, defines it best: “Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best outcome for that patient and their family.” Are we really doing this if patients aren’t involved in the drug and clinical trial development processes?

How can patients invest themselves, and the government and pharma invest in patients, to potentially get a better ROI?:

  • Look at Patient-Centered Outcomes Research Institute’s website, whose work focuses on outcomes most important to patients and research that focuses on gold-standard randomized controlled trials, as well as observational studies.
  • Sign up for AstraZeneca’s Patient Partnership Program
  • Research articles on drug development for your disease and contact the authors
  • Engage in the FDA’s Patient Representative Program
  • Join the FDA’s Center for Devices and Radiological Health (CDHR)’s Patient Engagement Advisory Committee
  • Join the FDA’s Patient Engagement Collaborative
  • Participate and/or request a Patient Listening Session
  • Present at an Open Public Hearing Portion of an FDA Advisory Committee Meeting
  • Get involved in:
    • The FDA’s Center for Drug Evaluation and Research (CDER)’s Patient-Focused Drug Development program by subscribing to their email updates
    • A patient advocacy group and/or think tank
    • An organization related to your diagnosis that may have doctors on their Board that you can reach out to and share your story and the importance of involving patients

Find more information in this PDF created by Global Genes

Empowered Patients Empower Patients: How to Take Charge of Your Diagnosis

What comes to your mind when you think of the word “empowerment?” Do you think of a specific person, thing, or event? What about an “empowered” patient? Do you think of a patient or patient advocate who goes above and beyond and fights for their health care, or embodies themselves with a wealth of knowledge about a specific disease? At the Patient Empowerment Network (PEN), we believe that patients have power. They have the power to learn about and understand their diagnosis, find a healthcare team that understands their needs, values, and morals, and support other patients on their cancer journey – all to create better health outcomes. Are you looking to become an empowered patient? Here a few ways:

  • One of the most important things about your journey is that it is your own. No cancer diagnosis is alike, just like no patient is alike. Your story is unique, and the power of sharing your story is unmatched. Storytelling is what connects others and develops strong bonds. Share your story with your family and friends, post about it on social media, and connect with patient advocacy organizations (including PEN!) to share your story across the globe. 
  • Create your own advocacy blog: This article has how-tos and best tips. 
  • Participate in Tweet chats: Tweet chats are chats that occur on Twitter at different times/days using a hashtag. PEN has a tweet chat called #patientchat that occurs every other Friday. These chats are hosted by a variety of organizations around different topics. As a participant, you answer a series of questions prompted by the host. It can be a great environment to express your opinions and talk about your experience. You can find Tweet chats relevant to you by using Symplur’s Healthcare Hashtag Project, which lists hashtags specific to what you’re looking for. You can also see if specific organizations you’re following on Twitter host chats or start your own! 
  • Join a support group in-person or online. There are a number of different organizations that offer support groups (here are some of my favorites!) where you can share your story and hear other’s, ask questions, and relax knowing you’re in a judgement-free environment. 
  • Utilize PEN’s Digitally Empowered Program: This program consists of 10 modules with videos and resource guides to navigate all that technology has to offer including navigating healthcare resources, forming a support network, using social media, navigating your health with different devices and apps, and using telemedicine. 
  • Keep updated on the latest research about your diagnosis, and share what you find relevant to you with your healthcare team and/or on social media. This article explains how to read scientific papers. 
  • Utilize PEN’s online resources tailored to the cancer community, as well as specific cancers, that focus on what to do when you’re newly diagnosed, testing and treatment options, clinical trials, and accessing and affording healthcare. 

“Wait, There’s a Good Cancer?”

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.

The Caregiver Impact: A Vital Part of Healthcare

Carly FlumerCarly 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 […]

Empowering Ourselves Forward: Applying Skills to Our Cancer Journey

During the pandemic, all of us have had to do some adjusting, some more than others. As cancer patients, we recognize the “new normal” everyone else is experiencing. While this can be detrimental, it can also be seen as somewhat gratifying. The non-cancer world finally understands what we’ve gone through and/or are going through on a daily basis and for the rest of our lives. Yet we’ve all learned new skills and coping mechanisms to make the best of our situation:

Virtual Appointments (Telehealth)

By now, the majority of patients have experienced at least one telehealth appointment where we see a doctor, NP, PA, etc. virtually. Whether this a completely new experience or not, there are many ways in which we can benefit from these appointments, which, hopefully, continue into the future.

What can be applied in the future:

  • Writing down a list of questions before your appointment so that nothing is missed
  • The feeling of comfort with your health care professional, especially if they weren’t in a white coat. They’re humans just like us
  • Asking questions when you don’t understand something – there is time!
  • The importance of having a caregiver as a second set of eyes and ears

Being Active

Gyms were closed (and some still are) for a long period of time, which forced us to be creative in being active.

What can be applied in the future:

  • If you watched YouTube videos or downloaded fitness apps, continue to use them to apply those movements to your routine
  • If you tried free classes offered by a local studio or gym, see what these places offer in-person
  • For motivation, grab a family member of friend to keep you accountable

Mindfulness

Perhaps the hardest part of going through the pandemic is the mental aspect, especially for cancer patients who are considered more vulnerable.

What can be applied in the future:

  • Continue using apps and YouTube videos to guide you through meditations
  • Keep a journal to write down your feelings
  • Set intentions at the start of each day
  • Remember how far you’ve come and what you can be grateful for

Family and Friends

Social distancing and wearing masks were suggestions (and in some states mandatory) to help stop the spread of the virus. This led to family and friends not being able to see one another, often for months. What’s more is the masks often concealed our expressions, making communication a little bit harder.

What can be applied in the future:

  • Spend more time with people who care about you, knowing it is possible for it to be taken away from you
  • Practice being in the moment, really focusing on what the person is saying and watching their facial expressions
  • Remember your own needs: people may now want to get together more often, but that may not be possible due to a number of factors, including your place in treatment, symptoms, and mental/physical/emotional states. Take the time you need for yourself

The Power of the PEN Network Manager Program

I never dreamed of being a patient advocate, but then again, I never dreamed of receiving a cancer diagnosis, either. When I was diagnosed with thyroid cancer in January 2017, I didn’t have any symptoms. I was told I had the “good” cancer or “the cancer to get if you had to be diagnosed with one” by my doctors. I took this information to heart, and accepted that cancer was now a part of my life, and there wasn’t anything I could do about it.

It wasn’t until I ended my treatment, when I declared myself a survivor, that I realized I was completely wrong. I recognized there were choices I could have made regarding my treatment plan and there were still opportunities to take charge in how I was treated as a patient. Enter patient advocacy in the cancer world.

Everyone has a story, no patient or cancer is the same. We each have our own unique experience of how we move through the healthcare system beginning the day we’re diagnosed with the “C” word. I knew my story was unique because I was an AYA patient, or an adolescent and young adult, I was working full-time, and I was in graduate school. I dreamt of being published on places other than social media. I wanted an outlet where I was free to share my side of the story without having to hold back. A place where I could share not only the ups and downs of my journey, but my own insights of what it was like to be a young cancer patient. A place where I could advocate for other thyroid cancer patients – let them know what to expect, the questions they should ask of their care team, and how to best take care of themselves. Enter the Patient Empowerment Network.

Patient Empowerment Network (PEN) is an advocacy organization for cancer patients whose “mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them with receiving the best, most personalized care available.” I discovered them through one of their tweet chats on Twitter using the hashtag #patientchat. I immediately reached out to see how I could get involved. Leadership discussed their strategic vision of having “managers” for different cancers that would create and curate content to educate other cancer patients and help them feel empowered. I was honored when I was told that I would pilot this program as the Thyroid Cancer Network Manager, and my content would be read and shared by others.

The PEN Network Manager program officially launched in March 2020 with the goal “to support health communities around important topics and provide navigation for the path to empowerment. Through various mediums, social media platforms and content formats, network managers develop specific messages, seek out resources and contribute to amplifying the needs of specific health communities via guidance of an established editorial calendar.” For example, I’ve had the opportunity to write a variety of blog posts and participate in tweet chats on a number of different topics, including resilience, health literacy, telehealth, and what it’s like to be an adolescent and young adult (AYA) with cancer. It has been my greatest privilege to connect with other patients through this content, inspiring them to be their own advocate.

To find PEN’s current team of network managers, visit https://powerfulpatients.org/about/#networkmanagers. Clicking on each person’s picture will bring you to their bio as well as content they have created, including recipe guides, interviews, comedy sketches, infographics, and more. Note also that each manager has a personal PEN email that you can use to contact them. PEN managers thrive on encouraging patients and their caregivers to feel more confident in voicing concerns and communicating with their healthcare team, and ultimately empower them to become advocates for themselves and their loved ones.

Joining PEN’s network of cancer managers has truly been inspiring. Although we’re all across the world, conversing with them via email and Zoom chats and hearing their stories and thoughts of how to resonate with more patients is what feeds my soul. PEN is constantly growing, with their goal of representing all cancers. For more information on how you can get involved, please contact Nykema, PEN’s Network Manager Coordinator, at kema@powerfulpatients.org.


As a caregiver and Care Partner Network Manager with PEN, I constantly search for practical information to use and pass along to those I support. I offer support by listening and providing solutions to empower caregivers to improve their resilience. – Sherea


 

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

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

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

Kids:

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

Family and friends:

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

Work:

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

Sources:

Top Resources for Thyroid Cancer

General Resources, Including Medical Information

Find a Physician

Support Groups

Reaching the Peak: Finding Resilience During Cancer

What does it mean to be “resilient” as a cancer survivor? Does it mean having the courage to remain positive? The strength to carry yourself into the next chapter of this “new normal” life?

In my opinion, having resilience or being resilient means all those things and more. However, resilience can also be built upon a collaborative effort made by both the patient and their healthcare team.

In the recent 2020 symposium held by the National Coalition for Cancer Survivorship, results were presented from a survey that stated patients believe that being proactive in the beginning of treatment can lead to better health outcomes. Part of being proactive on the patient side is asking questions of your care about diagnosis and prognosis, treatment options, physical/mental/emotional side effects, and short-term and long-term effects on quality of life. During the treatment process being proactive can also consist of contacting your care team with questions rather than guessing what “should be” happening, instructions on how to take medications, and any unexplained side effects.

Managing these side effects can also count as resilience. For example, speaking with a social worker or seeing a therapist may help with the emotional trauma of a diagnosis. Moving your body and getting your blood flowing by walking, running, yoga, and other forms of exercise can show mental and physical resilience. Most importantly, asking for help when you need it and being specific in what you need can show determination.

At the end of treatment, the journey is not over. Rather, it can feel like it’s just beginning. As you look back on how far you’ve come, contemplate if there’s anything you would’ve done differently. Maybe you were fearful, and now you’re more curious. Maybe you were afraid to share your story and what people would think of you. Now you know that none of that matters, except what you think, what you feel. Your story is powerful, your feelings are valid, and you have the courage to push forward.

Resilience isn’t something to be won; it’s something to be explored. Just like a diagnosis, it doesn’t come easy. But take a moment, breathe, and know that there are people rooting for you. Keep going.

Thyroid Cancer Glossary of Terms

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

Cancer: The Scariest Ride of Them All

June is home to National Cancer Survivors Day (June 7th), a day to celebrate the journey of survivors, who are defined as “patients diagnosed with cancer.” While there are multiple resources for cancers patients, including an entire website dedicated to the National day, I thought that I would share my perspective of what it means to be a patient/survivor on an emotional/mental level:

Emotional/Mental

  • Sadness and in denial when diagnosed
  • Angry that this is happening to you specifically
  • Hopeless because of a lack of control
  • Frustration when you don’t understand your treatment plan
  • Guilt knowing other cancer patients have it worse
  • Anxiety when preparing for a scan or an appointment
  • Betrayal when you find out who your true friends and family are
  • Hope knowing you may make it out on the other side
  • Strong when you make it through the next chemo and/or radiation treatment
  • Resilient when you’re declared “in remission
  • Fear that the cancer may come back

This is only a glimpse into the many feelings felt, the life that is suddenly a roller coaster with ups and downs and hidden twists and turns. Sometimes you may not hear the whole story, the emotions guarded underneath a face that tries to “be strong” through it all. Really take a listen when you, as a caregiver, a medical professional, a friend, or a family member, ask a cancer patient, “How are you feeling?” Look at the facial expressions, the body language, and the words they’re using. To summarize: Be present.

How to Make the Most of a Virtual Visit

“Well, we need to check your titer,” the doctor explained as he went over my lab results via a recent Zoom call. “Titer?” I thought. I know I’ve heard that term before, but I wasn’t really sure what it meant. The doctor reappeared the word a few more times, exacerbating my confusion. I was too embarrassed to ask what he meant; he was talking quickly. When he eventually said, “The titer is the strength of the antibodies in your blood,” I finally understood and felt more at ease.

As we face this pandemic, chronic and/or rare disease patients like myself are facing an extension of the “new normal” that everyone is experiencing firsthand. Our doctor’s appointments are critical times when we’re able to explain how we’re feeling, how our medication may or may not be working, and what the next steps are. But our visits become different when our face to face sessions turn virtual. I believe we become more vulnerable, as we invite the doctors into our home lives.

While healthcare has certainly come a long way and telemedicine has been on the horizon, virtual visits are now the norm. We have been placed, both as patient and healthcare professionals, in a position that allows us to take advantage of the technology we have and still provide and receive great care. In my opinion, these visits should not be considered a hassle, but rather an encounter that continues to focus on patient education as we face unprecedented times.

A part of patient education is health literacy. Health literacy can be defined in many ways, but the short, paraphrased version is that health literacy is the ability of patients to understand health information (verbal, visual, etc.) in order to make the best decisions about their health. This includes understanding the messages that are being conveyed to them by health professionals, including symptoms to look for and how to take medication. The case remains the same whether visits are in-person or virtual, perhaps with greater emphasis on the latter, in my opinion.

Below, I will highlight things that patients can do to make the most of their health appointment, with a focus on health literacy.

Tips for Patients

  1. Discuss any information you have questions about during your appointment, especially if it has jargon you don’t understand
  2. If a doctor speaks too quickly, tell them to slow down or repeat what they said
  3. Take notes during your appointment if having something visual helps you remember
  4. If your doctor mentions a word you’ve never heard of, ask them to define it
  5. Share your understanding of how a certain medication or treatment is helping you and/or if you think something could work better
  6. If you’re unsure of how to take a medication, show the label to your doctor to have them explain
  7. If you are provided with test results, ask your doctor to review them carefully with clear language