Cancer: The Scariest Ride of Them All

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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.

Health Exercises to Tap Into Your Resiliency

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The current pandemic the world is facing has caused a whirlwind of emotions, especially for immunocompromised patients, including cancer patients. Every feeling, from grief to sadness, and anger to hopelessness, has been magnified as our minds take a toll and our level of vulnerability has grown.

Right now, we are doing the best we can with the knowledge, experiences, and tools that we have. A couple of ways to utilize these tools and stay grounded during this time include meditation and exercise. Below are a list of resources, including ones I have personally used, that can be utilized to build inner and outer strength.

Walking

A great form of exercise that can be done anywhere and doesn’t require any equipment. During your walks, take in the scenery around you. Challenge yourself by quickening your pace, going up and down hills, or see how far you can go in a specific amount of time.

Yoga

Another activity that requires little to no equipment. Find free videos on YouTube or look to see if a local studio is offering online classes. Yoga allows your mind to calm and your stress hormone levels to reduce as you focus on slower movements and breath work.

Aerobics or high-intensity interval training (HIIT)

Helps improve cardiovascular health and endurance through quick movements done in rounds and can utilize the entire body. YouTube and Instagram are great places to look for these types of exercises. You can also incorporate weights (if you have them) to make it more challenging.

Strength training or weight lifting

Beneficial for both men and women, and burns more calories over time. You don’t have to be buff to lift weights or even have equipment. Buckets filled with heavy items or other things with handles, soup cans, bags of flour, a dish towel, or even body weight can be used to break a sweat. Again, YouTube and Instagram are your places for videos. Pinterest can also be helpful by searching for “body weight exercises,” or “exercises with no equipment.”

  • Mastering the form of each exercise is crucial to avoid injuries. Form > the amount of weight you can lift.
  • Do each exercise slowly. Form a mind-muscle connection.
  • Don’t forget to breathe!
  • Stretch!
  • Favorite exercises:
    • Bicep curls
    • Tricep dips
    • Bent over rows (back)
    • Rear delt flys (deltoids)
    • Upright rows (shoulders/trapezoids)
    • Squats
    • Deadlifts: Romanian, sumo, one-leg, stiff-leg (hamstrings)
    • Calf raises
    • Military press (shoulders)
    • Chest press

Meditation

Meditation is a wonderful practice that can be used to mitigate negative thoughts and distractions. This is important any time, not just during quarantine! One of the best things about meditation: you don’t have to be perfect! Meditation takes dedication and practice. YouTube has free, guided meditations that can be done in any quiet space. Some have someone spreading, while others are simply music. Apps, such as Headspace and Calm, also offer guided meditations.

A Complete Breakdown of Telemedicine

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Interview with Joe Kvedar, MD, President, American Telemedicine Association (ATA) Professor of Dermatology, Harvard Medical School Physician Scientist, Author. As the only organization completely focused on advancing telehealth, the ATA is committed to ensuring that everyone has access to safe, affordable, and appropriate care when and where they need it, enabling the system to do more good for more people.

Honora Miller:

Dr. Kvedar, thank you for joining us.

Dr. Kvedar:

I’m delighted to be with you.

Honora Miller:

Can you tell us what telemedicine is?

Dr. Kvedar:

Well, it’s not a new concept, but since the late 1960s, people have been talking and working towards this idea that care doesn’t necessarily have to be two people in the same room at the same time — that we can use technology to connect people. Like we’re doing now with this video interview, that’s the most common type of telehealth visit, but we can also connect with patients via telephone calls.

There are various remote monitoring devices that are able to monitor an individual’s vital signs or other health measures in their homes.

Finally, in the same way we exchange emails and text messages, we can do that securely with patients, what we call e-visits, which can be very helpful, as well. So there are a variety of forms, but it’s really all about care where the patient is, when the patient needs it, and not having an individual travel to visit a doctor in person.

Honora Miller:

Can you break down the differences between the terms telehealth, virtual visits, e-visits, and virtual health?

Dr. Kvedar:

I’ll go back to the beginning when there were visionary clinicians who believed medicine could be delivered this way and were doing this kind of work. They called it telemedicine. A few years into that journey, there were a number of clinicians who felt that the same technologies could be used in other ways, including education, and so they started using the term telehealth to make it broader and more inclusive. To this day, telehealth the term that everyone is mostly comfortable with.

A few years ago, some people started to say that we needed to be able distinguish between real-time and asynchronous interactions, the same way that we have video or phone calls and emails, and that we also needed to distinguish between direct-to-patient interactions and interactions between clinicians

If it is an interaction between patient and doctor, it’s a virtual visit; if it’s between clinicians, it’s a virtual consult. For example, if a physician is caring for a stroke patient in another hospital, we call that a virtual consult. An e-visit is considered an asynchronous interaction. For instance, I’m a dermatologist, so if my patient takes a picture of a rash or skin disorder, and sends it to me via a secure portal, I could respond with a message back to the patient. That would be an e-visit.

Likewise, if the primary care doctor caring for a patient decided that she wanted a picture of something looked at and sent it to me electronically, then we call that an e-consult.

Telehealth generally encompasses four areas: virtual visits, virtual consults, e-visits and e-consults. Digital Health has become a term of art because that includes everything from robotic process automation, to artificial intelligence, and so on.

Honora Miller:

What is telemedicine remote monitoring?

Dr. Kvedar:

Well, remote monitoring is best suited for certain conditions, mostly chronic illness — conditions like congestive heart failure or high blood pressure or diabetes, particularly type 2 diabetes, when it’s helpful to have more data from the patient about their condition.

For example, if you were starting out on blood pressure medication, we could give you a blood pressure cuff to take home, so that you could take your blood pressure for a week. The cuff, connected by Bluetooth, would automatically share your BP readings with your healthcare provider.

That would be an example of home-monitoring. For people with heart failure, we might give them a wireless blood pressure cuff, weight scale and a device to measure oxygen levels in the blood, so that we can remotely monitor their vital signs.

There are a variety of opportunities to monitor all types of health measures using wearable devices like an Apple Watch, and sensors, that can remotely monitor things like an EKG, sleep patterns, daily activity and other functions.

Honora Miller:

Is the monitoring done in real-time? Or do patients supply the data as it becomes available by entering it into a portal?

Dr. Kvedar:

A lot of remote monitor is done in an asynchronous way. For example, you might step on a scale every morning, take your blood pressure and heart rate, and that personal health data is securely transmitted to your healthcare provider and winds up in your electronic health record. Then a nurse or other provider could look at your data and put in a call to you if something was not quite right, and you’d have a dialogue. Again, it could be a video call or an audio call, but you’d have a dialogue with your provider about what was going on — maybe your diet was off, or maybe you need to increase your medicine dose, but that’s typically how it’s done. It’s not usually done with real-time readings.

Honora Miller:

Can you speak to what telemedicine care looks like in the era of COVID-19?

Dr. Kvedar:

I’ll start with statistics from my own large delivery system in Boston to give you a flavor, and by the way, our numbers are not unique. February of 2020, across two academic hospitals, we did about 1600 virtual encounters. In March, we did 89,000 and in April we did 242,000. We are not unique because I’ve been talking to my colleagues around the country and everyone’s having that kind of accelerated demand for telehealth services, what we would call hockey stick growth, partly because, to help stop the spread of the virus, people need to stay at home, yet we still have to take care of our patients. The technology that you and I are using for this interview is common now, whether it be Zoom or Skype or FaceTime.

People are, for the most part, comfortable with video calls, and likewise, patients have really taken to it. Patients generally have been very, very positive. Doctors are warming to it. Many doctors are saying Gosh, there’s so many things I can do this way that I hadn’t thought about, and I’m going to continue to practice this way. So telehealth services have grown a like wildfire. Before the pandemic, mental health was the biggest user and for sure now mental health providers are still the biggest users of telehealth. In mental health care, providers are talking to the patient, so it’s very easy to make that transition. And then we mentioned chronic illness before, but it turns out that the screening questions used to decide if someone needs a COVID test can easily be asked via telehealth.

if someone is sick at home with only mild symptoms, that individual can be monitored quite well using this kind of virtual care tool set because it’s all about asking questions.

Honora Miller:

So those are the main things that we’re seeing — the use of telehealth for follow-up visits for all kinds of conditions and health concerns, mental health, as well as respiratory symptom questions to determine if individuals need additional testing for coronavirus.

I’m wondering if you can speak to whether or not health insurance coverage has kept up with the pace of change in this arena?

Dr. Kvedar:

So great question and any time you ask about insurance coverage, it is always a long answer with a lot of caveats. I’ll start with Medicare, the Centers for Medicare and Medicaid Services, the biggest payer in the country for the elderly and disabled, and they said very early on they would pay for telehealth at the same level they would pay us for seeing you in the office, so that was a big boom. They’ve since refined that to pay for telephone calls at that rate, as well. That, by the way, is really a nod to addressing disparities because there are people who can’t afford a smartphone or have broadband and we want to make sure that we get to them.

I credit the Medicare folks for seeing that. Medicare is doing very well. Medicaid is state-by-state. Reimbursement will depend upon where you live. But most states, most governors, during this State of Emergency, said that they should pay and most private payers are paying for telehealth as well, so it’s pretty rosy right now, in terms of reimbursement.

One of the things that we’re doing at the ATA is trying to make sure that enough of that reimbursement culture sticks when we move out of this health crisis so that people can continue to enjoy the benefits of this type of care delivery.

Honora Miller:

Do you think that there will be legislation required in order to have that level of coverage continue or is there going to be another mechanism to advocate for that to be the case?

Dr. Kvedar:

Again, great question. I would say that if we look at history as a guide, when Medicare decides to pay for something, private payers typically follow, and there was no need for legislation because it was something that just rippled through the medical economy. So that’s what we’re hoping will happen again. In every state Medicaid is a little bit different. Patients have found that they can get care and there’s this what I call the magic of access, quality and convenience. And when you get that kind of care delivery, everyone feels great about it.

Patients have experienced that and doctors have experienced that. I would just suggest that you listeners and readers talk to their company’s human resources person, and tell them how much they’ve enjoyed their telehealth benefit; if you are insured by the government, take the time to write your senator or representative, and tell them that you don’t want to go back to in-person only care. I think we will have to advocate some but there’s such an overwhelming positive response that I’m quite optimistic that it will stick.

Honora Miller:

Having recently experienced four or five different medical professionals interacting with me through telemedicine, I’ve noticed that there’s a different cadence to each of the visits depending on the person’s communication style and their comfort level with the medium.

How patients can prepare themselves in order to get the best possible experience out of telemedicine?

Dr. Kvedar:

Sure, but before I get to that, I would just quickly say that we’re working on doctors, too, on what we’re calling “website manner.” It used to be something that we sort of said with a chuckle, but we’re very serious about it now. And it’s things like looking directly at the camera, and dressing up so that your patient takes you seriously.

But back to your question about how patients can prepare for a telehealth visit. I’d suggest everyone think about being more conscious of the information that your doctor needs to help you, either in making a diagnosis or by helping you with a care plan. For example, when we were able to have office visits back in the day — that was only several weeks ago — the doctor was asking questions, they listened to your lungs, your heart, even indicators such as your speech pattern or if you look your doctor in the eye. They were collecting information constantly during that office visit. So, let’s say, you’re a patient with diabetes. You should make sure you have your blood sugar readings handy.

Let’s say you’ve been following your blood pressure, make sure you have your blood pressure readings handy.

For me, as a dermatologist, it’s so important that we have good images of whatever it is on your skin that you need looked at. So it’s really thinking through what information your provider needs, and sometimes a doctor will help you. In our case, in advance of a telehealth interaction, we send patients information about how to take good quality pictures of their skin condition. So we’re learning, too.

Also, make sure you have your questions ready in advance, which is always good advice, both for an in-person or virtual visit, so that you get all your questions answered.

Make sure you have all the information about your condition that you can gather and make sure you have your questions prepared.

Honora Miller:

In relation to lab tests that a patient may need to get, how does that work in the telemedicine context?

Dr. Kvedar:

Well, that’s a wonderful question. Notwithstanding home pregnancy tests and the like, there are a number of companies making great strides towards taking a drop or two of blood and having a test done in the home, so we can look forward to that in the future.

In the meantime, the answer is, you need to go to a lab, hospital or clinic for testing, which is in most cases what happens currently. Things like genetic tests can be done with saliva, so some samples can be packaged from the home and shipped to a lab to be evaluated.

So it depends on the test, but unfortunately, for a lot of these tests, we still have to send people to a lab to get a blood specimen drawn or to leave a urine or stool specimen.

Honora Miller:

How can patients best identify whether their doctors provide a telemedicine option?

Dr. Kvedar:

Well, these days, I think most doctors are being very proactive, because we have this dilemma, where we want to take care of you but we’re discouraging you from coming to healthcare facilities because of the risk of contracting the virus.

If your doctor hasn’t reached out to you and you feel like you need a consultation or some care, reach out to your doctor and ask them what telehealth platform they’re using.

The government also said in the middle of March, when they relaxed the reimbursement rules, that providers could use any technology right now that we wanted during this crisis, including FaceTime, Skype, Google Hangouts, Zoom et cetera.

I’ve been telling patients, if you’re comfortable, there’s no harm in asking your doctor’s office if they will talk with you via FaceTime or another platform. I would say the first step is to ask your provider. Most people can also get access to basic telehealth services through large pharmacy chains. If you happen to have a CVS app on your phone or a Walgreens app, you can get a telehealth visit that way as well.

Most health plans, even before this health crisis, would offer an option for you to get a telehealth visit. I hope your doctor is responsive and he/she should be, but in the event that your provider isn’t offering telehealth visits, other options exist.

Honora Miller:

Can you speak to what tools a patient will need to adequately engage with patient portals?

Dr. Kvedar:

Patient portals have been around for a long time. However, I would give us a bit of a black eye on making them user-friendly. I don’t think we’ve done a very good job of that. And again, this is a patient empowerment conversation, and I don’t know that we’ve done a very good job of empowering people to interact with us through those tools.

That said, all of a sudden now patient portals have become a primary way you’re interacting with your healthcare providers, so we’re upping our game. It’s too bad it takes a crisis but there it is, and I think we’ll get much, much better.

I often say, every service you consume other than healthcare has a digital front end that has a way of interacting with software to get things done easily. For example, you take a picture of your check and deposit in your bank account with just a few taps on your smartphone. There’s millions of examples now, and health care is just getting going in that regard.

The patient portal story is really mostly about security, that is to say, it’s a very secure electronic environment for you to interact with your healthcare provider. The basic things that you can do there, apart from doing a virtual visit, is to do billing information, usually there’s a way to get a list of your medications, ask for prescription refills, schedule appointments, get letters for things like school physicals, and that the like. Nowadays, those things can be handled electronically.

There’s a little bit of, I would say, activation energy for some people, because signing up can be complicated.

It is so secure you are sometimes required to submit a letter or do something extra than you would to sign up for a normal website, all in good intent. I would urge people to put up with whatever barrier hits you in the beginning. Once you get involved with a patient portal, and we’re working very hard now to make it a really a good experience for you, patients will be able to not only interact with us as providers, but you will be able to access all kinds of information and services offered by your healthcare system, access lots of information from your record and so forth.

Honora Miller:

As a cancer patient, and for others living with chronic conditions, how might telemedicine impact the future of survivorship?

Dr. Kvedar:

It’s a great question. One aspect of survivorship is things like living wills which, if it isn’t done electronically, we will have to move in that direction, to enable that. There is a lot of interest in interactivity with palliative care and hospice around how to better care for patients, particularly around medication management. Patients can be afraid of opiates and sometimes they’re in terrible pain, so we need to get this right. So those are a couple of examples.

Honora Miller:

Is a potential for telemedicine to be used in lieu of in-person visits to such an extent that the medical provider doesn’t get to see the patient enough to pick up on subtleties that are crucial? Can you share any insights about this concern?

Dr. Kvedar:

I think that’s wonderful insight and we are definitely grappling with that for sure, especially now that telehealth use has surged. Before this pandemic hit, we had only one channel healthcare delivery to come to the hospital or doctor’s office. Now of course the answer is, let’s do a telehealth visit.

But the truth is somewhere in the middle, and I trust clinicians to have good instincts about that.

For instance, patients that we’re treating for a chronic illness, maybe we do every other visit in the office so that we can have that face time and actual interactivity. There’s something about in-person interactions with patients that’s very special. I take care of patients with acne, for example, and arguably that can be done online. But I would say we’ll probably end up doing every other visit in the office, because you want to get to know the patient, their family, etcetera. It’s just that right now where we don’t really have a choice.

Honora Miller:

Can you speak to privacy concerns around telemedicine?

Dr. Kvedar:

Forty-eight states have temporarily loosened their licensure restrictions in response to the pandemic. As, a patient, that may or may not hit your radar, depending upon where you live. Here in Eastern Massachusetts, I have a medical license in Massachusetts, but regularly take care of patients who live in New Hampshire and Rhode Island, because they often had come in for office visits. So now if we’re doing follow-up care, there’s a mechanism where I can still take care of them, even though I don’t have a medical license in those two other states.

Waiving restrictions on state licensure is important to point out because it’s really enabling us to again deliver better care to more people. The question then becomes, after this crisis is over, will we have to go back to the very old-fashioned, state-by-state geographic border-based care delivery model? This is something that the ATA is working on, as well as the need to maintain patient privacy, especially for providers using telehealth for the first time, who may not be familiar with these new procedures.

I would also point out that the biggest part of health data security is how we record that visit in the medical record, and that hasn’t changed. We do that in a very secure way. It’s something we take very seriously. And I don’t mean to say that you’d never get hacked. It’s part of reality that anyone can get hacked any time, but I don’t believe it’s something that should get in the way of delivering care.

Honora Miller:

Thank you, these are interesting times and we are moving at an amazing speed, and just the incredible growth that you described it really is a testament to how there can be interesting unintended consequences of a pandemic. Thank you very much for joining us and for you sharing your expertise.

Dr. Kvedar:

It’s been a real honor and pleasure.

Care Partner’s Checklist During a Crisis

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PEN’s Care Partner Network Manager, Sherea Cary, shares her tips for care partners during a crisis:

 

How to Make the Most of a Virtual Visit

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“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

Tips for Patients on Staying Connected Despite Physical Distancing

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We are in a crazy time right now, and no one has experienced anything like it…except for cancer patients. As high-risk patients, we know what it’s like to distance ourselves from others and practice good hygiene. I know I do.

As a thyroid cancer patient, I underwent radioactive iodine treatment, where I became radioactive. I was living with my family at the time, and I had to have my own room and bathroom. No family member could come within a certain distance from me. Not even my dog. I remember them leaving meals outside my door, and texting a parent or sibling when I needed something. It was strange, yes, but I knew it was what I had to do to keep myself and my family safe.

The same thing is happening right now. We’re told to stay at least 6 feet apart from people at all times. Performing normal tasks such as going to the grocery store, a friend’s house, and even work are no longer possible. It creates a sense of grief in all of us, as we feel lost without our normalcy. Instead, we are living a “new normal,” something that cancer patients have already been long accustomed to. It’s as if the rest of the world gets to see how we live, how we feel.

We may have to physically distance ourselves, but staying connected is still possible. And it is in these moments that we can learn how to cultivate strong relationships. We live in a world with an abundance of technology. We have the ability to call, text, email, video chat, Tweet, etc. Had this pandemic happened a long time ago, none of this would’ve been possible. Social distancing would be real.

To take advantage of the opportunities that are currently presented to us, I’d like to highlight the ways in which we can stay connected:

(NEW!) Virtual Empowered #PatientChat | Friday, May 15 @ 1PM EDT

The Virtual Empowered #PatientChat is a moderated conversation conducted online via Zoom and Facebook Live. This support group will feature an expert moderator, a panel of passionate patient advocates and care partners, and other people seeking a consistent friendly community. Learn more and register!

 Support groups via Zoom

  • Our Odyssey
  • Smith Center – for AYA patients (located in the Washington, D.C. area but is open to patients all over)
  • Look for ones from specific cancer orgs (ex. Thyca, Inc.)

Facebook support groups

These can be found for cancers from the general (ex. breast cancer) to the specific (ex. breast cancer with BRCA1 mutation)

Tweet chats

Search for these using the hashtag as seen below. A few of my favorites include:

  • #patientchat
  • #ThyCaTalk
  • #bcsm
  • #HealtheVoicesChat
  • #medtwitter
  • #HCLDR

Service as Medicine: Cheer Someone Else Up and Cheer Yourself Up

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Service as Medicine: Cheer Someone Else Up and Cheer Yourself Up from Patient Empowerment Network on Vimeo.

MPN Network Managers, Summer and Jeff sheltering in place from San Diego, California, challenge listeners to be less consumed with worry by looking at service as medicine. They share how their theater programs, mentoring others and church activities have empowered them to give more of themselves and focus on the positive.

What activities do you enjoy that help you serve others? Share it with Jeff and Summer! question@powerfulpatients.org

The Value of Patient Communities

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When I was diagnosed with cancer, I thought “This is all on me. I’m going to get through this on my own.” I didn’t want to burden anyone with my new “problem.” I had my family, of course, but even then, I didn’t wear them down with upcoming medical bills. In my mind cancer equaled a solo journey.

It wasn’t until late into my journey as a cancer patient that I found that I needed others. I needed a community of people like me who were going through the same thing I was. A group of people that I could call a “second family.” Searching for “thyroid cancer groups” on Google led me to Thyca, Inc., an organization specifically for thyroid cancer patients. They offer face-to-face support groups in my area, which I still try to attend.  In these groups, we’re able to freely share what we’re going through as a cancer patient and provide support to one another. Additionally, I found a group on Facebook that was specific for my type of thyroid cancer which provided even greater benefit, as we know that all cancers are different. In this group, we also share our experiences, but in a virtual format. In this way, more patients are able to come together to create a larger network of people with whom to connect and learn from.

Finding these online and in-person support groups provided me an outlet for which I could share my ups and downs and often find them reciprocated. Additionally, I learned information about what to look for in and how to communicate with an endocrinologist, a special type of physician for thyroid cancer patients. I learned about the different blood work levels to monitor in a language that made sense to me and not the scientific jargon I usually heard from my doctor. Most importantly, I found people who “get me.”

However, I was hesitant to share everything, even little bits and pieces of what I was going through and what I was feeling. Sharing data online can be scary, especially health data. That’s why it’s important to find websites and organizations that have confidentially and/or privacy policies in place and monitor people’s behavior. Look at what other patients are saying. How revealing are they being? Are they displaying appropriate behaviors (ex. helpful vs malicious)? If you feel uncomfortable, report it!

“Finding your tribe” is something I wish I had done earlier in my journey. I wish my doctors would’ve told me about support groups. As I’ve learned, a chronic illness is not something you go through alone, much less cancer. Having a group, whether it be large or small, face-to-face or virtual, can provide immense benefit for both emotional and mental health.If you’re struggling through your health journey alone and feel like you need someone to talk to or even provide a listening ear, find your community. Find “your” people. A simple Google search helped me, but there are a number of organizations to look out for. Here are some of my favorites I found as a cancer patient:

– Inspire (chronic conditions, including cancers)

– Our Odyssey (rare diseases, including cancers)

– Facebook groups (general and specific to the type of cancer)

– Twitter (find groups using hashtags)

– American Cancer Society (search for support groups)

– Stupid Cancer (virtual and in-person support groups)

– Cancer Support Community (all cancers)

– Cancerfighter.com (all cancers)

Don’t miss the Best Practices for Participating in a Patient Community Empowered #patientchat Friday 4/3 at 1pm ET | 10am PT with Carly!

Deceived But Not Defeated

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

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

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

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

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

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

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

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