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Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team

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Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team from Patient Empowerment Network on Vimeo.

How can head and neck cancer patients improve their care by partnering with their healthcare team? Expert Dr. Ezra Cohen discusses how patients can more actively engage in their care and treatment decisions, provides educational support resources, and shares key questions to ask providers about care.

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

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Head and Neck Cancer Research | How Innovation Leads to Advances in Care

Head and Neck Cancer Research | How Innovation Leads to Advances in Care

 Head and Neck Cancer | Key Factors Affecting Treatment Decisions

Head and Neck Cancer | Key Factors Affecting Treatment Decisions

 How Is Head & Neck Cancer Treatment Approached?

How Is Head & Neck Cancer Treatment Approached?

Transcript:

Katherine:

Why is it so important, then, for patients to engage in their care and their treatment decisions? 

Dr. Cohen:

I think it’s critical not only for patients but for their caregivers as well. And really, patients should arm themselves with information. And fortunately, we live in an age where information is more readily available. You don’t have to depend on a single source. Now, granted, that information can be confusing, and sometimes it’s way too confusing. Sometimes that information can even be misleading. So, one does have to be careful.  

But, having said that, I think it’s so important for patients to arm themselves with information, different approaches, and what I often tell patients is get a second opinion. With one caveat, that I’ll get to in a second.  Because the reason is this is a life-threatening diagnosis for, unfortunately, many patients. And the first approach, our first chance to treat it is our best chance to treat it.

So, you really want to make sure that you’re in a center that you’re comfortable with, preferably one that has experience. A provider that you’re comfortable with, that you feel at ease asking questions, you’re not intimidated and a plan that really makes sense for you and has taken into account what is this individual.  

What’s our best approach to this individual? Not to an entire population but what are we going  to do for this person sitting in that chair at this time? Now, the caveat for second opinions, especially for patients with locally advanced disease, there is a time factor. And what I mean by that is I have seen patients get multiple opinions and delay the start of therapy, which we now realize impacts our ability to cure the cancer.

And so, I would say it’s fine to get second opinions or even third opinions, but don’t take a lot of time doing it. The earlier therapy starts, the better our chance of curing the caner. So, there is sort of a balance there. 

Katherine:

Well, that’s great advice, Dr. Cohen. PEN has also created downloadable office visit planners to help you organize your thoughts and communicate effectively with your healthcare team.  

And that’s also in the toolkit I mentioned earlier at powerfulpatients.org. And I think this is a good segue into talking about the importance of self-advocacy. If a patient is feeling that they aren’t getting the best care or they’re uncomfortable with the care they’re getting, what steps should they take to change that? 

Dr. Cohen:

Well, I think the first thing is talk to the provider. Just have that conversation. I think we have to realize that oncologists are human, and they’re people, and sometimes they get very busy. Sometimes they don’t pay attention to as much as they should. And sometimes, they don’t even know that there’s a problem. So, I would say the first thing to do is have a frank conversation with your provider. These are my questions. Don’t be afraid to ask questions. Never be afraid to ask questions. These are my expectations.  

Can you meet them? And in my experience, not even just personal experience, but working with many oncologists over two decades, most oncologists will say, “Oh, I didn’t realize that this was what you wanted. Let’s make it happen.” So, that I would say is the first thing. Talk to the people that are already taking care of you. If, or whatever reason, that doesn’t work and you’re not comfortable, I would ask that provider, “Is there somebody else that – I would like to change. Is there somebody else that you would recommend?” In the worst-case scenario, that might involve going to a different institution. And the reason I say that’s a worst-case scenario is that especially in the setting of locally advanced disease, interrupting therapy or changing therapy in the middle really would have a dramatic adverse impact on outcome.  

So, I would try to avoid that as much as possible. If there are natural points in the care where it makes sense to consider a change, I think that would be a lot less impactful and make more sense. For instance, if somebody is going from having completed a course of chemotherapy radiation, they now have no evidence of disease on their scans, and they want to switch to a center that is closer to home, for instance. That makes sense. And we have certainly many patients that do that and that’s a natural transition. But, to change in the middle of care, that can often have a dramatic negative impact. 

Head and Neck Cancer | Key Factors Affecting Treatment Decisions

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Head and Neck Cancer | Key Factors Affecting Treatment Decisions from Patient Empowerment Network on Vimeo.

What are key factors that impact head and neck cancer treatment decisions? Expert Dr. Ezra Cohen discusses the role of imaging tests, individual patient factors, and cancer characteristics in making treatment decisions. 

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

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See More from Evolve Head & Neck Cancer

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Head and Neck Cancer Research | How Innovation Leads to Advances in Care

Head and Neck Cancer Research | How Innovation Leads to Advances in Care

 Head and Neck Cancer Clinical Trials | What Are the Benefits

Head and Neck Cancer Clinical Trials | What Are the Benefits?

 Head and Neck Cancer Treatment and Research Updates

Head and Neck Cancer Treatment and Research Updates

Transcript:

Katherine:

How is a path decided then or determined for an individual patient? Is there key lab testing that can impact prognosis and treatment options? 

Dr. Cohen:

Once a patient comes to the attention of the team, and that will usually be accompanied by some sort of biopsy, some sort of pathological diagnosis to confirm that indeed, we’re dealing with let’s say, squamous cell carcinoma. Then the next thing we want to do is we want to stage the disease. And what that means is basically we want to know as much as possible, or accurately as possible, where the cancer is and how big it is.  

So, that would almost always involve scans, usually CT scans, sometimes a PET scan. And we can talk about the advantages and disadvantages of each. Sometimes an MRI in certain situations. But suffice it to say some sort of scan. Some sort of imaging that can tell us where the cancer is, how big it is, if there are any lymph nodes involved and if that cancer has spread beyond the head and neck area.

Once we stage the disease, most patients, and I think certainly most patients should be discussed, their pace, that is, should be discussed at a multidisciplinary tumor board. Where, again, all the specialists convene at the same time, and really go over all the data that are available on that individual and come up with a treatment recommendation.  

That treatment recommendation can be a single modality. So, some small tumors can just be addressed by surgery alone, or radiation therapy alone. But, for more advanced tumors, it is often all three modalities: surgery, radiation, and chemotherapy. And the way they’re sequenced, the way they’re implemented, should be individualized for that specific patient. Again, with those two goals in mind: to cure the cancer and to preserve function.   

Katherine:

What else could guide a treatment decision? For instance, a patient’s co-morbidity, their age, things like that? 

Dr. Cohen:

All of those things. 

Katherine:

Yeah. 

Dr. Cohen:

So, beyond – and those are things of course that we would consider in the discussion, not only at the tumor board but of course with the patient. We know that the therapy that we often recommend is quite aggressive and toxic.  

Now, the justification for that is that we’re going to try to cure the cancer. And, so we think, and of course we discuss this with the patient, that putting the patient through this course of treatment is worthwhile, makes sense, because at the end of it, the goal is for the cancer to be gone. Now, not all patients will agree with that and of course, we, based on comorbidities and age and something we call performance status, we also want to make sure that the patient can get through this aggressive treatment.

Let me just go on a bit of a tangent and describe the therapy for a patient with local advanced head and neck cancer. It would involve about six to seven weeks of radiation, given Monday to Friday. Usually either weekly, or every three-week chemotherapy depending on the chemotherapy chosen.  

And possibly even surgery either before or after the combined chemotherapy and radiation. And so, we’re talking about at least a three-month course of treatment going from the start to recovery. Another three months of side effects that are less intense but still there. And it’s a lot for patients to go through. Patients and their caregivers.

And so, if we feel that there’s a serious comorbidity that would not allow the patient to do that, we sometimes have to alter treatment so that obviously, we don’t want to harm the patient with our treatment. Certainly we don’t want to put them in a life-threatening situation. So, we do have to take those things into account. The good thing about all this – or I guess the silver lining, if you will, is that these toxicities get better.   

Patients recover. So, what I tell patients is we’re going to put you through hell, but at the end of it, I want to be sitting across from you and saying the cancer is gone, and you’re swallowing, and you’re talking normally. 

How Is Head & Neck Cancer Treatment Approached?

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How Is Head & Neck Cancer Treatment Approached? from Patient Empowerment Network on Vimeo.

How is head and neck cancer treated? Expert Dr. Ezra Cohen discusses treatment methods that are utilized in head and neck cancer and details how an approach is chosen. 

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

Download Resource Guide

See More from Evolve Head & Neck Cancer

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Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team

Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team

 Head and Neck Cancer | Key Factors Affecting Treatment Decisions

Head and Neck Cancer | Key Factors Affecting Treatment Decisions

 Head and Neck Cancer Treatment and Research Updates

Head and Neck Cancer Treatment and Research Updates

Transcript:

Katherine:

What is the typical route for a head and neck cancer patient? Does it start with surgery?  

Dr. Cohen:

Well, it really depends. And what I said is that head and neck cancer, for the most part, is a locally advanced disease. And I say that because it has certain implications about the way we think about treating patients. And what I mean by that is that the great majority of patients with head and neck cancer will initially present with either a localized tumor or a tumor with involved lymph nodes.

In other words, and that’s 90 percent, 90 percent of patients will present that way. In other words, it’s actually uncommon for patients with head and neck cancer to present with metastatic disease. That’s different than many other cancers. Lung cancer, pancreatic cancer, breast cancer, many times in those situations, patients when they come to the attention of a physician, unfortunately, already have metastatic disease. That’s not the case with head and neck.  

And so, what does that mean to have a disease that’s locally advanced? Well, the most important thing, the first thing, is that most patients, we are going to be treating with curative intent. That is, we’re going to try to cure the disease. The second thing is that the disease, and its treatment, are going to have functional outcomes, potentially for that patient.

And that gets back to something I was saying before in terms of think about how much of how we define being human happens above the clavicles. It’s really what makes us human. And so that has dramatic implications obviously for the patient. So, for head and neck cancer, the fact that it’s a locally advanced disease means that we’re going to think about curing the majority of patients, at least try to. But, we’re also going to think very strongly about how can we preserve those critical organs of swallowing and speaking and socializing?  

It also is a disease that tends to recur or come back in a locally advanced fashion. And that’s the other part of why I call it a locally advanced disease. So, unfortunately, oftentimes when head and neck cancer recurs, and obviously we try to avoid that, it comes back in the same area. And, of course that has the same implications for what we try to do with treating patients.  

Katherine:

So, even using radiation and chemotherapy, other immunotherapies, the cancer will still come back? 

Dr. Cohen:

Yeah. Yeah. And I realized I didn’t really answer your question in terms of the approach to the patient. I just gave you some general guidelines. So, let me step back and talk a little bit about that. And then we can talk about the integration of different modalities. 

Katherine:

Sure. 

Dr. Cohen:

The approach really, it depends on a few things. The primary is really where the tumor is, where the primary tumor is.  

And the reason behind that is what I as saying about the functional outcome. For instance, if somebody has a small tumor of their tongue, of the front of their tongue let’s say, a surgeon can easily remove that and the patient can continue to speak and swallow normally. And so, in cases like that, obviously we would do surgery first and then, if the patient needed it for whatever reason, we might follow up with radiation or chemotherapy.

The converse is true for a tumor that may be farther back in the throat. So, let’s say an area called the oropharynx that involves the throat that you can see, the part of the throat that you can see when you open your mouth widely. Well, if we take out a tumor there, that will have much more significant implications for long-term function. The patient may not be able to swallow or speak normally again.  

And so, for those types of tumors, we would take a non-surgical approach. Not that surgery couldn’t be done, it could. But, sometimes it’s better not to do surgery up front to preserve function. So, again, it’s those two goals that we have to keep in mind. We want to cure the cancer, but we want to preserve function. 

Katherine:

Right. 

Dr. Cohen:

Then you mentioned about chemotherapy, radiation, immunotherapy. And in a non-surgical approach, that’s what we would do first. We would do either radiation therapy alone, or radiation and chemotherapy. And that primarily depends on how extensive the cancer is. The more advanced it is, the more likely we are to add chemotherapy. Because we know from clinical trials, getting back to the importance of clinical trials, we know that adding chemotherapy in advanced cancers does improve survival. And so, that’s predicated on really where the cancer is and how large it is. 

Katherine:

What about treating more advanced disease? Are the choices different? 

Dr. Cohen:

Sure. Well, let’s define what we mean by more advanced. If the cancer is still localized, so even if it’s advanced, let’s say it’s a large tumor that’s invading other structures. Let’s say there’s a lot of lymph nodes involved. We would still take – assuming the patient, ultimately, it’s always the patient’s decision. We would recommend to the patient often that we try to take a curative approach.

And that curative approach in quite locally advanced cancers would almost involve everybody, so, chemotherapy, radiation ,and surgery. Almost always involve those things to try to eradicate the cancer. If we’re talking about an advanced cancer in the sense that the cancer had come back, so it’s recurrent or it had metastasized, then we really are talking about mostly systemic therapy or some sort of drug therapy.  

And now, that almost for all patients, includes immunotherapy. Again, based on the results of clinical trials. That’s relatively new. That’s been approved now for about five years, maybe six. But it has led to dramatic improvements in outcome for these patients. Now, when we look at the long-term data from these clinical trials, we’re beginning to see that about one in five patients with recurrent or metastatic disease are still alive five, six, even seven years later. That’s something that we did not see in the past. And so, immunotherapy has been a tremendous advance forward. Now, of course, the other side of that is four out of five patients are still dying so we clearly need to do better. But the fact that one out of five is surviving is amazing. 

Head and Neck Cancer Research | How Innovation Leads to Advances in Care

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Head and Neck Cancer Research | How Innovation Leads to Advances in Care from Patient Empowerment Network on Vimeo.

How can innovation lead to head and neck cancer research advances? Expert Dr. Ezra Cohen discusses how improvements in technology have led to changes in diagnostics, therapeutics, surgery, and radiation. 

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

Download Resource Guide

See More from Evolve Head & Neck Cancer

Related Resources:

Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team

Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team

 Head and Neck Cancer | Key Factors Affecting Treatment Decisions

Head and Neck Cancer | Key Factors Affecting Treatment Decisions

 How Is Head & Neck Cancer Treatment Approached?

How Is Head & Neck Cancer Treatment Approached?

Transcript:

Katherine:

How are innovations in technologies accelerating head and neck cancer research? 

Dr. Cohen:

I think, in many ways. First there’s – we mentioned the multidisciplinary approach of head and neck cancer and each of the disciplines, the major therapeutic disciplines, being medical oncology, radiation and surgery, really have had dramatic technological advances in the last, certainly in the last decade, maybe a little bit longer.  

For the surgery, it’s been the ability to do minimally invasive surgery, usually through a robot called transoral resection. And this is, as the name implies, literally a robot that’s controlled at the side of the operating room or even sometimes controlled remotely. But the advantage is that the instrument is much smaller than the human hand, and it can articulate in every degree possible. Which, obviously, the human hand has restrictions.

So, in other words, that robot can get into places and get into areas that would be very difficult without a much bigger surgery if done without the robot. And now, that surgery called TORS, transoral robotic surgery, has become pretty well, pretty standard for cancers of the base of the tongue and the oral pharynx.  

That is really the back of the throat. Whereas in the past, in order to access those areas, the patient’s jaw would have to have been split, and the area had been opened. Now, that’s not necessary at all, and the surgery has turned into a much, much faster recovery with equivalent oncologic outcomes. And, of course, there’s more advancements going on in that regard.

For radiation, I think the most relevant technological advances have been the ability to focus radiation through different means on the tumor and spare normal tissue. Whether that’s with something called IMRT, which is essentially a much more sophisticated way to deliver radiation that is controlled by a computer that allows the radiation fields to be contoured around structures in a 3D fashion, much more than we were able to do prior to that.  

And, of course, the other way is to use a different type of energy. Whereas conventional radiation, when we talk about radiation, we’re talking about photons. Protons, now, are becoming more widely available. And that particle has a different way to deliver energy and can actually spare normal tissue but still deliver the energy desired to the tumor. So, tremendous advances in radiation.

And then, of course, for medical oncologists, we’ve had advancements in both diagnostics and in therapeutics. 10 years ago, sequencing a cancer, deciphering the genes that drive it, the mutations that drive it, was uncommon. And, in fact, even I dare say, frowned upon by the community.  

But now, there isn’t a patient that I see who has recurrent or metastatic disease that I don’t sequence. I sequence them all. 

Katherine:

Wow.  

Dr. Cohen:

Because the technology is readily available and quite honestly, it gives us more information that we might be able to apply to the treatment of that patient. So, that’s been a very large, a very big advancement. And then, of course, therapeutically we’ve had different agents that we’ve been able to look at. I mentioned immunotherapy. There are many new drugs that are being tested and hopefully very soon even approved for patients with head and neck cancer.  

Head and Neck Cancer Clinical Trials | What Are the Benefits?

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Head and Neck Cancer Clinical Trials | What Are the Benefits? from Patient Empowerment Network on Vimeo.

What benefits can head and neck cancer clinical trials bring to patients? Expert Dr. Ezra Cohen discusses clinical trial participation rates, explains how trials move research forward, and details questions to ask your doctor when considering joining a clinical trial. 

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

Download Resource Guide

See More from Evolve Head & Neck Cancer

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Head and Neck Cancer Treatment and Research Updates

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 How Is Head & Neck Cancer Treatment Approached?

How Is Head & Neck Cancer Treatment Approached?

Transcript:

 Katherine:

A key part of research moving forward is the clinical trial process. Can you talk about the benefits of patient participation?  

Dr. Cohen:

Of course. And I’m certainly a firm believer. It’s been part of what I’ve been doing for, again, over 20 years. And, so, certainly I think clinical trials are a critical component of our ability to produce better outcomes and move forward. The sobering reality is that only 3  percent of adult patients actually participate in clinical trials.  

Katherine:

Wow. 

Dr. Cohen:

And if we’re really going to move the field forward and be where we want to be with cancer, and that is to either cure as many people as we can or turn cancer into a chronic disease, better yet in many individuals, detect it early and prevent it. We need much greater participation in clinical trials. So, that being said, nothing is going to happen, we are not going to make strides forward in therapeutics and diagnostics, whatever in prevention, without clinical trials. Even the basic standards of care that we engage in now, and I mentioned that drug pembrolizumab (Keytruda), that was approved on the basis of a large randomized clinical trial.  

Now, having said that, I think patients – part of the responsibility is on patients to ask their provider, “Well, what about clinical trials?” There is almost always a clinical trial that is available given a specific setting. The challenge is that it may not be available where the patient is seeking care. And there is a large disconnect in that regard. Now, there are different organizations that are trying to improve that, improve the diversity of participation in clinical trials and the equality of availability of clinical trials to the entire population, not just people going to large academic medical centers. But, that’s the first thing I would tell patients, is part of the list of questions that you have for your provider, especially at the beginning and throughout the entire process, is there a clinical trial that would be applicable to my situation?  

And if the answer is, “Well, no.” The follow-up should be, “Well, what about in the area?” Or, “What about something that may not necessarily be available in this practice but what about somewhere else in town or somewhere I could access?” Of course, that may not be possible for all patients. But if it is, I would encourage all people to ask that question. And then there is a large responsibility, I think, on providers to make clinical trials available if we’re going to improve that number from 3 percent. 

There are a lot of exciting agents being studied now in head and neck cancer – immunotherapy drugs, antibody drug conjugates, novel mechanisms, cell therapies, vaccines. So, there’s certainly no paucity of interest in developing drugs in head and neck cancer and technologies as well. So, there are clinical trials available, and I think we, as a community, need to make a – need to do better in enrolling patients on those studies. 

Head and Neck Cancer Treatment and Research Updates

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Head and Neck Cancer Treatment and Research Updates from Patient Empowerment Network on Vimeo.

What is the latest head and neck cancer news? Expert Dr. Ezra Cohen discusses research updates in immunotherapy and shares credible resources for staying informed about head and neck cancer treatment and research.

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

Download Resource Guide

See More from Evolve Head & Neck Cancer

 

Related Resources:

Head and Neck Cancer Clinical Trials | What Are the Benefits

Head and Neck Cancer Clinical Trials | What Are the Benefits?

 Head and Neck Cancer Research | How Innovation Leads to Advances in Care

Head and Neck Cancer Research | How Innovation Leads to Advances in Care

 How Is Head & Neck Cancer Treatment Approached?

How Is Head & Neck Cancer Treatment Approached?

Transcript:

Katherine:

Well, thank you so much for taking time out of your schedule to join us today. As you know, head and neck cancer research has been progressing quickly. What recent developments do you think patients should know about? 

Dr. Cohen:

Well, there are a lot, really. And I think probably the first and foremost is the impact that immunotherapy is having on treatment for head and neck cancer. And that is mostly in the form of a drug called pembrolizumab (Keytruda). It’s an anti-PD1 antibody that really – what it does is stimulate a specific cell type in the immune system called T cells. And now, it’s approved for the treatment of patients with recurrent or metastatic disease.

However, for patients, I think probably the most important development over the last little while is the realization of the important of the multidisciplinary team in the management of patients with head and neck cancer.  

It used to be that the care was driven by a single oncologist or a single individual, but over the last, I would say mostly over the last decade, maybe a little but more than that. There’s becoming this realization more and more and the implementation, of course, of these multidisciplinary approaches involving a surgeon, a radiation oncologist, a medical oncologist, but much more than that. A speech and language pathologist, a swallowing expert, nutritionist, psychologist, pharmacists, dentists, of course oral surgeons.  

With the, now, the prospective data to validate that in a multidisciplinary setting, with a multidisciplinary tumor board where each patient is discussed with all of these individuals providing input. The outcomes are substantially better. And so, for patients, I think that that’s had the greatest impact, because we’re talking about patients who can be cured for the most part.  

And those cure rates increasing just simply by getting the right people involved in their care. 

Katherine:

Yeah. Very important, then. As I mentioned a few minutes ago, patients should be aware of all of their options. How can patients stay informed as the treatment landscape expands and changes?  

Dr. Cohen:

Yeah. It’s challenging because not only are patients and their caregivers grappling with this diagnosis, and it’s a brand-new world for almost all of them. Many patients have never had to deal with cancer ever before. Pile onto that the functional and social aspects of having head and neck cancer. Remember this is a cancer that affects so much of what makes us human – our ability to communicate, to speak, to eat, to swallow. And so, now, patients are flung into this situation, and it is challenging to find good information.  

Having said that, often the oncologists that are involved in the person’s care should be a great source of information, especially if those oncologists have experience treating head and neck cancer. And incidentally, just as an aside, there is also data and mounting data that the more experienced a center is in treating head and neck cancer, the better the outcomes. And so, that’s something that patients may want to think about as they choose their providers.

But then there are also public sources. There are support groups for head and neck cancer. The Head and Neck Cancer Alliance is one of those. SPOHNC is another and they’re excellent sources of information for patients. American Cancer Society is always a very good source of information, mostly for cancer basics but they do have the pages that are dedicated to head and neck cancer.  

And then the American Society of Clinical Oncology, or ASCO, actually does have a patient-facing part of their organization, and that can help not only with information about the disease, but it can also help find providers that have a specific interest in this type of cancer. 

Cancer Patient Profile: Linda Ryan

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As a survivor of thyroid cancer, adenocarcinoma in situ of the cervix, and seven cancer recurrences, our PEN Gynecological Cancer Empowerment Lead Linda Ryan has learned a lot about cancer treatment and about life. She’s discovered the value of self-education, clinical trials, and friendships among many other things. 

Linda’s first cancer experience occurred in 2002 with her thyroid cancer diagnosis. She received successful treatment and then two years later, as a result of a routine pap exam, she was diagnosed with stage 0 adenocarcinoma in situ of the cervix. Linda had a hysterectomy and no other treatment. And then seven years later, she found a lump on her neck that her doctors diagnosed as thyroid cancer recurrence. She had a radical neck dissection scheduled but found some lymph nodes in her groin area ahead of her surgery date. The sense of urgency for treatment increased considerably after the physician assistant knew Linda didn’t have thyroid cancer.

Linda learned that the standard of care option had a 15 percent response rate for her diagnosis, and the clinical trial was seeing  a 31 percent response rate. She chose the clinical trial since it increased her chances by 16 percent. She traveled from Florida to Houston for treatment, and she did that for eight rounds every three weeks and then had no evidence of disease.

Clinical trial participation wasn’t something that Linda would have known to ask about initially, but she’s participated in a few trials. Patients can find all clinical trials on clinicaltrials.gov. “It’s important for patients to ask their doctors about trials and to do research on trials, knowing that they may not be eligible for certain ones if they don’t have certain cancer mutations or other treatment factors. Trials are available to patients in community settings and not just teaching institutions. I feel like I’m using them and getting the benefit of kind of cutting-edge medicine that isn’t available. So I think it’s important for people to seek out trials and educate themselves if there is something available for them.”

One key piece of advice from Linda is don’t give the cancer any more power than it deserves. “So I think it’s important to always remember you’re in charge, and you’re more powerful than the cancer. The words you use to talk about your cancer are very important. So knowing that when I exercise, I feel stronger than the cancer, even if I’m not lifting weights, but I’m moving.” She also recommends using mental exercises or spiritual practice as a way to keep your personal power during your cancer journey and to keep excessive anxiety at bay. 

At the beginning of her cancer journey, Linda asked her doctor if she could keep running. Her doctor advised her to keep moving as much as she could. A group of Linda’s friends decided to host a 5K in her honor. “The goal was just to get our community moving and to hear that message of the importance of exercise. And it gave me a lot of mental strength.”

Reflecting back on the initial 5K event, Linda and her friends set out with specific goals for the event. They wanted the community to hear their message and wanted 300 people to participate in the first race. They were simply overwhelmed with joy when 900 people registered. They only needed 300 people to register to cover the expenses. The large event turnout meant that they had plenty of money left to donate. 

And we had a small amount of money at that time, but we thought, “Well, we can do something good with this money.” And so we created a 501(c)(3) charity, and it became an annual event and an event for our small town in Florida to land, and Central Florida really embraced it. Fast forward to 2020, right before the pandemic we had 6,000 participants. It was just us five women running it. We all had different talents and decided it was time for someone else to take it over.”

Up until the time that the new organization took over in 2023, Linda’s efforts with her friends gave a little over $2 million. “So many good things came out of it, we’ve touched so many lives of people living with a cancer diagnosis and going through that process. But in addition to what the beneficiary money went to, the event united our community.”

While Linda was enduring her cancer journey, her whole town was looped in on what was happening with her. “When I would have a recurrence, I’d be in the grocery store in tears, because someone would know it was just like everyone knew. And so lightning in a bottle was such a great way to describe it. And then the other thing is because there aren’t a lot of recurrent cervical cancer survivors, especially six, seven-time survivors, I’ve been able to, hopefully, be a voice for other women.”

Linda has formed an educated opinion about cancer information. “Having more information can help all of us patients make better decisions and more informed decisions and talk to the doctors about things that they weren’t necessarily thinking would be specific to you. But getting more information can be a double-edged sword. Sometimes the more information we have, we can fall down rabbit holes and our cancer might not be this exact mutation, and we might read something on the Internet that isn’t necessarily relevant for our own situation. Make sure to talk with your doctor about information that you find.”

As for patients navigating their cancer journeys, Linda feels it’s important for patients to be empowered and to handle their cancer journey how they want to go through it. “Some patients may want someone else directing everything, but that’s their choice. Some people only tell their spouse. I think caregivers need to respect what the patient wants. That doesn’t mean the patient doesn’t need a reminder from time to time that they need to get up and put a smile on once in a while. I wouldn’t want to be the caregiver. It’s so hard for them, since they can fix the cancer.”

Last November, Linda had a scan that showed no evidence of disease, but she remained on pembrolizumab (Keytruda) as a precaution. “I receive it every three weeks through my port, but it’s super easy. I don’t have side effects. It’s 30 minutes. It’s not life-changing at all. So I hope to be on it for a really long long time, and I get scans every three months. I feel great.”

Though she never could have imagined enduring two types of cancer and seven cancer recurrences, Linda remains grateful for the good things that have come from her journey. “My prayer the last two years was, ‘Please let me live and use me as however I need to be used to help other people.’”

Thyroid Cancer Patient Profile: Beena Patel

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

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

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

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

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

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

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

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

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

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

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

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! 

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

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

11 Tips for Navigating Thyroid Cancer

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

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

Patient Profile: Vanessa Steil

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

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

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

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

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

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

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

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

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

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

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

Read more patient stories here.

Thyroid Awareness: January and Beyond

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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.

a close up of a christmas tree

Photo by Torten Dettlaff

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

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:
  • 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.

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

Patient Profile: Bob Lawson

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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?”

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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.

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

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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

Get our printable guide for your next doctor’s appointment to help you ask the right questions.

Doctor Discussion Guide Woman

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.