What Questions Should You Ask About a Proposed Thyroid Cancer Treatment Plan?
What Questions Should You Ask About a Proposed Thyroid Cancer Treatment Plan? from Patient Empowerment Network on Vimeo.
What questions should you ask about a proposed thyroid cancer treatment plan? Dr. Wirth provides guidance on self-advocacy, seeking a second opinion, and discussing essential molecular testing for identifying targetable gene alterations.
Dr. Lori Wirth is the Medical Director of the Center for Head and Neck Cancers at Massachusetts General Hospital. Learn more about Dr. Wirth.
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Transcript:
Katherine:
What questions should patients ask about their proposed treatment plan?
Dr. Wirth:
So, Katherine your questions are so spot on, and these are the kinds of questions that we get asked in clinic all the time. And I could say one thing that I think, I don’t know if medical students still are in this, but I learned this in medical school. If a patient says to you, “What would you say to me if I were your mother?”
You’re not supposed to answer that question because of course you’re going to have your biases. But I realize people ask me that question all the time. And so, it’s a good question, so I should answer it because it’s a good question. But I think that I would simply encourage people to not be shy. Their doctors care deeply about them. Their doctors are pressed for time, but their doctors are always going to be happy to stop and answer every single question that the patient has. And the most basic questions are the best ones, but sometimes they’re also the hardest question to ask. But coming with a list of the important questions is very helpful. Bringing along a family member or friend and having them have their list of questions is also very helpful.
But writing down especially the hard questions can help you ask the question because it can be hard to say, “How long might this drug help me live?” Asking about how long I might live can be really hard to say, but if you’ve got it written down there, it’s a little bit easier to say. Or if it’s hard for you to get those words out, hand your doctor over your notebook, and your doctor can look at the questions and help answer the questions.
So, I just would encourage people to think in advance about what the questions are that they want to make sure that they cover and jot them down. And don’t be shy. Don’t be shy about saying, “Do you think it would be worthwhile for me to get a second opinion? And if so, who do you recommend?” And most doctors are perfectly content with somebody asking if they think a second opinion would be a good idea.
And I’ve always said if I were diagnosed with cancer, I would want to have a second opinion just to be sure that what my favorite doctor was saying to me really sounded right. So, don’t be shy about asking for second opinions. With thyroid cancer I also think now it’s so important that we’re doing the molecular diagnostics of the tumors for patients to identify those patients that have targetable gene alterations. And it is still a relatively new thing in oncology to do molecular diagnostics for thyroid cancer as well as other solid tumors. And so, it is something that is not always recommended or offered to patients. But that’s something that patients with thyroid cancer should absolutely ask their doctors about.
What Are the Benefits of Thyroid Cancer Clinical Trial Participation?
What Are the Benefits of Thyroid Cancer Clinical Trial Participation? from Patient Empowerment Network on Vimeo.
What are the benefits of thyroid cancer clinical trial participation? Dr. Lori Wirth discusses how clinical trials provide access to promising new treatments, offering patients additional options, and the potential for significant advancements in managing their disease.
Dr. Lori Wirth is the Medical Director of the Center for Head and Neck Cancers at Massachusetts General Hospital. Learn more about Dr. Wirth.
See More from Evolve Thyroid Cancer
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What Questions Should You Ask About a Proposed Thyroid Cancer Treatment Plan? |
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Transcript:
Katherine:
Dr. Wirth, what would you say to patients who are hesitant to participate in a clinical trial?
Dr. Wirth:
Oh, boy. So, that’s such an important question.
Katherine:
Yeah.
Dr. Wirth:
And I think that the natural reluctance to put oneself into an uncertain setting like a clinical trial is completely understandable.
But a couple of things that I would say is first of all there is a lot of really deep work that goes into identifying new agents that have promise in the preclinical setting from laboratories either within the pharmaceutical industry or within academics. The amount of smarts that goes into development new drugs as well as early testing to ensure safety and that there’s a real signal of activity, that amount of work that’s done before a clinical trial is launched is really quite significant. So, when we’re bringing a new drug into clinical trials, we already know that there’s a very good likelihood that that drug is going to have good activity.
Katherine:
Okay.
Dr. Wirth:
The other reason for patients to think about participating in clinical trials is when patients have metastatic disease in the solid tumor setting whether it’s colorectal cancer or breast cancer, unfortunately most of our treatments don’t work so well that there’s a chance of cure. However, if we can’t cure a cancer, the next best thing is to knock it back and hold it at bay for as long as possible so that people can feel well but also live as long as possible.
However, if we don’t have a drug that can work so well that can cure cancer completely many cancers ultimately are going to escape the control, and we’re going to need new therapies for those patients. When patients participate in a clinical trial that’s just giving them a whole other treatment option. And so, to have more options available gives more chances that there’s going to be a real homerun or a real success in terms of treatment.
So, I would much rather have my patient have three options of treatment rather than two options of treatment. And we can always turn to the drugs that we have that are already FDA approved as long as somebody’s well enough to receive cancer treatment. If there’s a promising clinical trial of a new agent that’s only available in a clinical trial, and if we use that earlier in the course of the disease, that gives us more options for down the road.
Thyroid Cancer Research and Treatment Highlights
Thyroid Cancer Research and Treatment Highlights from Patient Empowerment Network on Vimeo.
What are the latest thyroid cancer research and treatment highlights? Dr. Lori Wirth discusses recent advancements, including successful clinical trials with newer therapies, and ongoing research into the latest targeted treatments for advanced thyroid cancer.
Dr. Lori Wirth is the Medical Director of the Center for Head and Neck Cancers at Massachusetts General Hospital. Learn more about Dr. Wirth.
See More from Evolve Thyroid Cancer
Related Resources:
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What Questions Should You Ask About a Proposed Thyroid Cancer Treatment Plan? |
What Are the Benefits of Thyroid Cancer Clinical Trial Participation? |
Transcript:
Katherine:
Dr. Wirth, what are your research areas of focus?
Dr. Wirth:
Here at Mass General in Boston we focus on clinical trials looking at new therapies for patients with advanced thyroid cancer including iodine refractory thyroid cancer, anaplastic thyroid cancer, medullary thyroid cancer.
We also have a big program in studying in the laboratory what makes thyroid cancers tick in order to try to come up with new angles for new drug therapies based on preclinical work that’s being done.
Katherine:
Okay. In terms of thyroid cancer are there research developments that are showing a lot of promise that you’re excited about?
Dr. Wirth:
And so, Katherine, I’m so glad you’re asking that question because we’ve actually had some really big successes in clinical trials for patients with thyroid cancer recently. One of the big successes was a study called COSMIC-311 which looked at the drug cabozantinib (Cabometyx) in patients with iodine refractory thyroid cancer who had progressed on the first-line therapy.
Most commonly that’s lenvatinib (Lenvima), but you can have other first-line therapies as well. And that study was a randomized Phase III study that was done in an international setting and showed that cabozantinib had very good activity in the second line following progression on first-line therapy.
So, we now have treatments lined up for patients for the first line, but then also we have good treatment for patients who’ve progressed on the first-line therapy and need further treatment. So, that was one major success. Another major success recently was the LIBRETTO-531 trial. So, that was a randomized Phase III trial also done internationally in patients with progressive RET-mutated medullary thyroid cancer.
And that study randomized patients to receive either the RET specific therapy selpercatinib compared to a multikinase inhibitor either cabozantinib or vandetanib (Caprelsa). And the LIBRETTO-531 study showed that selpercatinib is much better than the older standard of care therapies in terms of response rates, durability of response. And we’re even seeing that it looks like there’s a signal where the overall survival is longer with serpercatinib compared to the older standard of care therapies.
So, whenever we have a strongly positive Phase II trial in oncology it’s a big win. And those are two examples of big wins recently. Another study that I would highlight has come out of Germany looking at the combination of pembrolizumab which is an immunotherapy drug in combination with lenvatinib the multikinase inhibitor in patients with anaplastic thyroid cancer.
And it was a relatively small study. It was a Phase II trial, but this Phase II trial in Germany showed very good activity with this combination of pembrolizumab (Keytruda) and lenvatinib in people with anaplastic thyroid cancer. So, that is very promising for the future for those patients as well.
Katherine:
Dr. Wirth, is there anything you’d like to add about the evolution of thyroid cancer care? Are you excited about anything that we haven’t already talked about?
Dr. Wirth:
I am so excited about our recent evolution in thyroid cancer care where we’ve gone from only having old fashioned IV chemotherapy which really doesn’t work very well in thyroid cancer to having really effective multikinase inhibitors for thyroid cancer patients. And now we even have gene specific targeted therapies that work even better in certain specific situations. And so, this evolution over the last 10 years has really changed the landscape of therapies available to our patients. And we now have drugs for almost all of our patients with thyroid cancer.
They have a good likelihood of working really well for a really long period of time. And that’s changed in my lifetime, taking care of people with thyroid cancer. And the progress that we’ve seen in the last 10 years is really only accelerating before our very eyes. One of the targets that we didn’t talk about earlier is the BRAF V600E mutation.
And I just want to talk about that very briefly because that’s actually the most common potentially targetable gene alteration in thyroid cancer. But thyroid cancer patients share that gene mutation with other cancers as well including melanoma, a subset of people with lung cancer, a subset of people with colorectal cancer as well. There are a lot of new drugs that are being studied in clinical trials targeting that BRAF V600E mutation and other cousins within that pathway of gene alterations that drive cancers.
And so there is a very active industry that is working on developing the next best therapy for all of these targets that we’ve talked about, NTRK, RET, BRAF mutations, immunotherapy approaches to people with all different types of solid tumors. And those kinds of clinical trials are being done now in advanced thyroid cancer.
Whereas 15 years ago it was really difficult to get a trial up and running for people with thyroid cancer because it was seen as such a rare cancer, kind of a niche cancer where there’s not a lot of money to be made in developing drugs compared to the numbers of women with breast cancer or numbers of people with lung cancer.
It’s a different story now. There’s a lot of active drug development specifically for people with thyroid cancer.
Understanding Targeted Thyroid Cancer Treatment Approaches
Understanding Targeted Thyroid Cancer Treatment Approaches from Patient Empowerment Network on Vimeo.
What are targeted thyroid cancer treatment approaches? Dr. Wirth explains standard options like multikinase inhibitors, newer gene-specific treatments, patient suitability for targeted therapies, and common side effects.
Dr. Lori Wirth is the Medical Director of the Center for Head and Neck Cancers at Massachusetts General Hospital. Learn more about Dr. Wirth.
See More from Evolve Thyroid Cancer
Related Resources:
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What Are the Benefits of Thyroid Cancer Clinical Trial Participation? |
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Transcript:
Katherine:
Thank you. Dr. Wirth, what are the targeted treatment approaches for treating thyroid cancer?
Dr. Wirth:
Yes, so we do have new options for treating iodine-refractory thyroid cancer, also anaplastic thyroid cancer, and then the medullary thyroid cancer.
So, the first group of drugs that were studied starting a decade ago and have become standard of care options for these patients are the multikinase inhibitors, which are targeted therapies. But the drugs target multiple kinases not just one kinase, so we call them multikinase inhibitors. Lenvatinib (Lenvima) is the multikinase inhibitor that’s used most often in iodine refractory thyroid cancer.
But we have other multikinase inhibitors as well. Cabozantinib (Cabometyx) is a drug that’s available now for second-line therapy in iodine refractory thyroid cancer. That’s a multikinase inhibitor. And then for medullary thyroid cancer multikinase inhibitors were studied about 10 years ago as well.
And cabozantinib (Cabometyx) and vandetanib (Caprelsa) are both multikinase inhibitors that have good activity and were FDA-approved for the treatments of medullary thyroid cancer. But one of the things that’s been so exciting in the last five to eight years is that we now know that a large portion of all of these various thyroid cancers are driven by specific gene mutations.
And many of those gene mutations lead to expression of abnormal proteins that make the cancer a cancer cell. And in many circumstances, those abnormal proteins driving the cancer cell growth are now targetable with gene-specific therapies. So, there’s been a lot of progress made recently in that area of the work that we do, which has really led to some great successes.
So, the first example of a really great success was in targeting the TRK protein, TRK. And that is aberrantly expressed in a subset of the iodine refractory differentiated thyroid cancers by virtue of a gene alteration called a fusion. So, you can see NTRK1 or NTRK 3 fusions driving a subset of iodine refractory differentiated thyroid cancer.
And there are now a couple of drugs that target TRK very potently and specifically including larotrectinib (Vitrakvi) that was studied in multiple different types of tumors all driven by NTRK fusions, including a fairly large cohort of patients with iodine refractory differentiated thyroid cancer. And in the thyroid cancer patients, we saw really high responses with larotrectinib, which is an oral drug taken by mouth at home every day.
And not only did we see very high response rates, but we also are seeing very durable responses where patients can remain on larotrectinib month after month after month or even for years with a significant regression of their thyroid cancer. Sometimes people even will have a complete response on larotrectinib. And they can tolerate larotrectinib well for the most part for a very long period of time. So, that’s a targeted therapy success story for patients with NTRK fusion-positive thyroid cancer. Another example is targeting RET fusions and RET mutations. So, we see RET fusions in iodine refractory differentiated thyroid cancer in a portion of them.
We also occasionally see RET fusions driving anaplastic thyroid cancer. And then more than half of patients with medullary thyroid cancers will have RET mutations. And so, the gene mutation is slightly different than a gene fusion, but the end result is very similar so that RET is overactive in these cancers and now is druggable with RET-specific inhibitors. The one that’s been studied the most in thyroid cancer is selpercatinib (Retevmo). And similar to larotrectinib and NTRK driven thyroid cancers serlpercatinib and RET-driven thyroid cancers has great activity, very high response rates, very durable responses. And again, it’s taken at home every day by mouth, and it’s really very well-tolerated overall.
Katherine:
Well which patients are a good fit for a targeted treatment approach?
Dr. Wirth:
So, the patients that are a good fit are patients first of all who need a systemic therapy.
So, for example, if a patient has had a thyroid nodule that’s not all that big, a biopsy shows it’s thyroid cancer, and the patient has a complete resection of that disease and may or may not have gotten treated with radioactive iodine.
But if they’re disease free they don’t need any further therapy. And a lot of patients are in that category which is the best-case scenario. But when patients have persistent disease that eventually is going to grow over time, then we do genotyping of the tumor or molecular diagnostics. It’s the same thing, different phrases. But then we’ll extract the DNA from the cancer cells to see what types of targetable gene alterations might be present driving that thyroid cancer. In patients who are found to have an NTRK fusion, a drug like larotrectinib is an option.
If we see a RET fusion, then a RET specific therapy might be an option. So, you need to have some disease that needs a systemic therapy, and then the target needs to be present as well.
Katherine:
What are the common side effects for a targeted approach?
Dr. Wirth:
So, the side effects are a little bit different flavor for the different drugs. So, larotrectinib, for example, is a potent and specific TRK inhibitor. And TRK is expressed in the development of the nervous system as well as the maintenance in full grown people of the nervous system. So, you can have on target TRK related side effects involving the nervous system from when patients are on larotrectinib.
So, we can, for example, see a little bit of dizziness or gait unsteadiness which is a direct result of inhibiting TRK. Or sometimes patients will develop kind of an unusual pain syndrome where when they’re getting close to the time that they’re supposed to take their next does of Larotrectinib when the amount of drug in the body is beginning to wane, then some patients will develop pain like joint pain for example, pain from arthritis but it seems to be exacerbated.
And then when they take their next dose of larotrectinib the pain goes away as well. So, there’s some impact on pain control that we can see as a side effect of larotrectinib. Fatigue I think is the other probably most common side effect which probably also is an on-target side effect from larotrectinib.
Katherine:
Yeah.
Dr. Wirth:
There can be some inflammation in the liver which we can see in blood tests, so we have to monitor blood tests for that kind of inflammation, which is uncommon but can be seen and sometimes will require some dose reductions in order to not have to worry about liver injury in a particular patient.
What Are Initial Thyroid Cancer Treatment Approaches?
What Are Initial Thyroid Cancer Treatment Approaches? from Patient Empowerment Network on Vimeo.
What are initial thyroid cancer treatment approaches? Dr. Lori Wirth explains why surgery is the primary treatment, when radioactive iodine is appropriate, and the need for lifelong thyroid hormone replacement after thyroidectomy.
Dr. Lori Wirth is the Medical Director of the Center for Head and Neck Cancers at Massachusetts General Hospital. Learn more about Dr. Wirth.
See More from Evolve Thyroid Cancer
Related Resources:
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What Are the Benefits of Thyroid Cancer Clinical Trial Participation? |
What Questions Should You Ask About a Proposed Thyroid Cancer Treatment Plan? |
Transcript:
Katherine:
So, what are the main treatment classes for each type?
Dr. Wirth:
So, surgery is always considered a mainstay for any type of thyroid cancer whenever possible. Often patients will present with a lump in their neck that is noticed either by themselves or on physical examination and is noticeable before the cancer has spread to other parts of the body. And that’s definitely the best-case scenario. If those cancers can be completely resected by surgery with either a hemithyroidectomy or a total thyroidectomy, then there’s a reasonably good chance of cure in many cases.
So, surgery is first and foremost the treatment that we think about. Then for the subtypes of thyroid cancer that arise from the regular thyroid cells namely papillary thyroid cancer, follicular thyroid cancer, oncocytic, and high grade.
Those patients will often also be treated after surgery with radioactive iodine.
The normal thyroid tissue takes up iodine from the blood in order to make thyroid hormone. And we can make iodine radioactive, give that to a patient, and it can sometimes be taken up by the thyroid cancer cells just like normal thyroid cells would take up normal iodine from the blood. And if those cells take up radioactive iodine, then they’re killed off by the radioactive iodine. We know, however, that anaplastic thyroid cancers don’t take up radioactive iodine.
So, we don’t use radioactive iodine ever in anaplastic thyroid cancers. And then also in medullary thyroid cancers, because they’re really a completely different cell altogether, those cancers are not treated with radioactive iodine as well.
Katherine:
Okay.
Dr. Wirth:
So, most patients will need to have surgery. Many patients will also be treated with radioactive iodine. And for many, many patients with thyroid cancer, that’s all the treatment that they need, and they’re done.
There are, however, patients who will have more aggressive thyroid cancer or thyroid cancer that’s already metastasized to other parts of the body. And if those cancers don’t respond to radioactive iodine, then we consider them radioactive iodine resistant or refractory. And then we have other treatments in the arsenal for those cases.
Katherine:
This may seem like a very simple question to you. But once the thyroid has been removed, doesn’t the patient then have to take some sort of supplement for the rest of their lives?
Dr. Wirth:
Yes, exactly. So, the job of the thyroid gland mostly is to make thyroid hormone. And thyroid hormone is one of the things that governs the body’s metabolism. So, if you take away the thyroid gland, then without the thyroid hormone replacement patients will become hypothyroid. And eventually it can be so severe that people can be quite, quite, quite ill. So, anyone who’s had a complete thyroidectomy will need treatment with thyroid hormone replacement for the rest of their lives.
Bridging Gaps in Care and Empowering Patients Facing Thyroid Cancer
Patient Empowerment Network (PEN) is dedicated to helping educate and empower patients and care partners in the thyroid cancer community. Thyroid cancer research and treatment options are ever-changing, and it’s vital for patients and families to educate themselves about clinical trials, treatment advancements, barriers to and disparities in care. With this goal in mind, PEN introduced the [ACT]IVATED Thyroid Cancer program, which aims to inform, empower, and engage patients to stay updated about the latest in thyroid cancer care.
Thyroid cancer awareness needs more visibility for multiple reasons. Thyroid cancer incidence is higher in women with 70 to 75 percent of cases occurring in women. And many patients may not be aware that thyroid cancer is the most common cancer in patients who are age 15 through age 33.
PEN is pleased to add information about thyroid cancer to educate more patients and their families. Cancer survivor Lisa Hatfield interviewed expert Dr. Megan Haymart from the University of Michigan as part of the [ACT]IVATED Thyroid Cancer program.
Thyroid Cancer Disparities and Challenges
Thyroid cancer patients may be impacted by a variety of disparities in incidence, diagnosis, and care. Raising awareness about these disparities can help patients and patient advocates work toward closing disparity gaps. Dr. Megan Haymart discussed the thyroid cancer gender disparity that impacts more women than men. “So about 70 to 75 percent of all thyroid cancer cases occur in women. And this is very similar to other endocrine diseases, especially other thyroid conditions. So hypothyroidism, hyperthyroidism, those are also more common in women. And so we think that the reason for this is probably multifactorial. So one, there’s probably something about thyroid conditions in a biologic level that differs between men and women.”
Thyroid cancer patients may be affected by socioeconomic barriers to care. Dr. Megan Haymart discussed potential barriers to optimal care. “And there’s strong data for thyroid cancer and other cancers as well, that sometimes what’s happening is individuals who are lower socioeconomic status or a minority race or ethnicity are sometimes clustering at low volume hospitals. And so they may not be getting the best care because of where they’re going.”
Socioeconomic impacts on thyroid cancer extend to other disparities too. Dr. Megan Haymart shared about a difference that often goes along with socioeconomic status. “And then related to socioeconomic status, we also know that there can be differences based on education level as well.”
Thyroid cancer may feel more overwhelming for young patients. Dr. Megan Haymart shared the different types of stress that young thyroid cancer patients may feel. “…it’s very stressful especially for younger patients who are at a transition point in their life, related to college, related to starting new jobs, related to starting a family, all their friends are healthy and they get a cancer diagnosis, it can be very stressful and overwhelming. And so if you’re worried, if you’re stressed, that’s normal. Patients shouldn’t feel bad about that. No one should make them feel bad about it.”
Thyroid Cancer Care Solutions and Successes
Thyroid cancer care is changing and becoming more personalized to each patient and their preferences for treatment. Dr. Megan Haymart discussed how she’s encouraged about the future of thyroid cancer treatment. “…one that I’m the most excited about with the guidelines is the guidelines are going to emphasize tailored care more and shared decision-making more. And so I think these are key. And so for a lot of thyroid cancer management, there is not one right or wrong treatment option. It depends a little bit on the patient and what their preferences are.”
For thyroid cancer patients, it’s important to see care providers who diagnose and treat a high number of patients with thyroid cancer. Dr. Megan Haymart shared her advice. “…if you feel that you’re not getting the answers that you want, don’t be afraid to get a second opinion…make sure that you’re seeing high volume physicians who see a lot of patients with thyroid cancer. This is for both the surgeons and the endocrinologists, because we know that outcomes are better when individuals see high volume physicians. “
It’s also important for thyroid cancer patients to be comfortable with the care provider and that the provider is truly listening to them. Dr. Megan Haymart shared her expert advice. “…if patients feel like they’re being dismissed, if they’re anxious, if they’re worried, if they’re stressed, if they feel like their questions aren’t being answered, you can always get a second opinion or see someone else.”
Switching to a different thyroid cancer care provider isn’t necessarily as complicated as some patients might think. Dr. Megan Haymart discussed the importance of patients advocating for themselves. “And so I think it’s very important to advocate for yourself and don’t be afraid to look around. And if the center that’s closest to you isn’t the best center for thyroid cancer, and if there’s a better one that’s 30 minutes away, and you’re capable of getting there, I would encourage you to go.”
Delving deeper into the patient experience, PEN’s Thyroid Cancer Empowerment Lead Carly Flumer was diagnosed at the age of 27. And though she experienced many challenges through her cancer journey and still does as a survivor, Carly has also discovered new passions as a result of her experience. “…there have many silver linings of having cancer. I found my passion in helping other cancer patients through different avenues, I’ve made friends and joined communities of people who “get it,” and I found new strength in who I am as a person.” Learn more and connect with Carly here.
[ACT]IVATED Thyroid Cancer Program Resources
The [ACT]IVATED Thyroid Cancer program series takes a three-part approach to inform, empower, and engage both the overall thyroid cancer community and thyroid cancer patient groups who experience health disparities. The series includes the following resources:
Though there are thyroid cancer disparities, patients and care partners can be proactive in educating themselves to help work toward optimal care. We hope you can take advantage of these valuable resources to aid in your thyroid cancer care for yourself or for your loved one.
Personalized Treatment Approaches in Advanced Thyroid Cancer Management
Personalized Treatment Approaches in Advanced Thyroid Cancer Management from Patient Empowerment Network on Vimeo.
How can advanced thyroid cancer be managed in a personalized way? Expert Dr. Megan Haymart from the University of Michigan discusses personalized treatment approaches and patient advice for optimal care, shared decision-making, and support programs.
[ACT]IVATION TIP
“…if your disease has progressed and you’ve seen an endocrinologist and maybe they don’t routinely give these targeted treatments, make sure you’re referred to an appropriate person who does. Two, I would encourage individuals to make sure that they had tumor sequencing, which means they can look at the tumor and see what is the mutation.”
See More from [ACT]IVATED Thyroid Cancer
Related Resources:
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Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement |
Transcript:
Lisa Hatfield:
Dr. Haymart, can you discuss the role of personalized medicine in managing advanced thyroid cancer, particularly tailoring treatments based on individual patient characteristics?
Dr. Megan Haymart:
So advanced thyroid cancer, when I think of those words I’m specifically talking about patients who have distant metastasis that is progressing. So it’s not just that they have a small site of sort of cancer recurrence that’s sort of stable. This is disease that’s progressing. And the things that have really changed in the past five to 10 years is we have more targeted treatments for these individuals.
There have been more clinical trials that have been completed, and these trials have shown which patients might be appropriate candidates for these treatments. And so my activation tip for this question is if you have advanced thyroid cancer, if you have disease that’s progressing, it’s not treated with standard therapy.
One, make sure you see physicians who are capable of treating this disease. So even though I see 95 percent of all thyroid cancer patients, I’m an endocrinologist and I actually, I’m not the one who gives these targeted treatments to the 5 percent or less who have advanced disease, I would refer them to my medical oncology colleague. And so, if your disease has progressed and you’ve seen an endocrinologist and maybe they don’t routinely give these targeted treatments, make sure you’re referred to an appropriate person who does.
Two, I would encourage individuals to make sure that they had tumor sequencing, which means they can look at the tumor and see what is the mutation. And it’s possible that there’s either an already available drug or a clinical trial that’s targeted towards their specific tumor mutation.
Lisa Hatfield:
Dr. Haymart, how can patients engage in shared decision-making with their healthcare providers to determine the most appropriate treatment approach for their thyroid cancer? And what role do patient navigators or support programs play in improving outcomes for disadvantaged patients navigating the complexities of thyroid cancer treatments?
Dr. Megan Haymart:
So a key thing here for thyroid cancer for 95 percent of patients is you have time on your side. So patients shouldn’t feel rushed to make a decision. So you have your clinic visit, you don’t need to make a decision on your treatment by the end of the visit. You can gather more information, so you can read more using reliable resources that your physician recommends. You can talk to your friends and family members. You can tell your healthcare provider, “You know, I appreciate the information that you gave me. I need more time to process this. I’ll be in touch with you.”
So patients don’t need to feel rushed during that decision-making process. It’s important that they know that for most of the time, for thyroid cancer, it’s preference sensitive decisions, meaning shared decision-making is totally appropriate. There’s no right or wrong answer in many of these scenarios.
And so the patients can really tailor it to them and what their priorities are. There’s been less data on patient navigators in the realm of thyroid cancer, but for other cancers, it’s been shown to be very useful and helpful, and patients have had positive responses to working with patient navigators. But if they aren’t available at your institution, don’t feel bad about bringing in a family member or a friend as an extra set of ears, and as someone that you can talk things over with later.
Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement
Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement from Patient Empowerment Network on Vimeo.
What are some ways that thyroid cancer care is being advanced? Expert Dr. Megan Haymart from the University of Michigan discusses updates in thyroid cancer guidelines, shared decision-making, and actionable patient advice for personalized treatment.
[ACT]IVATION TIP
“…patients should carefully ask the risks and benefits of each of the treatment options, so they can make a pro/con list for themself and really tailor it to what’s a priority to them.”
See More from [ACT]IVATED Thyroid Cancer
Related Resources:
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Personalized Treatment Approaches in Advanced Thyroid Cancer Management |
Transcript:
Lisa Hatfield:
Dr. Haymart, with your involvement in creating thyroid carcinoma guidelines and your research on optimizing cancer care delivery, what recent advancements or changes in thyroid cancer management do you find most promising for improving patient outcomes?
Dr. Megan Haymart:
So I think there are a lot of exciting changes that are coming. But the one that I’m the most excited about with the guidelines is the guidelines are going to emphasize tailored care more and shared decision-making more. And so I think these are key. And so for a lot of thyroid cancer management, there is not one right or wrong treatment option. It depends a little bit on the patient and what their preferences are.
And so for preference sensitive decision-making, there’s going to be a lot more emphasis on including the patient in that decision-making. There’s no right or wrong choice. The patient can think about what concerns them the most and then prioritize things based on that.
So, for example, total thyroidectomy, which means removing all of the thyroid versus lobectomy, which removes half the thyroid. For some patients with low-risk disease, either option is okay. The benefit of doing a lobectomy is there’s less surgical risk, so less risk of voice problems, less risk of low calcium. The disadvantage is that sometimes there’s more follow-up needed, maybe more ultrasounds needed. You don’t know by blood work necessarily that all the cancer’s gone. So you get more information by doing the total thyroidectomy but the total thyroidectomy has more surgical risk.
So, for example, if someone is a singer and they really don’t want their voice to be damaged and they’re not that worried about cancer coming back, lobectomy might be the choice for them. If someone has a lot of anxiety about wanting to know that absolutely everything is gone and the idea that they might need more ultrasounds makes them anxious, maybe total thyroidectomy would be a better option for them.
And so moving forward, I think there’s going to be this emphasis on personalized care, shared decision making and sort of tailoring the care to the patient. And so my activation tip for this question is that patients should carefully ask the risks and benefits of each of the treatment options, so they can make a pro/con list for themself and really tailor it to what’s a priority to them.
Lisa Hatfield:
Okay. Thank you. And one follow-up question I have to that as a cancer patient myself is, whether a patient and their doctor chooses a more or less aggressive treatment with their thyroid cancer, what does the follow-up look like? Are labs and imaging done forever for that patient to make sure there’s not a recurrence or is it just for a certain period of time?
Dr. Megan Haymart:
So this is a great question. About, I don’t know, 10 years ago everybody was getting almost the same treatment, right? So we’ve started to tailor it more and there’s far more people getting lobectomy now than they were 10, 20 years ago. Which is great. The disadvantages, we don’t have as much long-term data on these individuals.
And so it’s a little hard to be conclusive about when is the right time to stop follow-up. The longer we get out, the more data we’ll have on how long we need to follow these patients who had lobectomy, but I think that’s an excellent question. It’s just the fact that there’s been a shift in management and we haven’t had time to catch up to like, how should surveillance or long-term survivorship care change.
Emerging Advancements in Thyroid Cancer Treatment
Emerging Advancements in Thyroid Cancer Treatment from Patient Empowerment Network on Vimeo.
What are the latest thyroid cancer treatment advancements? Expert Dr. Megan Haymart from the University of Michigan shares an overview of treatment updates along with proactive advice about actionable mutations for personalized thyroid cancer treatment.
[ACT]IVATION TIP
“…if you have high-risk advanced disease that’s progressing, I think it’s very important to ask your physician if they’ve done tumor sequencing to see if there’s any actionable mutations, because then you could have more targeted treatment.”
See More from [ACT]IVATED Thyroid Cancer
Related Resources:
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Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement |
Personalized Treatment Approaches in Advanced Thyroid Cancer Management |
Transcript:
Lisa Hatfield:
Dr. Haymart, new advancements in thyroid cancer treatment are emerging. What are some promising therapies on the horizon, and how might they benefit patients?
Dr. Megan Haymart:
So there’s a couple of exciting new treatment options that are available. So one is for high-risk patients who have advanced disease. So this will be a minority of all the patients I see. So it’s probably five to 10 percent that have high-risk advanced disease that’s progressing at most, probably closer to 5 percent. For these individuals, we now have targeted treatments where we can do molecular testing of the tumor, and try to identify the mutations and then give treatments that are targeted towards those mutations.
Not everybody needs this. So many of my patients do great with sort of the standard therapy of surgery, maybe surgery and radioactive iodine if they have papillary or follicular thyroid cancer, they had some lymph nodes involved, but there are some where they have distant metastasis, it’s aggressive, it appears to be growing. And so we do have new treatment options and there’s more and more trials and treatment options becoming available every day.
The other exciting thing that’s available now is there’s new treatment options for lymph node metastasis. So most of the time for lymph node metastasis, you’re going to have another surgery. You always want to see the surgeon first, but sometimes there’s patients who’ve had multiple neck surgeries. The surgeon can’t go back in, or it feels like it’s too high risk to go back in.
We now sometimes use percutaneous ethanol ablation. We’re starting to use radio frequency ablation to treat these isolated lymph node mets when surgery is no longer an option. And so I think that it’s exciting because we have opportunities for patients that we didn’t have in the past. And I think it’s just going to continue to improve in regards to use of these new therapies.
Lisa Hatfield:
Okay, thank you. And do you have any activation tips for that question?
Dr. Megan Haymart:
My activation tip for this question is specific to individuals with high-risk advanced disease that’s progressing, And so if you have high-risk advanced disease that’s progressing, I think it’s very important to ask your physician if they’ve done tumor sequencing to see if there’s any actionable mutations, because then you could have more targeted treatment. Some of these targeted treatments work better, some of them have lower side effects, and so it’s really an era of more tailored care, and this is an important question to ask.
Lisa Hatfield:
Dr. Haymart, how do genetic mutations and molecular markers influence treatment decisions in thyroid cancer and what personalized medicine approaches are being developed?
Dr. Megan Haymart:
So for patients with advanced disease, and it’s progressing, so they have distant metastasis, it’s growing. We can now test for mutations in the tumor to see if there’s any actionable mutations that patients can get targeted treatment. And so that wasn’t available in the past and it is now. And I think it’s really changed the way we take care of our advanced thyroid cancer patients. And my activation tip for this question is, if you have advanced progressing thyroid cancer, ask your doctor if your tumor has had sequencing to see if there’s an actionable mutation because there may be a targeted treatment that you’re a candidate for.
Understanding Thyroid Cancer Treatment Options and Follow-Up Care
Understanding Thyroid Cancer Treatment Options and Follow-Up Care from Patient Empowerment Network on Vimeo.
What’s key for thyroid cancer patients to know about treatment options and follow-up care? Expert Dr. Megan Haymart from the University of Michigan shares her expert knowledge about various treatment paths and proactive patient advice to ensure optimal care.
[ACT]IVATION TIP
“…it would be important to ask how many surgeries have you done in the past year? Typically high volume is considered more than 25, very high volume, some of the physicians, some of the surgeons will do 100 a year. So that’s very important to ask this and ask them what is their complication rate? What are the complications that we might see?”
See More from [ACT]IVATED Thyroid Cancer
Related Resources:
Thyroid Cancer Explained: Types, Staging, and Patient Communication |
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Transcript:
Lisa Hatfield:
Dr. Haymart, can you explain the typical treatment journey for someone newly diagnosed with thyroid cancer and what can patients expect in terms of surgery, radioactive iodine therapy, and follow-up care?
Dr. Megan Haymart:
So patients typically have a biopsy and that’s how they find out they have thyroid cancer. Afterwards, they’re most often referred to surgery and so when they meet with the surgeon, the surgeon might talk about one, not doing the surgery, so just following it. But we don’t do that as often, but sometimes with small cancers and depending on what else is going on in a patient’s life at the time. Two, they might offer lobectomy. So the thyroid is a butterfly-shaped gland in the neck. So they might talk about taking out half the thyroid, not the whole thyroid. Or they’ll talk about a total thyroidectomy, taking out the whole thyroid. They should talk about the risk and benefits of both of those.
After the surgical pathology is back if someone had a total thyroidectomy for papillary or follicular thyroid cancer, radioactive iodine is a treatment option. And again, it’s not recommended for everybody, but for some patients, the things within the pathology look higher risk. There might be lymph nodes involved or signs of invasion. Radioactive iodine is a treatment option.
And then long-term, most patients are followed with neck ultrasounds, with laboratory work. Sometimes if there’s more suspicion, they may have additional, a suspicion of recurrence, they may have additional imaging, but for the most part, it requires lab work and periodic neck ultrasound during follow-up.
And so when patients are sort of along this pathway, I think a couple of things are important to know. One, sometimes it doesn’t move super fast. So it’s pretty typical, like between diagnosis and meeting with the surgeon, it might be a month, and then surgery might be a month or so after that. Radioactive iodine might be a couple months after that. And so that first six months to a year can be very stressful for a patient. So I think that’s important to know.
And then two, I think it’s important to make sure that when you go along this process, you have physicians that you trust and that you can rely upon. So you can still talk with your PCP who you know quite well. You may now have an endocrinologist that you see, and this might be new for you. You may have a surgeon that you see, and this might be new for you. And so you want to ask them the questions that you have.
And my activation tip would be that you want to make sure that you have high volume and experienced specialists. So, for example for surgery, it would be important to ask how many surgeries have you done in the past year? Typically high volume is considered more than 25, very high volume, some of the physicians, some of the surgeons will do 100 a year. So that’s very important to ask this and ask them what is their complication rate? What are the complications that we might see?
And then similarly for the endocrinologist, you want to ask what proportion of your patient population are thyroid cancer patients? How comfortable are you following thyroid cancer patients long-term? And you may get varying answers. And so I think it’s important just to ask these questions so that you feel comfortable that you have experienced providers taking care of you.
Thyroid Cancer Patient Profile: Beena Patel
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.”
A Patient’s Perspective | Participating in a Clinical Trial
A Patient’s Perspective | Participating in a Clinical Trial from Patient Empowerment Network on Vimeo.
Colorectal cancer survivor Cindi Terwoord recounts her clinical trial experience and explains why she believes patients should consider trial participation.
Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.
Cindi Terwoord is a colorectal cancer survivor and patient advocate. Learn more about Cindi, here.
See More from Clinical Trials 101
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Transcript:
Katherine Banwell:
Cindi, you were diagnosed with stage IV colorectal cancer, and decided to participate in a clinic trial. Can you tell us about what it was like when you were diagnosed?
Cindi Terwoord:
Yeah. That was in September of 2019, and I had had some problems; bloody diarrhea one evening, and then the next morning the same thing. So, I called my husband at work, I said, “Things aren’t looking right. I think I’d better go to the emergency room.”
And so, we went there, they took blood work – so I think they knew something was going on – and said, “We’re going to keep you for observation.” So, then I knew it must’ve been something bad. And so, two days later, then I had a colonoscopy, and that’s when they found the tumor, and so that was the beginning of my journey.
Katherine Banwell:
Mm-hmm. Had you had a colonoscopy before, or was that your first one?
Cindi Terwoord:
No, I had screenings, I would get screenings. I had heard a lot of bad things about colonoscopies, and complications and that, so I was always very leery of doing that. Shame on me. I go for my other screenings, but I didn’t like to do that one. I have those down pat now, I’m very good at those.
Katherine Banwell:
Yeah, I’m sure you do. So, Cindi, what helped guide your decision to join a clinical trial?
Cindi Terwoord:
Well, I have a friend – it was very interesting.
He was probably one of the first people we told, because he had all sorts of cancer, and he was, I believe, one of the first patients in the nation to take part in this trial. It’s nivolumab (Opdivo), and he’s been on it for about seven years. And he had had various cancers would crop up, but it was keeping him alive.
And so, frankly, I didn’t know I was going to have the option of a trial, but he told me run straight to Cleveland Clinic, it’s one of the best hospitals. So, I took his advice. And the first day the doctor walked in, and then all these people walked in, and I’m like, “Why do I have so many people in here?” Not just a doctor and a nurse. There was like a whole – this is interesting.
And so, then they said, “Well, we have something to offer you. And we have this immunotherapy trial, and you would be one of the first patients to try this.”
Now, when they said first patient, I’m not quite sure if they meant the first colon cancer patient, I’m not sure. But they told me the name of it, and I said, “I’m in. I’m in.” Because I knew my friend had survived all these years, and I thought, “Well, I’ve gotten the worst diagnosis I can have, what do I have to lose?” So, I said, “I’m on board, I’m on board.”
Katherine Banwell:
Mm-hmm. Did you have any hesitations?
Cindi Terwoord:
Nope. No, I’m an optimistic person, and what they assured me was that I could drop out at any time, which I liked that option.
Because I go, “Well, if I’m not feeling well, and it’s not working, I’ll get out.” So, I liked that part of it. I also liked, as Dr. Funchain had said, you go in for more visits. And I like being closely monitored, I felt that was very good.
I’ve always kept very good track of my health. I get my records, I get my office notes from my doctor. I’m one of those people. I probably know the results of blood tests before the doctor does because I’m looking them up. So, I felt very confident in their care. They watched me like a hawk. I kept a diary because they were asking me so many questions.
Katherine Banwell:
Oh, good for you.
Cindi Terwoord:
I’m a transcriptionist, so I just typed out all my notes, and I’d hand it to them.
Katherine Banwell:
That’s a great idea.
Cindi Terwoord:
Here’s how I’m feeling, here’s…And I was very lucky I didn’t have many side effects.
Katherine Banwell:
In your conversations with your doctor, did you weigh the pros and cons about joining a trial? Or had you already made up your mind that yes, indeed, you were going for it?
Cindi Terwoord:
Yeah, I already said, “I’m in, I’m in.” Like I said, it had kept my friend alive for these many years, he’s still on it, and I had no hesitation whatsoever.
I wish more people – I wanted to get out there and talk to every patient in the waiting room and say, “Do it, do it.”
I mean, you can’t start chemotherapy then get in the trial. And if I ever hear of someone that has cancer, I ask them, “Well, were you given the option to get into a trial?” Well, and then some of them had started the chemo before they even thought of that.
Katherine Banwell:
Mm-hmm. So, how are you doing now, Cindi? How are you feeling?
Cindi Terwoord:
Good, good, I’m doing fantastic, thank goodness, and staying healthy. I’m big into herbal supplements, always was, so I keep those up, and I’m exercising. I’m pretty much back to normal –
Katherine Banwell:
Cindi, what advice do you have for patients who may be considering participating in a trial?
Cindi Terwoord:
Do it. Like I said, I don’t see any downside to it. You want to get better as quickly as possible, and this could help accelerate your recovery. And everything Dr. Funchain mentioned, as far as – I really never brought up any questions about whether it would be covered.
And then somewhere along the line, one of the research people said, “Well, anything the trial research group needs done – like the blood draws – that’s not charged to your insurance.” So, that was nice, that was very encouraging, because I think everybody’s afraid your insurance is going to drop you or something.
And then the first day I was in there for treatment, a social worker came in, and they talked to you. “Do you need financial help? We also have art therapy, music therapy,” so that was very helpful. I mean, she came in and said, “I’m a social worker,” and I’m like, “Oh, okay. I didn’t know somebody was coming in here to talk to me.”
But that was all very helpful, and I did get free parking for a few weeks. I mean, sometimes I’d have to remind them. I’d say, “It’s costing me more to park than to get treated.” But, yeah, like I said, I’m a big advocate for it, because you hear so many positive outcomes from immunotherapy trials, and boy, I’d say if you’re a candidate, do it.
Katherine Banwell:
Dr. Funchain, do you have any final thoughts that you’d like to leave the audience with?
Dr. Pauline Funchain:
First, Cindi, I have to say thank you. I say thank you to every clinical trial participant, everybody who participates in the science. Because honestly, whether you give blood, or you try a new drug, I think people don’t understand how many other lives they touch when they do that.
It’s really incredible. Coming into clinic day in and day out, we get to see – I mean, really, even within a year or two years, there are people that we’ve seen on clinical trial that we’re now treating normally, standardly, insurance is paying for it, it’s all standard of care. And those are even the people we can see, and there are so many people we can’t see in other centers all over the world, and people who will go on after us, right?
So, it’s an amazing – I wouldn’t even consider most of the time that it’s a personal sacrifice. There are a couple more visits and things like that, but it is an incredible gift that people do, in terms of getting trials. And then for some of those trials, people have some amazing results.
And so, just the opportunity to have patients get an outcome that wouldn’t have existed without that trial, like Cindi, is incredible, incredible.
What Are the Risks and Benefits of Joining a Clinical Trial?
What Are the Risks and Benefits of Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.
Why should a cancer patient consider a clinical trial? Dr. Pauline Funchain of the Cleveland Clinic explains the advantages of clinical trial participation.
Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.
See More from Clinical Trials 101
Related Resources:
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Transcript:
Katherine Banwell:
Why would a cancer patient consider participating in a clinical trial? What are the benefits?
Dr. Pauline Funchain:
So, I mean, the number one benefit, I think, for everyone, including the cancer patient, is really clinical trials help us help the patient, and help us help future patients, really.
We learn more about what good practices are in the future, what better drugs there are for us, what better regimens there are for us, by doing these trials. And ideally, everyone would participate in a trial, but it’s a very personal decision, so we weigh all the risks and benefits. I think that is the main reason.
I think a couple of other good reasons to consider a trial would be the chance to see a drug that a person might not otherwise have access to. So, a lot of the drugs in clinical trials are brand new, or the way they’re sequenced are brand new. And so, this is a chance to be able to have a body, or a cancer, see something else that wouldn’t otherwise be available.
And I think the last thing – and this is sort of the thing we don’t talk about as much – but really, because clinical trials are designed to be as safe as possible, and because they are new procedures, there’s a lot of safety protocols that are involved with them, which means a lot of eyes are on somebody going through a clinical trial.
Which actually to me means a little bit sort of more love and care from a lot more people. It’s not that the standard of care – there’s plenty of love and care and plenty of people, but this doubles or triples the amount of eyes on a person going through a trial.
Katherine Banwell:
Yeah. When it comes to having a conversation with their doctor, how can a patient best weigh the risks and benefits to determine whether a trial is right for them?
Dr. Pauline Funchain:
Right. So, I think that’s a very personal decision, and that’s something that a person with cancer would be talking to their physician about very carefully to really understand what the risks are for them, what the benefits are for them. Because for everybody, risks and benefits are totally different. So, I think it’s really important to sort of understand the general concept. It’s a new drug, we don’t always know whether it will or will not work. And there tend to be more visits, just because people are under more surveillance in a trial.
So, sort of getting all the subtleties of what those risks and benefits are, I think, are really important.
Katherine Banwell:
Mm-hmm. What are some key questions that patients should ask?
Dr. Pauline Funchain:
Well, I think the first question that any patient should ask is, “Is there a trial for me?” I think that every patient needs to know is that an option. It isn’t an option for everyone. And if it is, I think it’s – everybody wants that Plan A, B, and C, right? You want to know what your Plan A, B, and C are. If one of them includes a trial, and what the order might be for the particular person, in terms of whether a trial is Plan A, B, or C.
