Coping With Thyroid Cancer Recurrence
- After initial treatment, thyroid cancer patients are carefully monitored for recurrence. If the cancer does come back, there are still treatment options.
- Survival rates are still very good for most people, and new treatments continue to provide hope for long-term remission.
- Certain factors, like the results of initial surgery, affect whether someone is considered low-risk or high-risk for thyroid cancer recurrence. These factors will affect your medical team’s approach to monitoring after treatment.
- When cancer comes back, treatment options include additional surgery, radiation therapy, radioactive iodine (RAI) therapy, targeted therapy, chemotherapy, thermal ablation, and/or enrolling in clinical trials.
“Recurrence usually is detected in one of two ways. Either they have a new finding on imaging, so we’re likely doing surveillance ultrasounds of their neck or CT scans and something pops up that wasn’t there before. Alternatively, sometimes we detect a recurrence through the blood work,” Dr. Samantha Kass Newman, an endocrinologist at Memorial Sloan Kettering Cancer Center, tells SurvivorNet.
Read MoreWhy Thyroid Cancer Sometimes Comes Back
Even with high treatment success rates, thyroid cancer can recur. Depending on the source, about 20% of people with thyroid cancer are at risk of having it come back after initial treatment. Recurrence may happen a few months after remission or it could surface years — sometimes even decades — later. Certain factors that may increase the risk of thyroid cancer returning include:- Age over 45 at the time of initial diagnosis
- More aggressive or advanced stage tumor (for example, a tumor that has spread beyond the thyroid or has invaded blood vessels)
- Being male (though women are more likely to get thyroid cancer in general, men who do get it sometimes face a higher risk of recurrence)
- Specific genetic changes, such as mutations in the BRAFV600E gene
- Incomplete surgical removal of the original cancer if the tumor was too large or in a location that was difficult to remove entirely
Although these factors can increase one’s chances of facing a recurrence, they do not mean a recurrence is inevitable. Many people in higher risk groups never experience a return of their disease, while some in lower risk groups may find the cancer comes back unexpectedly. The true risk varies by individual.
“When we say low-risk or high-risk cancer, we really mean risk of recurrence,” Dr. Newman explains. “So not risk that it’s going to limit your lifespan or risk that you may die of your disease. It means risk that the cancer is going to come back — and so the low-risk thyroid cancer really means low risk of recurrence.”
Lower-risk patients are usually those whose tumors could be completely removed by surgery and that did not present with any characteristics that might increase the risk that some cancer was left behind, Newman explains.
Type Matters
Thyroid cancer is generally grouped based on the specific cells it develops from and recurrence rates for thyroid cancer also vary according to cancer type.
Papillary thyroid cancer (PTC) has been shown to recur in around 1.6% of low-risk patients, 7.4% of intermediate-risk patients, and 22.7% of high-risk patients, while follicular thyroid cancer recurs in about 13.6% of cases.
Medullary thyroid cancer (MTC) can return in up to 50% of individuals, and Hürthle cell cancer can recur in about 12-33% of cases. Though these figures may appear intimidating, close monitoring and an array of available therapies still provide a favorable outlook for many patients, including those in higher-risk groups.
Signs Thyroid Cancer May Have Returned
Recurrent thyroid cancer does not always announce itself loudly. In some cases, it’s spotted on a routine check-up long before you notice any symptoms. That’s why consistent monitoring and regular follow-up visits are so crucial.
Some of the more common signs and symptoms of a return include:
- A lingering cough that doesn’t go away
- A lump or swelling in the neck that you can feel or see
- Difficulty swallowing (dysphagia)
- Neck pain that isn’t explained by muscle strain or other causes
- Hoarseness or voice changes
For many individuals, blood tests measuring thyroglobulin can be one of the earliest indicators of a possible recurrence — particularly in those who have had their entire thyroid removed and have undergone radioactive iodine ablation.
“Thyroglobulin is a protein produced by only thyroid or thyroid cancer cells. And so theoretically when someone has had the full thyroid taken out, ideally that thyroid globulin is either zero or very low,” Dr. Newman explains.
“Thyroglobulin alone can’t differentiate between regrowth of healthy thyroid tissue, which happens sometimes or recurrent cancer, but it suggests that something is growing. So when someone comes to see me with a concern for recurrence, the first thing we do is we determine what’s the scale that we’re talking about? Has the thyroglobulin tripled in the last six months or is it just going up slightly and slowly?”
Monitoring for Recurrence
If a doctor finds your recurrence at an early stage, your chance of quickly regaining remission is often higher. This is why regular follow-ups, blood tests, and neck ultrasounds are so crucial. Catching changes early gives you the best shot at effective intervention.
Your medical team may monitor you with the below approaches.
Thyroglobulin Testing
Thyroglobulin levels are typically measured every 3 to 6 months in the first couple of years after treatment, then every 6 to 12 months afterward, depending on the individual’s risk profile.
A rising thyroglobulin level in someone who has had their entire thyroid removed is often an early sign of recurrence. However, it’s crucial to interpret these levels in conjunction with thyroglobulin antibody tests, since antibodies can interfere with measurements.
Different laboratories may use slightly different testing kits, so it’s helpful to remain consistent with where and how you get tested if possible.
Imaging
Your medical team may use a few different imaging tests, including:
- Neck Ultrasound: This is one of the most important and frequently used tools. It’s noninvasive, doesn’t involve radiation, and is good at detecting small changes in the thyroid bed (where the thyroid used to be) or in nearby lymph nodes.
- Radioiodine Scan: This is used for differentiated thyroid cancers (like papillary or follicular) to detect areas of the body that might be taking up iodine, an indication that thyroid cells (including possibly cancerous ones) are present.
- CT Scan or MRI: May be employed if there’s suspicion that cancer has returned in places beyond the neck or if structural changes need detailed visualization.
Depending on your case, your doctor will tailor the frequency of these tests to match your individual risk. If you had a very small, low-risk tumor, you may need fewer follow-ups than someone who had a larger, more advanced or aggressive tumor.
What Are The Options If Thyroid Cancer Returns?
It’s normal to feel scared, anxious, or even angry when cancer recurs. But do remember: a recurrence does not automatically mean you cannot regain remission. In fact, many people who experience a recurrence go on to manage their cancer successfully.
“We first make a decision about what’s the volume of disease we think we’re dealing with. Sometimes if the volume of disease is very low, even if we suspect a recurrence, we don’t always treat it,” Dr. Newman explains. This is known as a watch and wait approach.
“We really try to not aggressively intervene on very low volume disease knowing what we know about thyroid cancer, which is that we have these periods of very slow growth or no growth that might not warrant aggressive intervention. One option for a recurrence is, if it’s a low volume recurrence, we’ll watch it over time and get a sense of the behavior of these cells and what they’re doing,” she explains.
Surgery (Salvage Surgery)
If your recurrent tumor is localized — meaning it’s confined to the neck area and can be safely removed — your doctor may recommend another operation.
Some people undergo compartmental neck dissection if the cancer has returned in lymph nodes in the central or lateral areas of the neck. In other cases, surgeons might remove any suspected residual thyroid tissue or tumor growth that’s close to the site of the initial surgery.
“If someone has a local recurrence in the neck, we always ask our surgeons for their opinion about whether or not this is worthy of another surgery. They’ll go in, they can do a neck dissection, where they clean out the recurrent disease. Sometimes that’s all that’s required,” Dr. Newman explains.
External Beam Radiation Therapy (EBRT)
This treatment may be appropriate in cases where the tumor is inoperable or does not respond to radioactive iodine.
EBRT can help reduce tumor size, alleviate symptoms (like pain or trouble swallowing), and keep the cancer from spreading further.
“Once in a while, we use external beam radiation, which is kind of traditional radiation, where we radiate the field of disease recurrence. We choose those patients really carefully. We don’t like to do things that cause significant side effects, but it is necessary sometimes. Our radiation techniques for external beam radiation become more honed and we’re able to radiate smaller areas and minimize side effects,” Dr. Newman explains.
Radioactive Iodine (RAI) Therapy
For papillary or follicular thyroid cancer, RAI remains a powerful option if the recurring tumor is capable of taking up iodine. If you have small, scattered metastases in the lungs or bones that still absorb iodine, multiple rounds of RAI may help shrink or even eliminate the cancer.
“Radioactive iodine is probably the most targeted form of radiation that exists. It takes into account what we know about the behavior of thyroid cells. Thyroid cells — both healthy and some cancerous — have on their surface a channel called the sodium iodide symporter. This is how the thyroid cell internalizes iodine, which is one of its primary jobs in the body. Thyroid cells need iodine. They use it to make thyroid hormone,” Dr. Newman explains.
“…We can kind of capitalize on this knowledge about how the thyroid cell behaves to get radiation directly into the thyroid cell. Now, one of the most important things that we do when we’re looking at more advanced tumors is look at the mutational status because some mutations that we see in thyroid cancer actually cause a downregulation of those very channels on the cell surface. These are people who are less likely to internalize that iodine and less likely to respond. But assuming someone has a classical papillary thyroid cancer, they may be a candidate for this type of treatment,” she adds.
Chemotherapy
Traditional chemotherapy is not used frequently for thyroid cancer, but in certain advanced cases — particularly those that are aggressive or do not respond to RAI or surgery — it may be offered.
Targeted Therapy
For advanced or RAI-refractory thyroid cancers, targeted medications known as tyrosine kinase inhibitors (TKIs) may be considered. Examples include lenvatinib, sorafenib, cabozantinib, and others.
Targeted therapy is a treatment approach that focuses on the specific genetic changes that drive thyroid cancer cells to grow in unusual ways. Doctors begin by analyzing samples of a patient’s cancer cells, looking for mutations in certain genes, like RET, BRAF, or NTRK. These detailed tests help specialists in pathology and personalized diagnostics pinpoint the exact abnormal signals in each patient’s cancer. Once these changes are identified, a team creates a targeted treatment plan tailored to each individual. The aim is to block the precise proteins or pathways that are causing thyroid cancer cells to thrive, while limiting harm to healthy cells.
Several classes of targeted drugs are available, each designed to shut down different cancer-driving mechanisms.
- Kinase inhibitors (including multikinase inhibitors) work by halting the signals that tell cancer cells to grow or form new blood vessels.
- BRAF inhibitors, often paired with MEK inhibitors, target changes in the BRAF gene, preventing a protein from sending growth signals throughout the cell.
- NTRK inhibitors counteract genetic alterations that affect nerve-related proteins. Similarly, RET inhibitors address mutations in the RET gene, shutting down abnormal proteins in thyroid cells. By customizing which drug — or combination of drugs — is used, doctors can more effectively slow or stop thyroid cancer progression and improve outcomes for many patients.
Some of these medications have side effects that need close monitoring, but they have significantly improved options for those who might otherwise have few treatments.
Thermal Ablation Techniques
Radiofrequency ablation, laser ablation, and ethanol ablation can be used to treat small localized recurrences in the neck if someone is not a good candidate for surgery or if the tumor is in a difficult spot.
In some cases, these less invasive methods can be as effective as surgery for carefully selected patients.
Clinical Trials
If your cancer is particularly aggressive or fails to respond to standard treatments, clinical trials may be an option. The uptick in clinical trials research offers cancer patients with advanced disease new options, including new drugs and new combination therapies.
Dr. Benjamin G. Neel, PhD, director of NYU Langone’s Perlmutter Cancer Center, spoke to SurvivorNet about the importance of these clinical trials and what they can do to help patients. Although many drugs tested in trials will fail, there are also greater odds for a successful outcome. “There is an incredible bevy of new therapies being developed,” Dr. Neel says. “If I were a cancer patient with a widely spread metastatic cancer, I would want to be on a clinical trial.”
Your care team will collaborate with you to select the approach that best matches your condition, overall health, and personal preferences. Some patients may require a combination of treatments, or an initial therapy followed by additional intervention.
You can also check out SurvivorNet’s simple Clinical Trial Finder here.
Emotional and Psychological Coping
A recurrence can shake your sense of stability. You might have believed you were “done” with cancer, only to face it again. Common feelings include shock, fear, sadness, anger, or a sense of betrayal by your body. Here are some strategies to help you cope during this time:
- Build a Strong Support System: Lean on family, friends, or community groups for emotional support. If you’re feeling isolated, look into local or online thyroid cancer support communities. Speaking with others who have gone through similar experiences can be incredibly comforting.
- Seek Professional Guidance: Mental health professionals, such as counselors or psychologists, can offer coping strategies and a safe space to share your worries. Social workers, patient navigators, or spiritual care providers at your treatment center can also help with practical matters, such as insurance, transportation, and scheduling.
- Stay Informed but Not Overwhelmed: Ask your doctors all the questions you have. Understanding your treatment plan can help reduce anxiety. That said, constantly researching or reading worst-case scenarios online can amplify fears. Try to maintain a balance and focus on trusted, scientifically supported information.
- Lifestyle and Self-Care: If your doctors say it’s safe, gentle exercise can boost mood and maintain strength. Walking, yoga, or light aerobics might be helpful. A balanced diet can support overall health, helping your body cope better with treatments. If you smoke, consider quitting, as smoking can interfere with healing and overall health. If you drink alcohol, keep it in moderation or discuss limits with your care team. Practices like meditation, mindfulness, journaling, or breathing exercises can help manage anxiety and stress.
- Set Realistic Expectations: Remission after a recurrence may involve several steps, so give yourself permission to take things day by day. Celebrate small victories, such as a favorable lab test or regaining your energy after treatment.
Questions To Ask Your Doctor
- What are my treatment options, and which do you recommend?
- Are there clinical trials available for someone in my situation?
- How frequently should we be checking my thyroglobulin levels now?
- What lifestyle changes can I make to help support my treatment and recovery?
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