Medullary Thyroid Cancer FAQ's

Medullary Thyroid cancer is one of several thyroid cancers.

• Papillary thyroid cancer
• Follicular thyroid cancer
• Medullary thyroid cancer
• Anaplastic thyroid cancer

Papillary and Follicular make up the majority of thyroid cancers and there are many treatments for them.

Anaplasitc is the rarest, representing roughly 1% of thyroid cancers and is fast-growing. All Anaplastic diagnosis are Stage 4 and patients often succumb quickly to the disease.

Medullary Thyroid cancer behaves differently and doesn't affect thyroid hormone production, it does cause an increased production of Calcitonin. This means you may not feel a loss of energy and your TSH level may test as normal.

The definitive test for MTC is if the patients Calcitonin level is over 100. Anything over 100 is MTC.

MTC spreads in small quantities throughout the body, typically in the bones (spine and hips are common) as well as the liver and lungs. These growths are slow at first and not typically noticed, allowing the cancer to metastasize throughout the body before being detected.

Once metastasis is detected in the bones (via PET scan, MRI) it is basically guaranteed to also be in organs as well, possibly in smaller quantities that may or may not be detectable. 

NO!

As a patient, don't allow anyone tell you this. If a Doctor of any kind does, consider finding an alternate physician.

Well meaning friends or family might say this to you but there is no "good" cancer. MTC is incurable and aggressive; it is not "good".

According to Cancer.gov, MTC accounts for 3-4% of all Thyroid Cancer cases making it very rare. Most Oncologists and doctors in general will never see an MTC patient in their entire career.

It's very important for MTC patients to see an Oncologist that is an MTC specialist!

Yes! 

Cancers have gene mutations which defines which treatment options are available to the patient.

Most MTC patients are what's called "RET Positive" - they have a RET gene mutation.

Patients that are RET Negative can have an HRAS or NRAS or other mutation instead.

No.

Thomas has a mutation of the HRAS gene which does not respond to any current Chemotherapy or other targeted treatments. There is one that he can take when he is "end stage", but studies have shown that these treatments only slow progression briefly and overall do not extend the patients life.

To better guide the patients treatment, they are assigned a "Stage". 

According to Cancer.net:

Stage I: This stage describes a small tumor with no spread to lymph nodes and no distant metastasis. 

Stage II: This stage describes a larger localized tumor with no spread to lymph nodes and no metastasis. 

Stage III: This stage describes any localized tumor that has spread to the central compartment of lymph nodes but has not metastasized.

Stage IVA: This stage describes a tumor that has spread to nearby structures, regardless of whether it has spread to the lymph nodes, but it has not spread to distant places.

Stage IVB: This stage describes a tumor that has spread beyond nearby structures, regardless of spread to lymph nodes, but no distant spread.

Stage IVC: This stage is used when there is evidence of distant metastasis. (Has spread to other areas of the body including bones, liver, kidney etc.)

*Thomas was diagnosed at Stage 4C.

Patients may experience some or all of the following:

Lump in the neck near the thyroid gland

Painful swallowing (of even liquids)

Coughing (often days long after breathing cold air)

Shortness of breath

Flushing of the face

Sweating

Diarrhea

If you have some or all of these symptoms for a prolonged period, please see your Doctor for a physical and make sure he/she feels your neck for lumps.

Yes if it has not metastasized.

Once MTC has metastasized (spread) outside of the thyroid area, there is no way to eliminate it all. 

MTC will spread small amounts (micro metastasis) throughout the body and slowly grow until it becomes detectable.

Surgery and radiation are the only ways to remove most MTC metastasis.

Roughly 25% of all MTC cases are hereditary; all patients that have a RET gene mutation must be tested to see if their MTC is hereditary or not.

HRAS, KRAS and NRAS mutations are always sporadic and not hereditary.

No.

RAI is not indicated for MTC patients since MTC does not take up (absorb) iodine. 

In patients with other thyroid cancers, RAI can be used to eradicate any remaining original thyroid material therefore reducing the chance of metastasis.

No.

Your body can only handle up to a certain amount of radiation before you cause more damage and potentially other cancers. Radiation typically used only on large metastasis that are causing problems, or appear likely to cause problems.

Radiation can be used on the neck after a Total Thyroidectomy (TT) to destroy remaining thyroid tissue, but the treatment is painful and has long lasting side effects.

If a patient is Stage 4 with distant metastasis, there is no point in applying radiation to the neck as it will have no overall benefit to the patient or extend their life.

MTC patients should go to a "Center of Excellence" (COE) for MTC. There are several in the USA including:
MD Anderson
Memorial Sloan Kettering
Mayo Clinic

There may be others near you, ask your Primary Care Provider (or whoever has given you the MTC diagnosis) what the COE's are near you.
Only allow a doctor that sees multiple MTC patients per month lead your care!

If you like Facebook, do a search for "medullary thyroid cancer group" and you will see there's a a few thyroid cancer groups. 

There's at least one FB group for only patients with MTC that has thousands of members.

Thomas has created a Facebook Group only for patients with Stage 4 MTC:

https://www.facebook.com/groups/stage4mtc

There may also be other support groups online and near you. A few Google searches should help you find a support group that appeals to you.

Yes, you can. It's important to understand at least the basics of the disease.

Be aware that you will read things that are scary, and may not apply to you. Always verify you are reading something on a reputable source site and ask your Doctor if you have questions about what you read.

The American Thyroid Association (ATA) has a document with physician guidelines regarding the treatment of MTC that you can review and/or provide to your Doctor. The document can be downloaded here:

https://www.liebertpub.com/doi/pdfplus/10.1089/thy.2014.0335

While we're not going to tell you to not take a supplement you'd like to take, please make sure it's from a reputable source and tell your Doctor you are taking it.

In our opinion:

If there was a special supplement that cured cancer, we would know about it by now.

Remember: we are not medical professionals, please consult with your Doctor.

There are usually some; here are some websites to review for current trials:

http://www.clinicaltrials.gov.

https://www.cancer.gov/about-cancer/treatment/clinical-trials/disease/thyroid-cancer/treatment

https://www.cancer.gov/about-cancer/treatment/clinical-trials

https://www.thyroid.org/clinical-trials/

From the National Cancer Institute, National Institutes of Health Bethesda, Maryland NIH Publication No. 00-4830

1. Clinical trials are research studies that involve people. Each study tries to answer scientific questions and to find better ways to prevent, diagnose, or treat cancer.
2. In cancer research a clinical trial is designed to show how a particular anticancer strategy—for instance, a promising drug, a gene therapy treatment, a new diagnostic test, or a possible way to prevent cancer—affects the people who receive it.
3. A clinical trial is one of the stages of a long and careful cancer research process. Getting promising results from testing a new drug on mice, for example, is a preliminary step to human research studies. Treatments that work well in mice do not always work well in people.
4. People can benefit from clinical trials. In treatment trials, for example, participants receive high-quality cancer care—and will be among the first to benefit if a new approach is proven to work.
5. Only eligible people can participate in a clinical trial. Each study has its own guidelines for who can participate. Generally, participants are alike in key ways—such as the type and stage of cancer, age, gender, and other factors.
6. There may be drawbacks. New treatments under study are not always better than, or even as good as, standard care. And they may have unexpected side effects. Through a process called “informed consent” you will learn about a study’s treatments and tests, and their possible benefits and risks, before deciding whether or not to participate.
7. In treatment trials involving people who have cancer, placebos are very rarely used.
8. Many treatment trials are designed to compare a new treatment with a standard treatment, which is the best treatment currently known for a cancer, based on results of past research. In these studies patients are randomly assigned to one group or another.
9. Clinical trials take place all over the country—in cancer centers, other major medical centers, community hospitals and clinics, physicians’ offices and veterans’ and military hospitals.
10. Health plans and managed care providers do not always cover all patient care costs in a study. What they cover varies by plan and by study. Ask a doctor, nurse, or social worker form the study to help you determine in advance what costs are covered. The research costs, such as data management, are covered by the study sponsor.