Frequently Asked Questions about Medullary Thyroid Cancer

1. What is Medullary Thyroid Cancer?

Answer From Mayo Clinic:

Papillary thyroid cancer. The most common form of thyroid cancer, papillary thyroid cancer arises from follicular cells, which produce and store thyroid hormones. Papillary thyroid cancer can occur at any age, but most often it affects people ages 30 to 50. Doctors sometimes refer to papillary thyroid cancer and follicular thyroid cancer together as differentiated thyroid cancer.

Follicular thyroid cancer. Follicular thyroid cancer also arises from the follicular cells of the thyroid. It usually affects people older than age 50. Hurthle cell cancer is a rare and potentially more aggressive type of follicular thyroid cancer.

Anaplastic thyroid cancer. Anaplastic thyroid cancer is a rare type of thyroid cancer that begins in the follicular cells. It grows rapidly and is very difficult to treat. Anaplastic thyroid cancer typically occurs in adults age 60 and older.

Medullary thyroid cancer. Medullary thyroid cancer begins in thyroid cells called C cells, which produce the hormone calcitonin. Elevated levels of calcitonin in the blood can indicate medullary thyroid cancer at a very early stage. Certain genetic syndromes increase the risk of medullary thyroid cancer, although this genetic link is uncommon.

Other rare types. Other very rare types of cancer that start in the thyroid include thyroid lymphoma, which begins in the immune system cells of the thyroid, and thyroid sarcoma, which begins in the connective tissue cells of the thyroid.

2. What is a biopsy for MTC ?

Answer from Mayo Clinic:

Needle biopsy

During needle biopsy, a long, thin needle is inserted through the skin and into the suspicious area. Cells are removed and analyzed to see if they are cancerous.

3. What specialist should I see for future care?

4. Q. Is MTC hereditary?

A. Genetic testing. Some people with medullary thyroid cancer may have genetic changes

that can be associated with other endocrine cancers. Your family history may prompt

your doctor to recommend genetic testing to look for genes that increase your risk of

cancer. (Mayo Clinic )

Q.What are the different types of Medullary Thyroid Cancer?

A. (below)

Sporadic (not inherited) Medullary Thyroid Cancer

Hereditary (inherited) Medullary Thyroid Cancer

The Three Types of Inherited Medullary Thyroid Cancers:

1.      MEN2A (also called Sipple’s Syndrome)

2.     MEN2B

3.      Inherited medullary thyroid cancer (without any other associated endocrine abnormalities)

6.Q.. What is CEA and Calcitonin?

A.Medullary thyroid cancer makes up about 5% of all cases of thyroid cancer and is very different from the more common papillary and follicular thyroid cancers.  Medullary thyroid cancer comes from the C-cells of the thyroid. The C-cells make a hormone called calcitonin which has a weak effect on bone growth and blood calcium levels. Since calcitonin’s effect is so weak, it does not need to be replaced after removal of the thyroid like thyroid hormone. Fortunately, blood calcitonin levels can be used in making the diagnosis and to look for recurrences of medullary thyroid cancer. Unlike most other thyroid cancers, medullary thyroid cancer does not absorb RAI and therefore the best chance of curing a patient is completely removing the cancer at the first operation. (https://columbiasurgery.org/conditions-and-treatments/medullary-thyroid-cancer, 2020 )

7. Q. Can MTC spread outside the thyroid and neck?

A. It starts in thyroid cells that doctors call C cells. The cancerous cells can spread to your lungs, liver, or lymph nodes before you even notice it



8. Q. What are the symptoms of MTC?

A. You may have no signs or symptoms of MTC at first. You may have one or more lumps (nodules or goiters) in your neck. You may also have any or all of the following: Diarrhea, Bone Pain, Weight Gain, Shortness of breath, Lumps in the neck, Flu-like symptoms/feeling, Brain-fog, Memory issues, Low Energy and Weakness

 9. Q. What are some treatment options?

10. Q. What is alcohol ablation?

A. (I & II)

I. Injecting alcohol into cancers

Alcohol ablation involves injecting small thyroid cancers with alcohol using imaging such

as ultrasound to ensure precise placement of the injection. This procedure causes thyroid

cancers to shrink. (Mayo Clinic )

II. Alcohol ablation might be an option if your cancer is very small and surgery isn’t an

option. It’s also sometimes used to treat cancer that recurs in the lymph nodes after surgery.

(Mayo Clinic )

11. Q. Is there a cure? Q.Are there any new treatments for MTC?

12. Q. Where can I register for clinical trials?

A. https://clinicaltrials.gov/ct2/show/NCT04211337?cond=Medullary+Thyroid+Cancer&draw=2&rank=1 and https://www.cancer.gov/about-cancer/treatment/clinical-trials/disease/thyroid-cancer/treatment

13. Q. Where can I find thyroid conferences?

A. http://www.thyca.org/support/conferences/

14. Q. What is Calcitonin doubting-time?

A.

Calcitonin (Ct) and carcinoembrional antigen (CEA) are widely used as tumor markers for the post-operative follow-up of patients with medullary thyroid carcinoma (MTC). ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987862/)

In patients with elevated serum Ct and CEA their dynamics can be described by calculating the doubling time (DT) – the time, they need to double the serum concentration. Previous reports concluded that the Ct and CEA DT have prognostic value in MTC patients. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987862/)

We retrospectively analyzed data of 70 MTC patients with elevated serum Ct or CEA. In total, doubling times were calculated and the DT of the less favorable marker was used to stratify the patients into the low- and high-risk group with the cut-off value of 2 years. The survival analysis was performed using Cox proportional hazard method. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987862/)

Results

The doubling time < = 2 years of the less-favorable marker had significant prognostic impact for recurrence-free survival, HR = 2.61 (1.43-4.71) and overall survival, HR = 8.99 (3.51-23.04). (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987862/)

 15. Q. Are there medications for MTC?

16. Q.What medications do I take for thyroid replacement?

17. Q.What tests will I need for MTC ?

18. Q.What are other recourses for me online to start with?

19. Q.How much time will I need off work to recover from surgery or treatments?

20. Q.What is a thyroid storm?

21. Q. What foods can affect my thyroid medicine absorption?

22. Q. What information can I share so my family can have a better understanding with my journey?

23. Q. What are some things that might happen from my surgery?

24. Q. Can I be an organ donor or give blood/plasma?

25. Q. Should I make lifestyle changes, (e.g. drinking alcohol, whole food diet, gluten-free foods/products, coloring my hair)?

26. Q.Is it true that some die of old age and not from their MTC?

27. Q. What other health issues can be associated with MTC, (e.g. gallbladder, teeth, bone, arthritis, IBS, diabetes, lupus, hair loss, menstrual cycle, sex drive fibromyalgia) ?

28. Q. Do I (females) need to worry about carrying a child in pregnancy?

29. Q. Do I need a thyroid-guard for dental x-rays?

A. Yes, even if you do not have a thyroid anymore, it will protect your parathyroid glands! Tell all your friends/family about the thyroid guard.

30. Q. Can vitamins/medications affect my labs?

A. Yes, keep a current list of all medications, vitamins or supplements. See if your shampoo has biotin in it, it could affect your labs.

31. Q. What is palliative care?

A. Palliative care is specialized medical care that focuses on providing relief from pain and other symptoms of a serious illness. Palliative care specialist’s work with you, your family and your other doctors to provide an extra layer of support that complements your ongoing care. Palliative care could be used while undergoing other aggressive treatments, such as surgery, chemotherapy or radiation therapy. Increasingly, it is being offered early in the course of cancer treatment. (Mayo Clinic )A. When palliative care is used along with all of the other appropriate treatments, people with cancer may feel better and live longer. (Mayo Clinic )A. Palliative care is provided by a team of doctors, nurses and other specially trained professionals. Palliative care teams aim to improve quality of life for people with cancer and their families. (Mayo Clinic )