Selecting MTC Physician Specialists

We want to emphasize the importance of benefiting from the expertise of specialists, either by receiving your treatment from a specialist, or through consultation with a specialist, or through having your physician consult with a specialist. We cannot overemphasize the importance of this point.

In many cases, only an endocrinologist or endocrine surgeon who has treated large numbers of people with medullary thyroid cancer will have the kind of experience needed to help you maneuver through the treatment decisions regarding this disease.

It is also critically important to consider the advantages of being cared for by, or being in consultation with, physician(s) who are part of or who have access to multidisciplinary care centers rather than physicians who function in isolation from other specialists. The physicians at or with access to these multidisciplinary centers can include endocrinologists, surgeons, medical and radiation oncologists, radiologists, and clinical genetics services.

The specialists involved in MTC treatment may include:

• Endocrine Surgeons. Most perform thyroid, parathyroid, and adrenal surgery. Surgical specialists can be either Head/Neck Surgeons or Surgical Oncologists, either of whom can specialize as endocrine surgeons.
• Endocrinologists
• Medical Oncologists. It is expected that more and more medical oncologists will be coming on board to help treat MTC patients as new systemic targeted therapies are added as treatment options for inoperable metastatic disease.
• Radiologists

Some of these specialists, plus other physicians, are specialists in:

• Pediatric MTC
• Pheochromocytoma
• Radiofrequency Ablation
• Vocal Cord Surgery

MTC patients need treatment based on current knowledge about Medullary Thyroid Cancer. This section gives general comments about physician selection, together with some specific points to consider, plus lists of sources for finding physicians for consultation with you or your doctor, or for your treatment.

General Comments

Treating MTC often involves a team of physicians, with one physician as the team leader.

It is important that physicians treating MTC are willing to consult other physicians with known experience in MTC, including, if needed, physicians involved in clinical trials for new treatments for MTC.

Patients and caregivers need physicians who are willing to consult with MTC specialists, and who know how to stay ahead of the disease course.
It’s also important that the physician be willing to answer, with honesty and compassion, patients’ and caregivers’ questions about their experience with MTC.

Many MTC specialists have spoken at ThyCa’s conferences and workshops. In addition, survivors and caregivers in ThyCa’s Medullary Thyroid Cancer E-Mail Support Group have compiled names of specialists. In a section below, we include links to this list and other lists.
However, we suggest that patients and caregivers use physician lists with caution.

Research papers are not necessarily the most useful resource for many. Research papers are difficult for many people to access. In addition, they can be difficult to understand, because they are written for professionals with extensive medical training. Also, there are terrific doctors who are not published.

We must remember how alone the newly MTC diagnosed patients feel. We believe that it is important to have resource lists that include research physicians who have authored the literature, but are broader. That way, the people thrust into this disease have a starting point.

Points To Consider

• Someone newly diagnosed with Medullary Thyroid Cancer should consider joining ThyCa’s Medullary Thyroid Cancer E-Mail Support Group as a means of communicating with others who have been diagnosed with MTC. It’s a great way to not feel isolated while going through care.
• Patients and caregivers need to know which physicians are knowledgeable and experienced in treating MTC, as a starting point for those newly diagnosed. Families need to reach those with expertise as quickly as possible.
• The list should include both clinical physicians (those who see patients) and MTC researchers (those with whom clinical physicians may consult).
• Some physicians involved with MTC care are both clinicians and researchers. Others are primarily clinicians. Physicians learn from each other through their medical journals, meetings, consultations regarding particular patients, and informal communications.
• There are terrific clinicians who are not published authors.
• A doctor who has seen many MTC patients is a better candidate than one who has seen few MTC patients. -Most endocrinologists, otolaryngologists, and endocrine surgeons have little or no experience with treating medullary thyroid cancer in adults or children.
• With medullary thyroid cancer accounting for a small percentage of thyroid cancers, the search for experienced doctors should be done carefully.
• A doctor treating MTC must be open to reviewing the latest research literature and discussing treatment options with MTC researchers and experienced MTC clinicians, including those involved in clinical trials of new treatments.
• Patient length of life is only one of the important outcome indicators for MTC treatment. The quality of life is another important factor.
• Even physicians experienced in treating this disease have encouraged patients to get second opinions.
• It is important to do things appropriately from the beginning, particularly the surgery, so seek out the best treatment. Remember that no physician will fault a patient or caregiver for seeking out the best treatment available.
• There is no current rating or experience tracking system or database in place to help a patient choose a doctor to help treat MTC.
• You should try to select physicians who are members of medical professional associations that emphasize continuing medical education.

Here are four lists:

• List of specialists compiled by MTC survivors and caregivers in ThyCa’s Medullary Thyroid Cancer E-Mail Support Group. A monthly e-mail message to the group sends the names and institutions of physician specialists. The group invites patients and caregivers to contact other survivors and caregivers through the MTC E-mail Support Group list if they have any questions or just need to talk. To receive messages from this free group, follow the instructions for joining, on the Email Support page.
• MTC specialist speakers at past ThyCa Conferences and Workshops. Many medullary thyroid cancer specialists speak at the conferences. Our conferences are held in different areas of the USA each year. ThyCa rotates speakers to introduce survivors and caregivers to a broad array of experts on thyroid cancer. Speakers include endocrinologists, medical oncologists, surgeons, and other specialists.
• ThyCa’s Medical Advisory Council Members, and their colleagues in their centers and other centers. The medical advisors include specialists in MTC, as well as colleagues of MTC specialists at major treatment centers. ThyCa’s web site, including the MTC site, receives input from the medical advisors, the conference and workshop speakers, and additional specialists.
• Specialists on Professionals’ Lists linked on the Find a Thyroid Specialist page of ThyCa’s web site. This page has links to four leading medical organizations that have geographic lists of thyroid and thyroid cancer specialists on their web sites. Ask any physician you contact about their experience with MTC.

Our web site also has information about current clinical trials.

• Having good communication with your doctor is one of the keys to getting good medical care.
• Being able to communicate with your doctor helps ensure that there is understanding about planned treatments and that you or your loved one receives the proper treatment, thus aiding in the eventual outcome.
• Studies have shown that in any type of crisis, the outcome is better when the people involved have a good working relationship.
• If your physician is not a medullary thyroid cancer specialist, he or she should be open to consulting with a medullary thyroid cancer expert.
• You want the best care. You are coming to the doctor for medical care, not for you to find a new friend. Remember that your family is taking the time and transportation to receive care, and usually is paying the doctor, often through insurance and co-payments. It's your body and your time and money.
• If you aren’t getting good care or if you find it difficult to communicate with the doctor, find a physician who is knowledgeable about medullary thyroid cancer and with whom you can communicate well.

• Take a family member or friend to the appointment. Two sets of ears are better than one.
• Take a tape recorder if necessary. (Make sure to ask if it's all right to tape!)
• Take notes. Keep a journal of questions, answers, and comments about the appointment.
• Ask for an explanation of unfamiliar terms and definitions.
• Ask for a visual aid. Seeing what your doctor is talking about on a chart or visual aid will help you remember.
• Ask if the doctor has any printed information to give you. Ask for the availability of other resources.
• Ask questions. Don't be afraid to be your own advocate. To ensure that you understand the answers, paraphrase the answer back to the physician and ask if that's correct.
• Give your doctor feedback on what he or she has just told you.