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.
involved in MTC treatment may include:
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.
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
Some of these
specialists, plus other physicians, are specialists in:
- Vocal Cord
Physicians for MTC Treatment
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.
often involves a team of physicians, with one physician as the
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.
caregivers need physicians who are willing to consult with MTC
specialists, and who know how to stay ahead of the disease course.
Itís also important that the physician be willing to answer, with
honesty and compassion, patientsí and caregiversí questions about
their experience with MTC.
Many MTC specialists
have spoken at ThyCaís conferences and workshops. In addition,
survivors and caregivers in ThyCaís 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.
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.
newly diagnosed with Medullary Thyroid Cancer should consider
joining ThyCaís Medullary Thyroid Cancer E-Mail Support Group
as a means of communicating with others who have been diagnosed
with MTC. Itís a great way to not feel isolated while going
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
- 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.
length of life is only one of the important outcome indicators
for MTC treatment. The quality of life is another important
- 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
- List of
specialists compiled by MTC survivors and caregivers in ThyCaís
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 this page: http://www.thyca.org/email.htm#medullary.
- 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.
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. ThyCaís
web site, including the MTC site, receives input from the medical
advisors, the conference and workshop speakers, and additional
on Professionalsí Lists linked on the Find
a Thyroid Specialist page of ThyCaís 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
Our web site
also has information about current
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.
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
- 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
arenít 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.
Remembering What Your Doctor Says At the Appointment
from Teamwork: The Cancer Patient's Guide to Talking With Your
Doctor by L.R. Brusky and others.
- 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
- Take notes.
Keep a journal of questions, answers, and comments about the
- 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.