So many doctors – how do I know which to choose?Who does the diagnosis? Who does surgery? Do I need an oncologist or an endocrinologist?
The initial steps in identifying and diagnosing thyroid cancer are often confusing and you may be referred for several tests done by different practitioners.
Because thyroid cancer usually does not have any symptoms or changes in thyroid hormone levels, it is often discovered “incidentally” when you are being screened for something else — a sore neck or shoulder for example.
Your primary care provider (PCP) may notice a bump or nodule in your neck during a regular physical examination.
Is it something?
Your PCP may send you directly to an imaging center for a neck ultrasound or may first refer you to an endocrinologist to confirm her suspicions. The endocrinologist may perform an ultrasound of your neck in their office or may send you to an imaging center for a higher resolution ultrasound.
A thorough neck ultrasound done in an imaging center will look at not only the thyroid but will “map” the lymph nodes in the neck (cervical lymph nodes). This mapping serves two purposes – a guide for the surgeon if there are any suspicious lymph nodes which need to be removed and as a “baseline” for future comparison. Suspicius lymph nodes are evaluated using a system called TI-RADS. (see notes)
The majority of thyroid nodules are benign – not cancerous – and can simply be watched over time unless they grow large enough to cause problems with swallowing or breathing or are a cosmetic concern.
If the ultraosund imaging indicates something suspicious the next step is a “fine needle aspiration” biopsy (FNA). After numbing the skin, a tiny needle is inserted into the nodule to retrieve some cells for examination. The FNA may be done by the endocrinologist, a surgeon or an interventioal radiologist using ultrasound to guide the procedure.
When the FNA shows nodule cells or lymph nodes suspicious for cancer you will be referred for further evaluation and treatment.
The long standing treatment for confirmed thyroid cancer has been total thyroidectomy (TT) followed by radioactive iodine ablation (RAI). More recently, if the suspect nodule is very small and contained, and there is no evidence of spread outside the thyroid itself, there is a trend toward “active surveillance” to monitor for any growth or changes. Because of the slow growing nature of thyroid cancer these might not need additional treatment.
If the results of the FNA are “indeterminate”, you can request genomic testing by one of the gene sequencing tests currently available. In addition to Affirma and ThyroSeq, newer versions and tests are being developed.
Once thyroid cancer is confirmed – or considered highly suspicious – you may be presented with several choices.
- Active Surveillance – if your nodule is very small and totally contained withing the thyroid, monitoring with regular ultrasounds may be a reasonable choice. Some may never need further treatment.
- Partial or Hemi Thyroidectomy – if a nodule is contained on only one side, then only that lobe is removed.
- Total Thyroidectomy – if cancer is confirmed or highly suspicious for the entire thyroid
- with sentinel nodes – removal of both lobes of the thyroid and the closest lymph nodes
- with central compartment dissection – removal of both lobes and surrounding tissue and lymph nodes, with a goal of “clean” margins if any “extrathyroidal extension” noted
- with extensive dissection – if ultrasound mapping indicates additional lymph node involvement
Surgical Pros and Cons
Partial or Hemi Thyroidectomy
When considering a partial or hemi-thyroidectomy, it is hoped the remaining lobe can take over the task of providing thyroid hormone. It may but it’s common to require additional thyroid hormone replacement therapy.
Thyroglobulin, a protein produced by thyroid tissue, can not be used as a marker to monitor for recurrence.
If deciding on a partial or semi-thyroidectomy, you should discuss options if additional spread is noticed during surgery. Do you prefer for the surgeon to proceed with a complete TT or would you prefer to wait and return for a second, completion surgery if needed.
If it’s determined that you will have a total thyroidectomy, you should be aware that this will require life long thyroid hormone replacement therapy.
A skilled surgeon will use pre-surgery neck mapping to form a surgical plan and will be able to recognize the need to extend the surgical field once she can visualize the area.
You should feel comfortable asking the surgeon how she avoids risk to the parathyroid glands and the laryngeal nerves – two common risk factors of thyroid surgery. If initial investigation shows extensive spread, a second opinion consult with a major endocrine surgery center is warrented.
How Do I Find the Right Surgeon
The more complex your expected surgery, the more important it is to find an experienced surgeon.
Thyroid cancer, for the most part, is slow growing – so there isn’t the urgency to rush into surgery as with some other cancers. If you are not entirely comfortable or feel your questions have not been fully answered you have time to seek a second opinion or consult with a different doctor.
A qualified surgeon may have one of several titles. S/he may be an MD or DO. Their specialty, title or department may be ENT (ear, nose, throat) Surgery, Endocrine Surgery, General Surgery, Head and Neck Surgery or Oncology Surgery. Any of these may have been fellowship trained at one of the leading thyroid cancer specialty centers and their specialty may be thyroid and endocrine or neck surgery. You can review their biographies that their hospital provides online.
The “right” surgeon for you is a combination of knowledge, skill, experience and empathy – and your comfort level with them. Your confidence can have an influence on your overall outcome.
Cancer Center or Local Hospital
At an NIH designated Comprehensive Cancer Center you will often be offered support and continuity of care among the several providers who will be involved in your diagnosis and treatment. This is especially important if your thyroid cancer is extensive or one of the rarer forms such as medullary or anaplastic and you may be teamed with an oncologist for advanced treatments.
If your thyroid cancer is limited, a surgeon in your local community may be qualified to provide your care. Make sure you go armed with a list of questions – while this is everyday stuff for the surgeon and other providers, you should feel they are in touch with how major this is for you. If you feel like a “case” rather than a person you might want to look further. Admittedly there are some excellent surgeons who don’t have great “bedside manner” but the good ones will have staff who can more than make up for this (often a nurse practitioner or PA).
What Comes Next
Your surgeon (or endocrinologist if you’ve already extablished with one) should order thyroid replacement hormone for you to begin following surgery. Many will also order or advise on a calcium supplement – the parathyroid glands, which control calcium, may not function well for a few weeks even when not damaged.
Your discharge instructions should include who to contact for any problems, how to care for the incision and any drains if present and pain control.
Usually you’ll follow up with the surgeon in a few weeeks to review your pathology report and any questions you may have. Care will then generally be transferred to an endocrinologist for long term follow up, medication adjustments and determining if RAI is needed.
RAI (radioactive iodine ablation) is an entirely seperate topic and will depend on the extent of your thyroid cancer and the results of your pathology report. Your endocrinologist should discuss options with you, including Thyrogen injections to avoid having to withhold meds and becoming “hypo” for RAI.
Long Term Thyroid Replacement Hormone Therapy
This is also another distinct topic. There are many options available though some physicians may be reluctant to discuss or work with them all. Some patients choose to have an endocrinologist follow up for long term thyroid cancer monitoring, including yearly ultrasound and thyroglobulin testing, while working with their PCP to coordinate thyroid replacement meds and testing.
There are two components to thyroid replacement following thyroid cancer surgery – keeping TSH low or suppressed to lower the chance of recurrence, and monitoring levels of actual thyroid hormone to avoid symptoms of over or under medication. The second aspect, which defines our Quality of Life, is often overlooked in pursut of the TSH goal and preventing recurrence. It’s important that we become educated about thyroid hormones so we may achieve and maintain our best “new normal”.
Next-Generation Molecular Tests for Thyroid Nodules: Which to Use
NIH Designated Comprehensive Cancer Centers
Thyroid Cancer Survivors Association