Medullary Thyroid Cancer Diary
February 2001 – January 2003

 
Acknowledgements and Thanks
 
Internal medicine, surgery, endocrinology and radiology specialists at Kaiser Permanente (Reston, Virginia USA), Johns Hopkins University Hospital (Baltimore, Maryland) and Fairfax Hospital (Fairfax, Virginia) developed and agreed upon my course of treatment.  I possibly had the best treatment that could be obtained.  I especially thank my family and friends for their love and encouragement.


Discovery.  One Fine Day...
 
One pleasant, sunny mid-winter Sunday afternoon I happened to read a newspaper aloud to my wife, who was seated across the table.  As she watched me read, she (a physician) saw a tiny lump on my neck.  She then felt the “lump” (I couldn’t tell it was there), and thought it most probably to be a harmless goiter.  Nevertheless, she insisted that a biopsy and pathology investigation be done; she did not appear to be outwardly worried, but we non-physicians will never know what they are really thinking and feeling.


Diagnosis
 
As soon as possible, I underwent a fine needle biopsy of the thyroid.  Basically, a very slender needle is poked into the thyroid gland to remove a few cells for examination under a microscope.  It stung a bit, but really wasn’t that bad (and I psychologically hate needles).  It was amusing to see the assisting medical technologist get ready to bolt me down as the pathologist went in with the little needle.
 
A few days later, the bad news was in.  I learned that I had a very rare form of thyroid cancer, and not a harmless goiter after all.  I was 49 years old at that time, with no troubles in the world, and in seemingly perfect health.
 
There are four forms of thyroid cancer.  Two are comparatively simple and curable; two are much more ominous (and incurable)-- medullary thyroid cancer and anaplastic thyroid cancer.  The former is not invariably fatal; the latter is truly unfortunate.  I had the former.
 
I soon embarked on a fast-paced journey…with implications to my two daughters, younger brother and younger sister.
 
Medullary thyroid cancer grows very slowly, and so may not be detected until it is far advanced.  It also comes in two forms: sporadic (random occurrence) and hereditary (inherited within families).  The latter implies that certain relatives (brothers, sisters and children) must be tested immediately for medullary thyroid cancer; if positive, they must have their thyroids removed.  In my case, chromosomal blood studies (ordered by my endocrinologist) showed that I had the sporadic form, which meant that only I (and not my children or siblings) was affected.

Next, Computed Axial Tomography (CAT) scans were ordered to find the cancer sites in my neck.  In addition, a Positron Emission Tomography ¹⁸F scan was done to establish whether the cancer had spread to other parts of my body; fortunately, it had not.  These scans provide fundamental information to the surgeon who operates on the patient.

 
Surgery
 
March 21^st, 2001 – Thyroid surgery is very delicate and has risks.  After prefatory consultation with a highly respected surgeon, I had a complete thyroidectomy and radical right neck dissection (to remove lymph node involvement).  This was a major surgical procedure, requiring intubation and total anesthesia; it took about 7.5 hours.  I recovered from the surgery very quickly, experienced no significant pain, and returned to my home about 1.5 days after the surgery (as noted above, my wife is a physician, which may have been a factor in allowing me home so soon).  Of course, without a thyroid, I began taking a synthetic hormone (levothroid, later levoxyl) to replace the essential hormone thyroxine (a combination of hormones T₃ and T₄, which can be converted to T₃) that is normally produced by the thyroid gland.  I spent several weeks resting at home, with no significant problems.


Radiation Therapy
 
The utility of radiation in treating medullary thyroid cancer is not well understood, and so there was some discussion among the surgical, endocrinology, internal medicine and radiology specialists who followed my case.  Among the issues were:  Should radiation be used at all? (consensus: Yes); When should radiation be commenced? (consensus: About 6 weeks after the surgery); Should radiation be applied to both sides of my neck? (consensus: Both sides).
 
Gamma radiation is thought to disrupt the cell division of cancer cells, and thus to mitigate the increase of very small numbers of cancer cells  that would invariably remain (and thus increase) even after the most skillful surgery.  Of course, radiation also damages normal cells, and so radiation must be very carefully applied to the appropriate areas of the neck, using special combinations of intersecting gamma ray beams.
 
The radiation therapy took place between May 7^th, 2001 (about 6 weeks after my surgery) and June 22, 2001 at Fairfax Hospital in Northern Virginia.
 
Here is a summary of my experience with 34 daily radiation treatments to the neck.  These occurred over a 7 week period, with Monday through Friday treatments.

• 1^st week -- Few effects were noticed.  I continued to work full-time, except for 1.5 hours per day to go for treatment.

• 2^nd week – I noticed fatigue, reddening or light "sunburn" to the shoulders and neck.  I experienced loss of taste and appetite.

• 3^rd week – I developed a markedly reduced ability to swallow or tolerate any foods that required chewing.  I mostly lived on a liquid diet of milkshakes and commercial dietary supplements.

• 4^th & 5^th weeks -- I experienced intractable hiccups and coughing fits.  My voice began to fail.  Fatigue began setting in.

• End of 5^th week – I experienced extreme fatigue, and I began taking half-days at work.  I was unable to swallow even small pills, and needed to dissolve all pills before taking them.

• 6^th week – I took total leave from work; my voice was essentially gone.  I had severe burns to the neck and shoulders.  I experienced severe choking, with coughing seizures / fits.  I began to dread going to daily radiation treatments.

• 7^th week – I suffered from significant exhaustion, and needed to sleep almost constantly.  The coughing fits continued; I began to seriously dread choking and coughing fits.  Sleep was often marked by strange dreams and (I am told) rambling whispers.

• Final week – The radiation treatments conclude at end of the week (June 22^nd, 2001).  I recovered at home for the next two weeks.   My body weight was down by about 8%, to about 139 pounds.  I was physically tired, but mentally well.

Suggestions Regarding Radiation
 
Here are some things that may make radiation therapy more bearable:

• Use "Magic Mouthwash", which is a thick emulsion of lidocaine, etc. that will help control throat pain.  This must be prescribed by a physician.

• Stock up on "Ensure", an expensive (but worth it) high protein dietary supplement that comes in several flavors; it can be found in 8 ounce cans in grocery or drug stores.  I liked the vanilla and the butter pecan, chilled in the refrigerator.  It tastes OK, soothes the throat, and really did satisfy hunger.

• Get a good blender and prepare fresh "rocket fuel" milkshakes... lots of cream, milk, malted milk, sugar and blended fruit.  Such nutritious milkshakes help a lot, can be taken to work in a thermos, or even to lunch with friends.

• Watch your favorite funny movies or comedies at home.  Keep your spirits up.  It very much helps to maintain a sense of humor and personal peace.

• Sleep, Sleep, Sleep... your family and friends shouldn't worry; you simply will need to SLEEP.

• If intractable hiccups occur, let your internist know immediately, since various medicines can be prescribed to calm this awful condition.  The sort of hiccups I refer to are frighteningly severe.

Other Observations About Radiation

• You may feel truly awful for weeks after the radiation treatments stop.

• Let your family and children help or do things for you, so they will be less afraid.

• You will probably recover slowly.

• Was the radiation hell on earth?  Yes.  Was it necessary?  Yes.

Recovery

• July 6^th, 2001 – About two weeks after my last radiation dose, I returned to work (on a Friday).  I was able to function well, but was very tired by the end of the day.

• July 18^th, 2001 – I traveled to Santa Fe for a business meeting.  I still experienced choking on foods, but was able to function productively.  Most foods tasted bad.  My voice was very low and gravely.  Probably only my associates could tell I had been through this ordeal.

• August 2001 – I noted improvements to my voice and ability to taste foods.  I continued to experience tightness in the throat, along with hoarseness, with occasional gagging on liquids or foods.  I was able to enjoy a family beach vacation in late August.

• January 2002 -- Most taste sensation had returned.  My voice was lower pitched, but recovering.  I still had occasional throat mucous or tightness.

• January 2003 – At this time I had complete recovery of my voice; my sense of food tastes had completely recovered.  My body weight was exactly right, at about 150 lbs; my physical endurance was excellent; I still had occasional light throat mucous.  The only lasting effect was basically positive... my morning shave became extremely easy-- beard growth at about 1/3 of that prior to the radiation.  Of course, this is Bad News if you like beards.

Epilogue – November 2006
 
 
My calcitonin and CEA (Carcino Embryonic Antigen) blood levels are checked twice per year; prognosis for those with medullary thryroid cancer appears to be strongly correlated with calcitonin doubling time.   My blood level of TSH (Thyroid-Stimulating Hormone) also is monitored, to be sure that my dose of levoxyl is correct.  I continue to be seen twice a year by my endocrinologist; an ultrasound scan on my neck is done once per year.
 
I live life fully, personally and professionally.  My family life is better than ever (wife & two daughters, ages 18 and 10); I fully indulge my hobbies and interests (piano playing, art/antique collecting, investing, poetry, exercise and genealogy); and continue with a demanding career (unless told, colleagues can’t guess I had this problem).
 
Best Wishes & Luck to those who read this.

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Useful Links

American Thyroid Association - Thyroid Clinical Trials