Death of a Thyroid: my diagnosis and treatment for thyroid cancer

By Karen Smyers

In September of 1999, I was diagnosed with papillary carcinoma—thyroid cancer.  I want to write up my story so that others can maybe learn from the details and also be reassured that this diagnosis does not mean the end of your athletic dreams.

I was grateful that within 24 hours of my diagnosis I was able to connect with a role model:  A Canadian rower, Emma Robinson, who had been treated for the same thing the previous year and had gone on to set a world record 5 months later.  It gave me the hope and confidence I needed that I would come through my treatment as well. Maybe my story can do the same for others.

IF you want to know what I learned without taking valuable time out of your day to read the gory details, here is the summary:

  • Arm yourself with knowledge
  • Tackle one thing at a time, but do it with gusto
  • Stay positive—find the silver lining of your situation
  • Find something you are passionate about to motivate you through the tough times, and
  • Keep your perspective

DIAGNOSIS

I went to see my doctor in September of 1999 for bronchitis.  I was training for the Hawaiian Ironman in October and wanted to get healthy fast so I could finish my final block of hard training.  I mentioned as a side note that the front of my throat looked full to me—I didn’t have the V-shaped “hollow” that one should have.  (As a matter of fact, I always craved a long, thin, elegant neck to no avail!).  My primary care doctor thought I better get an ultrasound on my thyroid as a precaution because it did appear to be enlarged.  I went ahead and got that done in the next few days just to keep him happy.   I wasn’t feeling any symptoms of over or under-active thyroid so couldn’t imagine anything would be wrong.  As a matter of fact, at that time I had little knowledge of what the butterfly-shaped organ in my neck even did.

The ultrasound showed several nodules on one side of the thyroid.  The radiation technician actually told me in an offhand way that it meant I probably had cancer.  (Thanks for the excellent bedside manner!) This was a shock to say the least. It happened to be coming after a string of other mishaps that had kept me from competing at the Ironman the previous two years.  I had won the event in 1995 and finished 3rd in 1996; then I slashed my hamstring in a freak run-in with a storm window in 1997.  I used the extended downtime as efficiently as possible (with some help from my husband Michael) and had my first child, daughter Jenna, in May of 1998.  As I was attempting a comeback that summer, I was hit by an 18-wheeler while cycling near my home.  The resulting fall knocked me out until the 1999 season.  Now, as I was poised for the biggest race of the year, I was told I probably have cancer?  Gosh darn it! (Real sentiment has been cleaned up to maintain a “G” rating.)

A QUICK DIVERSION

We spoke to my doctor who said we couldn’t be sure of anything until we got a biopsy.  He assured me that it is a very slow-growing cancer so if I wanted to wait until after Hawaii for the biopsy it would not change my prognosis.  Or I could do it sooner if I wanted to know right away.  After some discussion, my husband and I decided to wait until after the race (which at this point was only four weeks away) so I could focus on one thing at a time (divide and conquer!).  I managed to put the whole cancer worry in the back of my mind until after the race.  I had a great return to Hawaii—I finished 2nd to Lori Bowden who had to pass me on the run and broke the marathon course record to do it.  The result had me hoping the whole thing was a mistake–how could I feel that good and have cancer?

Another triathlon goal loomed large in front of me at this time:  triathlon was being included in the 2000 Olympics for the first time!  This was the most exciting thing that had ever happened in our sport.  I had been hoping for this since 1992 when I was in the midst of a streak of 6 National Pro Titles and 2 World Championship wins.  Our sport finally got the nod and though I was going to be 39-years-old and showing some battle scars, I still felt I had a great shot at making the team.  But to qualify for the Olympic Trials races, I needed to have a good World Ranking. The points had been accumulating since 1997—I had my work cut out for me since I had missed the first two seasons for the hamstring mishap, pregnancy, and the truck incident. We scheduled the biopsy for early December, which gave me the opportunity to do one more race for the season, a draft-legal race in Mexico, to boost my ranking.

My bad luck was able to follow me below the border somehow and I was in a freak accident during the bike segment when a fellow competitor’s pedal came out of her crank unexpectedly while I was right behind her and we were both standing to climb a hill.  She went down with no warning; I toppled over her and broke my collarbone.  Gosh DANG it! (Still a G-rating but it is getting harder to maintain!)

I took the red-eye home in time to get my biopsy the next day.  Luckily, I was able to go through with it after they checked that my blood would still clot despite the Advil I was popping for the collarbone pain.

THE TREATMENT

The biopsy results showed that I did indeed have papillary carcinoma.  Frankly, this didn’t surprise me at this point given the trend in my luck.   I was referred to a top endocrinologist at Mass General Hospital, Dr. Gil Daniels, who recommended I have a total thyroidectomy because the chances were high that it would spread to the other half eventually.  This way I could avoid a second surgery (in theory).  I would have to take a replacement hormone the rest of my life since I would no longer have a thyroid to produce it.  I had a quick scary thought that if the thyroid hormone was on the banned list of the World Anti-Doping Association, I would have to quit racing!  I was relieved to find that it was not banned.  My luck was turning!

I agreed with Dr. Daniel’s recommendation and pushed to get under the knife as quickly as possible since I was currently looking at 6 weeks of down time due to the broken bone.  (I was well versed in combining rehabs from the successful maternity leave/hamstring surgery double).  I placed a “Do Not Disturb” sign on my healing left collarbone and underwent the 5-hr surgery on December 18, 1999 by Dr. Gaz at MGH, who did an artful job of minimizing the telltale neck scar.  In an ominous comment, he did mention in my post-op visit that I had a lot of “weird-looking stuff” in there and that he couldn’t get to it all.  I was too busy vomiting from my hefty dose of anesthesia to question him more about that comment.

The next step was to be treated with a dose of Radioactive Iodine.  This is usually a one-time dose that does an excellent job of “mopping up” all the smaller cancerous thryoid cells that might have been missed by the surgery or that had migrated to lymph nodes.  The reason papillary carcinoma is usually not life-threatening is the efficacy of this RAI treatment.  The thyroid is the only tissue in the body that absorbs iodine.  By first starving the body of iodine by going on a special low-iodine diet, any remaining thyroid cells suck up the RAI and the radiation destroys them.

Although it is a one-time treatment, it can knock the body for a loop for a couple of reasons.  First, one must go hypothyroid for 2 weeks (to purposely deplete the body of the thyroid hormone) in order to ensure a good uptake of the iodine.  Going hypo- is one of the worst parts of treatment because you become tired, lethargic, gain weight, and can suffer from debilitating cramps.  The best way I can describe it is always feeling like you really need a strong cup of coffee to wake up—but never getting it (pure torture as any coffee lover can attest!).   The low-iodine diet can also cramp the style—among the things you have to avoid are dairy products, seafood, restaurants for the most part, foods with added salt (though adding your own non-iodized version is OK), and god forbid, chocolate.   My salvation was that beer was still OK.

The second reason the RAI treatment takes a toll is that even though the thyroid is the only tissue to absorb the radiation, the rest of your body is still exposed to it while it passes through the body.  The digestive system in particular can become “stunned” and not function as well for weeks afterward among other side effects.

ANOTHER DIVERSION

For these reasons, I discussed the risks of waiting to do my RAI treatment until after the Olympic Trials with Dr. Daniels.  The two Trials races were in April and June, which would mean delaying for an extra three months (typically you wait two months after surgery anyway).  Because of the slow-growth of this particular cancer, he told me that though it was unconventional,  he didn’t believe it would be too risky to wait.  So as soon as the collarbone and neck scar had healed by mid-January, I threw myself into training with the ultimate in carrots enticing me—making the U.S. Olympic Team.  I had a small issue of a frozen shoulder to contend with after the collarbone healed but eventually got the arm doing some semblance of a swimming stroke again.

I was put on a dose of 150 mcg of Levoxyl (levothyroxine) daily for the rest of my life.  I quickly got in the habit of taking it every morning before I got out of bed.  My energy level and metabolism were remarkably good from the get-go and my worries that I may feel “different” trying to train and compete while on an artificial hormone replacement soon disappeared.  I must not be too sensitive to it because my doctor eventually raised my dose to 175 mcg in order to keep my TSH adequately suppressed, and I never noticed a difference.

To fast forward a few months:  I did not make the Olympic team though I gave it the best shot I could.  My swim never got back to the level it needed to and that is crucial in the draft-legal style of racing.  There were glimmers of my former glory in that in the first Trials race at the World Cup in Sydney, Australia I had the 5th fastest run split of all the women and the fastest of the Americans.  I tied for the 2nd fastest run split at the second Trials race in Dallas.  But without the swim to deliver me to the right bike pack, it was too little, too late.  All the same, I had a healthy perspective on the outcome (due to being a cancer-surviving mom pushing 40 I guess!)

The Olympic Trials proved to be the perfect vehicle to deliver me through the cancer ordeal.  I did not dwell at all about the fact that I had cancer–I was so excited about and focused on getting back in shape for the Olympic Trials that I really didn’t have time to sulk or be scared about it.  I feel fortunate that I had the opportunity to chase that dream at precisely the time I needed it (though ironically not the time that would best allow me to achieve it).  What does Mick Jagger say?  “You can’t always get what you want, but if you try sometime, you just might find…you get what you need.”  So true.

A SETBACK

So now that the Olympic quest was over, it was time to mop up those cancer cells.  I scheduled the RAI treatment for July 6th.  I started my hypo phase by tapering off my thyroid medicine and went on the low-iodine diet (goodbye cheese, Ice cream and chocolate chip cookies!).  The day before the scheduled RAI, I had to go in for a “tracer dose” of RAI.  This would allow the doctor to see how much thyroid tissue I had left which would in turn would help determine the dose to give me.  When I arrived the next day to check in, the scan revealed I had a huge absorption rate of the radiation:  27% when they expected less than 1%.  The doctor did an ultrasound revealing that I had two large lymph nodes and two smaller ones that were too big for the radiation to take care of–I would need a second surgery after all.  The RAI treatment would have to wait.

Unfortunately it could not be scheduled until August.  This development had me nervous and unsettled.  I had thought that most of the cancerous tissue had been removed in surgery and now discover that there was a significant amount that had been hanging out while I delayed.  I hoped it was not a mistake to wait. I had never meant to take a risk by delaying my treatment and did not want to be perceived as having done so (though some media had decided that fabricated angle made a better story).  I took my health very seriously and would never risk it for a sport, especially with a one-year-old daughter relying on me to be around a while.

But when I didn’t make the Olympic team, I had immediately found another goal—I planned to go back to Hawaii for the Ironman in October.  If I had surgery in late August and the RAI treatment afterward, it would seriously impact my preparation for the race. I knew the cancer treatment came first, but I also knew that it would help me if I continued to have goals to get me through it.  I decided to do my best to train for it despite the treatment and see how I felt as race day drew nearer.

THE MUMPS STUMPS

I was allowed to go back on my thyroid meds right away since the surgery was too far away to keep up the hypo phase.  To my great relief, the surgeon was able to move up my scheduled surgery to July 21st!   I decided to squeeze in an Olympic-distance race the weekend before in Cleveland (with no objection from the doctor).  Racing is always the best therapy for me I figured and it would help me pass the time until the surgery.  I finished 3rd and though I didn’t feel great, I was happy I had done it.  I spent the night in Cleveland and when I woke up the next day, I noticed a sore lump in my neck under my left ear.  I talked to my husband who told me to call Dr. Daniels who didn’t seem to have an explanation.  But I was due in the next day for pre-admission testing for the surgery so he figured he would see me then.  As I waited for my plane home, I got more and more worried as the lump seemed to grow and get sorer.  It didn’t help that the plane kept getting delayed so I spent the whole day waiting to fly out, while missing my husband and daughter.  I confess, it was one of the few times I broke down in tears during my ordeal—I was scared of the unknown.

The next day the swelling was pronounced enough that I thought it was obvious to anyone that looked at me.  Remarkably, the people at the registration desk at the hospital didn’t notice it so I mentioned right away that I needed to have the lump on my neck checked out.  But there was a routine to follow for check-in with which no one seemed to want to interfere.   By the time a doctor finally saw me and I mentioned the swollen lump, I had walked around half the hospital.  The doctor felt it and I saw a startled look in his eyes.  He left the room and said he would be right back.  He came back with another doctor who felt my neck and nodded to the first one.  The first one produced a breathing mask, told me to put it on, and then told me they were escorting me out the back door of the hospital because they thought I had the mumps!  What the…?

I explained to them about the high absorption of radiation from the scan and my triathlon race just 10 days later—didn’t they think there was a connection?  They only wanted me out of that hospital in case I had an infectious disease.  The surgery was postponed and Dr. Daniels recommended I go see an Ear, Nose and Throat Doctor.  I spent the day waiting to see him and doing tests.  I called my Mom to confirm I had been vaccinated as a child.  He finally sent me home with inconclusive diagnosis but told me to stay out of the public for a few days in case it was the mumps.  He gave me an antibiotic and told me to massage the swollen area.

The next two days the swelling moved up to my cheek and I felt achy and tired.  I missed four days of training (good thing I wasn’t on the Olympic Team!).  The doctor was unable to confirm or dismiss a mumps diagnosis.    The ENT eventually had me get a chest X-ray—I can’t remember what they were looking for to be honest.  The swelling finally dissipated gradually over the next few days.

I had the surgery re-scheduled for August 14th.  In the meantime, I was able to get in some longer training in the hopes that Hawaii was still in the cards.  My heart rate was about 10 beats higher than normal during these next few weeks and I had several instances of being very shaky and bonk-y after easy workouts.  I do not know what would have caused this I was back on my regular thyroid hormone at this time.  My period was also delayed 10 days—I am usually as predictable as the tides so this was unusual.   My best guess is that it was a side effect from the high absorption of the tracer dose.

I had the scheduled neck dissection on August 14th in a 5-hr surgery.  Dr. Gaz took out 5 lymph nodes and a chain of lymph nodes from the left side that were all cancerous;  the right side still appeared clean.  Thankfully the anesthesiologist adjusted my dose downward after the sickness I experienced after the first surgery.  I felt much better upon awakening, except for a terribly stiff neck.  The pain was not at the surgical site, it was in the cervical spine.  The next few days, I took extra-strength Tylenol primarily to relieve the pain from the stiff neck, not from the surgery.

HOT MAMA

I had 17 days between the surgery and the RAI treatment.  I was able to walk for exercise each day for the first week and used it as a good opportunity to take Jenna for walks in the jogger.   My stiff neck was still quite a problem—I began seeing my favorite PT, Dan Dyrek, to see if he could help relieve the pain.

At this point I had to go off my thyroid hormone again to start the hypothyroid phase in preparation for my upcoming RAI treatment.  The exercise helped me stave off the lethargy that sets in when you are hypothyroid.  Often the first ten minutes of my workout I would feel like I was half asleep but by the end of the workout I would feel invigorated.  This feeling usually could last the rest of the day—exercise proved to be a natural stimulant if I could just get the willpower to get started.

The second week post-surgery, I got on the elliptical trainer and indoor bike several times  and managed to fit in a few short, gentle swims (so as not to tug on the incision site), and finally a short run.

The RAI treatment I was to receive was going to require me to stay overnight in a lead-lined room at MGH.  They would let me leave once my radiation levels had fallen below a safe limit to be out in public.  Even so, the recommendation is that I not sit close to a child or pregnant woman for more than 5 minutes for several days after I got out.  I also had strict guidelines to follow about toilet-flushing, handwashing, laundry, and even the dishes I used because my bodily fluids (saliva, urine, sweat) would still be slightly radioactive.  I have to admit that it was slightly concerning that I was dangerous to be around for more than 5 minutes—what was it doing to ME who was being exposed constantly for several straight days?

Michael and I decided that he would take Jenna to visit my parents in Connecticut for a few days because I thought it would be excruciating for both of us to see each another and be unable to hug or cuddle or even have her sit next to me while I read to her.  So, on August 31, I said goodbye to Jenna and Michael and drove myself to MGH to check in that afternoon while he drove off with our blissfully unaware 18-month old in the opposite direction.

The room I was to stay in was plastic-coated and lead-lined.  Nurses would only be able to come in the room for a few minutes so they would not be exposed to the radiation.  I was allowed to bring in books and my computer I was relieved to learn.  But most everything else I touched was to be disposable as it would be contaminated.  Even the TV clicker was covered in plastic!

Soon Dr. Daniels brought in a lead flask with what looked like a big poison symbol on it (that is what I remember, but it was probably “Danger Radiation” sign).  He took out my radioactive “cocktail” and I said a quick prayer even though I am not particularly religious (can’t hurt to cover my bases!)  and gulped it down.  It tasted like raspberry.  I drank water constantly the rest of the day as directed to try to flush the unabsorbed radiation from my system as quickly as possible.  I sucked on lollipops because the advice I had read was to keep the saliva gland working so that it keeps flushing.  I felt OK that night except for being slightly nauseous.

I awoke from a pretty good night’s sleep with my left perotid gland sore and swollen like a golf ball—the exact spot that had swelled up after the Cleveland race.  I immediately went back to the lollipops and also got some ice to put on it and did constant massage to keep it flushing. This occurrence solidified in my mind that the previous swollen neck was not the mumps but a reaction to the tracer dose.  The front of my neck also swelled up some and the stiff neck started to ache again.  Ibuprofin and ice helped.  I was tested for radiation several times throughout the day but my level was too high to be let out.  I hunkered down for another night in my isolated room.

I kept up the lollipops and the massage and ice on my neck and it succeeded in keeping the sore perotid from getting too bad.  I noticed that the inside of my nose was red and sore—it felt like the lining had been singed.  This was powerful stuff!

At 9 am on September 1, my levels were low enough that I could go home.  It was a nice present for my 39th birthday.  I was able to start back up on my Levoxyl and supplemented with Cytomel until the long-term hormone could build up in my system.  I went for a run that day and felt like I was running in quicksand for some reason.  My stiff neck gave me a few zingers, too.  But I felt a little better a once I was done.  I imagined that I was sweating out some more radiation and that was a good thing (as long as I did my laundry as directed!).

I slept in the guest room for a few days and Michael finally brought Jenna back after a week away.  I went for a full body scan, which determined that the cancer had not spread.  (Phew.)

LIFE AFTER (THYROID) DEATH

I attempted to do some training the next month but it became apparent that I just couldn’t recover from workouts.  I was getting slower and slower and feeling worse and worse.  I decided not to race in Hawaii and backed off on the training to try to let the body rebuild on its own time.  My amateur assessment of what was going on was that my stomach lining was damaged and was not absorbing nutrients well.  I had giardia several years before and had the same rundown feeling when I was getting over it.  I also had another incident recur—after eating a steak, my stomach had gone into a spasm for a couple of days—it was like the red meat was too hard for the stomach to digest in its fragile state.

I reset my sights on the 2001 season and spent extra time with Jenna and Michael and took advantage of the reduced training time to finish my taxes and play other sports like tennis for fun.  Within a couple of months, I was feeling much better and got back to a full training schedule.

As a nice confirmation that my post-cancer body was as happy as my pre-cancer body, I won my 7th Pro Nationals in August of 2001.  (It helped that the swim was with the current!) I also went on to finish 5th in the 2001 Hawaiian Ironman at the age of 40.

I have periodic check-ups and so far have always had a clean bill of health.  My endocrinologist (I switched to Dr. William Burtis in Concord for my ongoing care once the RAI treatment was complete) checks that my thyroglobulin levels are undetectable (which means that the thyroid is not producing any), my free T4 is slightly elevated, which will keep my TSH (Thyroid Stimulating Hormone) low. (This is called suppression therapy.)

I did a scan one year after the treatment using Thyrogen, a drug that prevents you from having to go hypo to get good uptake from any remaining thyroid tissue.  That is a welcome change in method as many thyroid cancer survivors dread the annual week-long hypo phase.  My scan results were good—no sign of growing thyroid tissue.

IF AT FIRST YOU DON’T SUCCEED…

One issue that cropped up post-treatment:  my husband and I wanted to have another child.  The recommendation was to wait 6 months to a year after the RAI treatment before trying.  We decided to be conservative and waited the full year.  We started trying in the January of 2002.  It took nine months before I finally got pregnant, but I miscarried just a few weeks later.  We tried again and I miscarried after a few weeks again.  Given my age, I went to visit a Fertility clinic to see if there might be a problem.  They analyzed my risk factors and uncovered that my suppression therapy called for keeping my TSH low.  Apparently, low TSH is a risk factor for miscarriage.  So is running according to them.  (I am skeptical—if running caused miscarriages, there would be no need for abortion!).

Anyway, I decided to reduce all my risk factors.  So the next time I got pregnant, I stopped running until after my 1st trimester and Dr. Burtis agreed to reduce my levoxyl to 150 mcg to allow my TSH to rise a bit.  We don’t know if my changed medication made the difference or not, but this time the bun in the oven continued to grow and our son Casey was born in January of 2004.

This seems like a good time to wrap up this novella.  I hope these details might help some of you avoid some side effects and give you the confidence that you can get through this or whatever other hurdles you may be facing.

Karen

Footnote: I have been in contact with dozens of athletes that have written me about their diagnosis and treatment.  I have learned that I am quite fortunate that I had no lingering side effects from the surgery.   I was also lucky to find a dose of levoxyl immediately that I felt great on.  Others have not been so lucky—many complained that they are tired all the time and don’t have the same energy level they had before treatment and want to know if this is permanent. Knowing these are usually very motivated athletes who want to get off the couch and exercising, I was concerned for them and pushed them to tell their doctor the dose was not right despite what the blood work says.  Athletes know their bodies better than most so trust your instincts!

I eventually heard about combo therapy—taking both T3 and T4 in pill form.  Your body converts T4 to T3 as it is needed so the common wisdom is that T4 is sufficient and best because a pill form of T3 causes a sudden spike in your levels because of its short half-life.  Most people taking T3 need to take it twice per day to spread the dose out some—taking it in 3 or 4 doses is even better but is not practicable for many people.  I advise people that are struggling to feel normal on just T4 to look into combo therapy as a possibility.  Everybody is different and what works for the majority may not work for you.  Anecdotally, the combo therapy has worked for many of the people with whom I have corresponded.

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42 Responses to Death of a Thyroid: my diagnosis and treatment for thyroid cancer

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  21. Catherine Nichols Pogorzelski says:

    I was just diagnosed as having Thyroid cancer and happened upon your blog posts. Let me ask, in connection with your parotid gland swelling at the time of the RAI, did you have any residual parotid gland effects POST RAI, ie, any dry mouth, dry eyes, teeth problems? How are you doin grigh tnow? I Had RAI in 2005, which was supposed t effectively ‘kill” my thyroid, I’ve been on Compunded Thyroid medication ever since. Having neck issues with swallowing, I went to a major medical center for FNA, wehre teh cancer was found on one side only, but the doctor wants to remove the thyroid in its’ entirety. (I may also have elongated styloids, aka Eagles’ syndrome) and they have a great skull based surgery center tehre. I have diagnosed myself and have been right about everything I have had so far…Continued success in your endevours and please let me know about your parotid gland as I am curious ( I test negative for Sjogren’s syndrome as about 40% of patients do, but I am diagnose nonetheless, from dry eye to dry mouth, to loss of all teeth to pancreatitis) When it rains, I seem to be right in the middle of the stream, without umbrella nor paddle!

    • Lenora says:

      Hello. You mentioned in a blog that as a result of RAI, you now suffer from dry mouth & eyes & that you have lost all your teeth. That must have been really awful. I myself am in isolation, having had the radio iodine treatment a couple days ago. My neck hurts like crazy & is surprisingly swollen. No one said anything to me about this treatment adversely affecting my teeth. How does this come about? I would love to hear from you….this really scares me. Wishing you well. Thank you in advance for your time. Lenora

      • Catherine Nichols Pogorzelski says:

        Let me clarify, the RAI did NOTcause the “Dry mouth” I lost the teeth due to “suspected Sjogren’s syndrome” I test negative (first tests done in mid 90′s because of ongoing health issues, blamed initially on “Fibromyalgia” a wastebasket diagnosis! IMO) ) (serum/blood and parotid gland biopsy) yet based upon all signs and symptoms, for example: dry mouth, dry eyes, salivary stones forming under my tongue, many prior cavities (@ age 13, I had 52 cavities in 26 teeth) my mouth makes no real true “saliva” just water now) and the icing” on the cake, pancreatitis, dropping to 92 lbs without “dieting” If your neck hurts and is swollen, this should stop shortly; if not get checked by an endocrinologist that you TRUST! I had the RAI done in 2005 and NOW have FNA diagnosed Thyroid Cancer, I am now trying to schedule surgical removal of thyroid gland, along with brain surgery (the arteries at the base/occipital area of neck are twisted up within nerves, this was caused by most likely by my thyroid issue, so over the years, calcification of the styloid process was the result, this is called “Eagle’s syndrome,” that even docs at places like Johns Hopkins, have a hard time diagnosing. They refuse patients anymore there for this, disgusts me that no one can get really good care and we are forced to scour the NET! I am self dagnosed but the ENT agrees that my imaging shows they are elongated, until they are removed and “treated properly” will we know what is in the bone, i.e. any Gadolinium I have high amounts of Gadolinium in me, Magnevist is the name-brand, from MRI contrast, done for the undiugnosed Lyme disease (Lyme is what made me sick to begin with, bitten in 1986 and what could have been treated efficiently and effectively many years ago, with inexpensive antibiotics, is now costing me dearly, my insurance too! over $18,000 in the past 3 months alone! Once I added up some Explanations of Benefits and it was almost $1/4 Million and untold physcial hardship. I will hold thso eresposible for my health, accountable in the long run! Don;t be “scared” of anything, just make sure oyu do the research BEFORE you allow docs to do anything, get a consensus of opinions before oyu allow anything into your body. NIEO (Nothing In Everything OUT) Meaning stick nothing into veins, but take out blood, urine, hair, nails even a dermal biopsy, to hepl diagnose what a problem is. BUT I trusted the medical community and now I have toxic heavy meatla poisoing that a dr at NYU, DR Lewis Nelson, has told me, “you need to come to grips wiuth what has happened to you and you will NEVER prove that it’s from GADOLINIUM” That is the same as being RAPED, pointing to the rapist in the corner of the room and teh doctors UNWILLING to do a rape kit, I KNOW hat is harming me, yet the doctors are REFUSING to believe what they are seeing in my body/symptoms, ie: Systemic sclerosis/fibrosis of bowel etc., Bayer & GE KNOW these are poisons and continue to PUSH use of this toxic heavy metal POISON into the veins of unsuspecting MILLIONS of patients, until we all get as up in arms, as we OUGHT to be, why do you think there is this increase in “Fibromyalgia?” it is really FIBOSIS in thsoe having had MRI contrast and GE & BAYER are accountable! Hope you are well!

  22. Heather says:

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  24. Susan says:

    Thank you for sharing your story. Have nodule and enlarged lymph nodes. I am curious about the comment that was made about the weird looking stuff that Dr Gaz made at your post-op appointment. Has that ever been explained or a biopsy to determine what the weird stuff was? I too do not have a hollow on my right side~ I first commented on this in 2007… I can feel lumpy ish masses on right side that cannot grab/pinch on left side. You guessed it…. nodule on thyroid on right side and enlarged lymph nodes on right side as well. Your story is inspiring…a true heart and will of a champion… Minus a thyroid….

    • karen/michael michael says:

      I think the weird stuff Dr. Gaz was referring to was just more lymph nodes that were affected. But he had been working on me for 6 hrs so I think he hoped the rest of it was small enough to be mopped up by the RAI. Maybe if I had done the RAI immediately it would have been? I do wonder–but I will never know.

  25. Janet says:

    Holy crap, you are inspiring! I was just told that my thyroid biopsy was “suspicious” for papillary cancer, and it’s a huge relief to read your story. You are a really strong woman. Thank you for sharing all this.

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  28. whitney says:

    This means a lot to me. I am a 24 year old female who was diagnosed with papillary thyroid cancer 4 months after having my daughter on Jan 5 2012, but come to find out I had the cancer since 2009. I had went in for surgery to have my thyroid removed back on 6/7/2012 I had went to 2 different endocrinologists because I wanted to make sure I was making the right decision on doing the radio active iodine. 1 suggested I do it and the other one from Mayo clinic in Rochester suggested I don’t because it was only 7mm. So I decided not to because I know mayo is very good I have had brain surgery with them before. Well Just a couple weeks ago I just wasn’t feeling myself and I woke up with a lump in my throat which scares me because that is the same way I had found out about the other cancer I had. So I had went in to my endocrinologist and told him everything, and he had said oh I wouldn’t be too worried its probably just scar tissue. So I had just suggested him I wanted to do an ultrasound because I know something just isn’t right. Well I got the results back from the ultrasound and this is what it said…… “A 24-year-old female with history of total thyroidectomy in June 2012 for thyroid cancer. New lump palpated by patient. Technique: Ultrasound of the neck. Comparison: None. Findings: There is intermediate echogenicity tissue to the right of the trachea appearing to be in the thyroid bed. This measures 12 x 6 x 4 mm. In the mid neck there is a 3 mm cystic structure which corresponds with the palpable lump reported by the patient. So now I am just waiting to go back in to my next appointment with my endocrinologist to do another ultrasound. Hoping for the Best! :)

  29. Sarah says:

    Thank you for sharing your story. Shortly after having my son last year I was diagnosed with a thyroid issue. After six months it has turned out to be an abnormal growth on my thyroid and my biopsy just came back “abnormal”…..The MD”s are pushing me to surgery. I, too, am scared about my energy level post surgery on Synthroid ( I do triathalons, too but NOT NEARLY your level of course). But your story is encouraging ! Plus, I want to have another baby one day. Thanks for the inspiration and the level headed responses…. Best wishes, S

  30. monique says:

    You are all so inspiring! Thank you all for commenting on this blog. It has made me feel like I’m not alone and whatever my results are, I will fight and survive! All the best. I wish everyone a long and healthy life! God bless

  31. chrissy says:

    I just had a complete Thyroidectomy on Wednesday Oct 10th, I too am waiting for my results to find out if It was cancer or not ? I meet with my surgeon this coming Friday to go over all of the results , although I am a bit nervous , I find peace in knowing that my whole thyroid is gone , Anyway I am writing to give courage and hope to all those who are waiting for surgery , and to say I feel great, much better then I would have thought, I am an avid exerciser that works out 6 days a week, running , biking, and boot camp, so to me the thought of not exercising was the part I was and still am having the hardest part with ,
    although my neck is stiff and a little sore I did get out yesterday and walk 3 miles and today I walked 7 , trying to not to much too fast, getting out and walking makes me feel as though I am doing something . I know it will be a little while before i am back to my normal routine but i am ok with it :)

    • Marie r says:

      Chrissy I am thinking about you. Mine comes out next month. How are you feeling? How many days does it take for us to get pathology results after surgery?
      Marie

  32. CATHY says:

    KAREN I JUST READ YOUR STORY AND HAD A FEW QUESTIONS BUT FIRST WANT TO THANK YOU FOR SHARING IT. I AM 40 YEARS OLD AND MAY 14 2012 HAD A TOTAL THYROID REMOVAL THEY FOUND papillary carcinoma SAME THING YOU HAD. MY DOCTOR HAS ME ON 112 OF SYNTHROID. SHE SAID NO NEED TO WORRY ABOUT ANYTHING. THEY DID THE BLOOD WORK ON THE TSH AND ONE THAT SHOWS ID THE CANCER CELLS ARE BACK. I FORGOT THAT NAME IS .02 AND THE TSH IS REALLY. THE DOCTOR THAT DID THE SURGERY SAID HE FELT LIKE AN ULTRASOUND SHOULD BE DONE. SHE SAID IT DOESN’T HAVE TO BE INTILL 6 MONTHS AFTER THE SURGERY. MY THING IS WHY WAIT THEY NEVER CHECKED MY LYPNODES. I AM SCARED THAT SHE IS NOT REALLY KEEPING AN EYE ON THIS. MY MOTHER DIED OF BREAST CANCER SO THIS HITS HOME. DO YOU KNOW WHY THERE’S A WAIT? I HAVE ALOT OF OTHER ISSUES. HAD A FULL HYSTRECTOMY, GALL BLADDER OUT AND APPENDIX THE PAST 10 YEARS THEY WERE ALL BAD PARTS. MY ANA IS POSTIVE AND TPO IS GOES BETWEEN 400 AND 700. I GUESS IF I WAS HEALTHY I WOULD FEEL BETTER BUT I HAVE HAD SO MANY ISSUES. THEY FOUND THE CANCER IN THE THYROID INSIDENTIALLY I HAVE HASMOTOSTHEY WERE REMOVING IT DUE TO THE BAD SYPMTOMS AND FOUND THE LEFT TO BE COMPLETELY HARD AND DEAD THE RIGHT WAS STILL SOFT BUT HAD TWO SPOTS IN THE SLICE WHERE THEY FOUND IT. I KNOW MY SPELLING IS REALLY BAD PLEASE DONT POST THIS JUST WANTED TO SEE WHAT YOU THOUGHT.

  33. Dottie Almeida says:

    Hi Karen – thank you for sharing your story. I have a scheduled surgery date with Dr Gaz in October however I am wondering if I shouldn’t move it up some. Just don’t want to open a “can of worms” before my vacation mid-September; not sure that is the best decision so any feedback would be appreciated. I have had two ultra sounds but due to my anxiety and my heart rate dropping pretty low, I have not had a follow up biopsy. My first biopsy of only two nodules came back benign. My Endocrinologist says that with two suspicious lymph nodes and multiple nodules, I am a candidate for a full thyroid removal. I did meet with Dr Gaz and I am confident in his ability however, I am very concerned about my anxiety and the nausea post surgery. Thinking that these questions will be answered when I go in for Pre Admission Testing. It is nice to hear from someone that has gone through the surgery. Glad to hear you are doing well. I write to wish you good luck with your training and future Olmypics!!!

  34. chantal says:

    i’m so glad to hear that your thyroid cancer is gone. i had it 3 1/2 years ago, did my rai 1 1/2 ago and now after doing my follow ups my level for thyroglobulin is at 17 and should be zero since i had total thyroid removed. i had a small tumor growing and it did grown on the outside of thyroid but did not travel anywhere else. i’m a little upset to hear about these results as i really don’t want to do rai again :( I wished that the first time would have done the job and wondering why it didn’t. god bless and take care :)

  35. mario says:

    Hi,
    >
    >I saw your site and drop by an email. Hope its okay.
    >
    > I was diagnose having a 2.2 cm papillary carcinoma on right side of my thyroid gland lobe and with 1 possible lymp node affected. I requested to my surgeon to just do partial thyroidectomy / labectomy since the left side is clean, but my surgeon insist that I should do total thyroidectomy as this the normal practice and to avoid recurrence. I’m confused as what do I need to do. I’m willing to monitor the other lobe if thats the right thing to do. I’m just scared of the after effect of total thyroidectomy.. being thyroidless, considering this is an important gland of the body and also it doesnt mean that you choose TT there will be no recurrence.
    >
    > Sometimes it is much ok to ask a person who experience this rather than asking a dr who just base all of his answers on studies and not on personal experience.
    >
    > Your advice/help will be much of great help.
    >
    > Thanks,

    • Jackie says:

      Mario,
      I read your post, and just had to respond! I’m guessing by now you have made your decision. But here’s my short story. I had a tumor on my right lobe, and even in surgery, no one thought it was cancer. But it came back Stage 2. So the process was to do a second surgery to remove the other side just to prevent spread. But surprise! Even tho the left lobe looked normal, and showed NOTHING in the CT scan and US, the left lobe also had a 2.2 cm tumor! SO, I am Stage 2, just did RAI yesterday, and hoping all the little Cancer Critters are dead dead dead! My personal experience with this is I would rather be without a thyroid, and without cancer, than with it! I will pursue whatever I have to as far as supplements to be healthy. It could be worse! But the cancer needs to go away before it spreads even farther. My Dr and the Nurse also told me yesterday that we do this, because Thyroid tissue has a very nasty habit of regenerating itself. So my advice? Knock it dead!!
      Best wishes, and hang in there!!!
      Jackie

  36. betty says:

    Can you tell me after thyroid biopsy how long it takes for results? And if its cancer is the doctor notified right away? I had mine done a week ago last thursday and its now sunday.

    • Marisa says:

      Hi I am in the same boat as you. Had thyroid biopsy 10 days ago and still haven’t heard from my doctor about my results.

      Marisa

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