Two more years--"I am still here!"

Time flies.  It's been another two years since I last updated this blog.  During the last two years I have talked to many individuals who were going through their first experiences with Hurthle cell cancer.  I am glad that readers are finding this blog informative and helpful.  Best wishes to Linda Mc Mahon who just went through surgery at MD Anderson--with good news--non-cancerous nodules, after an initial indication of possible Hurthle cell cancer.

During the past two years, I have had no problems at all, other than fear that the cancer may come back, plus a little problem of getting some new life insurance.   My 5th anniversary of the surgery removing my thyroid is coming up this December. In 2007, I did not think I would make it this far in life.  My two children at home with me are now age 7 (Allie) and age 9 (Maddie).  Maddie has become a red belt (just a couple belts away from black) in TaeKwonDo and Allie has her "camo" belt, a couple of years behind Maddie.  It's good that I have been here to see this.  I find that as they progress in life, I am not so worried about what would happen if I were not here.  Of course, I want to be here when they marry and when they have children, but it is comforting to see them age and mature, and realize they are learning their independence so that they won't always need me.  Unless you have gone through a life-death experience, you probably don't think about this.

By the way---if you don't have enough life insurance, get it before you get ill. (rocket science observation!)  And, don't just get the policy that has a level 10 year premium.  Go for 20 or 25 years.  My premiums went up 10x in year 11 (this year) but I have no option. The insurance companies won't even consider a new policy until sometime next year (after 5 years with no treatment).  If I had paid a little more for years 1-10 (with a longer term policy), I would be saving thousands of dollars a year, right now.

Healthwise, I had a thyroglobulin blood test in May of this year.  The result-was no detectable thyroglobulin--which is the way it should be (it is only produced by thyroid cells),  If it were detected, it would mean that somewhere in my body, some thyroid cells were floating around, or stuck in a lung, bone or my brain--growing because of the cancer. That would be bad because it means that some cancer likely survived and would eventually grow and cause problems in the organ or location where it calls home. This is the problem with cancer.  Cancer is the unrestricted growth of cells--when cells lose their ability to stop dividing and multiplying.  Normally, when one cell touches another, it turns off the mechanism to divide.  Cancer cells lose that ability.  If those cells are in an important spot, and they get in the way of other functions--that's when it causes problems.

No thyroglobulin and no nodules in my throat through an ultrasound is good news.  So, my outlook is pretty good.  It's been 5 years since I found I had cancer (plus about 5 years when I had it and it was not diagnosed by the brilliant MDs who missed it).   I truly believe I will be here for at least another 5.   If I can keep up the 5-year stints--I may make it to 100 (most of my relative lived to 95-105--and never had cancer.  My bad luck of the draw!).

On a personal note--I turned 53 in July (it is now October). I remember growing up thinking my friends parents (in their 50's) were ancient!   My brain feels 25, but when I look in the mirror, its shocking.  "Who the hell are you?!?!!!" goes through my head.  It's this old guy staring back at me.  (I feel younger away from the mirror.  We should do away with mirrors and we would be happier.)   At 53, you want to make some changes--otherwise, life gets boring.  So, I am trying to think of some changes and have been studying life in Costa Rica and Panama.  It may be worth a try--for a year or two to see how it goes.  I own my own company, which will do fine with me away, as long as I have a phone and the Internet (and an airport to get back once a month).  I will update the blog with my progress in this endeavor.  Maybe my next post will be from Panama or Costa Rica.

Two years later

I have received a lot of emails asking if I am still alive and how I am doing. And, why I have not updated by blog for two years.

So, here is the scoop:

1. First, I am sorry I did not respond to everyone. I have a busy complex life (I plan to do a new blog on this soon).

2. Yes, I am alive.

3. I have visited Dr. Wotton twice in the last two years. Each year I visit him, his assistant uses ultrasound to look around in my neck to see if there is any growth of what would be remaining cancer cells in the tiny bits of thyroid tissue that might remain. Plus, a blood test is done to check my level of Tg. This is thyroglobulin, a protein produced by thyroid cells. Since my thyroid was removed and I had a couple of treatments of radiation, we don't want to find thyroid cells in body. This might mean that there are thyroid cells that are cancerous, stuck somewhere else in my body--like my heart, brain, neck or lung. Well, after two years, so far so good. No evidence of Tg or and no evidence of any growth in my neck.

4. HOWEVER--I have a visit coming up in a couple of weeks. This one worries me somewhat. Why? Because I frequently get hoarse while talking. Plus, I find it difficult to swallow sometimes. I have to point my chin in the air sometimes while swallowing to make the swallow feel "smooth." At other times, when I don't do this, my muscles in my neck feel like they are stressed or having trouble swallowing. It is uncomfortable.

5. Taste: My taste buds never came back. Most foods taste very weak. I can tell sweet versus sour and I can distinguish different foods, but it is not the same as before. Things just don't taste like they used to.

6. More concerns: A study at Ohio State's cancer center indicates that with low levels of Tg, 80% of patients have a recurrence of cancer within three to five years. For those patients with very low or undetectable levels of Tg, 2-5% of patients have a recurrence in the same time period. Overall, 20% of patients will have a recurrence of cancer. Dr. Wooton says because of the size of my tumor (stage 4, about the size of my hand without the fingers), I am likely to have a recurrence.

Here are the actual stats on the research:

A. Tg levels over 2.0, 80% recurrence.
B. Tg levels below .5, 2% recurrence

Overblown Fear of Radiation

Everyone is scared of me. They all feel that should avoid me due to radiation exposure. I think this is overblown. Kim took Ali and Maddie and left the state, thinking they were at risk. I am not a hurricane!

The different sources say to stay from 3 to 10 feet from people. Some say it is OK to hug. Some say it is OK to shake hands. Some say to go back to work the next day. Some say avoid young children for days. Some say to isolate yourself in a separate room. Some say it is OK to sit at a dinner table with the family. All say to avoid sleeping next to someone for 5-10 days.

My family worries about me being in the same room. They worry about me touching a door knob.

Here is my feeling:

I think the risk to others is very, very minimal. Why?

1. My body is full of radioactive iodine. It is flooding every cell for days. It will be in my thyroid tissue for months.
2. Historical reviews of patients treated with one to three therapeutic doses of radioactive iodine show no increase in any type of cancer for the patient.
3. Studies of the radiation levels in homes where the patients does not isolate himself showed levels of radiation that are below all acceptable limits.

So, if I, carrying around a body full of radiation have no historical risk for increased cancer, why all the concern over me being in the same room with others? I think it is all just precautionary--common sense, but the risk is very low to anyone. I agree--common sense says don't let my kids sit in my lap for an hour. Don't have sex and don't sleep with someone. However, I think the recommendations of separation and distances and to not do this for X days, and to not do that for Y days are total guesses made without scientific merit.

My two cents....

I have the mumps!

The photo shows my jawline. This is not what I look like normally. Meet Fred Flintstone.

I woke up this morning with unusual pain in my jaw. Salivary glands. Oh no. It is one of the possible side effects of the radiation.

They are swollen, giant. They hurt.

I looked in the mirror. It is not me. It is a person with mumps. A Fred Flintsone looking jaw.

I immediately starting sucking on my lemon drops. My mom bought me 400 of them. I took Tylenol to help with the pain.

Hopefully, the damage to my salivary glands is no permanent--sometimes it is. I am sure the swelling will go down, but my salivary glands might not work, which would make me have a dry mouth forever, requiring me to have liquids with me at all time.

Time will tell.

Radioactive Iodine

I took 150mc of radioactive iodine at about 11:45 this morning. I felt nothing, but know that radiation will be flowing through my body for many days.

The precautions are:

1. Stay away from close contact with adults for 3 days.
2. Sleep in a separate bedroom for 8-11 days.
3. Use a separate bathroom for 7 days.
4. Wash my clothes separately.
5. Flush the toilet 2-3 times.
6. Drink a lot of fluid for 2-3 days to help the iodine circulate.
7. Suck on lemon drops to avoid side effects to the salivary glands, starting tomorrow.
8. Empty my bladder, every two hours. It accumulates the radioactive iodine. Do this 24 hrs per day.
9. Stay on my low iodine diet for 3 days--we want the radioactive iodine to be the iodine absorbed by the cells.
10. Use paper plates and disposable utensils, or wash my dishes separately for 3-4 days.
11. Don't cook for others for 3-4 days.

Decision to take a heavy dose of radioactive iodine

So, no cancer--I can leave, right?

Dr. Halkar and I spent some time reviewing the options. The decision was made to go ahead and take a heavy dose of radioactive iodine, even though there was no evidence of cancer.

Here is why?

1. Kill the remaining thyroid tissue in the neck.

There is always some true thyroid gland left after surgery in the neck. Imagine trimming the fat off a good steak. Unless you cut some of the good steak away, there is always some fat left. With that analogy, Dr. Grist the surgeon, left about 4% of my thyroid in my neck. Anything less than 7% is what is expected. We want to kill the remnant thyroid.

A. It could contain cancer.
B. Once you have had cancer in an organ, there is a greater chance that it will become cancerous again in the future. Get rid of the sucker.
C: My future testing to make sure that cancer does not come back can be misleading if there is thyroid remaining. The tests are designed to detect thyroid cells, and the relatively large mass in the neck would cause problems.

2. All the scans and tests in the world can't detect microscopic cancer.

Imagine a relatively small number 100-200 thyroid cancer cells in my lung. The scan would not pick them up. The radioactive iodine should hopefully eliminate them.

3. The massive dose of radioactive iodine allows a more thorough scan to be done in 10 days. The dose I took for the scan was 4mc. The dose to ablate (kill) the remaining thyroid and any cancer is 150mc. Giant. Glowing. On Fire. I am scheduled for another full body scan on February 4.

If there is no cancer found at that time, it is very unlikely there is any that will cause any trouble.
I will have follow up scans every 3-6 months for the first year and then scans every 6-12 months for the rest of my life.

What if they find cancer at this next scan?

Nothing is done. It take months for the radioactivity to kill all cells. Why? It really does not kill the cells. It makes it so that they can clone or reproduce. Cancer is cancer because it multiplies uncontrollably. The irradiated cancer cells can reproduce and will eventually die on their own.

Why about Hurthle Cells?--they don't absorb radioactive iodine well.

This is correct. However, no other thyroid cells were found anywhere in my body. And, it would be almost impossible for the ONLY cells to have cancer to be the Hurthle Cells. Dr. Halkar believes that we wound find some evidence of some other type of thyroid cells in the body--but we didn't. (So far).

Finally, the reason for the follow up scans (every 6-12 months for live) are just to check for cancer that may have are in my body undetectable. If any is found, we treat those cells--surgery, radiation or any other method that may come in the future.


Where we are: We are about 95% sure that I have a good prognosis. There is a 5% chance the scan on February 4, with the higher radiation level, will find cancer. If it does, I go back in 3-4 months for another scan to see if the radiation did its job. If there is no cancer, I wait about 6 months to have my first follow up scan.

Me, contacting Kim

I was meeting with the doctor and snapped a photo of myself, right after I got the good news.

I forwarded this to Kim. She got the message.

The Big Results

I was using my computer down the hallway, so that I would get an Internet signal. I heard a faint foreign voice--"Schultz. Schultz?". It was Dr. Halkar. He said they had the results.

I quickly closed my computer and went into his office.

Drum role--He said "despite you being high risk, we can't find any cancer anywhere in your body. Not a trace."

I was stunned. I sat in the chair in his office, and sank down. Relief. After all the continuing negative news since October of last year, there was a future. The future was more than the 3-5 year survival rate for high risk patients with Hurthle cell cancer. No tumors in my lungs. No brain tumors. No bone tumors. It was beyond my expectations. I was hoping for something like "we found a few cells, and we can ablate them with radioactive iodine". I was fearing "we found widespread cancer infestation throughout your body". Neither of these. Zero cancer.

It felt good--I am not dying. I will outlive my dogs and see my kids have kids.

Thanks to everyone for all the prayers, gifts, cards, emails, blankets, good thoughts, confidence, support and hope. Thanks to the team of doctors at Emory who did the work. It all worked. I beat the odds. I am in the 30-40% who don't die in 3-5 years. I dodged the bullet.

Radiation Level Detection

This part is technical--so skip it.

I am taken into another room, where they have a probe that is used to measure the base level of radiation in my neck compared to my knee. Presumably the neck, where there still is remnant thyroid, would concentrate more radioactive iodine than m knee. They print a paper strip that shows a line graph of the radiation eminating from my neck and then do the same at my knee. The knee has very little muscle, no glands, and no organs, so it is a good place to just check the base level of radiation.

Both of these levels are compared and then used by the doctor to evaluate the effectiveness of radiation in my body, verifying the validity of the full body scan. If there is no radiation or not enough in my body, you could assume that the scan--if it came up inconclusive, could then be attributed to an insufficient level of radioactive iodine.

She said that Dr. Halkar would visit with me in 15 minutes to give me the results of the scan.

The Actual Scan

They start with my head area. This panel is about 20" x 20". The technician sits behind a glass wall with a remote control. As I sit on my back, the panel is lowered to my head. Lower. And lower. It thankfully stops 1/2 in from the tip of my nose. I wonder, and forgot to ask, if this was an automatic sensor that made it stop, or if it was the technician with a remote. Seriously, with a slip of a button, my nose and head would have been crushed. Not today though.

The technician says "here we go". Nothing happens. No noise. No motion. For 10 minutes it scans my head, neck and upper torso, searching silently for any radioactive iodine. I close my eyes and try to sleep, with no luck. Then, I faintly hear a motor move the panel down toward my waist by 18 inches, overlapping the last scan. That routine continues two more times and then I am done--I thought.

The technician came out. She changed colors. She was white when I met her and now she was black. I guess a change shift while I was there...

She said there were two more 5-minute scans focusing on my neck. Simple.

Done. For real.

Nuclear Medicine--Step 2 Full Body Scan

The Nuclear Medicine Department (NMD) is different than other areas in the hospital. Because it is the area that deals with radiation, it is relegated to the dungeon in the hospital. It is also not the most popular area--it is where those people with cancer end up going. Luckily, it is a small area--with fewer patients than any of the other units in the hospital. Unlike other areas with big open waiting rooms, the NMD has a small, functional, yet spartan waiting area with just a few chairs, and just the essentials. No decorations. No pictures on the wall. The nice thing by the time you sit down, you are called in for your appointment.

I arrived at 7:15AM, sat down for less than 30 seconds and was then on my way to the gamma detection room. This is a large room, about 20 x 20 with what looks like a hybrid MRI-regular X-ray machine. It is neither, however. Instead of generating radiation to pass through your body, it is a machine that detects the radiation that is already in my body in the form. Unlike an MRI--where you head is enclosed for the entire time in a cage--making you feel like you are in a coffin, this one is more open. And, unlike the MRI, it is silent. What a difference! No claustrophobia and no noise.

The photo attached to this post is out of focus--sorry. I forgot my regular camera and had to use my cell phone.

Today's test is a full body scan. Every inch from head to toe.

I lie down on a padded platform. My arms are wrapped by my sides with an 18" wide Velcro strap that circles around my mid-section, holding my arms to my sides, so they don't move. My knees are raised by a contoured, foam pad placed under them. Try keeping your legs still for an hour without this. You can't. It takes the pressure off the joints.

Note: Buy contoured foam pad for bed. It was the most comfortable sleeping position I have ever experienced.

Tomorrow--The Big Day

Dealing with cancer has several big steps.

The first is hearing you have a body part not functioning properly and you have a possibility of cancer.
Prior to that point, you live your life, day-by-day, not obsessively reflecting on the past, and thinking of what may be in store 10, 20 or 30 years in the future. Once you hear you have the possibility of cancer, you start researching the probability of that type of cancer.
Human nature


The next step is learning that you have cancer.
That step is life changing. It makes you take the time to reflect on the past and the future, heavily. You start wondering how long a life you have left.

The next step is preparing for more tests, to see if the cancer has spread.
It it has not spread, you can hope for a normal life expectancy. It is has spread, your prognosis changes. It goes from Good to Fair to Poor, depending on where and how much the cancer has invaded other parts of your body.

Tomorrow is when I have a full body scan to see where the cancer has spread. I am in the high risk group. At 48, I am eight years older than the line where you are in a high or low risk category due to age. I also had a tumor much larger than the 4cm size, which bumps me into the high risk category. I also have a cancer that spreads more readily than other types of thyroid cancer. Finally, the cancer has been sitting in my neck for at least 4 years, giving it the chance to spread. Based on common sense, I have a greater chance of the cancer being more invasive.

This is what today is--waiting. Knowing the possibilities. Preparing.

Preparation includes taking the same laxatives you do for a colonoscopy. This is because the radioactive iodine that I was given on Tuesday concentrates in several spots. First, and foremost in any thyroid cancer cells. Second, it is excreted through the colon, bladder, sweat glands and salivary glands. If my colon is not clean, a false or even confusing result can be seen. The doctors could say "is that cancer, or is your colon just not cleaned out.

My own preparation is basically not eating today and tomorrow. The whole low iodine diet purpose is to make any remaining thyroid cells hungry for iodine. Since iodine is in most food, what better way to be sure that you have low iodine by not eating anything. I am already weak because of the low thyroxine and already not eating--I want to go that extra mile to be sure my body has no new iodine at all.

Note: The laxative works.... It works so well, you lose your appetite.

My appointment is at 7:30AM, so I will be up at 5:00 and on the road at 5:30 to avoid Atlanta traffic.

Early picture of my thryoid enlargement

This picture helps tell the story. This is September 28, 2003. It shows an enlarged thyroid--the swelling is clear on the outside. However, if you compare the thyroid size in this image with the one a year later (an earlier posting in this blog--just scroll down) you can see that it did grow significantly. A key point is that the thyroid must have been enlarging before this image--perhaps a year or two earlier.

This was Madison's birthday.

120 MPH. So what? Give me a ticket officer--I dare you! I am radioactive. Now back off!

Nuclear Medicine Step 1--Tracer Dose of Radioactive Iodine

OK, so here is the first step. I am at Emory. The first room in the Nuclear Medicine unit is where they give out radioactive iodine. Just me and a small lead container sitting on the floor waiting.

In comes the doctor.

The process is pretty simple.

He opens a small container. Think of a powered sugar container--the metal kind with the holes on the top. But, this container is missing the holes.

Out comes a cardboard tube with a lid. He pops it off.

He pours two capsules into a plastic medicine cup. He says "swallow these".

In front of me is a cup containing radiation. I am supposed to swallow it. Who cares about suncreen or not sitting in front of the microwave. Just swallow some radioactive pills. We are such primitive savages. Jump to year 2030--"Steve, you have a type of cancer that is all throughout your body. It was given to you a long time ago because you voluntarily swallowed radiation. We were just too stupid to know back then". I do hope I live that long.

I open my mouth, pour in the two capsules, and swallow.

What did I take?

4 millicuries of radioactive iodine. A millicurie is 1/1000 of a curie. That's all you need to know. We can't see or weigh radiation like we do with medicines. Radiation is something that will create an image on film (x-ray, CT-scan) or, in a more powerful dose, kill the cell (or cause more cancer!). Think of a laser. You can buy one for $10.00 that you can point on the ground for your dogs to chase, or you can spend $30,000,000 and create a vaporizing laser that will knock out a missle in the air. Well, I just took a very small dose of radiation. It is about 1/30 or 1/40th of the dose used for therapy, the effort to treat or kill the cancer. The radioactive iodine that I took is just enough to light me up inside. My starving thyroid cells, looking for iodine, will absorb the iodine. Just enough to be seen with a special scan that will take place on Friday. This will be a whole body scan--about an hour. It will look for thyroid cells that have absorbed the iodine. When the doctor finds the thyroid cells, he will make a determination. I could have no visible cells, some in one area, a mass in one area, a combination, or my body could be infested. Depending on how much is found, this will determine the dosage of radioactive iodine.

[A curie is a unit of radioactivity equal to the amount of a radioactive isotope that decays at the rate of 37,000,000,000 disintegrations per second. For those interested, Emory uses I-131 for both the scan and the therapy. ]

Why is the room the first room in the unit?

Duh, to run out as soon as I take the dose so I don't have to be near anyone else.


What precautions do I take at home?

Sleep alone for a week.
Private bath.
Disposible dishes.
Wash utensils and other dishes alone.
Wash my clothes alone.
Flush the toilet 2-3 times.
Stay away from anyone by several feet when possible.
OK to hug the kids after the tracer dose, but better to stay 3 feet apart.
OK to eat at the table.

All of this for the rest of my life! Just kidding. For me, with you kids. It will be for 1.5 weeks total--including a week after my therapeutic dose.

Where does the radioactive iodine go?

I-131 has a 8 day half-life. This means after 4 days, it is 1/2 gone. After 4 more days, there is 1/4 remaining. After 4 more days, there is 1/8 remaining. I am told that it is OK to be near people after a week--sleeping or touching them, but--hmm, it sounds like it should be longer....I guess at some point, the radiation is minimal. Where does it go? It is excreted in the urine and sweat, in general, but that which is lodged in my thyroid cells, trapped in my body somewhere, does not "go anywhere". It decays--the atoms disentegrate, so that they no longer exist. Nuclear activity going on in my body.

This week

Here are the basics:

1. The doctors need to see if the cancer has spread out of my neck area. They give me a small dose of radioactive iodine tomorrow.
2. They give this a couple of days to circulate in my body.
3. I take laxatives on Wednesday and Thursday to clean out my colon. The colon can absorb some of the iodine, so we want to clean it out to get a clean scan.
4. On Friday, I arrive at 7:30 AM. This is a full body scan--it takes an hour.
5. The thyroid cells in my body will have absorbed the radioactive iodine. The radioactivity is then picked up by the scan.
6. They calculate the dose of radioactive iodine for treatment, versus the scan. The scan is 4 millicuries of iodine. The treatment could be from 30 to 200. If it is a high dose--180+, I will probably stay in the hospital for 2 days. Otherwise, I go home and try to stay away from people for a few days.
7. Getting the radioactive iodine is not by opening a cabinet and pulling out a bottle. It is housed offsite for a lot of hospitals. So, it will be a 3-4 hour wait for the radioactive iodine to be brought in. In two minutes, it is down my throat and out the door. This big dose is designed to be absorbed again by the thyroid cells, still seeking out iodine. But, the radiation is much higher. It is supposed to kill the cells.

Problems:

• Hurthle cells don't absorb iodine too well.
• I could have a "clean" scan--no observed cancer cells, and they could still be there.
• Because Hurthle cells don't absorb iodine too well, they may not die.

I return in two weeks for another scan to see if there is remaining cancer.

At this point, I am not sure if I take another dose of radioactive iodine for the second scan, or if there is enough residual iodine from the first scan to "light me up".
I am also not sure if I am on the low iodine diet for two more weeks (I doubt it).
And, I am not sure if I stay off my thyroid medicine for the two weeks (I doubt it.)

So I question if the second scan is accurate.

Effects of Diet and No Thyroid Hormone

The diet:

Off the diet: I used to sit down, fill up the plate with spaghetti and meatballs, cover it with cheese, and pig out.
On the diet: Take a 1/2 cup of noodles and put it on your plate. It's half a kid's meal at Shoney's.

On the diet: Grab a cupcake off the counter and swallow it whole.
On the diet: Spit it out and rinse out your mouth because you just remembered you are on the diet. ( I do that daily with a bunch of food.)

Off the diet: Go out to lunch or dinner and order.
On the diet: Read the product label and if it has any iodine--like a bowl of Cheerios, you can't eat it.

Off the diet: Cookies and milk at bed.
On the diet: A cucumber for bed.

Off the diet: "My belly is full."
On the diet: "I am getting dizzy. I just had my slice of bread for breakfast"

Off the diet: Variety.
On the diet: Carrot sticks, celery, apples, peaches, pears. It sounds good, but your body wants some protein. Weakness sets in. Couple that with low thyroxine and you have an 85-year old man in my body.

No thyroid hormone:

My thyroid is gone--gone since 12-14.
My Synthroid is gone--gone since 1-3. And, between 12-17 and 1-3, it was 60% of the dose I needed.

I am still much better than I thought I would be. I can still think. I can still type. I can still work. But, ask me to bench press 200, 150, or even 100 lbs or run 1/4 of a mile, and it won't happen. I get winded just cutting up my 6 ounce piece of chicken. Give me some oxygen, quick!

Nuclear Medicine Visit At Emory

Today, I met with Dr. Halkar. He is in Nuclear Medicine at Emory. This is in the basement. Probably because they need lead lined walls. No cell phone and no Internet gets down there--bummer. I take my cell and computer everywhere. Look at all the people sitting there for hours, watching game shows. I take my computer--I can watch my TV from home on my computer (http://www.slingbox.com/), chat with the office or I can do work, or both, or all three, which is my style. You can bury my computer with me, if I don't make it. Just run the extension cord out through the top please.

Anyway, think about when you see a doctor. You see one doctor. You take what he tells you and you do it. I think Dr. Halkar is my 6th doctor involved in my cancer. He is a reality guy, like me. "Steve, I don't know if you will live 2 years or 50. It depends on how bad your cancer is". Other doctors want to tell you the optimistic news, and then hit you if something is not good. Dr. Grist did this. He told my family that it was probably benign and to relax "we got it all". Then the biopsy comes in and it says it is a giant tumor of a rare variety. Bad news.

So, Dr. Halkar was a reality check. I go up and down. One day, I feel inside I am going to live to be 100. Other days, I just know my body is full of cancer, and I will be at MD Anderson next month and taking my around the world cruise this year, waiting for the lights to go out. Dr. Halkar is a scientist, with an MD degree. He is not lacking in bedside manner--in fact he was very kind. At this appointment, he just talked. No tests. Just got to know me and answer my questions. Good guy.

He did say that I was "prime" for the radioactive iodine. Now. Remember, the endocrinologist guessed I was at "27" and needed to be at "30". Well, the blood test from Wednesday (today is Friday) said I was above 50. Ready to suck in that radioactive nuclear bomb. But, what about my diet. It has not been two weeks. Dr. Halkar said it is fine. With my TSH at 50+, it will be fine. Just lay off the iodine for another 1.5 weeks--through the scan, and after the therapeutic dose of iodine. Next appointment is Tuesday to take a tracer dose of radiation.

On My Diet

I am now on the low iodine diet. My last regular meal was supposed to be a pepperoni, mushroom and black olive pizza. I was looking forward to it. Well, no pepperoni--they forgot.

Why the low iodine diet?

1. Iodine is used by thyroid cells to create the hormone thyroxin.
2. My thyroid was removed--but there are probably some remnant thyroid cells, with cancer or without still in my neck. The thyroid doesn't just float there--it is attached to the walls of my neck and to other muscles. The doctor did not know at the time that I had cancer, so he might not have scrapped off every millimeter of thyroid tissue.
3. If the cancer has spread, it would be thyroid cells which have broken off and spread to other parts of my body. Even if it is in my brain or my leg bone, it is thyroid cancer--growing there.
4. The goal is to deplete the body of iodine. This makes any remaining thyroid cells "hungry" for iodine. They are trying to make thyroxine and they need iodine to do so. The thyroid cells are the ONLY cells in the body that use iodine.

So, if you starve your body of iodine, then, when you put radioactive iodine (the poison!) in your body, these remaining thyroid cells will really gobble it up.

What is the low iodine diet?

There is iodine in a lot of food.
It is picked up in the soil by plants growing.
It is used to clean our milk drums and butter making equipment (remember putting iodine on a cut?)--so all dairy products have it.
It is in meats and poultry.
It is in the sea.
It is put in table salt (iodized salt) as a necessary nutrient, just like they put flouride in water.

So, a low iodine diet is cutting back on these foods during the time that you are getting ready for the thyroid scan (read the next post), and for the therapeutic dose to kill the remaining cells.

You can find a good diet http://www.cc.nih.gov/ccc/patient_education/pepubs/lowio.pdf
This is the National Institute for Health's diet. There are others, and they vary slightly, but this one looks reasonable.

For me, it means no more than 6 ounces of meat per day, no more than 1/2 cup cooked pasta, no more than one slice of bread, nothing with eggs, no milk, butter or cheese or any products that contain these things. It means eating a lot of vegetables, and none of that stuff that adds the weight--cookies, ice cream, or snack food. Plus no sea food. The sea if full of iodine, and so are the fish and the sea salt that comes from the sea. Lastly, anything I eat can't have iodized salt. I can eat salt, but not iodized salt. Iodine has nothing to do with salt. Salt has nothing to do with sodium. I can eat salt. I can eat sodium. Under federal law, manufacturers must list the ingredient as "iodized salt" or just "salt". If it is just "salt", it is fine. The rule is--pick a national brand. The smaller guys probably don't read the "federal laws".

How long for the diet?

This question receives different answers from different doctors. How about a month? The longer the better, right? Most sources say two weeks. Two weeks until you receive the scan which tells you how big a dose of radioactive iodine you will receive. The more cancer--the bigger the dose.

What's up with MD Anderson?

I applied a few weeks ago at MD Anderson. They said I would hear back in 3-4 days. Two weeks went by. Three weeks....

They called left me a message to call back, which I did. Still no return phone call, after 4 days.

Here is what I think is going on:

1. I don't have details on how much my cancer has spread.
2. MD Anderson treats late stage cancer patients. Right now, I am stage 2, which means I am above age 40 and have a tumor above 4cm.
3. Until I am stage 3--meaning the cancer has been defined to spread to other parts of the body, I am probably not eligible.

In any event, as I learn more, it makes sense to get the first treatment at Emory. The first treatment at MD Anderson would be the same as it is at Emory--so why spend a week at MD Anderson, when Emory is around the corner in a half day visit?

Visit with the new Endocrinologist

For the first time in a couple of months, I don't feel like my future is an early death. I visited with my new endocrinologist at Emory University Medical Center today. Dr. Srivatsa is a 40-year old, female who is finally someone I can talk to who is on par with my knowledge of cancer, after my research. Before Dr. Srivatsa, I had talked to a cancer researcher, another MD and my surgeon--none who were experts in the Follicular/Hurthle cell cancer that I have. I am very confident that I have spent hundreds of hours reading about the cancer, and whenever I talk to a non-expert, I leave feeling like I am talking to a--well, a non-expert. It is funny--we all expect a "doctor" to know everything about anything--and that is not the case. I could rattle off research studies showing this mortality rate, or this percentage of efficacy with treatment X, or what each of the major medical centers in the country or world is doing, and 99.99% of medical professionals would not have a clue as to what I was talking about.

With Dr. Srivatsa, although she could not quote the dates of studies like I could or the exact date for FDA approval of Thyrogen (I aced her on these!), she was at least familiar with what is going on with Hurthle cell cancer. Now--I have someone I can converse with, and she offered to do that with whenever I wanted to talk.

She said that I went into the cancer treatment backward, which I now realized. I left my original endocrinologist, Dr. Wotten, because his recommended surgeon, could not see me until about right now to do the surgery. I was essentially turned over to a surgeon, with no overall doctor working with me to take the lead.

In any event, here are the conclusions for the day:

1. I am close to reaching the level of TSH to provide radioactive iodine. A blood test was taken and I will know for sure in a day or two. She guesses I am at a level "27" and need to increase it with a few more days to at least "30". The higher the number, the better.
2. The RAI will be late next week or the week following.
3. I will have a scan before and after, looking for cancer in my body.
4. I need to start on the low iodine diet and be on it for a week.
5. She agreed I was on too low a dose of Synthroid--about 40% low (112mcg versus 155). This means I have been hypothryroid since December 15, the day after my surgery.

The confidence she gave me was that it was unclear in her mind how much of my cancer was Hurthle cell and how much was follicular. Follicular is readily ablated by the RAI. If it is a majority of follicular, I would live a regular long term life, with precautions taken by having a scan every 6 or 12 months, and perhaps every 24 months after a few years.

She is also a proponent of using Thyrogen, instead of going off the Synthroid. However, because I am almost already there--with a low TSH level due to the elimination of the Synthroid, she agreed with me that I should continue on the plan with no Synthroid.

I am sorry if this is technical--it is more intended for future cancer victims who will be familiar with the terms.

Overall--a very good day.

Quick Update

This next week:

I have an appointment with a new endocrinologist at Emory on Wednesday. He should do a blood test to tell me how my thyroid hormone reduction is going. It will be almost two weeks without thyroid hormone at the time of my visit. The earliest time to take the radioactive iodine would be the next Friday, so I could be 2/3 the way there.

I also have an appointment with another Emory doctor--the one who administers the radioactive iodine. This is Friday. This is an introductory meeting to prepare me.

So far, I don't feel too bad. I am a little weak and don't have much endurance, but other than that, I feel normal. I was expecting to feel worse. I have a missing gland--the thyroid, and I am producing ZERO thyroxine in my body. Every cell needs thyroxin daily to survive, so I would have thought I would be having more severe side effects by now. I guess I thought I would feel "drugged"--but that is not the case. I wish our organs could have this amount of time when we really did not need them. Imagine being able to live without your heart, lungs, kidney or liver for a few weeks, after an injury, so we could fix or replace them.

One thing bothers me--how do I know another organ in my body is not infested with cancer? My thyroid never hurt. It was just big and visible, and that is how I knew I had a problem. We can't see what is going on in my body. I wonder what shape my kidneys are in, my liver, my lungs. Geez. They could have their own cancer. I would never know. The moral is "take the best care of yourself". I see people eat crap, abuse their bodies with poisons and alcohol, or with the lack of exercise. They do this because they can't see the effect inside of their body. If we wore our liver or heart on the outside, and you saw the effects of what we did to it--people would take better care of themselves.

Study that shows Radioactive Iodine has some effect

I read a new study last night that said that I should not count out radioactive iodine treatment. This is the only study that I have read that says RAI might work against Hurthle cell cancer. It is encouraging. But is is also confusing--since all the major cancer centers say that RAI has little effect. My fingers are crossed.

I have attached the abstract of the study as a link to the left.

Early effects of hypothyroidism

It is now Sunday evening and I am really starting to slow down. It was about 88 hours ago when I last took my thyroxine (Synthroid). It is a little early to feel weak and tired, but I think I have an explanation.

My daily dosage of Synthroid should have been about 150 mcg (micrograms). The dosage should be 2.2 mcg/kg, which is 152 mcg based on my body weight. My thyroid was functioning normally on December 13. On the 14th of the December it was removed. I started on 112 mcg of Synthroid on December 17th. The dosage should have been higher and I discussed this with Dr. Grist, however, it is immaterial since I would be going of the hormone in order to prepare for my radioactive iodine treatment.

Essentially, I have not had a "full dose" of thyroxine since December 13th.

I have also learned that the half-life of thyroxine is about 5-7 days. Since it has been almost 4 days since I had a dose, I am getting close to about a 50% concentration in my blood.

They way "half-life" works is every 5-7 days, the level of thyroxine in my body has dissipated by 50%. So:

• After the first 5-7 days, I am at 1/2 the normal concentration in my blood.
• After another 5-7 days, I am at 1/4 the normal level.
• After the next 5-7 days, I am at 1/8th the normal level.
• After the next 5-7 days, I am at 1/16th the normal level, and so on.

In any event, I feel the effects after 4 days because of the lower-than-normal dose I have had since December 13th, and because I now have stopped oral thyroxin completely.

I can't wait to see what I feel like in a couple of weeks! (Yee ha!)

Evidence of a long term goiter

Below is a picture of me from June 20, 2004 with my daugher Maddie, who was born on September 28, 2003. This photo is 3 and 1/2 years prior to my surgery and the diagnosis for Hurthle Cell Carcinoma. You can see the clear and obvious enlargement in the front of my neck.



1. Obviously it took some time to grow to the size shown.

2. It is very obvious that if Dr. Capo had checked my thyroid even once, he would have felt the enlargement.

3. The cancer has likely been sitting in this spot for years, potentially spreading.

I stopped taking my thryoid hormone today

Today, I stopped taking my thyroid hormone. I take a pill which contains T4 (thyroxine) under the name brand of Synthroid.

This is in prepartion for my radioactive iodine treatment (RAI). I will be tested in about 3-4 weeks to see if my TSH level is high enough. If it is, I will then receive the RAI. If it is not, I will wait a week or two more and then do the blood test again.

It is tough on your body to have your thyroxine stopped. Every cell uses thyroxine every day to function. It controls your body temperature, heart rate, and metabolism. It is especially hard on the elderly who may already have other medical problems, like a heart condition.

Dr. Grist told me I will likely start to feel tired, move slowly, feel cold, and I may put on weight.


Note on generic versus name brand

Dr. Grist told me I should not use a generic, because drugs stores can switch the manufacturers of their generic medicine at any time. His comment was that their might be slight concentration or dosage deviations between manufacturers. Plus, if I ever needed to get a prescription filled at a different pharmacy (like if I were out of town), the manufacturer of the generic throxine at that location, might be different and the formulation/concentration could deviate. If you buy a name brand for the thyroxine hormone, like Synthroid (the brand I use), you are assured you get the same pill/dosage/concentration/formulation, wherever you buy it. I am not sure if this applies to other drugs. I know that with throxine, the dosage is very precise--it is based generally on your weight. Unlike other drugs, that may be avaiable in 3 or 4 dosages, thyroxine has about 15, so precision is important.

I "applied" at MD Anderson

Today, I requested my records be shipped by Emory to MD Anderson. I have set up an account at MD Anderson.

Once the documents are received, a physician will review then in 3 days and, if accepted, I will receive an appointment within about 2 weeks.

The only reason I believe I may not be accepted is if they say there is no reason for me to go there for radioactive iodine treatment, because I can receive that in Atlanta.

With that in mind, I have an appointment set up at Emory on January 18th to consult with the radiologist, the individual that administers the treatment of the iodine. The treatment should be around 2-3-2008, regardless of whether it is at Emory or MD Anderson.

My Post-Op Visit and Review of my pathology report

It has been almost 3 weeks since my surgery. Dr. Grist asked that I come back in after the holidays.

Today, he checked my scar and said it was healing properly. It had a few raised areas--thicknesses, that he said would eventually smooth out.

He asked where I wanted to go for treatment, and discussed visiting with his counterparts at Emory for the Radioactive iodine. I told him I had been doing a lot of research and was considering other centers in the country.

Pathology Report

He then handed my my copy of the final pathology report. I was expecting to see the tumor size about the size that was shown during the ultrasound. Unfortunately, the size was much larger.

The tumor was 6.5 cm x 6 x 3 cm. The key size that is also used in predicting the prognosis is if the tumor is more than 4.0 cm. I had the short straw here. (For those not familiar with the metric system a centimeter is about the width of a dime, so visualize dimes placed end-to-end. )

Also, note that the thyroid itself was bigger than this 9.5 cm x 7.6 cm x 3 cm and that the tumor was within the thyroid.

Something just as relevant--the pathology report shows "vascular invasion". This is not good. Hurthle cells are more likely to travel through the blood stream to distant parts of the body, versus the lymph nodes. Human nature (fear of death) is going to make me assume that if there was vascular invasion, there is a strong chance that some cancer cells have been transported to other parts of the body. This means I am in for a life long fight, hopefully a long one.

The following is the pathology report. If anyone wants to receive an
actual copy, you can email me and I will send you the PDF.

Why the title "My Short Life with Cancer"?

People are concerned about the title I chose for my blog. You need to understand the meaning behind it.

I intend to have a short battle with cancer. It will be a "short part of my life."

The title I created was designed to grab your attention and make you think about the alternative. Cancer can cut a life short. My intent is to have a short time in my life with it.

The things I am doing to make this happen:

1. Eat healthy
2. Exercise intensely.
3. Find time to relax.
4. Sleep as needed.
5. Find and receive the best care.

Finding the best treatment facility

I went to Emory University Hospital for my surgery. I felt then and feel now that I received the best surgery from an excellent surgeon. However, I don't feel that Emory (and most other general hospitals) is the best choice for Hurthle cell cancer.

• 80% of thyroid enlargements (goiters) are not cancer.
• Assume that Emory does 365 thyroidectomies a year--one a day.
• This means only about 70 of these are cancerous.Out of this, only 1-3% (about 1 or 2) would statistically be Hurthle cell cancer.

I don't believe you can be a Hurthle Cell expert facility, treating only one or two patients a year. In fact, from what I have read, only 361 cases of Hurthle cell cancer have been thoroughly researched.

All the evidence in writing that is used to gather the statistics and report the efforts and the mortality, adds up to only 361 studied cases.

The hospitals that are regarded as the best cancer treatment facilities are:

1. MD Anderson Cancer Center
2. Sloan Kettering
3. Johns Hopkins
4. The Mayo Clinic

My question is should I get the radioactive iodine treatment here and use the follow up treatment for the rest of my life at one of the other facilities. If this disease is fatal, does anyone want me to die and then say "he should have gone to one of the better cancer centers?"

I am leaning towards MD Anderson, in Houston, because they are ranked number one, treat 2000 thyroid cancer patients each year, and because the doctors work under a "team' approach. They also are involved in several clinical trials for thyroid cancer treatment. Finally, they have recently done research using radio waves with 100% success on cancer in rabbits. The rabbits had cancer and they deposited a marker that would attach only to the cancer cells. They then used a specific-frequency radio wave that heated up the marker which fried the cancer cells, while leaving healthy cells untouched. This is the kind of creativity and entrepreneurialism that will cure cancer. Count me aboard.

On their website, they say their goal is to eliminate cancer. It sounds plain and simple and I know it is a good "sales pitch" because they are a business, but it works for me.

Negative feelings. My prognosis.

I am not gathering encouraging information when I read. I have heard so many times "so and so had thyroid cancer 30 years ago, and they are fine!". This is most likely papillary cancer, which happens at an early age and is easily cured with radioactive iodine. This is not the outcome for Hurthle cell cancer. RAI is less than 10% effective with Hurthle cells. There is no other treatment that works reliably. It is regarded as incurable--if it has spread. That is a big, unknown "if".

There is no method to be 100% sure if it has spread. The most common method is to look for the presense of thyroglobulin in the bloodstream, a protein produced by thyroid cells. If there is thyroglobulin in your bloods, there are thyroid cells in your body. The problem is, if there is no thyroglubin, it might mean that there just aren't enough thyroid cells in the body to produce enough thyroglobulin to be detected. If these undetected thyroid cells remain in the body, and are malignant, they will eventually grow and spread, and cause additional problems. From the studies done, most Hurthle cell carcinoma that has spread will recur. There is currently no way to stop it.

Right now, I don't know if I have any cancer in my body. It could be that zero cancer cells spread through my body--that 100% were removed from my body. I really won't know for many months, until the RAI treatment is done and the search for stray cancer cells is done after that.

But it scares the hell out of my that their might be cancer that professionals are saying they probably can't stop from growing.

We can spend billions on sending space shuttles and space stations in space, with overwhelmingly valueless results. We can waste billions on other federal and state programs that many, in the end, produce no value, but we can't put more money into research to save millions of lives for illnesses that everyone predicts can be stopped. The US can't build the best cars. We can't build the best electronics. We can't even make the best clothes. What we can do is create medical care and medical cures, but we don't realize this is our biggest and best industry. For me, it is beyond frustrating--it is literally life and death. From what I am reading, there is a good chance I will die.

There are two risk categories for Hurthle cell cancer:

Low risk

1. Below age 45
2. Tumor smaller than 4 cm (about the width of 4 dimes)
3. No distant metastases (no cancer spread outside the thyroid)


High Risk

1. Above 45 (that's me)
2. Tumor above 4cm (that's me)
3. Distant metasteses (unknown at this time)

In the high risk group, the mortality rate of Hurthle cell cancer is 50-65% in 5 years, with the median being 38 months of life. How many months of that 38 have I already lived, if my cancer has spread?

All I can think about is compressing my life into 4-5 years. I have not lived the other 30-40 years that I thought I would live. How can I work and build my business, if I have to be focused on my health all the time? How can I live a 30 year life in 5 years, if I am focused on building a business or my health? I can't concentrate.

Everyone takes for granted that when they get up each morning, they can set goals for the day, the help them make accomplishments for the month, that bring progress for the year, and then for thier life. They plan vacations. They plan to save. They plan for their children to go to college. They plan to see their children get married and to have their own children. They plan to retire. They plan to travel. They plan to die at an old age. When I get up each morning, all I can think about is fighting my illness and not being told that I have 6 months to live. Your whole outlook on life changes. Nothing is long term. It is just survival for the day or month, hopefully for a year or more.

Radioactive iodine and Hurthle Cell Cancer

Oh boy. This is not good news. The more I read, the worse I feel.

Hurthle cell carcinoma from the thyroid does not readily absorb radioactive iodine (RAI). These are reports from the major medical facilities throughout the country.

Comments from the various reports:

• "efficacy of radioactive iodine is in question for Hurthle cell cancer"
• "7 to 10% effective with Hurthle cell cancer"
• "so ineffective with Hurthle cell cancer, that many doctors don't even prescribe radioactive iodine"

This means two things:

1. There is a far greater chance that the Hurthle cells will survive RAI than be destroyed.
2. You can't use radioactive iodine as a marker (to highlight Hurthle cancer cells) so they can be visible with a full body scan.

My outlook and my prognosis has turned worse.


Plus, I am now confused. Different cancer facilities administer the RAI in different ways.

1. Some use thyrogen instead of hormone cessation.
2. Some say to use T3 during the time T4 is phased out.
3. Some say to stop both T3 and T4.
4. Some say to use Lithium to increase the uptake of RAI.
5. Some say to use 3 smaller doses of RAI, versus one big dose.
6. Some say to wait 2 months, and some say to wait 4-6 months before I use RAI.

I see Dr. Grist on January 3. I am gathering notes to talk to him.

Note: My scar is healing well---there were no sutures used--just glue. The scar is not level yet, but it is looking pretty good. (My dad says I can always get cosmetic surgery from John Griffin, a plastic surgeon, who is the doctor who referred me to Dr. Grist in the first place.)

Researching Radioactive Iodine treatment

Thyroid cells are the only cells in the body that absorb or uptake iodine. Iodine is a mineral found in many foods in the US, including in iodized salt.

The thyroid uses the iodine to create the thyroid hormones. With little iodine, the cells cannot produce enough hormone. The pituitary, another gland in the brain, sends a signal to the thyroid to try to make more hormones. In doing so, the thyroid can grow or enlarge in an attempt to make more cells to create more T3 and T4 hormones.

Because the thyroid is the only type cell to uptake iodine, for over 50 years doctors have used radioactive iodine to essentially poison and kill and remaining thyroid cells, whereever they are in your body.

Radioactive iodine treatment is recommended for anyone who has had thyroid cancer with a total thyroidectomy.

The process works as follows:

1. In order for the radioactive iodine treatment to be effective and destroy any remaining thyroid tissue, the levels of TSH (thyroid stimulating hormone), secreted by the pituitary gland must rise to elevated levels.

2. For the levels of TSH to rise, the levels of thyroid hormone must have dropped to very low levels, which makes the pituitary create more TSH in an attempt to have the thyroid create more thyroid hormones.

3. The TSH stimulates the remaining thyroid cells to take up the radioactive iodine. This happens wherever they may be in the body--residual tissue in the neck area that was not removed, to stray cancerous thyroid cells that broke off and have been transported to other parts of the body.

4. Thyroid hormone has a long half life--so it takes many weeks for thyroid hormone levels to drop and TSH levels to rise.

5. Normally it takes from 3-5 weeks for all of this to happen.

6. To avoid prolonged hypothyroidism, some patients will take T3, which must be stopped ~ 14 days prior to the radioactive iodine treatment.

7. The doctor gives the patient a radioactive iodine pill, which is swallowed. The starving thyroid cells ravenously absorb the radioactive iodine, and are killed.

Precautions need to be taken to avoid contact with other individuals for several days, after radioactive iodine treatment. The radioactivity is not harmless. The benefits to the patient far outway the risks, but there is a risk to others who may become in contact with the radiation.

Note: Thyrogen is a synthetic form of TSH that was approved by the FDA
just three days after my surgery on 12/17/07. Thyrogen can be used instead
of stopping the thyroid hormones for several weeks. Going for weeks
without thyroid hormones has many negative side effects, such as being tired,
decreased heart rate, decreased metabolism (increased weight gain), among
others. The use of thyrogen avoids these side effects, because the
thyroid hormones are never stopped. However, in tests, there is a
slightly better success rate in doing reducing thyroid hormones compared to the
use of thyrogen. When dealing with cancer, my opinion is to take
every extra step possible

.

Pathology Results

Everyone had heard good news after the surgery. If there was anyway to describe a "good" tumor, the tumor that came out of me looked benign to the surgeon.

It has been four days since the surgery. The call that we expected was that the pathology report showed no evidence of cancer. This is what we had believed for three weeks. I could look forward, with a future, thinking about long term goals. I was feeling like I dodged a bullet. and just had an enlarged thyroid. f

On the fourth day, Dr. Grist called and said the results from the pathology report did show cancer--Hurthle cell cancer.

He said that I should see him on the 3rd of January to talk about treatment, which would initially be radioactive. He would want to put me in touch with an endocrinologist and a radiologist at Emory to work with me. Merry Christmas.

Back in my room

Dr. Grist said I would need to stay for two nights in the hospital. Because of the size of the tumor, it would take extra time for the fluid to drain from my body.

I did not see what I looked like until the next day, when I looked in the mirror for the first day. I was a Borg! I had a tube coming out of my chest. I had a scar across my neck, about 5 inches across. What happened to bandages. I don't know how many family members and friends saw me like that, but I would have preferred a bandage or sheet over me!

The pain subsided each day, and my I was suprised at the turnout of family who came to visit me. The support greatly helped my recovery.

After surgery

It was a great feeling just waking up in the recovery room. My fears about not waking up, proved to be just fears.

There was a little discomfort in my neck, but the largest pain was running all the way across my chest.

The anesthesiologist and the surgeon, Dr. Grist, talked to me in the recovery room, but because they both had on a mask and hairnet, I could not tell who was who. I was also still under the influence of the anesthesia, so things were a little fuzzy.

They rolled me out of the recovery room and into my own room--I don't remember much about this time.

I still had pains in my chest so they took a chest X-ray and then took my down to have an CT scan of the neck area. The CT scan was painful because the technician was not aware that I had just had surgery. I had to move to the CT table mostly by myself and I had to lay down with my head level, which was very painful.

Surgery Day

I could not sleep because I knew I was going to sleep through the alarm. At 4:00AM, I got out of bed and hopped in the shower to wake me up. I had packed the night before.

Kim and I drove direct to Emory. There is no traffic at 4:30 in the morning. We arrived just before 6:00AM and I entered the E1 surgery suite, which is "SAME DAY" surgery. The waiting room had at least 75 chairs for what should be a very large number of surgeries each day.

I put on my gown and talked to one of the medical assistants. They have lost my blood tests from December 3, so another technician is starting to draw blood again. The anesthesiologist questions her directly, asking why she would draw blood with no time for the results to be obtained, prior to surgery. She ceases her activity, other than a finger prick, for blood typing.

Trying to give me the sedative by injection proved to be a problem. Several attempts were made in each hand, and after about 20 minutes, the technician found a vein in my arm to use. He said I was dehydrated--not having anything to drink for almosts twelve hours.

I remember getting drowsy and being rolled into the OR. I looked up at two three 20" wide round lights above me, and was asked to move to another table. Before I was administered any anesthesia, I was out--fully asleep. I remember having light dreams during surgery.

The Day Before Surgery

Today is Thursday. Tomorrow is the big day. I am really scared about the surgery and I don't really know why.

I guess it is because all the other surgeries I have had in the past 40 years have been outpatient, where I know I go around 8:00AM and I am home that afternoon. Also, I know on this one, they are looking for something serious. It is not just "fix the tendon, and stitch him up". With all of this, I am just nervous to go under the anesthesia. I keep thinking I won't be returning.

I stop eating tonight about 9:00, playing it safe. Kim and I have to get up at 4:00 AM to drive to Emory to be there by 6:00AM. Mom and dad are going too, in their own car. My surgery is scheduled for around 8:30.

I am nervous.

Starting to get angry

I am angry that I am in this situation. I keep questioning why my internist, Dr. James Capo, did not check my thyroid at any one of my visits over the past several years.

• If he had felt it, it could have been removed when it was smaller.
• If it had been removed several years ago, there is a lower chance that it would be cancerous.
• If it is cancer, and it had been sitting there for several years, there is a greater chance that the cancer would spread.

My job is not to remind my physician what to do when I see him. After reading a lot of medical journals, it should be obvious that the thyroid should be checked. Several family members were patients of Dr. Capo. All have decided to no longer use him because he missed checking my thyroid and they question, what else he might miss.

My Thyroid really is starting to bother me

Many people have asked me what symptoms I had from the enlarged thyroid--did it bother me?

Here are the main symptoms:

1. My voice is often rough and sometimes, after talking for awhile, I was unable to keep talking. This has been more and more often, and the thyroid continued to grow.
2. It has become difficult to look down sharply. For example, sitting in a chair to tie my shoes and looking down. The mass of the thyroid just did not allow my neck to bend all the way.
3. Difficulty swallowing and breathing.

I had become used to each of these, and did not recognize that my enlarged thyroid was causing the problem.

MRI results

I did not know what I would really learn from the MRI. I already knew the thyroid was big. The only real question to me is whether the lymph nodes were enlarged. But then, if it were Hurthle cell cancer, you would not expect the lymph nodes to be enlarged, because Hurthle cell cancer normally is spread through blood vessels, and not the lymph nodes.

Dr. Grist called me late in the date. I was at my office. Good news! Everything looked normal. No lymph node invasion. He said 'it fits his expectations that this is a large benign mass.

He said the next step is to just wait for the surgery and get the thyroid out. The surgery was scheduled for 12/14/07/.

The MRI

The MRI was done at Wesley Woods Medical Center, which is a unit of Emory designed for the retiree population. MRIs are apparently in high demand and to squeeze me in, they put me at a retirement home center.

A couple of years ago, I had an MRI on my ankle. It was a breeze because the only thing being scanned was my ankle. The rest of my body remained outside the MRI tube, so I never had a true experience of being contained in the tube.

The technician asked me if I was claustrophobic. I said "no". To the best of my knowledge, my only experience with claustrophobia would be putting myself in a dark closet and shutting the door. It never bothered me, so why would laying in a tube in a room bother me? It never entered my mind.

The technician also asked me to take off my personal items. This was the first time that I had had a full MRI, so I took off my belt, my glasses, my wallet and other items and then I asked "did you mean take off my clothes?". The technician, a women in her early 30's said "no, not that type of personal items. You can leave your clothes on!". This was surprising. I was going to be in an MRI unit with pictures being taken of my neck, and I would have a fully-collared shirt around my neck. I did not have any metal on my body, but I had a zipper. I had always heard you could have no metal items on you. I know realize this is exaggerated. The room had a metal trash can, metal chairs, and other items in it, and none were locked to the ground.

The procedure entailed me laying down on a small conveyor/bed face up, with my head inside of basically a square football-like helmet containing foam, so that my head would not move. The conveyor part would move me back inside the tube. The technician told me to insert ear plugs in my ears because the noise would be loud.

I would have two scans. The first would be 20 minutes, then they would remove me, inject a dye and then do the procedure again. I had just moved into the tube when I realized--"what a dummy--I still have on my watch and my ring". I screamed "Hey guys--I forgot my ring and watch". Within a few seconds, they pulled me out and started me over again.

I thought I would be very calm and would possibly even try to take a nap. Slowly the conveyor started to move back inside the tube. My impression was that they would stop the conveyor when my head was just inside the tube. I was wrong. It keep moving me back. I never really saw how deep the tube was--it felt like I was being inserted at least 20 feet, although I knew this was impossible. Claustrophobia hit. Panic ensued. The tube was just over my eyes. The only thing I could think about was being trapped inside a coffin. Yes, this is what it would feel like. No room to move my hands and arms. My head restrained. The tube was no more than 4 inches from my eyes. I could not look up down or around. I wanted out. Now.

I wanted to scream. My heart start racing. I could tell my blood pressure was soaring. I was gritting me teeth. I wanted to break out, run and say the hell with it. Just skip the MRI. Tell the surgeon to wing-it, like they did before the MRI. Tough life for him. Get over it. I was breathing heavily. All the while, I was wondering what would happen if I did scream or ask for help. I can imagine that they would have to reschedule, call my physician, and have him sedate me for another visit. Worse, they may tell me they have no other appointments and they would have to reschedule my surgery. What could I do? I started thinking--"how do I get my mind off of thinking I am in a coffin?" Do math--that's it. I started adding up the salaries of people in my company. I started to say, "how much more would a 5% raise be". I don't like math, but desperate times require desperate actions. Next, I started thinking of movie stars--who starred in what films? It worked. Slowly. I started to relax somewhat. Believe me, the whole time, I was uncomfortable, and 20 minutes seems like hours when you are literally counting the seconds hoping they clock would wind down. I knew that they would have to inject the dye in me, and that would give me a break to walk around, and I could fully recover.

The noise from the MRI was incredibly loud. Bang bang band. Ching ching. Brap. Brap. Brap. Over and over for 20 minutes. My left earplug was falling out. Nothing I can do about that--my hands are down near my side. If I halt this now, I am sure they have to start over again. Then, I thought--I am swallowing in here. They are taking photos of my thyroid, which moves every time I swallow. Stop swallowing. I did--for a minute of two. But try it for 20 minutes. Your mouth fills up with saliva. It is hard to do. You have to swallow and so did I.

Then, suddenly--quiet. Relief. I started to move out of the tube. A break for the dye!

As soon as I was completely out, the technician said "now, don't move. I will inject you where you are". My relief was short-lived. I did not even get to sit up. Restrained, she injected me, and within 30 seconds I was back on my way in the tube. To do it all over again. More math. More movie stars.

It was finally over. They pulled me out. I gathered my things and they told me the images had been already electronically be sent to the radiologist to review.

In a few days, I should expect a call from Dr. Grist with the results.

Pre-operative treatment

It is about a two hour drive from Jasper to Emory University Hospital, and this is assuming just moderate traffic.

Before surgery, there are standard blood tests that need to be done, and a couple of meetings to make sure the everyone has a clear medical history of my past. Dr. Grist also wanted me to have a chest and neck MRI prior to surgery. The reasons for this were two-fold:

1. To see where the thyroid extended. The ultrasound done by Dr. Wotten showed a tumor about 5.3 x 5 x 3 cm, about the size of a piece of standard sandwich bread, but twice three times as thick. However, ultrasounds aren't very precise--it is just sound bouncing through the skin, giving a rough image. Dr. Wotten had already indicated that my thyroid extended down underneath my collar bone.



2. To take a look at the lymph nodes in the neck, to see if there we any expansion. Dr. Grist explained that normally they nodes are about 2mm in diameter. If the MRI showed lymph nodes greater than this, this could indicate that there might indeed be cancer that has spread to the lymph nodes.

I arrived promptly at 10:45AM for my 9:30AM appointment. (I am normally not that late...) Nevertheless, they took me through the process of registering for the surgery, verifying my surgery, creating arm-bands for my stay, and drawing blood for blood-typing. The last step of the morning was meeting with an anesthetist to discuss how the anesthesia would be administered.

I had about 20 minutes for lunch until the next appointment. Thinking there would be a fast food place around Emory, I got in my car, drove around for 20 minutes, found nothing and went right back to the same parking spot. Next step--the MRI.

Meeting with Dr. Grist

I met with Dr. Grist in his office on Tuesday at Emory University. His card listed his as Associate Professor, Otolaryngology. He had made time for me, after surgery to meet without a formal appointment. He was running late, but with my potential cancer, I would have waited over night.

When Dr. Grist entered, he reminded me of one of the typical college professors that I had at college. He is not what you would expect as the traditional surgeon. He is relaxed, sociable and took the time to draw out on a dry erase board exactly what he felt was happening inside me and how he would remove the thyroid. He was "impressed" with my thyroid, so he took out his camera and took a photo.

Good news! Dr. Grist said there is a good chance that it is NOT cancer. He said "sure you could have Hurthle cells and they often look abnormal." He said that most tumors had a "hard" feeling and mine felt soft. That does make sense to me and gives me some hope. I now recall that Dr. Wotten really never felt my thyroid. Dr. Grist has a couple of decades on Dr. Wotten and is the guy who actually goes in and remove the offending body part, so I am starting to really feel good that this guy may be right! No cancer. It is surprising how quickly my outlook on life can change.

Dr. Grist came with high recommendations. He had the experience that I felt was needed to remove all the thyroid and not damage my vocal cord nerves or the parathyroid glands, common areas of concern for the inexperienced surgeon.

He said we could schedule the surgery for about three weeks later, on December, 14, 2007. He said not to worry about it being cancer--in most cases it is benign.

Unlike Dr. Wotten, he said it was not outpatient surgery. I would at least be in the hospital for the night of the surgery. I asked him about the scar and he said it would be virtually invisible within a few months.

Finding a Surgeon

Atlanta is full of medical facilities, but not many facilities that have a "team" approach. Instead, most doctors within a physician practice and even at hospitals work as separate individuals, not in partnership.

Dr. Wotten referred me to a surgeon at another office to do a total thyroidectomy. The first step was to meet the surgeon and discuss the surgery. One important statement that Dr. Wotten made was "you need to schedule the surgery sooner than later". This make sense. I have cancer growing in my body that can spread at any time, if it has not already.

Suddenly, my thyroid became an alien part of me. Instead of being "my thyroid", it was something separate--"that thing" that I need to get out of me. "Get this thing out of me!" (not humorously) was what I am constantly thinking.

I called the surgeon recommended by Dr. Wotten. He was happy to see me, but his surgery schedule would not allow me to have the surgery until the first or second week in January. Too far off for me. Who wants a blob of life-threatening cancer blossoming in the body for that long. Certainly, not me.

My mom knew a doctor at Emory University Hospital who knew who to call at Emory. The surgeon's name was Dr. William (Bill) Grist. I made an appointment to meet with Dr. Grist for next Tuesday, November 20th. At least now, I had a plan in place. I was hopeful that Dr. Grist's schedule would allow a quick surgery.

Researching Hurthle Cell Cancer

Just a decade ago, if a doctor told you that you had a particular illness, the only place to look would be a library. Today, in just a few minutes, I can retrieve far more information on any topic, than all libraries in the world combined.

I had never heard of Hurthle Cell Carcinoma before, but there are hundreds or maybe thousands of conditions or illnesses that I have never heard of. I sat down on my sofa at home with my notebook computer and started browsing.

Hurthle Cell carcinoma is a type of cancer that effects the follicular cells. It is a more aggressive cancer--more often metastasizing to distant locations of the body.
The main points about Hurthle cell carcinoma:

1. Spreads mainly through the blood vessels instead of lymph nodes.
2. Often found growing in the bones, lungs and nervous system (the spinal cord and brain)
3. Does not respond well to radioactive iodine treatment.
4. Rare--only 1-3% of all thyroid cancers
5. Most medical facilities don't have enough exposure to become an "expert"
6. Often recurs.
7. Someone responsive to external radiation beam treatment.
8. Not very responsive to chemotherapy.

The Real Call--Biopsy Results Thursday, November 15, 2007

I was really feeling good this day. Why? Because if Dr. Wotten had bad news, I would have heard by now. I was sitting by my phone all morning and no call. So, I called back about noon and left a message saying that I have not been called. My confidence was growing that I just had a big fat thyroid that needed to be removed.

I was at my Jasper office about 4:30 in the afternoon. I was the office with my wife, Kim. My cell phone rang. I recognized the number now, so I quickly shut the door and listened. Kim looked at my face, anxiously looking for positive or negative signs.

Dr. Wotten asked how I was doing. He started to talk and I could tell by the tone that it was not good. He said that biopsy results were not conclusive of cancer. However, he said that there were cell abnormalities in some cells called Hurthle cells.

By this time, Kim was waiting for a smile or some acknowledgement that it was benign. I asked Dr. Wotten what he meant by abnormalities. That's when the talk got more serious.

He said that Hurthle Cell Cancer is a variant of Follicular cell cancer and is not normally detected by a Fine Needle Biopsy. He said that he would "bet his money" that I had Stage 2 Hurthle Cell cancer and that I needed to "get that thyroid removed right away". I look at Kim and gave her the thumbs down sign. She sank in her chair.

Dr. Wotten gave me the name of a surgeon to call to schedule surgery. He said that they would need to remove the thyroid completely and they would do more cell analysis after the thyroid was removed to determine if it were truly Hurthle call cancer. However, he said that he was really confident already that it was indeed malignant.

I walked out of my office and it was obvious that everyone else knew what was going on. The company is small, so there are not too many employees, and the walls are thin. People politely look the other way to avoid tears.

False Alarm--Phone call

It had been several days since the biopsy. A normal biopsy takes a day or two at the most. However, Dr. Wotten said he used a single individual for their entire medical practice, and he would take his time, and sometime was behind.

It was Wednesday afternoon at about 6:15. I was sitting around the kitchen table trying to eat a five minute dinner, which is normal when you have two young kids, ages 2 and 4. Never time to chew--just to swallow. I used my cell phone as my main form of communication. As I mentioned, it had been several days since the biopsy, so I really was not expecting a call. Maddie and Allie, as usual, were very noisy at the table. My phone rang and I looked at the number, not recognizing it. I thought it might be a client or prospective client, so I just ignored the call. Later that night, I listened to the voice mail message, and yes--it was Dr. Wotten, saying he had my results. Aaarrgghh!!!! I missed the call. I was pretty mad that I did not take the call earlier. Now, I had to wonder all night, knowing that Dr. Wotten had my results, and that I would not find out until the next morning.

But.... I started thinking--- OK. If it was bad, his assistant would probably have called and asked me to come in to review the results. She could then play dumb about knowing what the results were. If the biopsy results were bad, Dr. Wotten would not have called. He would never have told me on the phone that I had cancer. That's just now how I had seen it done in the movies or on TV. The cancer talk takes place face-to-face. I was beginning to feel relieved.

Fears and thoughts

Why can't a biopsy produce instant results? Waiting days, over a weekend, while my cells samples sit in line, behind others in line first, is agonizing.

I am 48 years old. I remember being 16, as if it were just a few years ago. If I didn't have a mirror to look at, and never saw my face, I could still be 16, in my mind. The only thing that makes me feel old is seeing the loss of hair and a few wrinkles in the mirror. Besides, I have been watching what I eat and trying to find time to exercise, worrying about my cholesterol level and blood pressure. These were obvious things to take care of. Why worry about cancer? Cancer is something virtually unknown to my family. But, then I remember, that Dr. Wotten and everything I read said that I had an 80% chance of getting a call saying it was absolutely fine. I tried to remember this, but you still know there is a 20% chance that the call would tell a different story.