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February 27, 2007
Do not call it the "good" cancer
By Catherine, azfamily.com Staff
"If you have to get cancer, this is the good one to get."
I was diagnosed with thyroid cancer May 4, 2004, and if I never hear that sentence again, it will be too soon, and chances are pretty good that whoever says it to me will get hurt.
It was the one thing I heard over and over from every doctor to which I spoke. It was like they were all working from some script titled "How to ease the mind of a newly diagnosed thyroid cancer patient." Do they really think referring to this disease as a "good" cancer is comforting? I'm here to tell you it's not.
Free Workshop: Learn More
Learn more at thyroid cancer at a free workshop this weekend. This event is not just for patients, but for friends and family, as well.
Doctors will be on hand to answer your questions about all stages of treatment.
The event is hosted by the ThyCa Phoenix Support Group and the Virginia G. Piper Cancer Center at Scottsdale Healthcare
Saturday, March 3
8 a.m -4:30 p.m.
Conference Center, Scottsdale Healthcare Shea
9000 E. Shea Blvd., Scottsdale
For more information, visit www.ThyCa.org or e-mail ThyCa_Phoenix@ThyCa.org or call 1-877-588-7904. Registration is available online at www.ThyCa.org, but is not required.
That said, let me tell you a little bit about thyroid cancer. First of all, it's usually considered fairly rare, but instances are growing. Everybody I know is acquainted with somebody -- not me -- who has the disease.
And the number of new cases is growing. Steadily.
According to the Association of Central Cancer Registries, the National Cancer Institute, the Centers for Disease Control and The American Caner Society, the number of thyroid cancer cases in women jumped more than 4.5 percent from 1993 to 2000, and more than 9 percent from 2000 to 2003.
The September report, titled, "Annual Report to the Nation on the Status of Cance," said some 30,000 cases, most of them women, were diagnosed in 2006.
The American Cancer Society estimates that there will be about 33,550 new cases in the U.S. in 2007.
According to ThyCa: Thyroid Cancer Survivors' Association, Inc., a nonprofit organization, thyroid cancer is one of the few cancers that has increased its incidence at this rate.
But there is good news. Thyroid cancer usually doesn't kill you. The American Center Society estimates that fewer than 1,600 will die of the disease this year.
Depending on the kind of cancer and the stage at which it is caught, survival rates are stunningly good, hence the "good cancer" moniker.
There are four main types of thyroid cancers: papillary, follicular, medullary and anaplastic. I had the most common - papillary. Papillary and follicular account for between 80 and 90 percent of all thyroid cancers, according to ThyCa.
Symptoms, which might not be noticeable early on, include lumps in the neck, swelling of the lymph nodes, fullness in the neck, difficulty swallowing or swallowing and pain in the neck.
Most thyroid cancers are very treatable. In the case of papillary carcinoma, what I had, there's a standard treatment that tends to be very effective, but I'll get to that in a minute.
The first thing most people ask me is how I found this thing in my throat. My mother browbeat me into a physical. She'd been pushing for months and when I got really sick - walking pneumonia - in December 2003, I scared myself. So, I caved and went in and was poked and prodded and had just about every blood test known to man - 11 tubes worth.
I had history of hypothyroidism - an underactive thyroid - but had stopped taking medication for it a couple of years earlier. Not one of my brightest moves, but neither here nor there at this point. Knowing that little tidbit, the doctor felt carefully around my throat. She said my thyroid - the butterfly-shaped gland that sits in the throat and regulates all kinds of things, including some aspects of metabolism - felt slightly enlarged. She also thought she felt a lump. Although it was "probably nothing" - her words - she ordered an ultrasound, which confirmed the presence of a lump in the upper right pole of my thyroid.
The next step was a thyroid uptake scan to determine whether my lump was a cold nodule or a hot nodule. I believe the day she ordered that test was the first time we considered the possibility, albeit a remote one, of thyroid cancer.
I was given a small dose of radioactive iodine, then pictures were taken to see where in my thyroid it went. A hot nodule will take up more of the iodine than it should. A cold nodule will take up less. While not all cold nodules are thyroid cancer, almost all thyroid cancers are in cold nodules.
My lump was a cold nodule, and the chances of it being "probably nothing" dropped significantly.
From the thyroid uptake scan, I moved on to a fine needle aspiration - a biopsy. I hate needles. I mean really hate them. And the thought of this fine needle aspiration - somebody jabbing a very long needle into my throat - petrified me.
I went in for my FNA on April 30, and was stunned by how not bad it was. The worst part was the local anesthetic - lidocaine, I believe. I had asked for a topical so I never felt the needle. The lidocaine, however, burned. After that, nothing. I felt the doctor leaning on me. It felt like he was poking me with his finger. The doctor made several passes with several needles. I kept my eyes closed the entire time.
The results came back on May 4, and as you already know, they weren't good, but not entirely unexpected. It was about 4:30 p.m. when my doctor's office called. "We need you to come in tonight - now," said the voice on the line. I had my answer.
Being in the news business, I did what comes naturally to me. I researched. Not only did I get the basic facts, I checked out a Web site by the Thyroid Cancer Survivors Association and I read up on lots of personal experiences.
I also found out I was in good company. Actress Catherine Bell, co-star of the hit show "JAG" is a thyroid cancer survivor. Other "thycans" include movie reviewer Roger Ebert, singer Rod Stewart and author Isaac Asimov, whose collection of short science-fiction stories was the foundation of the 2004 Will Smith movie "I, Robot." Later in the year, long after my diagnosis and treatment, the Supreme Court announced that Judge William Rhenquist, who died in 2005 at the age of 80, had been diagnosed with thyroid cancer.
But I digress.
The day she gave me my diagnosis, my doctor also explained how treatment works - surgical removal of the thyroid followed by radioactive iodine therapy (RAI). So, along with researching the disease, I also went surgeon shopping, meeting with five different doctors over a period of three weeks. I wanted to be sure I found the right doctor. I was, after all, going to be paying this person to slit my throat.
I had several specific concerns in addition to those that go with the type of surgery I would be having. More on those in a minute.
I have to admit that I was concerned about the kind of scar I would have. I am very fair skinned and I don't scar well. And we're talking about a very visible area -- right smack dab in the middle of the throat. I wanted somebody who could not only handle the internal stuff, but who could also zip me up cleanly.
One surgeon said he used staples. No. Another said skin clips. Definitely not.
Once I settled on a surgeon - I went with the last one I met (he said he would use loose external stitched and leave plenty of room for the scar to flatten out) - all that was left to schedule the surgery. We came up with June 29.
Like any surgery, there are some inherent dangers aside from the obvious.
With a total thyroidectomy -- the surgeon and I had agreed he should take the whole traitorous gland lest he have to go back in at a later date - there are some pretty specific risks.
First of all, the doctor is working very close to the laryngeal nerves. Damage to one could leave me hoarse, probably for only a short time, but possibly for life. Damage to both could make my vocal cords collapse on my airway.
The other main risk involves the parathyroids. These little glands sit right next to, behind and in some cases even in the thyroid. They control calcium levels in the body. Damage to these, even if they're just stunned by the trauma that is surgery, can result in a drop in calcium levels that can induce seizures.
The 90-minute surgery was done in the outpatient Surgicenter at Banner Good Sam, followed by an overnight stay to make sure those calcium levels stayed steady. They did, and I was on my way home less than 24 hours after the throat cutting.
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The stitches came out a week later. Today you can barely the scar left behind by the 3-inch cut. My doc did good work.
We also got the pathology, which confirmed that the lump on the right side of my thyroid was indeed papillary carincoma. It also delivered a small surprise - a little area of papillary carcinoma on the left lobe of my thyroid. I was relieved we'd decided to take out the whole thing. As much as I liked my doctor and as good a job as he did, the thought of another surgery just was not appealing.
Now that my thyroid gland was gone, we had to wait for the thyroid hormone in my body to drain because in order for the RAI - the radioactive iodine - to work, I had to be hypothyroid, which, as the endocrinologist (the doctor who will help manage the disease for the rest of my life) explained, meant that I'd be slow and stupid. Thyroid affects things like memory, reflexes and energy levels.
To measure this, doctors look at something called TSH, thyroid-stimulating hormone. According to the reference range of Sonora Quest Laboratory, a normal TSH should be between .4 and 5.2. (That upper level has since been revised down.) A lower number means you are hyperthyroid (an overactive thyroid). A high number means you are hypothyroid. It sounds backwards, but that's the way it works.
In the days and weeks that followed, I imagined my brain producing more and more TSH, screaming for something that wasn't there to get to work. I pictured whatever little cells were left throwing up their little cell hands in defeat or waving a white flag in surrender.
I also got more and more tired and had trouble concentrating. A born multi-tasker, I couldn't walk and chew gum. I had the mental acuity of an ant and the reflexes of a sloth. I would start sentences with "um" to buy myself time to put the words together and by the time I was ready to say them, they were gone. I had been swimming laps with my mom. The same number was getting harder to do. Driving was pretty much out of the question. I could have if I'd had to, but it wasn't worth the risk. And my endo said, "No way." Studies show that a sleepy driver is as dangerous - if not more so - than an alcohol-impaired driver. And man, was I sleepy.
For the RAI, my doctor wanted my TSH above 35 or so. Four weeks after my surgery, when I had my pre-RAI blood test, my TSH was 162.
The other preparation for RAI is a low-iodine diet. Thyroid cells suck up iodine, which is why RAI works so well but rarely causes the side effects seen with traditional chemotherapy or radiation. It's not a bad diet. Just a little bland.
I was ready to go.
As luck would have it, the nuclear medicine facility at the hospital had a cancellation.
The nuclear medicine doctor (That's doctor No. 4 for those of you keeping count.) decided on a fairly aggressive dose of 150 milliCuries. Because it's impossible for the surgeon to get every microscopic scrap of tissue, the RAI is important. It will get whatever was left behind or (God forbid) any cells that might show up again down the road. (It's possible for thyroid cancer to reappear years, even decades, after the initial treatment.) Doses designed to get kill thyroid cancer cells are called ablative doses.
The dose they had from the patient who canceled just happened to be 150 mCi. Serendipity was kind.
The next morning, I returned to the hospital, and after going over the safety precautions one more time, the doctor open up a lead container the size of a pickle jar (I couldn't even lift it.) and fed me a small, innocent-looking capsule. Just like that, I was glow girl.
For the next 72 hours, I had to stay home, at least five feet away from everybody, drink a whopping 160 ounces of fluid a day and suck on sour candies or lemon wedges every couple of hours.
The fluids were to flush the excess radiation from my system. The sour candies and lemon wedges were to keep my salivary gland flowing, thus minimizing damage from the radiation.
It was a long 72 hours, and because I was up every two hours to use the bathroom, drink, rinse my mouth and suck sour candies, it was not at all restful. I had some nausea and some swelling in my left salivary gland (my senses of smell and taste have been quite right since), but in the greater scheme of things, it wasn't horrible. Don't get me wrong, it's not something I want to repeat, but I didn't have serious problems with it. I didn't even glow. (I was a little disappointed. I thought it would be cool to be my own reading lamp.) What I did do, not to be indelicate, was pee - a lot.
I didn't know kidneys could feel tired. I swear by the time those three days were up, they were panting. Every time I took a drink, one or the other of them would yell, "Incoming!" I have never spent so much time in the bathroom or gone through so much toilet paper in such a short time. It seemed like if I wasn't drinking, I was peeing and if I wasn't peeing, I was drinking. It was sad.
Just shy of five weeks after my surgery, I was finally able to start my thyroid replacement, which meant I was on my way back to the land of the living.About a week after they dosed me with the glow pill, I had my whole- body scan. It was absolutely the easiest part of this whole process. All I had to do was lay there. (Granted, all I had to do was lay there for the surgery, but surgery, by it's very nature is an insult to the body, so that doesn't count.) Anyway, the machine took a series of five 10-minute photos of the radiation in my body. It was kind of cool looking. The good news was that nothing had spread. There was activity in my throat, but that was to be expected.
I did a follow-up scan and blood test a year later. Clean. Another set a year after that. Clean. And I will be going for my all-important third scan -- the one where they call me cured -- late this summer.
I am very thankful that things fell into place and worked out so well for me. I was only off work for about seven weeks (The docs had said to expect 12.), and overall, things could not have gone better had I scripted it. Between my family and my co-workers, I had an amazing support system. All of the procedures were pretty much textbook. What more could I ask?
The big things with thyroid cancer like mine are maintenance and follow up. They never go away. Ever.
I have to take Synthroid every day. Forever. (This time stopping is not an option. The drug not only helps keep the cancer from coming back, it keeps me alive.) I also have to have periodic blood tests (despite my fear or needles) to make sure the dosage it right. It took a year to find the right one, and now that I'm losing weight, my levels are all wacked out again. It's a delicate balance.
Having cancer has changed the way I look at things. I know this is not going to kill me, but it's made me take a look at my life and what's important. I am shifting my priorities, working less and playing more, not to mention paying more attention to my health.
I'm thankful that my disease was treatable and is manageable. But while everything has worked out for me, I still can't bring myself to call this the "good" cancer.
Posted by Catherine H. at February 27, 2007 12:37 PM
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Comments
Yeah, the "Good Cancer" thing really bugged me for a while, but after seeing my mother go through Kidney Cancer, and then a friend develop Pancreatic Cancer (and live!), I've definitely come to terms with it. The mortality rate is incredibly low, and even though the diagnosis rate is increasing, the mortality rate has not changed. Basically, they're realizing some people live their whole lives with Thyroid Cancer and don't even know it!
I'm currently in "Hypo-Hell" and starting the scans and RAI treatment this next week. Like the author, I had a nodule on my right side, and then another small one they found on the left. The surgery was pretty straightforward. The worst so far is the Hypo-Hell - not fun at all, but in the scheme of things not too much to deal with.
Overall I now see what they mean by it being the "Good Cancer" - but still, the psychological effects can be crushing at times.
Posted by: Ron at April 5, 2008 10:59 PM
I was diagnosed four years ago, right now I am going through the yearly follow-up. I had a total thyroid removal. I have now been off of Synthyroid for a month now and have two more weeks to go. My neck and face are very swollen and I feel so sluggish. I have to work while going through this. Does anyone have any suggestions on how I can make my life more manageble during this process. I also have severe cramps in my hips and my back. Any help would be appreciated. Thank You
Posted by: Nita Young at February 20, 2008 2:49 PM
Thank you so much for posting your story! I have been hypo for 3 years and am now facing trouble with my vocal cords; so, I had the uptake & CT on Friday and waiting for the dr.s call. He already said we'll be doing a thyroidectomy. I have a goiter with solid and fluid filled cysts also. It is just really reassuring to read that others feel your pain and understand the struggle. I pray you are doing well.
Thank you again,
Annetta
Posted by: Annetta at September 23, 2007 9:31 AM
Thank you so much! I just found out I have Thyroid Cancer. I just had a total thyroidectomy and I feel at such a loss. I have been told 1000x this is a good cancer to have but I am still scarred to death of dying. My father died of cancer and I feel so young to have cancer. Thanks for taking the time to share your story. I feel relieved about what is ahead of me.
Posted by: Seattle1970 at September 22, 2007 10:09 PM
Catherine:
Thanks for sharing your story. I have papillary cancer of the thyroid and currently am in the pre-RAI stage. Just found out my labs are within range and Friday is my dosing.
I am feeling wiped out and I am trying to still work. Unfortunately, the longer I am hypothyroid, the worse it gets. The diet is a bummer and I am achy all the time. I am looking forward to getting this done.
I share your comments about it being the "good kind" of cancer. Hard to tell your mind...that any of the "c" word is good. I know I am fortunate that it was found but it still is a battle. One I was NOT prepared to fight. I am 38 yrs old and had no symptoms. It was found literally by accident. One day I am fine, the next I have a nodule and then the cancer vortex sucks you in.
I have a good support system (love of my life and older 11 & 16 aged children and a host of friends). Still, sometimes I just want to curl up and cry. Or sleep...just sleep for a whole night without waking up! Ahh...its the little things that make us so happy.
I hope things continue to go well for you. Your positive thoughts are reassuring in this "darkness before the light" time.
Pam
Posted by: Pam Callahan at September 5, 2007 7:39 AM
I read your full story and it makes me glad you recovered well from the illness. My girlfriend who means more than anything to me has been told she is likely to have the illness.
She has a bleak outlook on the aftermath of the treatment she will be given. She is so worried an already give up hope. How could I reassure her that it is curable even though your above statement has been read and shown to her?
She had a check up at the doctors and they said its more than likely thyroid cancer. She does'nt have no hope and its hard for me to reassure her that with treatment and my revision she will beat it.
She has a step father who she has looked upto an loved for the most of her life, Who has only just recovered from severe throat cancer. He's only just got mobile and makes her overwhelmed but lacks faith in herself.
Your above statement helped me understand more about the treatment she may have to receive, and she can be sure she will have a dear loved one guiding her through the steps of recovering.
Thankyou for your informal statement about your experience with the illness. I hope she will have your success in recovery.
I hope all goes well from now on for you and those surrounding you. eternal good luck and health to you always.
Stevan
Posted by: steve at July 20, 2007 12:31 AM
This is fantastic -- and I completely agree with you on the "good cancer" business. I tackled the similar It's the cancer I would choose condescension, myself.
Every thycan who shares his or her story makes life a little bit easier for everyone who will be diagnosed in the future. Thank you!
Posted by: Joan Hedman at February 27, 2007 11:29 PM


