Other than a brief mention the other day, I've never blogged about this before, but in 2004 I was diagnosed with thyroid cancer. It was one of the most difficult times in my life and during that time I found 2 things to be very helpful: researching as much as I could on the Internet and speaking with other cancer survivors and hearing their stories.
I'll warn you now, this post is really long! But I don't know any other way to share my story., and it wouldn't be appropriate to casually sum up such a tough subject. So here it is, and for anyone who may be struggling with a cancer diagnosis, or anyone who has a loved one dealing with this issue, I hope my story sheds some insight and provides comfort for those who need it.
In the summer of 2004 I was sitting at the computer one night and all of a sudden my right arm became slightly numb and I felt incredibly dizzy and lightheaded. It didn't last long, but long enough to concern me with what was going on. I never go to the doctor, unless it's totally necessary, so these symptoms were just odd enough that I felt the need to go.
Of course, by the time my appointment came I had not experienced those symptoms I tried to describe again (figures). But while I was there my doctor was checking me over and felt a large bump in my neck. At first I shrugged it off, because I've always had an enlarged goiter, so it wasn't uncommon for doctors to remark about the size of the lump in my neck at regular check ups. They would always order some blood work to be done, and it would always come back normal, so I wasn't concerned.
{What I found out later was that my family doctor is also a thyroid cancer survivor, now going on more than 12 years, so when he found the lump in my neck, he wanted to make sure he knew what it was.}
If it weren't for the continued curiosity of my doctor I don't know how much longer it would have taken to discover my diagnosis, because I had no symptoms.
Step 1: Blood TestsSo the first step was of course to draw blood and check my thyroglobulin levels. The blood work came back normal.
Step 2: UltrasoundNext I went through an ultrasound to try figure out what the lump was in my neck. I'm not really sure in hindsight what they could tell from this test, or perhaps it was just a standard procedure? But it also provided no help.
Step 3: Thyroid Nodule Biopsy (Fine Needle Aspiration)This part was interesting. I went to the hospital and to the radiology section where they stuck a huge needle in my neck several times to numb the whole area. And then they inserted a long needle to gather samples of the lump in my neck and to measure its size.
It was then I discovered the large lump on the left side of my thyroid was 5.5 cm! And not only that but I also had 2 more lumps on the right side of my thyroid which were smaller between 1-2 cm big.
I think the job of a radiologist must be very frustrating to know what the results of many tests are but not be able to tell the patients anything...and it goes without saying that it's far worse on the end of the patient!
For more details on this biopsy process go
here and
here.
A biopsy has 4 possible outcomes:
1. benign.
2. malignant.
3. suspicious.
4. indeterminate.
And of course, just to add to all the stressfulness and prolong the waiting, my biopsy proved to be suspicious. They could not tell whether my results were benign or malignant...which means the only way to know for sure is to have surgery.
***Keep in mind that several weeks have been going by between each doctor's visit and test. This was not a quick process by any means!!!! My initial visit to the doctor was back in end of June and now it's Sept. 1st!
And let's talk about what else was going on in my life at this same time.
1. I was 28 years old - and naively, as many young, healthy people do, I believed these were issues that only old people dealt with. Cancer didn't happen to people my age.
2. I had 3 young children - ages 9, 7, and 2...which further justified my reasoning that none of this could really be happening to me.
3. My husband was in the process of switching careers and going to work for the military full-time. In the middle of August he was placed on active duty orders and we were awaiting what would be his very first overseas deployment to Kuwait (keep in mind this is 2004, so the Iraq war was still a major issue).
Step 4: Surgery - Total ThyroidectomyI had never had surgery of any kind before. And in this situation I had a couple of options:
1. I could have the left side of my thyroid removed where the really large 5.5 cm lump was and have it checked. If it came back benign...great...but what about the lumps on the other side? And if it came back malignant I would have to go back in for surgery a second time to take out the other half.
2. I could have my whole thyroid removed in 1 surgery...but then I would have to take a daily thyroid supplement for the rest of my life. If I only remove half of my thyroid I wouldn't need to do this.
Well, since I had lumps on both sides it made more sense to remove the whole thing and only go through one surgery recovery time. And since my mom and older sister had been taking thyroid supplements for years for hypothyroidism, I knew it wasn't any big deal to do.
For more details on this surgery go
here.
We had decided to take our annual family photos prior to my surgery that year so I wouldn't have a big ugly scar in the pictures to remember. My next door neighbor at the time happened to be a photographer. And since this post is on a rather heavy subject, I thought I'd lighten it up a little by sharing those wonderful photos.
{Side note: I made the cardinal mistake of deciding to try a new haircut, which could only be explained by a horrific mushroom type look...and unfortunately could only manage to be salvaged by chopping off all my beautiful long hair into this really short cut.}
These photos were taken on 8/31/04, the night before my surgery.
My gorgeous children:

IK - age 9.


EJ - age 7.


LA -age 2 1/2.










The surgery went well, although I had a bad reaction to the anesthesia and was really sick to my stomach for several hours. After I came home the next few days were really frustrating because of the immobility in my neck. It's amazing how much you don't realize how reliant you are of certain parts of your body until you can't use them! But in all, my recovery went well.
Step 5: DiagnosisSo while I was at home recouping from surgery, I was also anxiously awaiting the results of my long awaited diagnosis. But the results took much longer than normal. Why? Because there were 2 pathologists in this area: one was convinced it was cancer, and the other was convinced it wasn't...and they could not come to an agreement on my results. Fantastic!
To solve this dilemma, slide samples of my thyroid were sent back east to a specialist at the University of Pennsylvania...who just happened to be on vacation!!!
Three...three...THREE very long, completely agonizing, PAINSTAKINGLY slow weeks went by!!! Some of the longest weeks of my life, while I contemplated what it would mean to actually be diagnosed with cancer...to actually think it could be a real possibility.
My relatives would call every day to see if I had any news. I cried more times than I can remember at the slightest thought of what the big "C" word, cancer, could mean, and whether or not I would be here for my children...but every time that thought came into my mind I immediately dismissed it, because I knew with every ounce of certainty that it simply was NOT an option!
FINALLY, the day came and my surgeon called to tell me the news. All this time I had been waiting, every late night I couldn't go to sleep, I would search the Internet for all the information I could possibly find about all the various diagnoses he could tell me and what each of them meant.
My surgeon happened to be one who severely lacked a good bedside manner...he was a doctor with an excellent reputation for successful surgeries, but terrible comfort skills. Of course, given the choice, I'd much rather have a good surgeon who lacks a bedside manner, than to have a crappy surgeon.
Anyway, he called me and very nonchalantly explained to me rather briefly that my results came back as follicular carcinoma. If I hadn't done so much Internet research, I would've had no clue what that meant...but instead I knew those were the exact words I did not want to hear him say. Follicular carcinoma = malignancy = cancer.
For more info. on follicular carcinoma go
here and
here.
At this point I wasn't really sure if I should say "I have cancer" or "I had cancer" since my whole thyroid had already been removed? I was too stunned to ask my doctor on the phone who simply told me I would now be referred to MSTI (Mountain States Tumor Institute).
I was sitting in the office next to my husband when I received that call and neither of us knew what to say. I just remember being so stunned because I had thoroughly convinced myself that it couldn't possibly be cancer and I simply knew my doctor would eventually call to tell me that fact, but that's not what happened.
The worst part? I finally received that diagnosis just 4 days before my husband left for Kuwait...and he had no definite scheduled return date. I'm convinced it's only by the grace of God I managed to retain my sanity through that time!
SD left for Kuwait, leaving me home alone with 3 small children facing unknown cancer treatments at the time. The day after he left I met with my new doctor at MSTI and he explained the treatment was radioactive iodine therapy.
because this post is sooooo long, I'm breaking it up into 2 parts...
