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Light of Life Patient Programs

August 1st, 2014
Light of Life Foundation partners with New Jersey Shore Medical Center in Central NJ on thyroid cancer.

October 11th, 2014
Light of Life Foundation Patient Educational Program in NYC @ Memorial Sloan Kettering Cancer Center on thyroid cancer.

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Patient Profiles

Name: Dr. Heidi Henson
Your Story:

I was diagnosed with thyroid cancer in 2005. After a routine physical, the nurse practitioner referred me to an endocrinologist because the lump in my neck seemed rather large. It took 4 months to get in to see him. He did an ultrasound and didn't like what he saw, so sent me to Beth Israel in Boston for a needle biopsy.

That took another 4 months.

After going in to the city for the biopsy, over a long lunch hour no less, I returned to the office thinking that was that. I was 37. I had always been very healthy, no history of cancer at all in my family. Then within another hour I got a call from the surgeon- you have extensive papillary cancer and need to have surgery to remove your thyroid (and a few lymph nodes) within the next two weeks. Whoah! As a single mother, my first thoughts were of my son- am I going to live to raise him?

I can go on and on about the treatment, and the testing, etc is still ongoing for me, as my doctor likes to say I had a "nasty tumor." The worst parts were going off the meds, because I am a professor; I do a lot of public speaking and consulting too, so to lose my mental acuity for a month or so meant I couldn't do my job very well. That's hard, but even worse is the diet. I just finished my fourth year on it for testing purposes, and despite all the great recipes, it's torture for me. I normally eat a lot of dairy, seafood, soy, etc and of course its all verboten. At least each year I lose a few pounds out of the deal :)

As a professor with a doctorate in adult development, I know all the theories about personal development, life coaching, etc, and after the whole ordeal, I have to say I feel blessed. Everyone gets intellectually that life is short, but few of us get it emotionally with enough time to make life changes. They are diagnosed and soon gone. So for me it's been an opportunity to change habits and alter expectations, and I am deeply grateful for the lesson, and for life.

Name: Vicki
Your Story:

My friend had recently gone to an endocrinologist about a nodule on her neck, and was telling me about the experience, and how glad she was that it didn't turn out to be anything serious. Curious, I put my fingers on my own throat, and felt a little bump. Huh. Maybe it was just my voicebox. How often do you really feel your own neck anyway?

It was November, and I was flying home for the holidays in a few weeks. My mom was being treated for breast cancer. She turned out to be doing worse than I thought. I took additional time off work to help care for her. She died a few weeks after New Year's. In the days following her death, I would lie in bed and try to sleep, but I could feel that lump pressing down on my throat. I thought it was just my suppressing tears - you know, that soreness you feel when you are holding back crying.

A week or two went by before I told my father that I thought I should go to the doctor. I didn't think anything would really be wrong - I mean, how likely is it that a 24-year old would get a serious diagnosis three weeks after her mom had died? The universe doesn't work that way. Well, apparently it does. I got my "suspicious for papillary thyroid cancer" diagnosis, and was fortunate enough to be whisked into surgery a few days later, with radioactive iodine treatment following a few weeks thereafter.

It was a shocking experience - two enormous life events happening in such quick succession - and it taught me that there is no such thing as a "well-timed" life. Things happen. They can happen to anyone. I'm not invicible, I'm not "one of the lucky ones". The people who have cancer in this world did not bring it on themselves, they did not just get it "when they were older". There's no such thing as being immune to cancer.

I was so lucky my friend told me about her nodule. I had never even considered thyroid cancer as a concept until I got it. Building awareness is so important. On a day-to-day basis, it doesn't have to be a big, splashy event, or a ribbon, or a tattoo (although those things all do help). It's telling people you care about that, "By the way, I had this lump on my neck, and it felt like this" in 2 minutes. Those 2 minutes could save their life.

Name: Angel
Your Story:

Hi! My name is Angel and I was diagnosed with Hashimoto's disease when I was 12 years old. I was started on synthroid and my goiter shrunk over the next 2 years. I went to my endocrinologist every 3-6 months for blood work and routine follow up. When I was 15, he noticed that a few nodules were growing on the right lobe of my thyroid. He did a fine needle aspiration, and the pathology showed pre-cancerous cells. My doctor, family, and I decided to do a right thyroid lobectomy initially to try to save the function of the left lobe and parathyroid glands. The surgery was so painful and scary! The recovery period was pretty quick for me, and I was back in school within a couple weeks.

My family and I anxiously waited for the pathology results. My doctor called me a week later to tell me that in my thyroid there were cancerous cells in 10 of the slides they prepared! We were all very shocked at how quickly they spread from pre-cancerous to cancerous.. SCARY!! They diagnosed me with STAGE I PAPILLARY CARCINOMA.. All I needed was surgery to cure me! I then had my left lobe removed and were all relieved when there was no cancer present in that side! Just recently my doctor found another nodule in my right thyroid bed during a routine ultrasound and we are going through the motions all over again.. FNA biopsy and I just did Radio-active iodine for the first time. (They didn't want to do it after my surgeries because of my young age and the risk it might've had on my developing reproductive system.) I hope this turns out to be nothing!!! It has been a long 10 years (I'm currently 22) that's for sure, but I have a great support system and they with God's help will get me through anything!

Name: Kathy
Your Story:

I was diagnosed with thryoid cancer in 2005. I was taking a shower and was washing my neck, and felt a large lump on my neck. At first I thought it was as my Adam's apple. I called my regular doctor when I got to work, and was seen right away. This was the begining of February 2005. He had me go for an ultrasound of my neck. I knew then something was wrong when the girl doing the ultrasound asked if my doctor had ordered any blood work. I told her no (but that didn't matter anyway, my thyroid level was fine).

I called the doctors office to see what the results were, and he said there were a few nodules, not to worry, that was very common. If I wanted, he would refer me to see another doctor. Well I waited a while, because I didn't think it was anything to be concerned about. By the time spring came, I was tired all the time; I would go 1 mile in the car and could fall asleep. So, I called a thyroid doctor, and had a fine needle aspiration biopsy. The pathologist could not tell if it was cancer or a benign nodule. I was told the lump needed to be removed asap. I had my whole thyroid removed on August 29, 2005. The left lobe was Follicular cancer, the right lobe was Papillary, and the right Lymph node was also removed -positive for Papillary cancer.

I went on the low Iodine diet once, right after surgery, I had the I-131 treatment in October 2005. I changed my regular doctor twice. I see the thyroid doctor about every 3 months, go for regular blood test. Once a year, I have the thyrogen shots and an ultra sound of my neck. So far, nothing has showed up. Just a pain, having all the test, blood work, drs visits, but best to be safe than sorry. The doc says my blood work is fine, but I keep gaining weight, my hair is dry. I am currently taking 150 mcg of Synthroid. I take 1/2 pill on sunday, and a full one the rest of week. What I hear from different doctors, if you have to have cancer this is the one to have. Doesn't make me feel any better.

Name: Halie
Your Story:

I'll never forget the day my endocrinologist looked at me and said, "The cancer has spread to your lungs." That statement was soon followed by, "You'll need to go to either Johns Hopkins in Maryland or Sloan Kettering in New York to get treatment, I can't help you anymore." What? Are you talking to me? Are you the same doctor who acted like I was a hypochondriac for the last four years because I was overly concerned about the huge lump in my neck. Excuse me?

Here I was feeling like I had put all this thyroid cancer stuff behind me; I was just in for a brief re-check appointment, nothing to be concerned about. In my mind everything was OVER, all the cancer was long gone with the surgery I just had followed by a dose of RAI the month before. (And let me tell you, that was no picnic!) My doctor seemed to think thyroid cancer was so nothing, like it almost shouldn't even be allowed in the "cancer category". So that's exactly what I thought all along, that it was no big deal. I didn't even bother to tell many people that my thyroid was cancerous because I knew what kind of anxiety that word, cancer, created. I knew it was almost 100% curable so I just didn't mention it. This would be something I would later regret not having done. But now here I am sitting in the parking lot of the doctor's office. I am so shocked by what I've just been told that I can't even move. Mascara is running down my face and I can't even think of what to do. I'm all alone in my car. I am so mad, so angry! This was not supposed to happen to me. I'm just 31 years old and I was going to work on having a baby. Now I'm going to die, I'm just going to die. Everyone with lung cancer dies fast. I don't understand, this kind of cancer is not supposed to spread to your lungs.

As I sit here I am watching all these people go into the doctor's office. I know they have healthy lungs and longer life expectancies than I do and I can't help but hate them as they go by enjoying their happy little lives. What am I going to tell my mother, my husband, my father. How can I even begin to tell them this.

Well, that was a year ago and a lot has changed since then. I've learned so much I never knew about thyroid cancer. I quickly learned that I have thyroid cancer that has metastasized to my lungs and not lung cancer. I learned that I was not just going to die but that I would most likely live a long time and although my cancer will probably be around from now on, it shouldn't interfere that much with my life. I was thankful to find this website and to also talk with Joan Shey the founder of this site, who told me of her story and who gave me hope and great advice. I will soon be getting my official RAI treatment for my papillary cancer in October 2009 at Johns Hopkins. I am looking forward to getting my treatment started and knowing that most of the cancer cells in my lungs and lymph nodes will be destroyed. Also, I will feel much better during my treatment thanks the use of thyrogen injections that will allow me to continue on with my thyroid hormone.

It has been a hard year financially. My husband and I live in South Carolina and the travel back and forth and hotel expense has taken a toll on us. My husband also lost his job about four months ago. But, as long as I can get great treatment, it's all worth it! Having cancer has given new and wonderful meaning to my life. I work as a dental hygienist, and although I've always preformed oral cancer exams on my patients, now I now how important those exams really are, which can be a matter of life or death. I've learned how misinformed many of our physicians are who seem to think thyroid cancer is nothing to be concerned with. I just recently gave my new PCP an education on thyroid cancer when she was reviewing my medical history and said, "Well if your going to have cancer, this is the best one to have." I felt my spine tingle a bit then I politely gave her a new perspective on the seriousness of thyroid cancer.

Also my cousin, David who is 37 was also diagnosed with papillary thyroid cancer recently. David was very persistent with his doctors who were shocked when his biopsy came back positive. We are waiting to find out if he too has metastasis to his lungs. So, I've learned so much this year and I'm thankful to of had support from my family and friends and to be able to talk to other people fighting this disease. Oh, and my plans for next year: to work on having that baby!

Name: Amy
Your Story:

At twenty, I was first diagnosed with Hashimoto’s Disease. This is an autoimmune disease of the thyroid where it essentially self destructs over time causing nodules to form. As a result, I endured three years of frequent ultrasounds and increasingly painful biopsies.

When I became pregnant with my first child in 2003, I also became hypothyroid for the first time. I got started on Synthroid and it has been my morning companion ever since. After my daughter was born, an ultrasound was performed, this one looking “a little suspicious”. My doctor sent me for a CT scan. The radiologist didn’t like what he saw and recommended I see a surgeon.

Medical referral agencies informed me that the team at Memorial Sloan Kettering was considered tops and luckily they also took my insurance. I met with Dr. who looked at my scans and said “so how does next week look for surgery?”. Next week! After taking a moment to contemplate this new reality, we scheduled the surgery for about three weeks later.

With my thyroid gone, my adventures with I-131 began. That diet. Not fun. The Dr. prepared me for the treatment making sure that I had made the necessary arrangements for my baby to be taken care of while the radiation made it’s way out of my system. The treatment itself seemed like something out of a sci-fi movie. It basically involved ingesting “nuke juice” which is highly toxic to everyone else. After I was cleared to leave, I was given a card with the doctor’s name and number just in case I got stopped on the George Washington Bridge on the way home for carrying nukes. I had fun with that one.

The I-131 seemed to have done it’s job since my scans came out clear for the next three years. Then I got pregnant again. Pregnancy speeds up cancer growth and after my son was born in January 2007, one of my lymph nodes turned up on a scan with a 2.2 cm cancer growth. So, it was back to the OR, this time for a “neck dissection”. (I always cringe at the name of that particular surgery.) This time, life was more complex due to the fact that I had two kids that needed to be taken care of. My mom took charge and made me very thankful that we live close by. The recovery from this surgery was more difficult and I still have stiffness and sensitivity on the right side of my neck.

I had another routine ultrasound earlier this summer. I had a sense when I was being scanned that something wasn’t right. The technician was spending a bit too long on one spot on my neck. Sure enough, that afternoon I got a call from my doctor’s fellow saying that they found a lymph node that has all the telltale markings of cancer. It is small, at 1.5 cm. But, she also threw in the fact that it is in a “tricky spot” right near the carotid artery. It’s also on the right side of my neck which is still uncomfortable from the last surgery. So now we wait. My next ultrasound is in November. At that point they will see if it has grown enough to make surgery feasible or not.

I am not scared, just impatient to find out what happens next. The logistics of surgery, recovery and treatment are always hard, especially when there are little kids in the picture. I feel confident in my doctors and relieved to know that I have such a good support system at home. I am grateful to have access to the best medical care and to be dealing with this at a time when successful outcomes are the most common outcomes.