Sporadic MTC Stories

I think that my story is well worth telling and I am sure that it will encourage all newly diagnosed (especially the young folks) to be more hopeful.

I was diagnosed when I was 45. I am now 64!

At the time of my diagnosis, the tumor was well out of the thyroid. I was told that its size suggested that it had probably been growing undetected for about 20 years. This means that I have lived with this for about 39 years. Pretty good, eh?

I have had 4 operations on my neck. Apart from damage to one of my vocal cords and some other nerves to my arms I feel O.K. Oh, I feel shaky at times, though that may simply be part of my normal aging process. I occasionally have bouts of diarrhea, which have not bothered me too much (and this is only in the last 6 months or so).

I have also had breast cancer, diagnosed 4 years ago. For quite a while it was thought that the breast cancer drug Tamoxifen was also helping with the MTC (my calcitonin level was decreasing over a couple of years). However, this now is not thought to be the case, and my calcitonin is starting to increase again. My last CT scan has revealed three small nodules in my lungs. So in all these years it seems that they are the only distant metastases of the original MTC.

I have done lots of positive visualization over many years, and this makes me feel very good in myself. It may have a therapeutic benefit as well, but it certainly cannot do any harm.

So, to all you younger and newly diagnosed folks, remember that in most cases, this cancer grows very slowly.

I have been most impressed by the e-mail from young women, starting families or simply getting on with there lives and not letting it get in the way too much. This is really great. You shouldn’t put your life on hold because one day when you are an old dame you will maybe think, “ Oh I do wish that I had children.”

I am sure that a cure is on the horizon, and, if not a cure, then a way of managing it, like any chronic illness (diabetes, for example) I believe there is EVERY REASON TO BE POSITIVE.

So when you are a bit down, think of me.

Once Upon A Time, a most beautiful young woman, alas not a maiden, was diagnosed with MTC. Her name was Cath; she was sporadic

So, Cath,
Diagnosed long ago
Had MTC long before that
Lived happily ever after,

(Of course a handsome prince would be nice, but in the meantime, the old man will have to suffice)

All the very best to you,
Cath

P.S.: My hubby has just accused me of only getting shaky when there is housework to do!

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In the fall/winter of 1994, when I was 27, I went to my family doctor for a general checkup. I had begun putting on weight fairly rapidly since the birth of my son in 1992.

As part of the routine exam, she felt my neck and asked if I knew I had a lump there. I didn’t. She thought it was probably an enlarged thyroid, which could possibly account for the weight problem.

She ordered the standard round of blood work… TSH, and a glucose test since I had gestational diabetes when I was pregnant. We both felt fairly certain that one or both would come back elevated and that would be that. Both came back normal.

Since the blood work was normal, she sent me to have an ultrasound done to look at what the lump was. The ultrasound showed nodules, but were undeterminable. So, this was followed by fine needle aspiration. Those results came back abnormal but inconclusive.

By now, it was March of 1995 and I’d been messing around with this for a few months. Little did I know what was looming in the distance.

Because what it was, was still unknown, my doctor sent me to a surgeon to attempt another needle biopsy. I met a wonderful surgeon, now retired. We had a long talk about what might or might not be happening with me.

He gave me several scenarios and options. One of the options he mentioned was to see if taking thyroid medicine would shrink the nodule. I asked him whether, even if that worked, would there come a time when the nodules would have to be removed. He said they would probably eventually have to come out.

At that point I made the decision to forgo the second needle biopsy and just have the nodules removed. I figured if they would have to come out eventually, why not just take them out now when I was young enough to bounce back quickly from surgery. I shrugged it off as a no-brainer. I am not a fan of surgery at all, but given the option to do it sooner than later, I chose sooner. At this point, I don’t think anyone was really overly concerned about what they would find.

The surgeon performed a thyroidectomy. When I woke from surgery, he then explained that it was cancer and the tumor had begun to invade my windpipe. It also had trapped the nerve to my vocal cord, which had been damaged during the surgery though he felt certain it would recover. He told me he removed as much of the tumor from my windpipe as he could, but he had to leave some of it to avoid potential complications.

I still didn’t know it was Medullary Thyroid Cancer. I knew I had cancer (ugly, ugly word), but didn’t know more beyond that at this point. He told me he sent samples to the lab and would let me know the results at my follow-up in a few days.

I had a follow-up with the surgeon a few days later, so I decided to do some research to find out more about this cancer he said I had. That was when I learned there were 4 types… two very common ones (Papillary and Follicular), one that wasn’t so great (Medullary), and one that was horrible (Anaplastic). Because of the statistics, I was fairly convinced it was either Papillary or Follicular cancer. My family had lots of history of cancer, but none were thyroid.

After reading about the cancers and their treatments, while I wasn’t thrilled, I thought… ok… this won’t be TOO bad. I’ll deal with it and move on. Right? Imagine my shock when the doctor told me it was MTC. Because I had already done some research, I knew things were as great as I had hoped they would be (all things considered).

Now begins the debate…what to do. My surgeon was the only one in town who had any experience with MTC and that was minimal at best. More surgery? Radiation? Wait? I didn’t realize how complicated this whole thing was going to get.

I was fortunate to live close to a center with a medullary thyroid cancer specialist so I was sent there for an evaluation. They did the genetic testing, which at the time was still in the trial stage. Luckily, the results came back sporadic. My CEA was around 12 and my calcitonin was about 13,000 (we didn’t have pre-surgical numbers since we didn’t know what we were dealing with). We knew, at minimum, tumor was still attached to my windpipe.

I have to admit… I was scared out of my mind. While in the waiting room to see the specialist, I began talking to another patient. Her name was Linda and she was from Georgia. She was routinely coming up to see the specialist for treatment, etc. She also had MTC. She had initially been mis-diagnosed and by the time she was properly diagnosed, the cancer had spread to her lymph nodes, bones, and liver, and it was pretty extensive. But what shocked me was the fact that she was already about 8 years into everything.

She was a wonderful blessing in disguise for me. I remember thinking… ok, so maybe things for me aren’t so bad. I have a small tumor still on my windpipe, but we thought that was probably all. And if Linda could go THAT long with it having spread so far and wide, maybe I’ll be ok. We exchanged numbers and addresses and I felt much better after I left that day. Still freaking out a little, but realizing I wasn’t dead yet.

After multiple consults with surgeons, oncologists, and endocrinologists, as well as CT scans, MRI, Octreotide scans (none of which really helped decide anything), I decided on additional surgery to remove lymph nodes and explore a little more. My surgeon went back in, 6 months after the original surgery, and took out about 30 lymph nodes of which about half tested positive. Up to this point, there was much concern about the remaining tumor on my windpipe. Some of the surgeons who were consulted felt we should do a tracheal resection and cut out the part involved. The risk was they might have to cut away too much, which would leave me with a permanent trach tube. Not a pleasant thought for me at age 28 (yes, vanity is still alive).

When I woke from surgery, my surgeon told me he had to do more extensive surgery. He was quite surprised to tell me that the tumor appeared to peel away clean from my windpipe. He was certain it would have been worse than it was 6 months ago. He couldn’t explain it, and I don’t try to. Prayer, karma, angels… I don’t know. Whatever it was, I wasn’t complaining.

After the second surgery, my calcitonin dropped to around 2,000 and my CEA was around 9. Better, but still not great. Despite the odds stacked against me, we decided to treat with external beam radiation because all the scans that were done, did not detect any sizable tumors anywhere else.

So, after 4 months of healing (February of ’96), I began 6 weeks of radiation (30 treatments). I have to admit that was a very odd experience. It really didn’t even start to hurt for about 3 weeks. I felt like I had a very very bad sore throat. I lost the hair at the base of my neck where the radiation hit, and had a “sunburn” on my neck.

Honestly, for me, the worst was the loss of my voice. Because of the damage to the nerve on my vocal cord, then the radiation, I lost my voice for over a year. That was hard to work around.

But, other than the two surgeries themselves, I didn’t miss any work. I know there has been a lot of debate about external radiation, but I don’t regret it for a minute. We tracked my CEA and calcitonin for a year following radiation. By the end of that year, my CEA was 2 (NORMAL!!) and my calcitonin dropped to 250. We knew it would never be “normal,” but it was pretty darn close and I was thrilled.

That was 11 years ago. As of a few months ago, my CEA is 3.7 (a little elevated) and my calcitonin is 175 (yep… down even lower than a year after radiation).

I still worry sometimes, when I have lingering aches and pains that don’t have a logical explanation. I still get weird when it’s time for my blood work, until the results come back.

But I also think back, 12 years ago when this journey started, I was told by my oncologist I had a 40% chance of surviving 10 years. I turn 40 this year and, quite frankly, I think it’s wonderful. I love the fact that I have defied the odds.

Yes, I have cancer. The clinical facts can scare the daylights out of you, but the one that I continued to focus on was this… It is a slow growing cancer. Many people can live very long and normal lives, even with known tumors in them. It has a history of going to the liver. Ok, that’s not great. BUT, the liver is one of those wonderful organs where they can take part of it away with the tumor and you’re still OK. How cool is that!?!

If I were to offer any advice to the newly diagnosed, it would be this. Allow yourself to freak out. Allow yourself to be scared. It’s ok, it’s normal.

BUT… Allow yourself to live, too. Not long after my diagnosis, while sitting in the waiting room to see my oncologist, I was reading Reader’s Digest and saw a quote that I thought was quite poignant for me. It said, “Being defeated can be a temporary situation, giving up makes it permanent”. I realized then, I had choices to make and I had to choose to not give up.

I am very fortunate to have a wonderful circle of friends and family who helped me keep my sense of humor, not let me feel too sorry for myself, and pick me up on the days I just couldn’t do it alone.

No one is alone in this journey. Just ask… you’ll be glad you did.

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Hello, all,

I am a 55-year-old woman from outside Bangor, Maine, with the world's best husband, two great sons (grown), two light-of-my-life grandchildren, sisters who are my best friends, and many close friends. I owe any success that I have had in fighting this disease to those who love and support me.

My MTC story begins in August 2002, when I discovered a lump on the left side of my neck. At the time I was a cath lab nurse, and my left side faced the source of radiation.

I went immediately to my GP, who sent me straight to a surgeon. He did a thyroidectomy and removed several nodes from my neck. Meanwhile, I had been researching thyroid cancer and hoped I would be lucky enough to have the primary type, and surgery would be the end of it.

Well, you all can guess how the biopsies turned out. The surgeon still felt very optimistic that he had removed it all; he ordered a neck and chest CT.

The worst day we have had since I found this lump was when the surgeon called my husband and me to his office to discuss my CT results. Things looked very bad, at least to my doctors in Maine. There were tumors in my neck, many enlarged nodes in the chest wall, tumor in both lungs, and two adrenal tumors. He told me to "get my affairs in order," and that I probably had less than a year to live. He said there was no treatment available for MTC that has spread beyond the thyroid.

My husband and I both broke down, of course, and I don't know how he got me out of that office, past all those people, and into the car. It was a nightmare, and I know many of you will understand just what we went through. As a nurse, I have been at the bedsides of patients receiving terrible news. I thought I know what they were going through, but until it happens to you, you really can't understand it.

Another horrible task is sharing this news with those who love us. The hardest thing I've had to do in my life was to tell my sons about this cancer. I still find myself "sugar-coating" the news I give to them. Somehow, in the few days after my diagnosis, I found an inner strength that has been with me since then. I didn't feel one bit like I was dying, so I decided I was going to live! And to live as fully as I could, with a lot of help from family and friends (insert "Rocky" music here).

Please indulge me while I share the first of my "God moments." I decided to wait to share this news with my friends at work, at least until I could discuss it without becoming a puddle. The last thing I wanted to do was break down at work.

A group of my best friends called my bluff. They knew something was wrong and asked me to share, so puddle and all, I did. One of my favorite cardiologists was there and asked my permission to look into my diagnosis. He later returned with an appointment at Head and Neck Oncology at a major specialized center in another state. When he handed me the appointment, I felt a huge sense of hope and relief. I had not been a spiritual person, but since then, I have had many moments like this, when God kind of bonks me on the head and says, "Pay attention to this! This is My work." And I am slowly learning to do just that.

My first meeting with doctors at the major center in September 2002 clarified the truth about my disease. I was not going to die tomorrow, and I may well live for many happy years. Imagine THIS scene, leaving that clinic crying and laughing, kissing and hugging. We immediately took a wrong turn that left us lost in the city for over an hour, still overjoyed and acting like fools.

Radiologists later took a close look at their CTs and thought there was something odd about my chest tumors. I had biopsies and they showed sarcoidosis. This probably accounts for much of my chest-wall disease. The adrenal tumors haven't changed a bit in five years, and are thought to be benign and unrelated to MTC.

Around this time, I found the MTC e-mail group, and have gained much knowledge and hope from it. I am so grateful for you guys!

So things were not as dire as originally predicted by my original doctors, but I have had to accept that I have advanced cancer that will kill me someday if no cure is found. I am very encouraged by the new treatments that are available, though, and am very optimistic that a cure will be found in time.

In December 2002 I had radiation to my neck, and I sure wish I hadn't. It is unlikely that it did anything to slow the course of the disease and has led to some serious problems. I now have pulmonary fibrosis, and, coupled with sarcoidosis, I have significant shortness of breath. And I had a small stroke in February of this year. CT and MRI of the head showed disease in only one small artery, and this was felt to have been damaged by radiation. Of course, I can't say that radiation may not be an effective treatment for others with MTC, but I want to honestly relate my experiences with it.

My cancer has very slowly grown to include liver mets, as well as many tiny tumors in both lungs. There is no evidence of bone mets. Calcitonin has averaged around 15,000, but been as high as 30,000. CEA runs 250- 350. I was in one clinical trial from August 2005 to September 2006. My calcitonin and CEA were at their lowest:

I am now in another clinical trial. I'm sure I'm on the placebo, however, and I hope to be on the "real thing" soon. Since my radiation mistake, I try to be very careful to make the correct medical choices for myself. Judith Orloff has a book, "Positive Energy," and she advises us to "seek the white light" in our treatment options, and in those who treat us. I try hard to do just this.

Another great thing I have read is an essay called "Cancer Brings Gifts." When I first read it, I wasn't ready for its wisdom, and invited cancer to share its gifts with SOMEBODY ELSE! But, it is true.

I have learned to treasure the gift of my life, and stop frequently to give thanks for it. I have also learned that there are people who love me and want me to stick around. That's a really nice thing to know. Cancer encourages them to show this love and I bask in it as often as possible. My life is deeper and more meaningful than ever, and I try to live it to the fullest.

I'd like to share one other bit of wisdom that has brought me comfort. My cousin's wife waited many years (since childhood) for a kidney. She finally got one that worked after many disappointments and one failed transplant. Before her successful transplant, I asked her, "Sharon, how do you stay so strong?" She said, "I allow myself 24 hours to bitch and moan over bad news. Not one minute more. Life may turn out to be too short for me, and I don't want to waste it in bed crying." I have tried very hard to uphold the "Sharon Tradition" when I get news that is bad.

All in all, I feel quite well. My worst symptom is shortness of breath, and that is secondary to sarcoid and fibrosis. I don't think I have any symptoms that are related to MTC. My most recent CTs have changed little from the original one five years ago. I am lucky that my disease moves so slowly. I have probably had MTC for a very long time.

But, I bet all of you can relate to this: wouldn't it be wonderful to someday say, "I used to have medullary thyroid cancer, but now I am cured."

Thanks for listening, and I look forward to reading all your stories.

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My husband and I were preparing to celebrate our forty-third wedding anniversary in 2004. The day before we left I was to receive my thyroid biopsy report. I had had all the tests/scans the year before and there were no problems so I was not concerned. Although I felt like something had grown (my nodule), it still was not a concern. I was retiring at the end of the school year and everything was falling into place.

WHAM! My biopsy was papillary cancer. I was told that this was very simple to eliminate with surgery and radiation.

Surgery was set for the day before Labor Day. I would be out three weeks and should not have any complications. The hardest part was telling my children who lived ten hours away. They were very supportive and had questions for the doctor who was accessible and answered all questions promptly.

Before surgery I was very open with the faculty, family, and friends. I even have a support group, which I update with each doctor visit. This proved to be very important in follow up visits. Reading their encouragement notes has helped tremendously. I worked the day before surgery. My class was stunned that I would be gone for three weeks, but survived.

My surgery went well and they were able to remove my whole thyroid. I could talk, but felt woozy. The next morning I still didn’t feel great. After another IV, which I failed to question, I went home with strict instructions about numbness around my mouth.

Sunday was a normal day, but Monday I woke to numbness around my mouth. A call to the doctor and a trip to the emergency room found me back in the hospital with calcium deficiency.

Two days later I was home again with my body producing calcium. I progressed quickly although my voice was very weak and I had no pitch. I returned to teaching using a mike and amplifier. I ordered a Chatter Vox and this was a definite asset.

The trip back to the doctor for my follow up was a shock. My biopsy was wrong, as I had Medullary Thyroid Cancer. A calcitonin test showed it was 700. A CT scan showed no tumors, but it did show an adrenal adenoma. A reference to another doctor an hour and a half away was made, and he ordered more tests. My calcitonin was up to 1,000 and all my other tests were normal.

I was told I was sporadic and my options were to have a neck dissection or a second opinion. I was not opposed to surgery, but the doctor wanted me to have a second opinion.

Off to another surgeon three hours away. He ran his own tests where my calcitonin was now 1,092. He scheduled a liver biopsy which was positive in one node. I have had several PT scans, MRI, and CT scans, but no tumors show on any of these. Because of changes in the way the calcitonin is read my number is now close to 600. My CEA has gone up from 84 to 115. I feel very fortunate that this is not high and I am able to live a normal life.

I did have some trying moments and did a great deal of research. I also had an excellent support group. I don’t think about it as often as there is too much living to do and no time to worry about things I can’t control. Maybe a drug on a clinical trial will be on the market before my tumors get large enough to show on scans.

There is hope. People have lived for forty years. In forty years I will be over 100!

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I was diagnosed with sporadic medullary thyroid cancer in 1999. My physician’s assistant found a small lump during an appointment when I had strep throat.

I had a complete thyroidectomy and it was determined to be medullary after that initial surgery. My first calcitonin test came back at 4,000 with normal being a 4. My local surgeon thought that must be a lab error, but the 2nd test came back at 4,100. I needed more surgery and went on the Internet for more information.

I found the medullary e-mail support group, which had been founded earlier that year. Through the contacts I made, I found out about a surgeon in another state who specializes in MTC. When I questioned my local surgeon about CEA, and he told me not to believe what I read on the Internet, I chose to have further treatment by someone with MTC experience.

The specialist did my neck dissection about six months later. He wanted the scar tissue to heal before he reopened that area. (This was about the longest six months of my life.) A laparoscopic liver biopsy was done, but no MTC was found. I had about 30 nodes removed from my neck. Six were positive. My calcitonin following the surgery dropped dramatically, but did not go back to normal.

In the seven years that have followed, my calcitonin has slowly gone up, but at last check, was still less than 100 pg/mL. I’m thrilled that it has stayed low, but admit that I worry a lot about “will it come back” and hate the annual calcitonin test.

While my cancer seems to be in check, I have had a much more difficult time regulating my TSH levels. My TSH was an all-time high of 36 following my neck dissection, followed by a period where it fluctuated down to 0.10 then back up to 4.5, like a ping pong ball! I had a lot of physical symptoms, weight gain, muscle aches, dry skin, but the worst was my emotional state of mind. The TSH fluctuations sent me way over the deep end into anxiety and depression. It took some time to feel like myself again. Even seven years later, I still have a hard time keeping my levels steady, but I'm getting more disciplined about taking my pills on a schedule.

In 2002, I had a healthy pregnancy and birth of our third daughter. Medullary really didn’t make a difference in being pregnant. My TSH went out of whack again, but it was in the normal range after several medicine increases. I was able to breastfeed her and she was a healthy baby.

In 2005, I became a co-facilitator for ThyCa Raleigh, a local support group for thyroid cancer survivors. It has been a wonderful experience to meet so many incredible people who have been touched by thyroid cancer. I’ve learned a lot about RAI, and thyroglobulin and all the other jargon that goes with papillary and follicular, the more common types of thyroid cancer. I’ve found that our treatments may be a bit different after the thyroidectomy, but our experiences are very similar in terms of everyday living with thyroid cancer. It has been a most meaningful and satisfying experience for me.

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Excerpted from Sue’s Vandetanib Presentation to the U.S. Food and Drug Administration on December 2, 2010

My Medullary thyroid cancer symptoms started about 25 years ago…but I wasn’t diagnosed until 2003. When my husband and I told our 9-year-old daughter, we pointed out it is often a slow-growing disease. However, we both knew I’d had it for at least 20 years. In August, 2003, I had an 11-hour surgery performed by 2 surgeons, which included a total thyroidectomy.

Because of the cancer’s pervasiveness & as the pain increased, I felt I needed to do something. I tried targeted radioactive injections in Switzerland and another trial. Nothing helped and my health continued to deteriorate while the pain increased. My breathing became taxed as more tumors appeared in the pleura, spine and ribs. Finally, two lobes of my right lung collapsed. I had to start taking pain medication although I had an enormous fear of becoming addicted to pain meds.

By 2007, the pain was so severe that a pain pump was surgically implanted in my abdomen but complications with a spinal leak and replacement of the catheter further stressed my body. I weighed less than 90 pounds and I had to go to the emergency room a few times just for fluids. I was extremely lethargic and ready to give up. I knew I was running out of time and I felt that I might not be able to hold on another year.

Because of a ThyCa support group on Yahoo, I learned about “vandetanib”. It seemed to have wonderful effects for many who were on the trial. As soon as I was able, I entered the trial. When I enrolled, my weight was still below 90 pounds, my pain was very high and I was taking all kinds of pain medication. I had stopped driving and needed help getting around; needing wheelchair assistance in airports. I had many respiratory infections and had to have my lungs drained frequently.

Within just one month of being on VANDETANIB, my severe and newest pains had completely ceased. Within just a couple of months, I discontinued all of my oral pain medication and started reducing the dose in the pain pump. I continued having the medicine in the pain pump reduced until it now contains saline…I am completely off pain medications.

My tumors have shrunk and some have calcified and my lungs have not had to be drained in a very long time. My calcitonin has gone from between 58,000-60,000 to approximately 5,000. I am back in the gym exercising, I’ve watched my daughter turn 16 and enjoy watching her soccer games again. I’m even looking for a job! None of this would be possible if it had not been for the grace of God and vandetanib.

I wholeheartedly request the approval of vandetanib so that others may have another chance at life, like I have.

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