Update: October 15, 2007

Dear Friends I haven't met yet,

For the past few years I have not been able to keep up with maintaing this website or answering emails. I apologize to everyone who feels let down by me.

In the summer of 2006, I was diagnosed with breast cancer. I opted for very aggressive surgery and had a double mastectomy followed by chemotherapy and reconstruction.

Then on October 1, 2007, I was diagnosed with cancer AGAIN. This time, it was in my ovaries, but the cancer cells are not ovarian. So now I am in the middle of testing, trying to locate the source of the cancer. I will begin chemotherapy on October 22nd.

What are the odds of one person getting struck by lightning THREE TIMES?! I don't know, and I don't really care. I just want to find this cancer and kill it. I'm in for a tough road but I have the strength of will to fight like hell.

Please pray for strength and courage for me and my family. Thank you.

And as always, I am looking for the good that can come from the bad. My message to you is please check out those lumps that scare you. Don't wait. Waiting only makes the worry last longer, and gives a bad thing more time to get worse. Take charge of your own health!

Maybe someday I will have the energy to write about my breast cancer and this latest cancer. But until then, I hope this site gives thyroid cancer patients some help and encouragement.

Peace and love,
Megan

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About My Thyroid Cancer

I wanted to include my cancer story here so other patients would feel like they're not alone. But as I began typing, it felt very awkward to be writing about myself. So I decided to change the format and write it in the third person. Here is my interview with me! <grin>

I'd like to stress that this is the story of my cancer ordeal. It is not necessarily typical of what other people go through. Everyone's experience is different. As they say on the Internet, "YMMV", which means "Your Mileage May Vary". This is just my story...

Megan Stendebach was diagnosed with papillary thyroid cancer in September, 1997 at the age of 35. She discovered the lump in her neck by chance. "I was driving one day and happened to touch my neck. I felt a lump by my voice box and immediately thought, 'This is serious'." (In 1975, one of her brothers found a lump on the back of his neck, and died of lymphosarcoma 10 months later in spite of aggressive treatment. He was 16 years old.)

Megan saw her family doctor right away who assured her, "Don't worry, it's probably a cyst. Women get them all the time. You'll be fine, but let's do an ultrasound."

Megan remembers, "I was relieved, of course, but the realist in me wanted to know what the worst-case scenario could be. I wanted to be prepared." The doctor explained that the worst case would be cancer, but he added that thyroid cancer was so rare he had never even seen it in many years of practicing medicine. "Don't even worry about it", he said.

In spite of the doctor's reassurance, Megan and her husband waited anxiously over a weekend for the results of the ultrasound. On Monday they got the news that there was a nodule in Megan's neck. That word was frightening.

She was referred to an endocrinologist but was told that the soonest she could be seen was in two weeks. The thought of waiting that long was terrifying because the nodule had grown noticeably in just one week, but the doctor's receptionist insisted that there were no appointments available.

Megan's husband, Steve, asked a doctor friend to intervene. That doctor called the endocrinologist directly, who then agreed to see her the next day.

Six fine needle aspirations (FNAs) confirmed their worst fears: Megan had papillary thyroid cancer. "I remember waiting at home for the doctor to call me with the results. I was scared to death and vacuuming like crazy, trying to do something to keep from falling apart. But the noise of the vacuum drowned out the phone, so I missed the doctor's call! A while later, my husband called me, saying the doctor had reached him and given him the news. As soon as Steve told me it was cancer, I started to cry and shake. He asked me to get a pen and paper and write down the details. He repeated what the doctor had told him, about this being the easiest cancer to treat, and if you have to have cancer, this is the one you want. At the time, that statement was a bit of a consolation. But hearing that I had cancer was still terrifying, no matter how great the statistics were."

Scheduling the surgery quickly proved to be a challenge. Megan and her husband felt that the surgery needed to be done immediately because the lump had grown from the size of a small lima bean near her voice box to visibly pushing out of her neck. But when they met with the surgeon, he wanted to wait a week. "When I asked him why, he said he couldn't possibly get approval from the insurance company plus schedule the surgical suite and the anesthesiologist any sooner. I said, 'Try!' The doctor shot his nurse a look, and she went out of the room to see if she could arrange it. A few minutes later she came back and said I would have surgery the next day."

Megan had a total thyroidectomy. Two tumors were found in one lobe: 1.8 cm and 1 cm. A bad reaction to the anesthesia made recovery difficult. She remembers being afraid to move her head for a week because of the pain. "I know it sounds silly, but I was almost afraid that my head would fall off! I've heard other patients say that too. Having your throat cut is really frightening."

Six weeks later, she was given 150 millicuries (mCi) of radioactive iodine (RAI) and was kept in isolation in the hospital for 2 days. Megan is one of the minority of patients who experiences unpleasant side effects from radiation: nausea, lethargy, diminished sense of taste and saliva production, and swollen salivary glands along her jaw. She jokingly refers to RAI as "Really Awful Ick!"

For months, Megan tried to work with her endocrinologist to find the right thyroid hormone dose for her, but she never felt well. Her frustration with their doctor/patient relationship grew as the doctor dismissed her symptoms, saying they were all in her head, that she was "doing too much", and because she was "a woman with female hormones". Every time she saw him, she pleaded with him to change her dose, but his reply was basically that it didn't matter how the patient feels, the important thing was what the laboratory numbers said. Her friend, Mary Shomon, author of Living Well With Hypothyroidism, has experienced the same attitude from physicians. Mary's motto echoes the frustration of many thyroid patients: "We are not lab values!"

After months of trying to get the doctor to change her thyroid hormone dose, suddenly he did. When she asked him why, the doctor nonchalantly said that thyroid cancer patients need to have their TSH suppressed. At that time, Megan didn't understand all the details, so she did some research and found out that he was right. Thyca patients must have their TSH suppressed in order to keep any remaining healthy thyroid cells or cancerous cells from becoming active. But the doctor had made a mistake. Megan should have been on a suppressive dose all along. "I'm kicking myself for not having done more research sooner. I should have learned all I could about my disease right away, but instead, I trusted the doctor to take care of me. That was my mistake."

In addition to the doctor's condescending manner, Megan was annoyed with his unhelpful, unfriendly staff, and the long waits for appointments. It was common to wait two hours just have blood drawn by a nurse. She remembers, "I was feeling so terrible, so fatigued and upset, that I couldn't even find the energy to stand up for myself anymore. And that's not like me! I knew I needed to find another doctor, but I just couldn't do anything about it."

Then one day she happened to meet a young woman who told her about an endocrinologist in a neighboring city who was respectful, listened to her patients, and cared about the way her patients felt. Megan made an appointment right away and drove 85 miles to meet this doctor.

"The doctor was amazed that I would drive so far to see her", Megan remembers. "But I told her that she came recommended as someone who would listen to her patients and would respect the fact that they know their bodies, and that was the kind of partner I was looking for."

"After studying my records and listening to my complaints, she asked, 'Do you mind if I change your dosage?' I could have kissed her, I was so happy! After months of fighting with my old endocrinologist to change my dose, here she was asking my permission to change the pills! I knew I'd found the right doctor."

Getting up the courage to change doctors was difficult but in retrospect she wished she had done it much sooner. When Megan called the first doctor's office to arrange to have her records transferred, she had to explain her reasons for leaving his practice. That was difficult. The next day, the doctor himself called. It was intimidating to talk to him, although for the first time, Megan found he really listened to her.

She explained that she needed a relationship with a doctor where she felt like they were partners. She told him that he did not seem to respect the fact that she knew her body well and she told him she was not comfortable with him. She voiced her frustration with his staff, and told him of the many times she had to wait hours to simply have blood drawn. The doctor agreed that perhaps they weren't suited to each other and he wished her well.

Now Megan drives 85 miles to see her new endocrinologist and new nuclear medicine doctor. The drive is worth it, she says, because she finally feels like she is part of a team. Her new doctors treat her with courtesy, are willing to listen to information she finds on the Internet, and they respect the fact that she is in tune with her body. "After all", Megan jokes, "My body and I have been together for a long time!"

A year after Megan's first RAI treatment, her new doctors found that the cancer had come back aggressively (or perhaps never really left in the first place). She had a second dose of 150 mCi of radioactive iodine. Again, she experienced the nausea, lethargy, and swollen salivary glands. It was during this hypothyroid phase (off thyroid hormone pills for weeks) that she discovered she could rewrite the words to songs and have them relate to thyroid cancer. "I've didn't know I could write lyrics until I went hypo," she recalls. "It was like my brain changed. Things seemed clearer to me, everything was hilarious and the rhymes just flowed."

She wrote her first thyca song, "The Twelve Weeks of Hypo Hell" to the tune of "The Twelve Days of Christmas". Several more songs sprang out of that trip to "hypo hell", as thyca patients call it. "If there is a silver lining to being hypo", she says, "This is it!" (See the Songs & Humor Page for the lyrics to all of her songs.)

The following year, tests showed that a small amount of cancer still remained in her neck. Her nuclear medicine doctor presented her case at a conference. "I admire my doctor for asking his colleagues for their opinions. It's like having even more experts on the team." They decided to try a larger 250 mCi dose of RAI. Megan remembers the fear she had about getting another dose of radiation. "I always said I will do whatever it takes to beat this cancer, but every cell in my body was screaming that I didn't want to be poisoned again -- that's how sick I get from RAI."

She wrote the eerie song "Hotel Isolation" (based on the Eagle's song "Hotel California") and "Glowing From The Treatment" (a funny take-off on "Leavin' On A Jet Plane") while waiting for her RAI treatment. "I posted those songs on the outside of my isolation room door so that the hospital staff could see them. I could hear the nurses through the closed door, talking and laughing about the lyrics. One asked if she could share the words with her nursing students so they could learn what it is like to go through RAI. I was thrilled."

The side effects from her third dose were worse than ever before, but she knew that the few weeks of sickness would be worth it. "RAI is the best treatment against my type of cancer so there was no question in my mind that I had to keep trying it."

Megan and her family spent the next 12 months hoping and praying that it had finally worked. And in September, 2000, they finally got good news. Megan's scan and thyroglobulin blood test showed that the cancer was practically undetectable. Megan wrote to her friends on the Internet that after three years of fighting papillary thyroid cancer, she had finally won a battle.

In January, 2002, Megan got more good news. She had her second clean scan. "I am so excited! Two in a row is a really good sign! Now my doctor says I can wait two years until my next scan. What a relief!"

She will continue to have blood tests every six months and scans every few years. "This disease has a way of coming back years later so I'll be monitored for the rest of my life. I'll do whatever it takes to keep it under control, but meanwhile, I'm out there having fun!"

Megan believes that "sometimes bad things are just going to happen to us no matter what we do. That's the kind of world we live in. But it's how we deal with the bad situations that makes us who we are. I believe it's our job to find whatever good we can in the bad. I know it's hard to do, but having a positive attitude can give you courage and strength."

Megan Stendebach lives in San Antonio, Texas, with her husband, Steve, and their Golden Retriever, Sage. They are very proud that their son Erik has just begun his college years at Trinity University.

Megan has sung her songs at three ThyCa conferences. To date, she has written more than a dozen songs about thyroid cancer. She hopes to produce a CD of the cancer songs someday. Click here to read the story behind the thyca songs.

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• Every year, the Thyroid Cancer Survivors' Association hosts a weekend conference for patients, their caregivers, and healthcare professionals. For more information, please go to the ThyCa website at http://www.thyca.org and click on "Conferences".
  
  
• If you ever want to talk to other patients, I urge you to join the on-line support group. Just go to the ThyCa website and click on "Support". That site also has great patient information, links to other helpful sites, and many other resources for patients and their families. I encourage you to check it out.
  

  Megan