I’m sitting in the waiting room at Labcorp listening for my name to be called.  Another “post-cancer follow-up” tour has begun.  I’ve been doing this tour twice a year now for three years.  The first stop on the tour is at Labcorp where I get my blood work done.  This is the stop where I begin to notice the worry and thoughts about “what if” come into my mind.   The second stop on the tour is at the radiologist’s office where I get a thyroid ultrasound.  The tour ends at my endocrinologist’s office where we go over the results and go from there. (They just called my name.  I need to go back to the next waiting room now!)

Ok, I’m back.  I must say, that was an uplifting experience.  The lab tech who drew my blood greeted me with a smile.  She was upbeat and has a positive attitude.  This is usually not the case.  I noticed a box on her workstation of Crayon Bandages.  I asked her what they were.  She walked over, took out a red one, stuck it over the gauze on my arm and said, “Here you go.  Let’s make this fun!” 

As I left Labcorp, I thought about how attitude goes a long way in life.  It is so easy to get caught back up in the cancer attitude and feel down when going back for medical treatment of follow-up procedures.  I tend to forget that there is a choice.  It doesn’t have to be a negative experience.  It all starts with my attitude. 

I kept the red crayon bandage and put it in a place where I would see if everyday.  It will now serve as a reminder for me to check my attitude.  It’s the little things like a red bandage that can deliver a big message and lesson in life.

A couple of weeks ago I had a painful reminder from my salivary gland that the RAI (radioactive iodine) treatment is starting to take a toll.  Almost two years ago, I took RAI (I-131) to kill any remaining cancer cells lurking around in my thyroid tissue.  This was done a couple of weeks after my thyroidectomy.  I didn’t have any issues with my salivary glands during that time.
If it’s not one gland, it’s another.  Instead of my thyroid gland being diagnosed with cancer, now my parotid gland has been diagnosed with sialadenitis.  Oh joy!  At this point, it is hard to say if my sialadenitis of the parotid gland is a direct result of the RAI or not.  There is not too much research on the long-term effects of RAI to date.  However, I did find a case study in the JADA called Salivary Gland Injury Resulting From Exposure to Radioactive Iodine that was very informative.  According to this study, “In the majority of cases, when a patient receives therapeutic doses of 131I, the patient develops an asymmetric radiation sialadenitis. Obstructive symptomatology is to be expected. Oral dryness occurs less often and is related directly to high dosages and the passage of time. Clinicians should be aware of the condition to avoid unnecessary diagnostic and therapeutic measures.”
Back to my story…
The pain and swelling continued for several days.  I finally went to the Otolaryngologist (Ear, Nose and Throat (ENT) doctor) last week and was told to drink a lot of water, suck candies, massage the salivary gland area and put a warm compress on it. The goal is to keep the saliva flowing and wash away any blockage. I did all of those things and it got better. I went a couple of days without swelling or pain. Then this morning I had a few bites of breakfast and the pain came back with the swelling. Nooooo! Not again!! I took Advil, massaged the area and put on a warm compress. It helped. But a girls gotta eat, so by lunch time I tried again.  It didn’t go too well. I called and left a message for my ENT and am waiting to hear back. This is very frustrating. I’m trying to keep it in perspective. Things could always be worse. I’m grateful that the thyroid cancer is in remission. Since that is the reason the RAI was even done, I need to remind myself that it did work.
My life is really good! However, eating is kind of important, so I’m hoping my parotid gland gets better soon!  Until then, I will be massaging away, chain chewing gum and sucking candies, drinking lots of water and sharing my journey with all of you.
I’m going for my ThyCa ultrasound scan later today. The cycle of fearful thoughts are waking up in my mind.  They overpower me at times.  I wish there was a volume button, so I could put the negative ones on mute!  The thoughts are spinning around over and over.  The typical ones are…What if the cancer came back? What if it spread? Will I need another operation? I don’t want to go through the LID and RAI again. When will this end? Will I be able to get through the cancer battle again?  Am I a burden on friends and family?  When will I get the results?
One after another, the thoughts pop into my mind.  The reality is that I am taking care of myself and going for my regular follow-up visits, blood work and scans. I’m taking my medicine.  I talk about how I feel good and not so good. I blog about it, which helps.  I get helpful comments from my readers and that fills my spirit.
At this moment, I am a cancer SURVIVOR!! All of the thought are simply thoughts.  They are not reality.  I don’t have to give them power. The rest is unknown, fear of the unknown. So for now, I will stay in the present moment.  Yeah, that feels much better. I just needed to adjust my mind.  Ah, a sigh of relief. Calmness washes over me.

It’s easy to crunch the numbers on thyroid cancer and assume it is a disease fast on the rise. Incidence has more than doubled since the early 1970s, and for women, it is the cancer with the fastest-growing number of new cases.

But not every statistic tells the obvious tale. Despite the increase, thyroid cancer — a very treatable disease that develops in a butterfly-shaped gland in the neck — is still relatively uncommon.

Many people develop benign lumps, known as nodules, in the neck, but only one in 20, or less than 45,000 cases a year, are malignant. Even fewer patients have an aggressive form of the disease, which has a survival rate of nearly 97 percent after five years and results in an estimated 1,690 deaths each year. Over the last few years, however, studies showing there has been a significant increase in incidence, and even mortality, in certain groups have caused much debate in the scientific community.

“I don’t think there is any question that there is an increasing incidence of thyroid cancer,” said Dr. Kenneth Burman, chief of the endocrine section in the department of medicine at Washington Hospital Center in Washington, D.C. “But it is not that simple. The question is whether or not it is related to detection and radiological studies, or if it is related to an authentic rise in thyroid cancer.”

It is a question that still remains largely unanswered. Evidence from the Surveillance, Epidemiology and End Results database, a registry of cancer cases that is kept by the National Cancer Institute, leaves little question that there are more cases of thyroid cancer today than three decades ago. But the more important question, as Dr. Burman points out, is whether these statistics indicate a true rise in the disease or are simply a result of better diagnostic tools.

Over the last three decades, ultrasound and fine-needle biopsies have helped diagnose thousands of cases that would never have been found before. In many cases, nodules are discovered by accident during another medical investigation.

A study published in The Journal of the American Medical Association first brought this issue to light in 2006. Researchers concluded that the reported 140 percent increase in thyroid cancer from 1973 to 2002 was simply a result of “increased diagnostic scrutiny.”

They argued that a true increase in incidence would be reflected in every stage of the cancer. But the study showed that 87 percent of the increase was from small papillary thyroid cancer tumors — the most common and treatable type of thyroid cancer — that were less than two centimeters in size. Many of these cases, the researchers say, would never have caused any problems. In fact, studies have shown that thyroid cancer is found in nearly 4 percent of all fine-needle aspiration biopsy specimens.

“These cases have been there all along,” said Dr. Louise Davies, assistant professor of surgery in the division of otolaryngology, head and neck surgery at Dartmouth Medical School. “We just didn’t see them until now. Understanding this requires that you think about the word ‘cancer’ in a different way than we usually do. You can have increased rates of incidence without changing the number of people who die.”

But the mortality rate is a little more complicated than that. Survival rates, after five years, increased 4.7 percent in women, who are three times as likely to develop the disease as men, from 1974 to 2001. In men, however, the annual percentage change in thyroid cancer mortality increased significantly, by 2.4 percent, from 1992 to 2000 — the highest jump of any cancer. That is one reason many other experts argue that diagnostic tools are not the only factor.

“I think it is an oversimplification to say the increase in diagnosis is from the overuse of technology and only relates to small tumors that are insignificant,” said Dr. Steven Sherman, medical director of the endocrine center at the University of Texas M.D. Anderson Cancer Center in Houston. “There is a component that relates to increased technology, but until we can do a better job at predicting the outcomes for individuals who develop cancer we still need to treat each case.”

Physicians are fairly clueless about what else could account for this mysterious rise in incidence. Exposure to radiation from the Chernobyl nuclear power plant accident in 1986 and radioactive fallout from nuclear weapons testing in the 1950s have long been linked to thyroid cancer, but they would not account for all the new cases.

Regardless of the reported increase in small tumors, the standard of care for thyroid cancer remains the same as it was two decades ago. Patients must undergo a thryoidectomy, a surgical procedure that removes all or half of the thyroid gland. Afterward, many patients also require a radioactive iodine treatment, which kills any remaining cancer cells.

Dr. Bryan McIver, a physician in the division of endocrinology, diabetes, metabolism and nutrition at the Mayo Clinic in Rochester, Minn., said of the surgical default, “Even though the evidence does not support that it is beneficial, there is an increasing trend in the U.S., and probably worldwide, to treat all thyroid cancers in the most aggressive way.”

As a result, surgeons like Dr. Davies think the increase in diagnosis does patients with small tumors a disservice. “I don’t think it is helpful when patients pick it up by accident,” she said. “It distracts them from the problem they came in with and leads to unnecessary treatment. The mortality rate of papillary thyroid cancer is lower than the surgical complication rates.”

Since thyroid cancer has long been thought of as a disease that requires surgery, experts are starting to rethink how they approach the rapidly increasing number of small tumors.

“Sometimes I think we are doing more harm than good with these small tumors,” Dr. McIver said. “But there is also going to be a subset of these small tumors that are caught early and would have caused a problem. It’s hard to ignore a diagnosis of cancer.”

This article is from the New York Times

This experience was another reminder that my health is my responsibility.  I am in the process of scheduling my Thyrogen shots with my Endo.  I got a call back from one of the assistants.  She asked me if I made my appointment for the PET scan.  PET scan?  What PET scan? The last time I met with my Endo, we discussed Thyrogen shots and blood work, but a PET scan was not discussed.  I asked her if she was sure.  She said that I needed to get a PET scan the same day that I get the blood work.  I asked her to have the doctor call me.

It didn’t seem right, but I made an appointment for a PET scan.  Then I felt really overwhelmed when the latest appointment they had was 2:00PM on Thursdays.  I need to fast 4 hours before the scan and the actual scan is 75 minutes long.  I had flashbacks to when I was in that dark tunnel for my RAI scan.  I could even here the click, click, click noise and the nurse telling me to hold still each time a picture was taken.  Nooooo…I don’t want to go through that again.  Something just didn’t seem right.  So I called back and cancelled the PET scan appointment.

A couple of hours later, my Endo called me back and said, “So why do you need a PET scan?”  I said, “I was wondering the same thing.  Why did you add a PET scan?  We never discussed it.”  He said that he never added it.  I told him that his assistant called and told me that I needed one.  He apologized and said that she must have gotten carried away.  It was not in my paperwork.  (At that point, I could have gotten really angry about this confusion.  This is my body, my health, my time, my fear, my stress and NOT my mistake!!!) I felt a wave of relief come over me.  I really did not want to have a PET scan.  He told me that we were going to do the Thyrogen and blood work and see what the results were.  Then we can go from there.  That sounded good to me.  He apologized again for causing me any worry and inconvenience.

After I hung up, I remembered one of the many lessons that this cancer experience has taught me.  Life is precious.  Cancer feeds on fear, anger, worry and negative emotions.  There was no need to hold onto what “could haves” and  “what ifs.”  Here is an example of what I mean. “What if” I didn’t find out that the PET scan was not needed? I “could have” wasted a day of work going to get that PET scan.  “What if” my insurance didn’t cover it?  I “could have” been stuck with the medical bill. (And on and on and on…)  These thoughts do not serve me.  They feed cancer.  It is not worth getting upset.  The reality is that people are human.  They misread files and tell patients that wrong things at time.  But no damage was done.  So I am letting it go!

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I am all about promoting thyroid cancer awareness month in September.  That is why I was super-excited when I found out that Dear Thyroid had a blog tour to help spread the word.  They posted the following on their site:   “During the month of September, Dear Thyroid is going on a blog tour to promote awareness for thyroid cancer. For this blog tour, we’ll be asking bloggers to write a post on their own blog that addresses some questions provided by Dear Thyroid regarding thyroid cancer and thyroid cancer awareness. On the day we are scheduled to make a “stop” at your blog, Dear Thyroid will post a brief description of your blog along with a link from our website to yours.”
September 2, 2010 is the day the link to this post that you are reading at this very moment will be featured on the Dear Thyroid site.  So pleeeeease continue to show your support by sharing this post with others and making a “virtual” difference.  (Thank you!!)  Below are the questions from Dear Thyroid and my answers.  And away we go…
  • What kind of thyroid cancer were you diagnosed with? How many years have you been a survivor?

I was diagnosed with Papillary Thyroid Cancer in October 2008.  I believe that I became a cancer survivor the moment after I was given the diagnosis.  That is when I started my fight.  Some consider themselves cancer survivors once they become cancer-free, which for me was May 2009.  After going through this battle, I see anyone diagnosed with cancer as an immediate survivor.

  • September is thyroid cancer awareness month. What does that mean to you? Why do you think awareness is important? How do you spread awareness?

To me, thyroid cancer awareness month means joining forces to spread the word about prevention, early detection and the facts about thyroid cancer.  One of the reasons I started my Thyroid Cancer Survivor blog was to spread awareness about thyroid cancer and to share my journey as a cancer survivor with others.  Awareness is important because it gives people a better chance to check their neck and find thyroid cancer earlier.

  • Many thyroid cancer patients have been told, “If you have to get cancer, thyroid cancer is the one to get.”  What do you think of that statement? When you’re told this, how do you respond?

When my doctor told me that I had papillary thyroid cancer, I was shocked.  I remember him telling me that if I had the option to pick which cancer I would want, I would want thyroid cancer.  At the time, it made me feel better.  I didn’t know too much about thyroid cancer back then.  I guess my doctor was trying to make me feel better and take some of the fear away.  Now I know that cancer is cancer.  One is not better or worse.  No type of cancer should be minimized.  I’ve also heard people refer to thyroid cancer as the little “c”.  It’s not worth getting upset about.  That only feeds those cancer cells. I usually smile and let them know cancer does not come in a “lite” version.

  • Dear Thyroid is constantly working to dispel the myth that thyroid cancer is the good cancer or the easy cancer. What other myth would you like to dispel regarding thyroid cancer?

Some of us get to go through the radioactive iodine treatment, people asked me if I glowed in the dark.  It was tempting to say yes, but the truth you don’t glow in the dark.  That is a myth!

Another myth is that once the cancer treatment is over and you get a clean scan, you can put it behind you. Thyroid cancer survivors have to go back every six months the first few YEARS for scans and blood work.  There is a 30% recurrence rate, so it is very important to stay on top of it.  Thyroid cancer is never over.  That is the myth.  It is a lifelong battle because those sneaky thyroid cancer cells are always trying to multiply.

  • What one thing would you tell the world about thyroid cancer?

This cancer journey has given me a new perspective and appreciation for life.  I am so grateful to be a survivor.

  • What advice would you give to a newly diagnosed thyroid cancer patient?

You are not alone.  You will get through it.  Learn all that you can about it (Tips for ThyCa Newbies and ThyCa is a good place to start).  Be an advocate for your health. You are responsible for your health and to speak up.  Never be afraid to ask the doctor a question.  Talk about how you are feeling.  Find people who have gone through it. Use it as an excuse to follow a dream and do something you have always wanted to do!

Dear Thyroid is a thyroid support community and literary brand. Our goal is to connect patients with each other, to create awareness for thyroid diseases and cancers, and to give all thyroid patients a voice. We come together as a united front to invoke change on behalf of thyroid patients worldwide. Thyroid patients are invited to submit letters to their thyroids, thyroid rants and raves, and other literary creations. Help us to create awareness for thyroid diseases and cancers by wearing your disease on your sleeve and by requesting one of our free awareness bands. Visit DearThyroid.org to learn more!

Summer is almost over. (frown) The back to school bug is in the air.  September is just around the corner.  You know what that means? Yep. You got it.  Thyroid Cancer Awareness month is almost here.  So I’m taking a moment to be proactive and get this virtual pep rally going!

Let me start by giving you some of the history behind Thyroid Cancer Awareness month.  According to the Thyroid Cancer Survivors’ Association (ThyCa), “Thyroid Cancer Awareness Month is a worldwide observance, sponsored and initiated by ThyCa: Thyroid Cancer Survivors’ Association. It began in 2000, as a week in September. In 2003, it expanded to the whole month of September…Thyroid Cancer Awareness Month promotes thyroid cancer awareness for early detection, as well as care based on expert standards, and increased research to achieve cures for all thyroid cancer. People and organizations in 55 countries around the world take part.

As a thyroid cancer survivor, I am on a mission to spread awareness and do my part to help others.  This blog gets the word out about thyroid cancer, cancer survivorship and more.   Are you playing a part to spread awareness?  If you need some tips, take a look at ThyCa’s 10 Tips on How to Help.