“Cancer comes into a life and worms its way in. It’s the unspoken presence every day of the person’s life—‘the cancer’s back’ or ‘in remission’ are common references in the life of the person with cancer. However, it continues to be the people who can fight it that make the whole disease seem beatable and worth fighting.” ~Anonymous

I was so touched by this inspiring quote, that I had to share it with all of you.  There were so many thoughts that came up for me when I read it.  As a cancer survivor, I can look back and see that it was a fight.  There were so many times that I wanted to give up, but I kept on going.  I am grateful to be in remission.  There is an “unspoken presence” ever since I was diagnosed.  I don’t feel it most days, but it is there.  It is something that I have accepted.

My hope is to stay in remission.  There is a recurrence rate of about 30% with my type of cancer.  But percentages don’t really mean much to me.  When they found my tumor, I was told that there was a 95% chance that it was non-malignant.  Regardless of the percentage, I knew in my gut that it was cancer.  When the results came back, it was confirmed that the tumor was malignant.  I was one of the people in the 5% category.  Those were not odds that I was happy about beating.  But it did teach me not to give percentages too much power.

I also learned that my health and well-being were worth fighting for.  Surviving cancer was worth the fight.  I was worth the fight!  It changed me.  I discovered my inner-voice and spoke up instead of staying silent.  I asked doctors all of my questions, instead of filtering the ones out that didn’t seem important.  I made the calls to my insurance company many times to resolve issues with coverage and billing instead paying the first bill I received.  I didn’t pay the price for the disconnect within the healthcare system.  I opened my mouth and talked about how I felt and didn’t pretend that everything was alright all of the time.  I prayed and prayed and had faith that it would all work out.  I created this blog to share my experience and help others.  In turn, I was able to get my virtual voice heard.  And to my pleasant surprise, I have gotten back so much love and support in return.

We are all worth the fight!

Advertisements

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

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.

1/29/10

One of my goals the past few months has been to write a “Dear Thyroid” letter and submit it to the Dear Thyroid site.  I finally wrote the letter!! Yay!! I’m so excited for you to read it.  I found it quite therapeutic to write.

I posted my Dear Thyroid letter called “RIP my Thyroid, August 1973 – January 2009” on my blog this week, but I had to take it down. Why? Well after posting it on my blog,  I found out that Dear Thyroid will only publish original content.  (Ok, I get it. Rules are rules!)  I do admit, I did not read all the requirements set by Dear Thyroid before submitting my letter. So I have learned my lesson 🙂

I will post the link to my letter on the Dear Thyroid site as soon as they post it. Stay tuned for details…

3/10/10 UPDATE :  Dear Thyroid still has not posted my Dear Thyroid post so I might post the letter on my blog after all. Stay tuned!

3/22/10 UPDATE TO UPDATE: Dear Thyroid posted my Dear Thyroid letter today!!! WooHoo!! Please take a looksy at http://dearthyroid.org/rip-my-thyroid/and share your comments.  Thank you in advance 🙂

Thanks!

If possible, I’d like to keep my “thyroid cancer survivor” status for the rest of my life.  That’s what I was yesterday and again today and hopefully tomorrow as well.  But to stay on top of those sneaky thyroid cancer cells, my Endo Dr. recommended a thyroid ultrasound and blood work tests twice a year for a very long time to come.  Oh Joy…NOT!

I just made my “thyroid-less” ultrasound appointment for next week.  (Since I had a total thyroidectomy last January, I now refer to it as a “thyroid-less” ultrasound.)  This will be my second time doing the six month check of my neck routine.  The first time (post-cancer) I had the ultrasound done, the technician seemed to hover over the upper left side of my neck. She smoothly glided the ultrasound wand around the gel over my neck without any cause for suspicion.  Then she got to that one spot on the left and I felt my stomach start to form imaginary knots.  It’s one of the worst feelings in the world…overwhelming fear!

The results did show some swollen lymph nodes which usually happen if you’re getting sick.  Normally there is no cause for concern, but since I had cancer, my Endo Dr. wants to see what the results show next time.  I guess that is supposed to make me feel better?  So almost six months have gone by and I have only thought about the thyroid ultrasound a handful of times.  But the occurence in the number of thoughts dramatically increased after I made that ultrasound appointment for next week.  The overwhelming flood of thoughts and feelings are back! 

At times, being a cancer survivor is like being a passenger (or hostage) on a ship sailing along the sea of the unknown.  I’m not in control of where it will go.  At times, there are lots of storms out at sea.  Then without warning, the ship sails into peaceful, calm waters.  I found myself starting to feel a little sea-sick thinking about the upcoming ultrasound.

It starts with the fear-based thoughts.  “Is there going to be a swollen lymph node on the left side of my neck again?”  “I don’t want to go through this again.”  “What if they find another nodule in my neck?”  “I’m gonna have to have surgery again.”  “I feel so anxious.”  “I can’t stop thinking about it.”  “I know the cancer is back.” “I’m going to have to miss more time from work.” “People are probably so tired of hearing me talk about it.”

Then come the faith-based thoughts.  “Everything is fine in this moment.”  “My Higher Power is right here with me.”  “I am taking care of myself by getting the ultrasound.”  “Everything is fine.”  “I’m a survivor!”  “I’m going to keep things in perspective.”  “What’s the point of worrying?”  “I am focusing on the good thoughts and allow the negative ones to melt away.”  “I have so many friends and family that love and support me.”  “I am so grateful to be alive today.”  “I’m going to live each moment to the fullest!”

So back and forth my thoughts go over the course of the day.  And as I write about it, I feel a calmness coming over me.  There’s a quiet voice that let’s me know once again that it will work out the way it works out.  Besides, it will all be done by this time next week.  Well, at least done until the next six months go by. 🙂

Since my papillary thyroid cancer diagnosis over a year ago, I have been on a mission to learn as much as I can about it.  It has also become important to me to spread awareness and help others that have been diagnosed or survived cancer.  I’ve noticed that the mainstream media often covers the “popular” cancers, but I haven’t heard anything about thyroid cancer.  So I was very happy to hear that NBC Nightly News was going to do a segment on the increase of thyroid cancer in women.

I watched the segment and thought it was interesting to hear some of the statistics.  This year more than 27,000 women will be diagnosed with thyroid cancer and 10,000 men.  The incidences in women have been increasing by an astounding 6.3% per year.

They made mention that the cause of thyroid cancer is still a major medical mystery and why women are more susceptible than men is still unknown. Scientists have long known that radiation can be a cause of thyroid cancer.  Studies last week found that CT Scans can give off more radiation than doctors are even aware of. (Well that’s extremely upsetting to learn.)

Before I go on and on, here is the actual NBC Nightly News segment on thyroid cancer in women http://www.msnbc.msn.com/id/3032619/#34516179.  I welcome you to review it and leave a comment.

The good news is that the increase in thyroid cancer is getting noticed and in turn the public is hearing about it more and more.  So awareness is spreading and that is hopefully going to cause someone who found a nodule in their neck go to the doctor sooner than later to get it checked.

Growing up, going to the doctor for our annual physical exam was taken seriously in my family.  Besides having high cholesterol, I was a healthy kid.  As I got older, I remember my doctor making comments about how my neck looked a little thick.  It seemed to change a bit in size and looked puffy in the front at times.  Dr. Malinow always checked my thyroid levels as part of the lab work during my physicals and it always came back normal.  But every year when I went back, Dr. Malinow made sure my thyroid levels were added to the lab work.  He used to say that he would rather be safe than sorry. 

In 1999, Even though the lab work came back normal, Dr. Malinow went with his intuition once again.  But this time he sent me for a thyroid sonogram.  When the results came back, there was a very small nodule on my thyroid.  Thyroid Nodule 1999 It is very common to have nodules in the thyroid and based on the shape and what he could see there was no need to do anything more than watch it.  So every few years, Dr. Malinow sent me back for a thyroid sonogram “just to be safe.”  Each time it came back and the nodule was the same size and shape.  

In 2007 after the thyroid sonogram results came back Dr. Malinow noticed a change in the shape of the nodule.  It was probably nothing, but he wanted to be “safe instead of sorry” and recommended that I go see an Endocrinologist.  I took his advice and didn’t think anything of it. 

It took about three months before the Endrocrinologist has an appointment available.  So I went on living my life and totally forgot about the nodule.  It wasn’t until a few months later when I was in the office of my new Endocrinologist, Dr. Madoff that I gave it any thought. 

Dr. Madoff looked over the thyroid sonogram and compared the notes to the notes from the previous years.  Then he said that he wanted me to go have a fine needle aspiration biopsy.  I thought, “What? Did he just say BIOPSY?!!”  I must have looked like a deer frozen by headlights.  Time slowed down.  He continued talking but I couldn’t hear anything.  I just saw his lips moving.  I kept thinking, “Biopsy goes with CANCER!!!  Do I have cancer?!!! What is going on here? Did he say biopsy?”  Then I took a deep breath.

I calmed down enough to ask him for more information about the nodule and the biopsy procedure.  He assured me that 95% of all nodules are non-malignant. That made me feel better.  But deep down in my gut, I knew that I was going to be in the 5% category.  Call it thyroid intuition, but I knew that it was cancer.  This was one thing that I did not want to be right about at all.