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

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I went for a follow-up visit to my Endo the other day.  My results from my blood work and scan were good (yay!). However, he wants me to get Thyrogen shots and blood work so he can make sure we are not missing anything. The shots and blood work are supposed to give us a better look at whether those thyroid cancer cells are really gone or just hiding.  Managing Thyroid Cancer with Thyrogen is filled with information about Thyrogen and a good resource to have on file.  I found it to be very helpful.

I had the thyrogen shots in 2009 to help prepare my body for the RadioActive Iodine scan.  The shots were covered by my health insurance company.  Since each shot is around $1,200 and I got two shots, I was very happy that I didn’t have to come up with $2,400 to cover the cost.  This year, my Endo sent the Thyrogen order to the local CVS pharmacy.  I got a call from the Pharmacist telling me that it was NOT covered by my insurance company. What?!!!  This year, it seems my health insurance company is going to fight me on the coverage.

It really upsets me to know that many people would settle with that answer and charge the $2,400 for the shots on a credit card that they probably already owe a few thousand dollars on already.  The lesson here is DO NOT SETTLE.  FIGHT FOR YOUR INSURANCE COVERAGE!! At least that is what popped into my mind when I was told it was not covered.

First I called my insurance company, United Healthcare to see why it WAS covered last year, but NOT covered this year.  The UHC Rep asked me if it was processed through the prescription side or the medical side.  I had no idea. She looked it up and said that it was not showing on the prescription side.  She put me on hold for several minutes, then came back and transferred me to someone in the Claims and Benefits department for further assistance.

The Claims and Benefits Rep was pretty clueless.  She was not sure what Thyrogen was and asked me to repeat myself several times.  I think she was stalling so she could fumble through the “UHC Customer Services Manual” 🙂 Next, she put me on hold for about 10 minutes, which is to be expected.  (I think they do that sometimes hoping the caller will hang up!)  Then she read me a couple of paragraphs of health insurance coverage lingo about my plan. I started wondering why I even called.  I am perfectly capable of going online and looking up my coverage.  I was calling because I thought speaking to a live person would be helpful.  But instead it increased my blood pressure…a lot! After 22 minutes, I ended up with no update or additional information.

BUT I DIDN’T GIVE UP. I did a little digging to see what I could find on my own.  I called my contact from Johns Hopkins  to see how they got it covered last year.  She told me that they go through ThyrogenOne, which is part of Genzyme, the manufacturer of Thyrogen.  ThyrogenOne is set up to send prescription referrals to the most appropriate specialty pharmacy based upon the individual patients insurance.  Each insurance company usually contracts with one or two specialty pharmacies so it is important that the Rx referral get to the right place based upon your insurance.  ThyrogenOne’s phone number is 888 497 6436, option 1, they would be able to provide you with additional details and possibly the prescription form your physician needs to fill out and fax in.  First find out if your doctor has a ThyrogenOne T1 Reimbursement Form.  That is what they need to get the order going.  If not, your doctor will need to call Thyrogen One directly to find out how to get the form.

It all started to make sense. My Thyrogen order was placed by my Endo with the local CVS pharmacy and so it was not covered.  Interestingly enough, I learned that PharmaCare, a specialty pharmacy division and subsidiary of CVS Corporation has been selected by Genzyme to be a national distributor of its drug Thyrogen(R) (thyrotropin alfa for injection), a diagnostic tool in the management of patients with well-differentiated thyroid cancer. Oh really!! So the local CVS was not selected to distribute the Thyrogen and therefore it is not be covered by my insurance company.  However, if the Thyrogen was ordered through the CVS specialty pharmacy division, PharmaCare, it would be covered? The plot thickens.

I got in touch with my Endo and let him know the details about the coverage of my Thyrogen shots.  He did have the forms for ThyrogenOne, but tried going direct through the local pharmacy first because sometimes that works. He will contact ThyrogenOne and get them the information they need for the order.  I’m hoping it will be covered, but I won’t know for sure until next week.

One more note…I discovered that since May 2010, there is restricted availability of Thyrogen in the US. See for yourself in this write-up from the USDA site CDER Statement to Healthcare Professionals: Restricted Availability of Thyrogen.  Isn’t it amazing what we can find out these days with access to the internet?

My Endo is on vacation this week.  So I won’t know the final outcome until next week (fingers crossed.)  I don’t know what will happen.  I do know that I need to save my energy for this little battle with the insurance company.  I won’t focus on it until I hear back from my doctor or insurance company next week.  There is no point in allowing it to take up space in my head this week.

I’m sure many of you have gone through similar battles with your insurance companies.  Let’s help one another and share information that might allow others to get a claim covered.  I will keep all of you posted when I get the next update.  Until then, please share your comments and any other good tips or advice that might help another cancer survivor win the health insurance coverage battle!!!

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!

Wings of Hope Weeks 5 & 6 Update         

12/26/09 – 1/10/10

*Written by out Team Captain Chris Kidwell Prestano.

Happy New Year from Wings of Hope! We hope the holidays treated you well and that the New Year will bring you all that you wish for. We are still the number one team for this event and our resolution is to continue raising money for cancer research. We have 95 days left until the race on April 16th and we are 40% of the way to reaching our goal of $5,000.00.

We would like to thank Bill Fanaras for his generous donation to our team. I had the privilege of meeting this gentleman at ThyCa’s (Thyroid Cancer Survivors’ Association) conference in October 2009.

We would also like to welcome our newest team member, Brian Ferrina. He is the tenth person to sign up for Wings of Hope.

Now that the holidays are over, we are going full swing into our fundraising efforts. We still need to borrow camping equipment for the relay event, so if you know anyone who has tents, sleeping bags, coolers, etc. please ask them to help us.

Angel McMellin is making progress on setting up our bake sale, so please contact her if you would like to help.

Until next week,

Wings of Hope

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.