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

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!

 

I’m proud to report that over 10,000 people have stopped by to visit the Thyroid Cancer Survivor blog (10,047 to be exact.)  My hope is that each and every person got some helpful information, hope, motivation and encouragement.  I started this blog as a way to give back to others diagnosed, fighting or in remission from cancer and the people who love us.  And it’s really catching on which fills my heart.

THANKS to all of you for visiting, leaving comments and letting others know about your experience and this blog. Reading your comments has really given others the gift of feeling understood and not alone (including me.)  There is a lot of information on the internet about cancer that can cause more harm than good.  I like to keep my posts real, but not based on fear.  Fear feeds cancer.  I write from a place of hope and love.  And in turn, I believe my visitors respond with positive, supportive comments, which in turn helps us all.

Let’s go for 100,000 visitors!  Together we can reach this number and beyond.

Life rarely goes according to plan. If you have recently been
diagnosed with thyroid cancer, and if you are like most of us,
you will find yourself flooded by a range of emotions including
fear, disbelief and anger.

The following steps are suggested to help focus your thoughts
and actions, in order to make the best informed decisions
for yourself in the least stressful way.

1) FIND A SPECIALIST
If you don’t already have a thyroid cancer specialist, ask your family
doctor, or members of this group for referrals (most thyroid cancer
patients are monitored by endocrinologists rather than oncologists).

While some people don’t see this doctor until after their surgery,
it’s helpful to meet with them beforehand, and let him/her coordinate
surgery, treatment, etc. (see “Finding a Doctor”)

2) LEARN ALL YOU CAN ABOUT YOUR DISEASE
(BUT NOT NECESSARILY ALL AT ONE TIME)

Knowledge is your greatest asset when facing down fear and when
making decisions about your treatment. Obviously, by joining this
group, you’ve made a huge step in that direction.

While it’s helpful to have a sense of the bigger picture, don’t try to
learn everything at once. Focus on each step of the treatment as
you’re going through it, and then move on to the next one.
In a few months, you’ll be an expert.

3) MAINTAIN A THYCA JOURNAL
I can’t emphasize this one enough.
While you are going through this journey, it may seem that you
couldn’t possibly forget anything that is happening.
Trust me – unless you have an exceptionally powerful memory
(and even if you do), you will forget details.

In addition to being a wonderful outlet, a journal is an excellent
reference for your unique thyca experience.
When things are looking bad, it’s nice to be able to see that you
have felt bad before and come out of it. When you are feeling great,
it’s great to put that in writing, too.

This doesn’t have to be anything formal, but will be an invaluable tool
as you make your way through your treatments and follow up. You
may want to keep a separate small notebook intended for doctors’
visits (Cynthia: ” … it is essential to have a notebook with notes
from all your doctor’s visits in it. My notebook is small enough that
I can fit it in my purse (although my purse isn’t small). This gives me
the ability to write questions down at any time during the day, no
matter where I am.”)

Keep track of all the doctors you have seen, questions you want to
ask them, as well as their responses and instructions.
Keep track of your favorite coping tricks, so you can refer to them
again. (As a thyca friend says, if you don’t do this, you’ll have to
ask your friends what the heck you ate while on the LID* and that
can be embarrassing ….. :- )

*LID – low iodine diet

Some things to keep in your journal:
– doctors’ names & phone numbers (most handy if it’s on the first
page or inside cover)
– questions for the doctors, with room for their answers
– very brief summary of each appointment (including date)
– favorite resources (internet links, books, articles, etc. – either
your own, or recommendations from others)
– medications, dosages, conditions under which they are taken
(empty stomach, etc.), and how you feel with that protocol

– LID menus & favorite recipes
– medical reports received (this should include all of them, including
blood tests)
– tips you want to try when you reach another stage of your treatment
– records of your treatment, including dates and number of millicuries
of each RAI, TSH levels and thyroglobulin (Tg) levels
– on one page, a timeline of appointments, scans, tests, treatments
– while you are hospitalized, list doctors and staff members who came
in, and what they did to/for you

NOTE: Your journal can also be a place for your family and friends
to jot down their thoughts and well wishes. Particularly while you’re
hospitalized, they may also be able to write down things you may be
too out of it to notice.

4) ALWAYS GET COPIES OF ALL YOUR REPORTS
This includes blood tests, surgical reports, scans, etc. You probably
won’t understand everything contained in the reports when you first
get them, but you will in the future, and having your reports is an
important part of understanding your disease and your treatment.
(It also implies to your doctors that you are serious about your care
and they’d better be too!)
You can ask your doctor’s office staff to give you copies of lab
reports, radiology & pathology reports and even the final summaries
from your surgeries. Many doctors recommend getting copies of films,
too.

5) PARTICIPATE IN YOUR TREATMENT
It’s important to consider yourself a partner in your medical care.
Learn about your diagnosis, the treatment and follow up protocols.
Be prepared to ask questions of your doctors.
If you are given instructions that don’t make sense to you, get an
explanation. If you think your doctors’ instructions contradict
generally accepted protocol, and you can’t get a reasonable explanation
for this variation, it may be time to consider finding a new doctor, or
at least a second opinion.

6) GET SUPPORT, GIVE SUPPORT
Support comes in many forms (this group, local support groups, church
or work acquaintances, friends & family). Remember that by being part
of a thyca support group, you are not only getting invaluable
information and support from people who have been there, you are also
giving invaluable support to others who need your perspective. This is
a very healing thing in itself; it will come back to you in spades.

If you’re not getting the support you need at home, remember that you
may have to ask for it. Friends and family members may want to help,
but don’t know want to do or say. They are scared, too, and may need
reassurance that you will be okay, that you really are getting the best
of care, and that what you’re going through is perfectly normal. (see
“Asking for Help” and “Talking to Children about Your Cancer” )

7) DON’T GET CAUGHT UP WITH PHRASES SUCH AS “THE GOOD CANCER”
Most of us have heard some variation of that phrase, which is clearly
intended to be reassuring, but which rarely is. We all know there’s
no such thing as a good cancer, although the truth is that when
compared with other cancers, the survival statistics and treatment are,
for the most part, better than most.
And of course, we know it’s the cancer with the best support group 🙂

Unfortunately, some people find that phrases such as “the good cancer”
diminish their experience to the point that they feel they don’t even
have cancer, or that they’re not entitled to participate in such
empowering experiences such as cancer walks. Or, some people feel
guilty for feeling bad, because, after all, they don’t even really have
cancer. Please don’t let this happen to you.

Think of your diagnosis as a temporary detour, not a change of
direction, and continue to plan your future as if this detour hadn’t
occurred. More than likely, you’ll be forever changed by your cancer
diagnosis and treatment, but difficult as it may be to believe, chances
are it will ultimately be a positive change, and believing that you WILL
recover (and remembering that you had a life with goals before your
diagnosis) will contribute greatly to your recovery and your spirit.

Don’t allow your cancer to become the sum total of your life, but
only a part of it. Always fill your life with other diversions,
however mundane (or, hopefully not).

8) MAINTAIN YOUR SENSE OF HUMOR
It’s not always easy, but if you have any doubt that the worst events
make the the best stories later on, see the humor index for tales of
members’ hypo blunders and other true confessions. If you need
inspiration in seeing the lighter side, consult the list of 100 funniest
movies, and see how many you can check off.

9) NEVER, NEVER, NEVER, NEVER GIVE UP

As you read letters on this, remember that we are all in
different stages of our thyca journeys, and that we all take different
paths. Some of us have a single surgery and RAI treatment, and
are free of cancer forever, while others require more time, and
sometimes repeated treatments.

Sooner or later, however, most of us will have the joy of “clean” scans
and blood levels, indicating that we are, indeed, cancer free. Look
forward to these moments, and enjoy every single one of them, but
remember that vigilance is paramount. Thyroid cancer has been known
to return even 20 years after initial diagnosis, so don’t ever let down
your guard.

OTOH, also remember that there are many thousands of people who
have had thyroid cancer, who consider themselves to be fully cured,
and who are living full and joyous lives. Their follow-up thyca tests
are scheduled along with – and have no more import than – all of their
other regular medical exams.

10) THE FIRST YEAR IS THE HARDEST

No matter how low you may be feeling at any given moment,
remember that there is light at the end of the tunnel, that tomorrow
will be a better day. There are people who love you; there are those
of us who understand what you are going through, and who are there
for you when you need a shoulder (in a perfect world all those traits
will be in one person, but that’s why we have many persons to help
us through an imperfect world).

It may be hard to imagine now, but there will come a day when you’ll
forget all about the scar on your neck and when you’ll need to mark
your calendar to remember to schedule your follow-up tests.

Until that time, be prepared to be patient. Especially in the first
year, it seems that everything takes too long to happen. You’ll probably
feel like you’re always waiting for something – test results to be
completed, blood levels to be where they need to be, medication
dosages to be finally stabilized.
And when all that finally happens, you’ll be waiting to plan your first
series of follow-up tests. Nothing moves fast enough in the beginning.

Through all this, remember to find time to live your life.

Pay for 10, get this extra!

11) GET TO KNOW YOUR PILLS
Whenever you have a prescription renewal filled, examine
the pills to be sure you were given the correct ones.
Mistakes happen, and you never know when they might
happen at your pharmacy.

*I did not write this post.  It is from http://www.bird-on-a-line.com/2009/01/thyroid-cancer-tips.html “TOP 10 TIPS FOR THYCA NEWBIES”


 

                                            as of 2.28.10
With only 47 days left until the relay, Wings of Hope has raised over $3,000.00! Thank you to those of you who have contributed to our success and have ultimately put us one step closer to a world without cancer!

This week is crunch time for our team and we need all the support we can get.

Thursday, March 4 from 6 a.m. to 1 p.m.

What’s going on…
Wings of Hope is holding a bake sale at Johns Hopkins Outpatient Center, 601 N Caroline Street, Baltimore, MD. Angel is furiously baking away in preparation for Thursday.

What we need…
1. We need volunteers to help us run the event any time from 6 a.m. to 1 p.m.
2. We need more baked good donations.

Please contact Angel at angelmcmellin@live.com or myself at chrisp730@yahoo.com if you can help.

Also, please update your attendance status by Tuesday at: http://www.facebook.com/event.php?eid=305306920993&index=1

Thank you to…
– Kim Thompson who is donating her famously yummy red velvet cupcakes.
– Johns Hopkins Outpatient Center for allowing us to host our bake sale in their facility.

Friday, March 5 from 1 p.m. to 4 p.m.

What’s going on…
RFL JHU Committee is hosting a Birthday Bash to raise money for the American Cancer Society at the Homewood Campus Beach. Wings of Hope will be distributing thyroid cancer awareness materials at the event.

 
                                         as of 2.28.10
What we need…
Volunteers to help us distribute pamphlets. Please update your attendance here: http://www.facebook.com/event.php?eid=298322843386&index=1

Thank you to…
ThyCa for donating our awareness literature.

Saturday, March 6 at 11:30 a.m.

What’s going on…
Wings of Hope is having our first (and only) team meeting prior to the April 16th relay at M&S Grill on Pratt Street in Baltimore, MD.

What we will be discussing…
– Introductions
– Our bake sale
– Fundraising efforts
– Logistics for April 16

What we need…
A final headcount by Thursday, March 4th. Please update your response on facebook: http://www.facebook.com/event.php?eid=457912620132&index=1

Important Information For Team Members…
In order to get an official Relay for Life participant shirt, you MUST raise $100 by March 10, 2010!

Again, if you haven’t all ready, I encourage our team members to log in to their participant centers on the ACS website and start updating their personal pages for donations. There is also an application on facebook that will help you with meeting your $100 personal goals. Both of these tools will provide donators with official receipts from the American Cancer Society.

Online Fundraisers Update…

As of 2.28.10
 
Our first fundraiser for the $25 Macy’s Gift Card ends today. Unfortunately, no one on our team raised $500 in the month of February to win the contest.

Our second fundraiser is going strong thanks to our wonderful ladies at Dear Thyroid. We are encouraging the Dear Thyroid community to form fundraising teams to help us in our goal for the American Cancer Society. The first team to raise $3,000 wins TEN free “Invisible No More” bracelets; the first team to raise $1,500.00 wins FIVE free bracelets; the first team to raise $750.00 wins THREE free bracelets; and the first team to raise $500.00 wins TWO free bracelets. For more information, contact me or visit us at http://main.acsevents.org/goto/wings2010. The contest ends March 16th!

April 16th Update…
We at Wings of Hope are very excited to announce that our newest team member, Rona Taylor, will be providing our team with some amazing food the night of the relay. Thank you, Rona!

Thank you to every one for supporting us, our fundraising efforts, and our goal of living in a world free of cancer.

Until next week,

Wings of Hope

*This update was written by our team captain Chris Kidwell

 

Dear Thyroid posted my letter to my thyroid on their site at http://dearthyroid.org/rip-my-thyroid/ and I encourage you to take a visit over to see it.  Below is the beginning of my Dear Thyroid letter…

Dear Thyroid,

It’s hard to believe that a year has gone by without you regulating my metabolism, hormones, body temperature and energy level.  You were a good gland and did the best that you could do with the hand you were dealt.  We spent over 35 years together, yet I never knew you until …(To read the rest, go to http://dearthyroid.org/rip-my-thyroid/)