Follow Up Care For Thyroid Cancer Survivors

The worst is over. You had surgery, radioactive iodine and the scare of a lifetime. The doctor says you are "cured," what now? 

You need regular checkups after treatment for thyroid cancer. Even when there are no longer any signs of cancer, the disease sometimes returns because cancer cells remained somewhere in the body after treatment.

Your doctor monitors your recovery and checks for return of the cancer with blood tests and imaging tests. If thyroid cancer returns, it is most commonly found in the neck, lungs, or bones.

Also, checkups help detect health problems that can result from cancer treatment. People treated with radioactive iodine therapy or external radiation therapy have an increased chance of developing other cancers later on. If you have any health problems between checkups, you should contact your doctor.

People treated for papillary or follicular thyroid cancer have blood tests to check the levels of TSH and thyroglobulin. Thyroid hormone is normally stored in the thyroid as thyroglobulin. If the whole thyroid has been removed, there should be very little or no thyroglobulin in the blood. A high level of thyroglobulin may mean that thyroid cancer has returned. Your doctor helps you get ready for a thyroglobulin test in one of two ways:

• You stop taking your thyroid hormone pills for a short time: About six weeks before the thyroglobulin test, your doctor may change the type of thyroid hormone pill you take. About two weeks before the test, you stop taking any type of thyroid hormone pill. This can cause uncomfortable side effects. You may gain weight and feel very tired. It may be helpful to talk with your doctor or nurse about ways to cope with such problems. After the thyroglobulin test, you can take your usual thyroid hormone pill again.
• You get a shot of TSH: Your doctor may give you a shot of TSH. If any cancer cells remain in the body after treatment, TSH causes them to release thyroglobulin. The lab checks the level of thyroglobulin in the blood. People who get this shot don't have to stop taking their thyroid hormone pill.

People treated for medullary thyroid cancer have blood tests to check the level of calcitonin and other substances.  

In addition to blood tests, checkups may include one or more of the following imaging tests:

• Ultrasound: An ultrasound exam of the neck may show whether cancer has returned there.
• Whole body scan: To get ready for the whole body scan, you either stop taking your thyroid hormone pill for several weeks or you get a shot of TSH (as described above for the thyroglobulin test). Most people need to avoid eating shellfish and iodized salt for a week or two before the scan. Your doctor gives you a very small dose of radioactive iodine or another radioactive substance. The radioactive substance is taken up by cancer cells (if any cancer cells are present). Cancer cells show up on the scan.
• PET scan: Your doctor uses a PET scan to find cancer that has returned. You receive an injection of a small amount of radioactive sugar. A machine makes computerized pictures of the sugar being used by cells in the body. Cancer cells use sugar faster than normal cells, and areas with cancer look brighter on the pictures.
• CT scan: A CT scan may show whether cancer has returned.
• MRI: MRI may show whether cancer has returned.

Cancer Survivor: The Transition from Oncology to Primary Care

I have a genetic autoimmune disorder known as mixed connective tissue disease  and I was very lucky to have had some great doctors working with me when I went through leiomyosarcoma. My father was equally lucky to have some top-notch physicians and oncologists during his cancer war also. After it was all over, however, I no longer needed  to see my oncologist on a regular basis, and there was no recommended “survivorship” plan or support group to help me figure out what to do next. 

Like most cancer survivors I went back to my regular doctor for follow-ups  and treatment of my autoimmune disease, but I felt like something was missing. Although I believe in my heart I have one of the best doctor s ever, she simply wasn’t able to support me emotionally or to help me with the long-term side effects of  cancer treatment effectively in a way that felt useful to me and I often felt like an experiment gone wrong.  

It is not unusual, after cancer treatments are complete, for most patients to be transferred back from their oncologists back to their primary care physicians. Most cancer survivors will agree that their primary care physicians are not always prepared or equipped for dealing with them as cancer survivors simply because that is not part of their medical training.

Study Shows Doctors Need More Training in Survivorship

A recent study found that many doctors, particularly primary care doctors, don’t feel very confident in their ability to take care of cancer survivors. Oncologists, too, believe that primary care physicians aren’t adequately educated for the task. Regular doctors, for example, tend to “over-test” for cancer recurrence because they’re not sure how much is too much. They may also not be fully prepared to deal with post-treatment concerns like lasting side effects,  psychological support, and managing other related diseases and conditions.

“More training and education of cancer survivorship is critical for the primary care physician and the oncologist,” says Julia Rowland, Ph.D., director of the Office of Cancer Survivorship and the National Cancer Institute.

Suggestions for a Smooth Transition

What can you do to help make the transition from your cancer-care team to your regular doctor go more smoothly? The authors of the study suggest the following:

• Meet with your oncologist after treatments are over and ask for a summary of the care you received, plus an outline of recommended follow-up care that you can then take to your regular doctor.
• Ask about what aspects of your care the oncologist will take care of, and what aspects your regular doctor should take care of.

In addition, here are some other things you can do—from my experience!

• If something feels “off,” ask about it. You know your body better than anyone.
• Ask your oncologist or doctor about important post-treatment care like support groups, counseling, massage, acupuncture, and other types of therapies. He or she may know about reputable programs that offer services for free or for reduced rates to cancer survivors.
• If your regular doctor isn’t communicating well with you, consider transferring to one who will.
• Check with a dietician or nutritionist to get on top of your post-treatment diet.
• Get into a regular exercise program—one you enjoy doing.
• Take responsibility for your own care. Most of us feel depressed, overwhelmed and confused after treatments are over. Get the help and the support you need to make it through this difficult time by attending a support group, seeing a life coach who specializes in cancer survivorship, and by surrounding yourself with other survivors who understand.

Did you find it difficult to talk to your regular doctor after cancer treatments? Please share your story.

Source: Georgetown University Medical Center. “Doctors differ in how best to care for America’s 12 million cancer survivors.” ScienceDaily, 25 Jul. 2011. Web. 26 Sep. 2011.

Faces of Thyroid Cancer: Julie Nance

Thyroid cancer survivor Julie Nance shares the story of her treatment at Sylvester Comprehensive Cancer Center, part of UHealth -- University of Miami Health System. Carla was treated by David Arnold, M.D., associate professor at the Miller School of Medicine.

Often No Symptoms Alert Thyroid Cancer Patients

Thyroid cancer doesn't often alert you to its presence until a lump in your neck becomes noticeable. Some lumps are harmless growths called nodules, while others can be due to conditions unrelated to the thyroid gland.

The thyroid gland is located in the front of the neck, so you might think that if a tumor is growing the symptoms would be obvious. Unfortunately, thyroid cancer doesn't usually cause any symptoms — until the cancer has grown large enough to show itself in the form of a lump. Complicating the picture even more, not all thyroid growths are thyroid cancer.

"A lump in the thyroid is the most common sign of a thyroid cancer," says Matthew Old, MD, of The Ohio State University Medical Center in Columbus. Often the lump is hard to the touch and appears on the front or side of the neck.

It may be easier to notice the lump while you're eating — in fact, someone else may spot the lump moving up and down, says Mira Milas, MD, director of the Thyroid Center at the Cleveland Clinic in Ohio. And that may be all you notice in the early stages of thyroid cancer, says Dr. Milas.

But don't brush it off as nothing suspicious or serious; pay attention to the lump and how it changes. "Any persistent lump (lasting over two weeks) in the thyroid or neck should be promptly evaluated," says Dr. Old.

Variations in Thyroid Cancer Symptoms

"Symptoms between individuals can vary widely," adds Old. Most people have no symptoms, while others can have thyroid cancer symptoms significant enough to be life-threatening, such as breathing problems.

The vast difference in symptoms from person to person really depends on what type of thyroid cancer they have. Papillary thyroid cancer, the most common type, rarely causes any symptoms at all. But anaplastic thyroid cancer, which is extremely rare and deadly, can cause significant symptoms and life-threatening issues, says Old.

Advanced Thyroid Cancer Symptoms

"Thyroid cancer can be quite advanced before causing any symptoms," says Old. Signs of advanced thyroid cancer may include:

• Swollen neck
• Swollen thyroid gland
• Lump on the gland
• Losing weight
• Coughing
• Pain in the neck
• Hoarse voice
• Difficulty swallowing
• Difficulty breathing

Could It Be Something Else?

It's important to know that even a lump in your neck doesn’t automatically mean that you have thyroid cancer. Because most cancers of the thyroid do not cause any symptoms, it’s more likely that the lump is a benign thyroid nodule — a non-cancerous growth.

"Most lumps or nodules of the thyroid are not cancer. The thyroid may enlarge and develop into a goiter, which is [also] not cancer," says Old. "Many things can cause lumps in the neck, ranging from benign congenital abnormalities to infections to cancers not related to the thyroid."

Even something as harmless as a toothache, a sinus infection, or some other infection could mimic thyroid cancer symptoms, says Milas, adding, "People who have lymphoma also have lumps or masses in the neck that might mimic thyroid cancer."

Testing, which includes an ultrasound of your thyroid gland to show the location of the lump, is the only sure way to determine if you have thyroid cancer.

Last Updated: 09/28/2010

Finding Reliable Health Information on the Web

The explosion of information on the internet has certainly benefited people with cancer, but has also added a good dose of confusion and new pressure. With thousands of websites offering cancer information, knowing which ones to trust can be difficult.

If you don't have a computer at home, most public libraries have computers with free internet access for your use. If you're not familiar with how to use computers or the internet, ask a friend, family member or staff person at the library to help you.

Where to begin ?

• A good place to begin is always with your health care team. Your doctor, nurse or social worker can tell you about websites or books related to your cancer type that will provide credible information. 

• Government institutions, like the National Cancer Institute (http://www.cancer.gov/), provide trustworthy, current information on cancer staging, new treatments, side effects management and more.

• Nonprofit organizations can refer you to helpful websites such as the following: 

1. CancerCare 

   http://www.cancercare.org/

   
   
2. Association of Cancer Online Resources 

   http://www.acor.org/

   
   
3. American Society of Clinical Oncology http://www.peoplelivingwithcancer.org/

   
   
4. University of Pennsylvania Oncology 

   http://www.oncolink.org/

Can I trust this website ?

What is the purpose of the website - educational or commercial ?

Educational websites, which are generally sponsored by nonprofit organizations, provide information about many different treatment options. Commercial sites, like those sponsored by pharmaceutical companies, will provide excellent information about their own products (drugs) and/or research procedures or clinical trials but are not a good place to learn about the full range of treatment options.

What is the website's or blog reputation?

Chances are, if you or your doctor or other professionals you trust have heard of the website, it's reliable.

What is the source of the information ?

Generally, nationally known cancer centers, medical schools, large nonprofit organizations, and government agencies provide the highest quality information but a number or new comers such as SJCCF are reliable information contenders with the best of them.

Is the information relevant to you ?

A good website provides information that speaks to your needs.

Can you identify the authors of the material?

If they are not experts in the field or if they are anonymous, their information could be misleading or inaccurate.

Are the links relevant and appropriate for the site?

Websites that refer you to commercial sources of information should be rejected because they may not be providing you with all the information you need to make an educated well informed decision.

Remember the internet is not a substitute for individual medical care. Use credible information you find on these sites and this blog to help you communicate more effectively with YOUR DOCTOR

Genzyme Update: Thyrogen Supply 2012

Genzyme is reporting in a statement today that the global supply of Thyrogen will remain limited but improve for 2012. Genzyme anticipates meeting levels that approach 60-80% of that delivered in 2010 for the upcoming year. US supplies will likely be towards the upper end of this range. 

Genzyme recommends that physicians seek to obtain Thyrogen for their patient through their usual suppliers but wait until it is secured before scheduling Thyrogen use in their patients.

PDF DOWNLOAD

Genzyme update on supply of Thyrogen® 
(thyrotropin alfa for injection)

FREE WORKSHOP: Safe Self-Care For Cancer Patients & Survivors

WHEN: January 26, 2012   6:00PM to 8:00PM

WHERE: The Fine Grind - A Coffee Bar  

                 101 Newark Pompton Turnpike, 
                 Suite 8, Little Falls NJ 

WHAT: Free Workshop Safe Self-Care For Cancer Patients & Survivors

Author and Cinco Vidas Founder Britta Aragon will be the guest speaker in this lecture on topics like safe self care during and after cancer, managing difficult life transitions after cancer, how to care for compromised skin and more!

Britta Aragon has been featured at Gilda’s Club Cancer Community Support Center, Life and Liberty Cancer Events, and more, she enjoys spreading the word about raising the standard of safe self care. We hope you will join us!

Find out “how chemical smart” you are and how to keep away from products that contain harsh and potentially harmful ingredients. You'll leave with more knowledge so that you can make decisions about your own self care.

FREE REGISTRATION  http://www.facebook.com/events/238344769561572

About Our Guest Speaker: Britta Aragon, natural beauty expert, author and entrepreneur, discovered her passion for promoting safe self-care through her experience as a caregiver during her father's eight-year battle with cancer. A survivor herself of Hodgkin’s Disease at the age of 16, she sought solutions for the difficult side effects her father suffered on his hair, skin and nails, but was disheartened by the lack of straightforward information or effective products. 

She learned that even when she tried products specifically touted for “sensitive skin,” they were often laden with potentially harmful chemicals that actually irritated her father’s fragile skin. For the first time, she became acutely aware of how devastating the side effects from drugs and medical treatments could be. 

Inspired and determined to help others, Britta Aragon founded Cinco Vidas in 2008, and dedicated her work to her father's legacy. A lifestyle brand of products and services, Cinco Vidas provides expert resources and safe solutions to those experiencing side effects from chemotherapy, radiation or medication, and those who experience skin conditions like eczema, sensitivity and chronic dryness. With the goal of fostering prevention and encouraging change, Cinco Vidas also works to increase awareness of potential carcinogens in food, personal care products, and the environment. 

Britta lectures on Safe Self-Care for Compromised Skin in the New York Metro Area,  where she shares all the knowledge she has gathered as a result of her unique personal experience and years working as a makeup artist and skincare expert. Her blog, Cinco Vidas, is a popular resource and community support center for those dealing with medical treatment side effects and difficult skin conditions. She is also the author of WHEN CANCER HITS, a hand-holding guide for the newly diagnosed cancer patient, and the creator of CV Skin Labs, a safe, non-toxic range of products to soothe and repair damaged skin without harmful chemicals. 

Her book When Cancer Hits was released in September 2011, and CV Skin Labs launches February 2012. Both will be available through her website at www.cincovidas.com

Common Foods that May Contain Carcinogens

New Year's is just around the corner! Many of us starting thinking about our New Years Resolutions for Health and Fitness without a second thought to cancer causing ingredients in our diet but recently all the medical talk shows and magazines are increasing addressing the issue of cancer causing foods and food ingredients. 

If you "Google" cancer causing ingredients that search turns up about 2,160,000 in about .59 seconds! With all the talk about the bad-for-you ingredients in foods, you may be wondering what’s just iffy (like that doughnut in the morning) and what’s really bad. Are there really foods that could be setting you up for  cancer in the future?

Though science can’t yet tell us if eating hot dogs increases the risk for cancer, for example, they can tell us that some ingredients in hot dogs may be carcinogenic. Here are the top ten foods to stay away from for that reason alone.

1.  Potato chips and French fries. According to the National Cancer Institute, acrylamide is a chemical used for industrial purposes that is found in many foods, with particularly high levels in some potato chips, French fries, and other foods cooked at high temperatures. (Baking, roasting, and frying can all produce acrylamide.) Based on animal studies, acrylamide is considered a probable human carcinogen. Though the Environmental Protection Agency regulates levels of acrylamide in drinking water, there are currently no guidelines on acrylamide in food itself. Boiled potatoes have been found to be free of acrylamide.

2.  Hot dogs and deli meats. Many of these contain nitrites as preservatives, which during the cooking process, can form carcinogenic N-nitroso compounds. These compounds have been associated with several different cancers. One study published in Cancer Causes & Control, for example, found that children eating more than 12 hot dogs a month had nine times the normal risk of developing childhood leukemia. Any cured meat may contain nitrites, including lunch meats, bacon, ham, and even cured fish. And so far, “organic” and “natural” hot dogs aren’t much better—an article in The New York Times noted they often contain nitrites, too.

3.  Canned foods. Cans used to store foods are often coated in a type of plastic that’s made with bisphenol-A (BPA), a chemical that’s been linked to breast cancer and prostate cancer because of its hormone-altering capabilities. Though not labeled a carcinogen on its own, evidence suggests that it increases cancer susceptibility through changes to DNA. A recent study found that people who ate canned soup for five days straight saw their urinary levels of BPA spike 1,200 percent compared to those who ate fresh soup. Buy foods in boxes, jars, and BPA-free cans.

4.  Chicken and apple juice. Recent studies have found both chicken and apple juice sold in the U.S. can contain small levels of arsenic, which has been linked to skin, lung, and bladder cancer. Some apple juices were found to contain more than the amount deemed safe in drinking water. The good news is that as a result of an FDA study on chicken, the manufacturer of the chicken feed laced with arsenic said it would pull the ingredient off the market. The debate on juice is still ongoing. Carefully research the brands you buy.

5.  Restaurant grilled or pan-fried chicken. A study published in Nutrition and Cancerfound that when 100 samples of grilled chicken from seven popular chain restaurants contained PhIP, a known human carcinogen. The restaurants where the samples were obtained included Applebee’s, Burger King, Chick-fil-A, Chili’s, McDonald’s, Outback, and T.G.I. Friday’s—and watch out. Some of the samples tested included the grilled chicken that’s used on salads.

6.  Donuts, rolls, and buns. Most of these are made from white flour, and white flour may contain potassium bromate, a food additive used in the bread-making process that has been found to be carcinogenic in animal studies. The Center for Science in the Public Interest has petitioned the FDA to prohibit the use of potassium bromate, but so far it is not restricted in the U.S. Donuts are also full of sugar and trans fats, so either cut them out completely, or eat sparingly. Look for “potassium bromate” or “bromated flour” on the ingredient label. Brands like Orowheat, Entenmann’s, Pepperidge Farm, and Pillsbury have switched to bromate-free processes. Supermarket chains like Giant, Jewel, Ralph’s, and Von’s also do not use bromate.

Do you have tips for avoiding carcinogens in food? Please share!

References Sources:

National Cancer Institute Fact Sheet, “Acrylamide in Food and Cancer Risk.” 

William Neuman, “What’s Inside the Bun?” The New York Times, July 1, 2011. 

Ruth A. Keri, et al., “An Evaluation of Evidence for the Carcinogenic Activity of Bisphenol A,” Reprod. Toxicol, 2007; 24(2): 240-252.

Jenny L. Carwile, et al. “Canned Soup Consumption and Urinary Bisphenol A: A Randomized Crossover Trial.” The Journal of the American Medical Association, November 23/30, 2011, Vol. 306, No. 20, pp 2187-2283. 

Kristie M. Sullivan, et al., “Detection of PhIP in Grilled Chicken Entrees at Popular Chain Restaurants Throughout California.”Nutrition and Cancer Volume 60, Issue 5, 2008. 

Y Kurokawa, et al., “Toxicity and Carcinogenicity of Potassium Bromate—a New Renal Carcinogen,” Environ Health Perspect.1990 July; 87: 309-335.