Scan Results

So, I was hoping to post more during my scan week, but I was busy preparing an unplanned trip to Florida to help take care of Josh's grandma & her husband.

I didn't get the results of the scan right away, and had to wait until the Monday after (3/28). The results seemed good. Compared to my scan results in July, it looks good, and the blood work looks good compared to the last one. There is a faint spot of thyroid tissue, and they'll be doing an ultrasound at my next appointment (which is tomorrow).

I'm not sure what that means, but I think that since the blood work is good, there's no problems right now. I guess we'll find out tomorrow.

Nothing too major, but still a lot more info to get. I'll let you know after my appointment what happens, when I can get all the info.

Almost done!

I really meant to write evreryday this week, but I'm a major slacker when it comes to blogging. I had my 2 TSH injections yesterday and today, and the worst of the check-up process is finally over! The first shot really burned, and my arm is still sore. The second shot, which I had today, didn't really burn it all.

I took a 3 hour nap yesterday, and a 10 minute nap today. Tomorrow, I go in for blood work & to get the RAI. Hopefully everything is going to go well, and nothing is abnormal. I found out that the coconut milk that I had had a few times I probably shouldn't have had, which is making me nervous. We'll find out in a couple days.

I'll update you on Friday after my scan!

Day 3

I am on day 3 of the low iodine diet. I decided to take an extra week and do this diet, partially so I could start on March 1 and it would be easy to remember, and partially so I can lose a little more weight. I put on everything I lost before the wedding.

So far, I'm doing well. It's only been 3 days, so it's been a pain, but not unbearable yet. I should have gotten myself a little more prepared with food, because there are some times that I don't have something I need. Oh well, I'll get myself prepared!

6 Months and 2 Days

It has been 6 months and 2 days since I've had my surgery to remove the cancer. It's hard to believe that the time went by so fast.

I'm feeling much better than I did, but still have a ways to go regarding the medication. I was depressed for about 2 months, and now that I've increased the dosage, I'm kind of in between. I feel anxious, but still have some hypo symptoms. I won't be getting blood work done again until just after January, when I FINALLY get to have insurance again.

Hopefully in the next couple months we can figure out the medicine and get it straightened out. I really wasn't expecting this part to be this hard, and it's hard asking for thoughts/prayers because they think it's all over with. It really shouldn't be, and it's been a hard 6 months, even though the hard part was in June/July. I would just love to not be exhausted after doing laundry or dishes, or anything else that takes relatively little effort.

I'll still keep you posted on how everything is going! There's not too much to update on at this point, other than blood work and medication changes, but I'll let you know what happens!

Radioactive Precautions...Again

Yesterday I wrote about an AP article a friend sent me about people not taking enough precautions after receiving RAI treatment. Today, I saw the same article on a yahoo site, and an e-mail was sent out from the ATA (American Thyroid Association) about it! I can't believe that some places don't take enough precautions before letting people in the public, and I can't believe that some people just don't care!!

The e-mail from the ATA:

Joint Statement on Radioactive Precautions Following Radioactive Iodine Therapy
October 20, 2010 

The American Thyroid Association (ATA), The Endocrine Society (TES),
the Society of Nuclear Medicine (SNM),
the American Association of Clinical Endocrinologists (AACE)

Radioactive iodine (I-131) has been used for decades as an effective treatment for thyroid cancer. Throughout this time, one important aspect of such treatment has been the protection of the public, and more specifically household contacts, from theoretically dangerous exposure to residual radiation remaining in the patient's body after treatment. The Nuclear Regulatory Commission (NRC), an agency of the Federal government, sets the rules governing this aspect of I-131 treatment and revises them periodically¹.

In 1997, the NRC modified these regulations to allow individualization of the procedure for preventing radiation exposure to the public after a patient is treated with I-131. A goal of this rule change was to avoid isolation of a patient in the hospital for prolonged periods if the patient's release to home would be safe for the patient, the patient's family and the public. This approach enhances patient satisfaction and is the current standard of medical practice.

In anticipation of the Nuclear Regulatory Commission (NRC) holding meetings this week related to the use of medical isotopes and other medical issues, Rep. Edward Markey, D-Mass., and Chairman of the Energy and Environment Subcommittee, wrote to the Chairman of the Nuclear Regulatory Commission and reported a "strong likelihood that members of the public have been unwittingly exposed to radiation from patients who are discharged after being treated with radioisotopes, and that this has occurred because of weak NRC regulations, ineffective oversight of those who administer these medical treatments, and the absence of clear guidance to patients and to physicians that provide procedures to ensure that such exposures do not occur".

The American Thyroid Association, The Endocrine Society, the Society of Nuclear Medicine, and the American Association of Clinical Endocrinologists believe that the current procedure, based on scientific evidence, is safe for patients, their families and the public when radiation safety instructions are followed (JAMA 283: 2272-2274, 2000). However, the ATA, TES, SNM and AACE would support reexamination of this issue if new data emerge that indicates concerns about public safety. Additionally, the American Thyroid Association has recently completed an examination of the current scientific evidence for any potential risks to the public from I-131 therapy of thyroid cancer. It is anticipated that the report will provide updated recommendations for best practices focusing on patient and public safety following I-131 treatment.

Our organizations are dedicated to adhering to the best medical practices for I-131 therapy so our patients, their families and the public remain safe. We look forward to discussing this important issue with relevant federal agencies. Until new regulations are released by the NRC, we recommend that physicians and patients should continue to follow current safety procedures.

For questions regarding the statement, please contact Bobbi Smith, Executive Director at the American Thyroid Association at bsmith@thyroid.org; Stephanie Kutler, Director of Government Affairs at The Endocrine Society at skutler@endo-society.org; Janette Merrill, Assistant Director, Health Policy & Regulatory Affairs at the Society for Nuclear Medicine at jmerrill@snm.org; Bryan Campbell, Director of Public and Media Relations at the American Association of Clinical Endocrinologists at bcampbell@aace.com.

RAI Cautions

The AP posted this story today about Thyroid Cancer patients and how they expose unknowing people to RAI, and can contaminate them and other things. It's a very interesting article.

Luckily, Strong Hospital was very cautious on sending someone with RAI out of the hospital, and making sure I wasn't going to contaminate people. The only thing I never thought of was the garbage setting of alarms and could possibly contaminating people.

Go check it out!

Bringing Sexy Out of the Thyloset

I can't believe it's been 2 weeks since I've put up my weak awareness post! This month has completely flown by. I was hoping to really do some awareness stuff this month, but between babysitting and getting my apartment ready, it's now the end of the month! I was going to paint my nails earlier in the week for Thyroid Cancer awareness (to show off in this post for you guys!), but I was too busy! Hopefully I'll have time today! Things have been quiet on the medical front. I failed and didn't post after my check up last week. I met with the surgeon for him to go do a check, and he says everything is good! I'm due back next June!


I came across a pretty cool blog a month or two ago. It's called Dear Thyroid, and people can write letters to their thyroids, doctors, whoever about their thyroid. I never knew what to write, but have wanted to participate some way on the site. So, when I saw that to celebrate Thyroid Cancer awareness month, they were having people do a little interview, I jumped on the chance to participate! So, here's my little interview with Dear Thyroid. Enjoy!





What kind of thyroid cancer were you diagnosed with? How many years have you been a survivor?
I was diagnosed with Papillary Thyroid Cancer. I'm not sure which stage it was, either 1 or 2. I have been a survivor for three MONTHS. 

September is thyroid cancer awareness month. What does that mean to you? Why do you think awareness is important? How do you spread awareness?
Awareness month means to show you're proud to be a survivor and happy to share your story. Awareness is important, because if we didn't try to raise awareness (for anything, not just ThyCa), then no one would have any idea anything exists, and it will make it harder to prevent, or have people think about these things. I try to spread awareness, it's hard since I really don't work or go many places right now where people don't already know. Luckily, my mom is a proud mom and shares with everyone, so she's my biggest awareness spreader. :) I try to always wear open shirts (mostly because I'm used to it), so people might notice (it's harder after the steri-strips are gone for people to notice), and I always wear my "Cancer Sucks" bracelet from Choose Hope. I've had a couple people ask me what it says or why I wear it, then I can explain. I hope someday to get a tattoo of the ribbon and butterfly.

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?
I know that people diagnosed with ThyCa hate this statement, so don't hate me when I answer: Honestly, it doesn't bother me. Heck, my doctor told me that, which I'm sure would make most people even more upset, but it comforted me. I had a VERY low stage of Papillary Cancer. All I had to do was surgery & the RAI. So for me, it WAS easy. I mean, it wasn't easy, but treatment-wise, I still have to do scans and everything, and I did have it in lymph nodes, so it wasn't NOTHING, but, compared to what a lot of other people go through (Thyroid & other cancers), I think it was "good" compared to what I could have had. I had graduated a month before my surgery, and was getting married 7 weeks after surgery. I couldn't take anything more serious. Yes, when people tell me that, I say that no cancer is easy. It's still hard, but I do tell them that I got lucky and had a very short and successful period of knowing I have it.

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?
I guess I haven't heard any other myths to dispel, but I keep reading that Thyroid Cancer grows more rapidly than any other cancer. I'm not sure why, but get checked. Even if you don't think it has to do with your Thyroid.

What one thing would you tell the world about thyroid cancer?
Tell your doctor about any symptoms you have. I went in thinking I had allergy problems, and it turned out that my Thyroid was enlarged. There was a very small nodule on it, and it's a very small chance that nodules are cancerous to begin with, let alone VERY small ones (under 1cm!) If your doctor does find something on your Thyroid, keep on top of it. Keep getting check ups. I went for a year check up, always being told that a good chunk of the population have these, and only about 5% are cancerous. They wanted to do a biopsy, so we said sure (even though I didn't want to). It was a shock to find out I had cancer, especially when I didn't expect it. You never know!

What advice would you give to a newly diagnosed thyroid cancer patient?
Get as much information as you can. Be VERY careful on the internet. Luckily, one of my friends is in med school, so she directed me to the best sites to look for information (the Mayo Clinic). Join groups like this online, so you can talk to people who have been through it before, but know that each situation is different.
Also, make sure you talk to your doctor about your surgeon. My surgeon specializes in Thyroid removals, and is the best in this area. I was the 6th scheduled on the day of my surgery before I was moved up.

Do you have a funny thyroid cancer-related story you are willing to share?
When I was going into surgery, I had my gown on and IV hooked up. Right before they wheeled me in they put on a blue cap. My brother took a picture of it, and I put it on Facebook the next day. Everyone kept telling me it could be my something blue for the wedding! I had to tell them that I woke up with out it, and I was actually disappointed that I couldn't take it home with me!

Information about Dear Thyroid to include in your post:

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!

Thyroid Cancer Awareness Month!

September is Thyroid Cancer awareness month! I know I'm about 9 days late, but either way, show your support! This is a pretty lame awareness post, but I'm really busy at the moment, and am trying to do a million different things.

BUT!

I made a group on SU2C for Thyroid Cancer (ThyCa Warriors). Please go check it out and donate. Even if it's not for Thyroid Cancer, donate.

The Important Body Scan

This morning I went in for my total body scan to see how the RAI is working.

I went right in, go the whole scan done, the neck scan, and went to wait. They said they wanted a chest picture done, so I went back and had to be put back under the machine to get a picture of my chest. I guess there was a couple of white spots on the total body scan, so they wanted to be sure there was nothing there.

After, I went back & spoke with the resident. The scan shows that the remaining thyroid tissue is taking in the RAI nicely! In 3-4 weeks, the tissue should be completely killed off! I'm so happy that this is working, and I can pretty much get past this!

I will need to be doing blood work every 6 weeks, mostly for my TSH & T4 levels for my medicine, and I'll have to repeat this scan (not the major dose week, just the first dose week) every 9-12 months.

For now, I won't update too much, definitely not until after the wedding. Just on adjustments in medicine & any new information.

The LID

The LID (low iodine diet) is something that needs to be done when taking the RAI (radioiodine) treatments. Basically, you can't eat anything in preparation of the treatments, or during the treatments. The best place to go for information is here, where it explains what you can/can't eat, and you can print off a cookbook!

General Comments

• Remember: LOW IODINE has NOTHING TO DO WITH SODIUM. The diet is a low-iodine diet, NOT a low-sodium diet. Sodium is in most foods. Table salt is sodium chloride, not sodium.
• Sodium in any form is OK, as long as it is not provided as IODIZED salt. NON-IODIZED salt is OK for the diet, as long as it is not sea salt. As noted below, you should avoid any product or ingredient from the sea. That's because sea-based products are high in iodine.
• Also, this is a "low-iodine" diet, NOT a "no-iodine" diet and NOT an "iodine-free" diet. A low-iodine diet reduces iodine consumptionc(on most diets to below 50 micrograms (mcg) of iodine per day (on some diets to below 80-100 mcg per day). The American Thyroid Association recommends that the low-iodine diet include less than 50 mcg of iodine per day. (The Recommended Daily Allowance of iodine is 150 mcg per day for adults. One teaspoon of iodized salt contains 400 mcg of iodine.)
• During your time on the diet, you may freely eat any foods that are low in iodine (up to 5 mcg per serving). There are lots of foods that you can eat. Pages 10 and 11 have lists. However, avoid foods high in iodine (over 20 mcg per serving). Also, many thyroid cancer specialists' guidelines recommend limiting foods that are moderate in iodine (5 to 20 mcg per serving).
• For recipes and a snack list, use ThyCa’s free Low Iodine Cookbook. You can download it free from our web site and print it out.
• You also can adapt your favorite recipes from your own cookbooks to the low-iodine diet. To do this, eliminate ingredients that are high in iodine, or substitute ingredients from the list of foods and ingredients that are fine on the diet.
• If you follow other dietary guidelines due to allergies, diabetes, other medical conditions, or other reasons, you can adapt your recipes and meal plans. Use the cookbook's lists and tips.

Avoid These Foods and Additives

Avoid the following foods, starting when instructed by your physician before your radioactive iodine test or treatment. Continue as instructed until after your radioactive iodine treatment (often for about 24 hours after). These foods and ingredients are high in iodine (over 20 mcg per serving, according to researchers' presentations at our conferences).

• Iodized salt and sea salt and any foods containing iodized salt or sea salt. Non-iodized salt may be used. For example, Kosher salt is okay unless the label says that it is iodized or sea salt.The reason to avoid sea salt is that all products from the ocean tend to be high in iodine.You can usually find plain, non-iodized salt next to the iodized salt at your grocer. Read the label. (One teaspoon of iodized salt has 400 mcg of iodine.)
• Seafood and sea products (fish, shellfish, seaweed, seaweed tablets, kelp). These are all very high in iodine and should be avoided.
• Foods or products that contain these sea-based additives: carrageenan, agar-agar, algin, alginate, nori (these food additives are seaweed by-products).
• Dairy products (milk, cheese, cream, yogurt, butter, ice cream, powdered dairy creamers, whey, casein, other dairy products). Note: Nondairy creamers often have iodine-containing ingredients, too. A study published in 2004 in the Journal of Clinical Endocrinology and Metabolism reported on tests of 18 brands of milk in the Boston, Massachusetts area. It reported that 250 ml of milk (about 8 ounces, or 1 cup, or 16 Tablespoons) contained from 88 to 168 micrograms of iodine and averaged 115 mcg. It noted that sources of iodine in milk include iodine in cattle feed, the products containing iodine used to clean teats and udders, and a small amount from equipment cleaning products. (Some low-iodine diets allow very small amounts of milk or other dairy, if not listed in the first three ingredients on a label. There is no dairy in any of the recipes in this cookbook.)
• Egg yolks or whole eggs or foods containing whole eggs. Egg whites are acceptable, because they contain little or no iodine. (Some low- iodine diets allow foods with very small amounts of eggs, if not listed in the first three ingredients on a label. The recipes in this cookbook use only egg whites.)
• Commercial bakery products. Avoid bread products that contain iodine/iodate dough conditioners (usually small bakery breads are safe; it’s best to bake it yourself or substitute with Matzos). If you read labels closely, you may also be able to find crackers made only with flour and water. While a few commercial bakery products have tested low in iodine, manufacturing processes can change over time. The study published in the Journal of Clinical Endocrinology and Metabolism in 2004 reported that the iodine content of single slices of 20 different brands of bread ranged from 2.2 mcg to 587 mcg.
• Red Dye #3. However, Red Dye #40 is OK. We suggest that you avoid red, orange, or brown processed food, pills, and capsules. Many red, red-orange, and brown food dyes contain iodine and should be avoided. The problem with food colors is specific to Red Dye FD&C #3 (erythrosine) ONLY. However, the problem is that some food labels do not specify which red dyes are used. Better safe than sorry. For medications, the best source is the Physician’s Desk Reference (PDR), which clearly states the ingredients. For example, Rocaltrol in the 0.5 mcg size is NOT good for the diet because it contains FD&C Red Dye #3. However, Rocaltrol 0.25 mcg does not and is safe for the diet (you can take two of them to get to the 0.5 mcg dose). Please always check with your physician.
• Most Chocolate (for its milk content). Cocoa powder and some dark chocolates are permitted. Check the label for other ingredients not allowed on the low-iodine diet. The ThyCa cookbook has recipes with permitted chocolate.
• Some Molasses. Avoid if sulfured or blackstrap, which is concentrated and has a bitter taste. It's okay to use the milder, fairly sweet unsulfured molasses usually used in cooking and that is the type most often available in grocery stores in the USA. Sulfur is not related to iodine. However, it's a term used on molasses labels. Some diets don't make distinctions between kinds of molasses and say to avoid all molasses.
• Soybeans and most soy products (soy sauce, soy milk, tofu). However, soy oil and soy lecithin are both okay.
• Some beans besides soybeans.The National Institutes of Health diet says to avoid these beans: red kidney beans, lima beans, navy beans, pinto beans, and cowpeas. Other diets do not limit beans.
• Some diets diets say to avoid rhubarb and potato skins. The inside of the potato is fine.
• Iodine-Containing Vitamins, and Food Supplements. Also products containing iodate or iodide. Check the label and ingredients and discontinue completely if iodine is included. Most vitamins with minerals contain iodine.
• If you are taking a Medication that contains iodine, check with your physician.

Limit the Amounts of these Foods

Some diets from thyroid cancer specialists and researchers recommend limiting the daily intake of foods that are moderate in iodine: 5 to 20 mcg per serving.

• Fresh meats. Up to 5 ounces per day of fresh meats such as chicken, beef, pork, lamb, and veal are fine on the low-iodine diet. (Up to 6 ounces, according to one of the researchers, who noted that meat contains 25-130 mcg of iodine per pound.) Whole cuts tend to contain less iodine than do ground meats. Also, check the package label on meats, including whole turkeys, turkey breasts, turkey cutlets, chicken, and all pork products. Many food makers inject broths into turkey or chicken or pork. The label may not indicate whether the broth contains iodized salt. If you are not sure, go to your local butcher for fresh turkey, pork, or chicken.
• Grains, cereals. Up to 4 servings per day of grains, cereals, pasta, and breads without iodine-containing ingredients are fine on this diet. The iodine content depends on the iodine content of the region where the grain was grown. Homemade baked goods and cereals are best on this diet. If you use processed foods, read the labels carefully to avoid iodine-containing ingredients. Also, remember that labels are not always accurate or up to date.
• Rices. Like grains, rices vary in the amount of iodine depending on the region where grown, so rice should be eaten only in limited amounts. Some low-iodine diets recommend avoiding rice. Basmati rice has been mentioned as the best for the diet.