Just because they tell to you doesn't mean you have to

Taking synthetic thyroid hormone pills are a pain in the neck (literally). Its only a little pill but it comes with all kinds of rules.

• You have to take it one hour before eating or four hours after eating.
• You have to wait at least four hours before taking vitamins, minerals - especially calcium
• You need to take it by itself basically.
• The pills are sensitive to heat so you shouldn't have them shipped to you in summer.

You also can't switch from brand to brand or even to generic. Some people do not respond well to different brands. There are all kinds of issues here. You can read about them here if you really want.

Thirty years ago when I started taking synthetic thyroid, they didn't tell us all these things because they didn't know. Now they keep adding more and more restrictions.

My bottle comes labeled with all of this:

• Take this medicine on an empty stomach. Preferably 1/2 to 1 hour before breakfast.
• Take this medicine with a full glass of water
• Take this medication at least four hours before taking antacids, iron, or vitamin/mineral supplements.
• Take or use this medicine exactly as directed. Do not skip doses or discontinue unless directed by your doctor. Take or use this medicine exactly as directed. Do not skip doses or discontinue unless directed by your doctor. (This last one is written twice in tiny, tiny print. They could have written it once in bigger type.)

I have never understood the full glass of water business for any pills. What are we going to choke? I guess someone probably has so the lawyers got hold of it and said to drink a whole glass of water so I should temper my sarcasm. But it is a little, teeny, tiny pill.

I take my pill (or half pill - my dosage is a full pill every day except Mondays and Fridays where I take half a pill) first thing in the morning and wait an hour before I eat anything. I do have my coffee with it but that's it. (You get big points in the world of synthetic thyroid hormones just for consistency and taking your pill the same way every day.) I take the rest of my giant pile of pills at the end of the day except the one in the middle of the day that I always forget.

But...

I have a friend who doesn't have a thyroid either and she takes all her pills - synthetic thyroid, vitamins and prescriptions -  together during the day when ever she remembers. And she is just fine.

So just because they tell me to, doesn't mean I have to.

Thyroid cancer facts

The Huffington Post brings us Thyroid  Cancer: The Five Things You Really Need to Know. One little factoid jumps out: UP 274 percent since 1997. That would make it the fastest growing cancer in the country. But it affects a relatively insignificant number of people - around 60,000 this year - so it doesn't get a lot of attention.

Number one to know is it is not the good cancer. There is no good cancer. The term is derogatory and misleading.


Number two is that taking a pill every day is not that easy. You need to replace the vital thyroid hormone but if they give you too much you will be hyper and if they give you too little you will be hypo - too much or too little does not do the body good. And the doctors try to keep your levels low to prevent that lovely possibility of recurrence.

Number three is there is no new normal. I hate that term. After both cancers I was supposed to reach a new normal. If I was nineteen at my first normal and now I am on my third normal. What is normal for me?

Number four is that oh so subtle scar across the front of your neck. It fades with time but it never goes away. Stop staring!

Finally, you are not alone with thyroid cancer, you just have to look a little further to find support because it is still rare. I can count on my fingers the number of people I know with thyroid cancer. This includes the pharmacist at the local Walgreens, Ria the painter, Yumi from Japan, Lesley in Texas, the other woman I cant remember her name who also had both breast and thyroid cancer, and a few others online. (I know I am forgetting someone but after cancer twice the brain is the first to go.) But I probably know hundreds of women with breast cancer - literally.

So if you know someone with thyroid cancer send them to thyca.org or bitemecancer.org.

Further proof that thyroid cancer is not a good cancer

Robert Ebert died the other day of cancer. He had both papillary thyroid cancer and salivary gland cancer. I do not know which cancer was the one that got him in the end and does it really matter?

People go around saying thyroid cancer is a good cancer. Its not. It kills people.

Its about time

Finally, they have done enough research (because the researchers always need to be sure and there are plenty of them out there) to say that there is no connection between breast cancer and thyroid cancer.

For years there have been questions on this. Basically women are more likely to get both. Breast cancer is the most common woman's cancer (I think) and thyroid cancer is most common in young women and growing in incidence. Both are hormone (endocrine) related cancers so I guess it seemed they were connected.

Standard procedure has been for women with both to be tested for Cowden's syndrome which is a genetic condition that has both cancers are indicators. I was tested and I do not have it.

So basically this tells us that all medical research can be proven wrong over time. Can you name one thing that 'they' have not told us was good for us and now is bad or was bad for us and now is good? Which is why everything always needs more research.

Dear Brooke Burke- Chavet:

I don't know you, nor do I follow Dancing with the Stars or any show you have been on, I do feel some sort of camaraderie since I have also had thyroid cancer. While I greatly enjoyed the article about you and the eight things one should know about thyroid cancer, you missed number 9 and possibly more.

Number 9 is that thyroid cancer requires a lifetime of vigilance because it can and does recur 30-40 years later. This is important to remember. While most cancers tend to recur relatively soon after treatment, thyroid cancer is slow and takes its time.

As a result, even though you have nice clean results now you will need to have regular ultrasounds, that will eventually go to once every five years at a minimum. And there will be those fun whole body scans too.

I do not mean to be the bearer of doom and gloom but this is a fact that you should discuss with your doctor.

Sincerely,
a 31 years out thyroid cancer patient.

A New Tool for Thyroid Cancer Diagnosis

Thyroid cancer has the fastest growing rate of incidence in the US of any cancers. The standard procedure to diagnose thyroid cancer is the doctor presses on the patients throat and asks them to swallow - this is to feel for any nodules or lumps. Other symptoms may appear such as a swallowing problems, a sore throat or speaking problems.

 If a problem is suspected, the next usual step is an ultrasound to see if a determination can be made. 1/3 of all ultrasounds are inconclusive - meaning a determination can't be made to determine malignancy.

The next step is a thyroidectomy where the patient if benign will spend their life on synthetic thyroid hormone - which is not quite the real thing. The problem arises in that for those with inconclusive ultrasounds only 25% of them are diagnosed with cancer at their thryoidectomy. Or 75% have unneeded surgery.

But the new hero comes riding in in the form of a new gene test which has a 90% success rate for determining if thyroid cancer or not.



This means patients no longer have unneeded surgery which puts them into a life with out a thyroid which is  fairly significant issue. And it reduces costs for for the patient and the medical care.

Okay some good progress for cynical me.

The 'Good' Cancer

Here we go again. Another Hollywood star with cancer. Let the myths and hype begin.


First we have CNN talking about five things you need to know about thyroid cancer:

1. Thyroid cancer strikes more women than men. We can't dispute that one.
2. Its a young person diseases - striking more and more under 55 - but actually becoming more common in teens and twenties.
3. Its not an obvious cancer. It can go undetected for a long time. But since its slow growing, late detection is not necessarily fatal.
4. There are more than twice as many cases as there were 30 years ago.
5. It has a high survival rate so its a 'good' cancer.

Thats a nice little recap. But it doesn't begin to tell the story.

Yahoo says that Brooke Burke has a 'good' cancer as well. and they go on to add:

"The thyroid is a butterfly-shaped gland located at the base of the neck, just under your Adam’s apple. It’s responsible for producing hormones that do a variety of functions in the body including regulate blood pressure, body temperature, and weight."

So now blood pressure, body temperature, and weight become much harder to control without your 'dear little thyroid' or DLT. Now add to that the fact that it can recur 30-45 years later and requires a lifetime of vigilance.

After removal of the DLT, there are some people:

• who never can balance their thyroid levels and have to have constant testing and retesting to see if they can keep it under control
• who experience of life time of complications

Any one, including a doctor, who tries to tell me that it was a good cancer, seriously has no clue.

Staging thyroid cancer

What is one of the most important things in your cancer diagnosis? The staging. So what if they changed the staging protocol Hmmm... What would you think of that?

Its a conspiracy by the evil ''THEM" if they can't kill us off, they can just confuse us.

But back to the staging of thyroid cancer. It used to be if you were under age 45 and had papillary thyroid cancer (the most common kind), you were stage I unless you had mets and then you were stage II. If you were over 45, they used the TNM system with Stages I-IV. I was under 45 so I was stage I. If I had been over 45 I would have been Stage III.

Now some research has been done (because we always need more research) and they think being age 45 has no significance. They say there is no real drop off in survival rates from ages 45-64 or even 74.

But what they do not tell me is am I still stage I and they are just raising the age limit to 64. Or am I stage III because they put us all in the other category. I am confused.

This is only being done to confuse us. I am sure it is a conspiracy.

Is it time to rename my blog?

When I first started my blog it was called 'Caroline's Cancer Blog' for a very brief period. Then I settled down with 'Caroline's Breast Cancer Blog' because it was about coping with breast cancer. Now more than five years later, my breast cancer seems to be cooperating and not stressing me out (as much) as it did before.

But now I have all sorts of other medical stressors:

• Thyroid cancer mysteries. What the hell is going on in my neck? We keep repeating ultrasounds and get conflicting reports - bigger, smaller, same size.
• Back pain. Degenerating disks to start with and living on pain meds. 
• Fibromyalgia. This isn't fun. I need to go back to my back pain doctor.

And there's more that I can't think of right now because I have chemo brain (or maybe its fibro fog). I'm tired, in pain, and a touch cranky at times. Also:

• The spell check on my computer includes oncologist, endocrinologist, rheumatologist, and multiple medications. 
• I have a special directory on my cell phone of all my doctor's contact information and have their secretaries' names memorized.
• I see my oncologists less than I see some of my other doctors.
• I feel like I know the pharmacists at the local Walgreen's. 
• The nurses in the interventional pain center where they do injections recognize me.
• I can't fit all my prescriptions on my bedside table and keep them on the shelf in my closet.
• My primary care doctor is happy when she doesn't see me more than every few months.

So my life isn't just about breast cancer any more and my blog isn't just about breast cancer either. I have lots of opinions on lots of things. But I'm not sure I want to rename my blog because breast cancer was one of the first big things that have happened to me in the last few years. It still exists in my life - a cancer diagnosis never really 'slips your mind'. With two cancer diagnoses, when I don't stress about my other health issues I can always stress about them.

Thyroid Cancer Awareness Month

September is Thyroid Cancer Awareness month. Its probably awareness month for several other cancers, ailments and conditions. Like all months it also probably has an official birthstone, flower and more. I will focus on thyroid cancer awareness.

What we should all know about thyroid cancer.

• It used to be a relatively rare cancer. It has doubled in incidence since the 1990s and is the fastest growing cancer in the US.
• This year the American Cancer Society expects 56,460 cases in the US, this is more than the number of cases of ovarian, leukemia, myeloma, brain, uterine, bone, larynx, gall bladder, rectal, esophageal, stomach, or oral cavity cancers.
• If caught early, it has a relatively high rate of 'cure' but the patient is left with a lifelong chronic condition of having no thyroid.
• Treatment for thyroid cancer is very different from other cancers in its treatment. And it can recur decades later.

Some of the increased rates are attributed to advances in technology allowing smaller and smaller tumors to be detected. But environmental factors clearly contribute to the increases.

Check your neck is the message here.

I wish we didn't have to whisper

Yesterday I finally gained some sense and trekked on down to the local pharmacy to inquire about a cold medicine that I can take. Its not as simple as you may think because I have no thyroid, I am allergic to Benadryl and must avoid all anti-histamines, and am on anti inflammatories so I can't have aspirin products. I gave the list of issues to the pharmacist and she gave me a suggestion.She said I could take it even though it warns against thyroid disease because she takes it and she doesn't have a thyroid either.

I unleashed my inner snoop and asked her why she didn't have a thyroid and she whispered 'I had cancer'. I asked her when and she said 4 months ago. I said me too but more than 30 years ago. That seemed to please her.

I can understand why she whispered 'I had cancer' because she didn't know if I would run and flee at the word, give her unwanted advice, or yell it through the store. But I wish we didn't have to whisper and people and their attitudes would change.

Everything you wanted to know about thyroid cancer but were afraid to ask

How much do you know about thyroid cancer? Let's start with in a lot of ways it is very different than any other type of cancer in terms of incidence, treatment, life after cancer, etc.

Thyroid Cancer Canada just released a very interesting report which summarizes the disease. Here are a few bullet points on the differences with thyroid cancer and other cancers:

• thyroid cancer usually leads to the loss of the thyroid gland -- a major organ of the body -- necessitating life-long hormone replacement and monitoring similar in effect to some chronic diseases
• for the most part there are no early warning signs; no means of prevention of thyroid cancer
• neck exams can find thyroid cancer at an early stage, but currently neck exams are an optional inclusion in most standard physical examinations
• thyroid cancer is now the #1 cancer (in incidence and prevalence) in young women
• wait times for diagnosis and surgery are amongst the longest in the western world
• thyroid cancer has the greatest range of possibilities in prognosis, depending on the type diagnosed
• for some, surgery and treatments have lasting negative after-effects
• 80% of thyroid cancer patients are women
• overall it is very treatable, however males struck with the disease have a lower cure rate
• thyroid cancer is increasing in incidence at a higher rate than any other cancer
• a unique form of treatment -- radioactive iodine therapy -- is an option for the majority of patients
• thyroid cancer has a high rate of recurrence, up to 30 years later
• thyroid cancer patients impacted by low number of resources, and inequitable distribution of tools across the country, including PET scans
• there is a high rate of bankruptcy amongst thyroid cancer survivors
• only 0.1% of cancer research dollars are invested in thyroid cancer

While the focus of the numbers in the report are for Canada I think we can assume it pretty much parallels the rest of the world, including the US.

Thyroid cancer is unique in many ways summarized as follows:

	All Cancers	Thyroid Cancer
Treatment	~60% of cancer patients are treated with radiation therapy such as External Beam radiation (EBR)5	Less than 3% of thyroid cancer patients have EBR treatment
	More than 50% of cancer patients receive chemotherapy	Less than 2% of thyroid cancer patients receive chemotherapy
	0% of non-thyroid cancer patients receive RAI treatment	~60% of thyroid cancer patients receive RAI treatment
Specialized Diagnostic Tools	Thirteen types of cancer have a oncologic indication for PET Scans, internationally	Thyroid cancer is one of only 4 cancers on the PET Registry in ON, yet ON has amongst the lowest number of scans per population
Age	53% are more than 55 years old	Median age is 40 years old
Gender	Cancer by gender ratio: women/men - 48/52	Thyroid cancer gender ratio: women/men - 80/20. Relevant Survival Ratio: 98% survival for women, drops to 94% for men
Life Sustaining	It is possible for a person to live with the loss of some organs (due to cancer) and function normally otherwise (ie. not require medication to mitigate the loss) such as with the loss of: one kidney, part of the reproductive organs, part of the liver, part of the intestines, breasts, etc.	The thyroid gland is a major organ of the body. Patients cannot maintain life without a thyroid gland or in its absence, replacement hormone (T4) taken in pill form; with need of frequent monitoring. Therefore, even with a good surgical outcome and excellent prognosis, a thyroid cancer diagnosis is akin to a chronic illness

Its very different than many other cancers, it is also rapidly increasing in incidence and has the least amount of research. Maybe I should become a lab rat and help them.

A bit more about thyroid cancer

If you have breast cancer or one of the 'popular' cancers, there are boatloads of information. Actually there are aircraft carriers full of information on the cancer. Enough information to go to the moon and back a million times.

But if you have an obscure cancer, no one knows about it. Thyroid cancer used to be nice and obscure - 10,000 cases annually. Now it is getting 'popular' and there are expected to be 50,000 cases a year. This means I can actually find information about it that is not in 'medical-speak' or the dreaded 'scientist-speak'.

So here is a nice little article explaining the thyroid cancer. The author of the study (yes another study, because we needed it), says:


“The excellent survival rates of almost all of our patients are predominantly due to the multidisciplinary optimization of their diagnostic and therapeutic management, including advanced molecular imaging techniques, highly sensitive laboratory assays, excellent endocrine surgery, individualized high-dose radioiodine therapy and lifelong medical surveillance.”

Please note the last three words - lifelong medical surveillance. Yep, it has a sneaky habit of coming back decades later. Isn't that nice. With most cancers, five years means the chances of recurrence are lower. Not so with thyroid cancer. It likes to return much later. How fun.

Life with cancer

Here's some food for thought. Most thyroid cancer patients should expect the same life expectancy as the rest of the population. Now they tell us. I could have used that little tidbit 30 years ago thank you. It would have been appreciated. But with thyroid cancer comes a lifetime of vigilance as it has been known to recur decades later and you have life without a thyroid which comes with its own little ups and downs.

Another little tidbit is that five year survival rates are 90% for women with early stage breast cancer. A nice little factoid to see but what annoys me is that the Komen foundation for the cure is trying to take credit for it. I received an email from them (asking for money again) that said:

"Thanks to donations from others like you, the research advances funded by Susan G. Komen for the Cure® have helped extend the 5-year breast cancer survival rate to 90%!"

To compare this is what Avon said in their email to me:

"2012 marks the 20-year milestone of the Avon Breast Cancer Crusade and the 10th birthday of the Avon Walk for Breast Cancer event series. Over the past 20 years, we've made great progress globally, funding breast cancer research and improving access to care."

I don't know. The Komen email just annoys me with their wording. 

But anyway, I am happy to hear the survival rates have greatly increased and my life expectancy is not impacted by thyroid cancer. 

Here is an inspiration

He's blind.
He's had thyroid cancer.
He's traveling to 30 MLB ball parks in 30 days.
He's raising $900,000 for Thyca - Thyroid Cancer Survivor's Association.

We should all be inspired by Reggie and his story. If we were all so motivated the world would be a better place.

Seriously a bit of altruism would help us all.

We are few and far between

You can't turn around without running in to women who have had breast cancer. They wear pink, they have ribbons, they have walks, and cities and towns are painted pink. They can bond. They have retreats and get togethers. The month of October no longer leads up to Halloween, it has been pinkified. They get a whole month. If I don't know dozens of women who have had breast cancer, I know hundreds. There are lots of us.

But then there are few and far between long term thyroid cancer people. If there were 10,000 cases a year in the 1970's and early 1980s, how many are there left from them? A few weeks ago, I posted on a thyroid cancer message board asking to connect with others who had lived with it a long time. People who were five and six years out from treatment replied. Is cancer supposed to impair your definition of 'long term'? Definitely it shouldn't. Five and six years is not a long time. Long time is decades. Five years is the stupid little criteria they use in clinical trials to measure outcomes.

Back on the message board, I clarified a few days later and said I was looking to connect with people who were decades out from treatment. One person replied at 15 years out, another pushing 20. Finally a woman from the farthest part of the country from me replied over the weekend and said she is nearly 40 years out asking to connect. I have already sent her a message.

If you have a 'popular' disease like breast cancer with its walks, awareness, fundraisers, blah, blah, blah, it may be very difficult to realize the difference with someone who has a 'rare' disease. Has anyone ever been to a thyroid cancer fundraiser, walk or other awareness event? Probably not. They are just not as common because the disease just isn't as common.

There are other long term cancer people out there. I know others who are 25-30 or more years out from other types of cancer but they had the more popular kinds of cancer. We are the people who had cancer when it was the big C. We proved the big C wrong, by living through it. We may be few and far between but we are still here.

News that is useless to me

I didn't use to be (so) fat. I used to be a size 8ish and am now a size 12ish if you really need to know. My size 8ness lasted until that first chemo when they pumped me full of steroids....

Now research says lose a little weight and greatly reduce that breast cancer risk. That's not very helpful. I am in the much higher than normal risk pool because I already had it.

More research (because we needed more research) tells us that obese people are more likely to be diagnosed with advanced and aggressive thyroid cancer. This is also a little too late for me because I don't have a thyroid (thank you cancer) but it could always come back - but we just won't think about THOSE things.

So this is useless news to me but maybe it will help others. Not that you haven't heard it before - we all need to lose weight.

I did not get the math class

I did not get the thyroid cancer math class. I am sorry. I can't remember it all. I get confused. I fake it and pretend I understand. But I don't.

I am blaming a combination of chemo brain and the fact that when I had thyroid cancer the world was different my doctors just gave me a Synthroid (synthetic thyroid hormone) dose and never explained numbers. Every so often they would look at my blood test results and say 'hmmm, let's adjust your dose'. Part of that was because that back then Synthroid was not available in a million different dose levels. I think it was just 100 mcg or 200 mcg. Now its available in doses of everything from 37.5, 50, 75, 87, 100, 125, 150, 175, 200 mcg and many more.

At my last appointment with my endocrinologist, my TSH level was a little too low. It was .22 and should be at the low end of the normal range of .35 to 4.5. So instead of taking 1/2 a pill once a week my dose was reduced by another 1/2 pill a week and as a result my TSH level went up to .53 which is in the acceptable range. When they decrease your dose, your levels go up - just to make it confusing.

My doctor pulled out a calculator to figure out what the dose should be. Should I go down to 125 mcg with a half pill once a week or go with 137 mcg and take a half pill twice a week? This way I am getting an average of 117.4 mcg each day. If I went to 125 mcg and took 1/2 a pill once a week I would be at 116.1 mcg which she thought was too low. She asked me if I used a daily pill box before deciding what the dose should be.

Then there are T3 and T4 levels that need to be monitored and kept to barely detectable levels so I don't remember those numbers either. These are monitored because if they are detectable it could be a sign of recurrence (I think).

If you go to the thyroid cancer message boards there are all these people asking about changing TSH, T3, and T4 levels and another test that I cant remember. They ask about why they go up and down, should they change their drug levels or change their doctors or change something else. What happens when you gain or lose weight or get pregnant or go vegetarian or all sorts of things. And its all about the numbers. I never comment on those discussions. I read them and think 'some day this will all make sense'.

But it appears it will never make any more sense than professional football rules to me. I have both explained to me a million times and I still don't get it. Back when I was in my 20's. I would get together with a friend for drinks often on Monday nights. We would sit at the bar and the bartender and some nice men would always explain foot ball too us. We lied and pretended we understood but never really did.

I think I am okay with this. I get my blood tests. My doctors explain them to me. Its one less thing to worry about.

New treatment standards

I am always torn when new treatment standards are announced which promise the same or better results with fewer side effects. My first thought is always "why didn't they have that when I was treated". I actually find it worse when they decide that the previous standard of treatment didn't really work, but that's another story.

In thyroid cancer treatment, the first step is a thyroidectomy. Because of where your thyroid is, it is virtually impossible to remove it all - its kind of squished in between some essential body parts - spinal cord, esophagus, wind pipe, arteries, vocal cords - that are pretty darn important. So after removing as much of your thyroid as they can, they treat patients with radioactive iodine to dissolve the rest of your thyroid. Thyroids absorb iodine - which is why we have iodized salt. Now that sums of my medical knowledge on the subject of thyroids. I haven't had one for so long I haven't really spent much time learning about it.

The problem with radioactive iodine is that it is radioactive. And patients treated with it tend to be radioactive as a result. And while they are 'glowing' going out in public isn't a good idea, nor is exposure to small children, pregnant women, etc. So often, after treatment, patients are stuck in isolation for a few days - which just sucks. Pretend you are the boy in the plastic bubble for a few days and you'll get the point.

Also before the radioactive iodine treatment, patients would have to go off their synthetic thyroid hormone for two to four weeks and live on a low iodine diet - no shrimp, no salt, and nothing made with either to start with and then a few (thousand) more restrictions on top of that. And since you are off your meds for so long, you feel like hibernating.

Now they want to change all that. They have found that they can reduce the radioactive iodine dose to 1/3 of its current dose, orally as an outpatient. And they do not have to reduce their synthetic thyroid dose either. So for the patient, its easier, quicker, and less disruptive. (For the health insurers, it costs a lot less so even they are happy.)

The only burning question is - when will it appear at a hospital near us patients?