Thyroid cancer and life with out a thyroid

A pop quiz: What does your thyroid do anyway?

1. Something to do with weight.
2. Some weird gland thing that we all have but doesn't do much.
3. I have no idea.
4. The master gland of metabolism and energy.

If you answered #4 you get a gold star. If you answered any of the others, you are not that different from the average person.

The thyroid is our master gland of metabolism and energy. Every single body function that requires oxygen and energy -- basically, everything that goes on in our bodies! -- requires thyroid hormone in proper amounts. That means we need the proper balance of thyroid hormone in order to feel and live well. We need thyroid hormone to think clearly and remember things, to maintain a good mood, to grow hair and nails, to have basic energy to get through the day, to see well, to digest our food, to burn calories, to be fertile, to get pregnant and have a healthy baby, to have a good sex drive, and much, much more. In some ways, you can think about thyroid hormone as the gasoline that makes the car go. No gas, and there's no way to move forward. 

So if you don't have a thyroid, life is very different.

There are millions of Americans with thyroid cancer issues. But for the first time I have found something that explains, in layman's terms, what hypothyroidism, hyperthyroidism, and the implications of a thyroidectomy after thyroid cancer.

If your loved one has thyroid cancer, they have an entirely different challenge. The majority of thyroid cancers are considered highly treatable and survivable, so doctors and others often cavalierly refer to thyroid cancer as "the good cancer." But the reality is, no cancer is "good," and someone who has thyroid cancer has cancer, "the big C." Cancer as a concept is frightening, and raises fears and concerns. Someone with thyroid cancer initially may have few, if any, symptoms. In some cases, however, they may have hypothyroid, hyperthyroid, or a combination of symptoms of a thyroid imbalance. Most thyroid cancer patients require surgery to remove the thyroid -- and this can be daunting, including the idea of a several-inch incision in the neck and resulting scar. After surgery, many thyroid cancer patients will need to have followup radioactive iodine treatment to ensure that all the cancerous tissue was removed, and it can be many weeks after surgery before a thyroid cancer patient -- who by that point is typically quite hypothyroid -- can start thyroid medication to again get lifesaving thyroid hormone they need. And the thyroid cancer patient in your life will require lifetime of medical treatment for the resulting hypothyroidism, along with periodic -- and sometimes physically challenging -- follow-ups and scans to monitor for a recurrence of the cancer. 

You will note a few key statements:

• No cancer is "good"
• Require lifetime of medical treatment for th resulting hypothyroidism, along with periodic -- and sometimes physically challenging -- follow-ups and scans to monitor for a recurrence of the cancer.

So please take a few minutes to read and understand what your thyroid does and what is life like with thyroid problems. These are chronic problems and can be treated but cannot be cured.

Addendum to stigmas

As Lesley commented yesterday, the same can be true about chronic problems. People just don't understand. Then they forget you still have a problem or ask why it isn't better. Chronic problems do not go away.

A good example of this is that I have lymphedema in my left arm. I used to go for acupuncture. When I started I had to fill out a big long form with all my health issues on it. We talked about all my ailments and including lymphedema and how there could be no needles on that arm.

The acupuncturist would 'forget' sometimes and go to put a needle in my left arm. The last straw for me was when she said to me 'this hasn't resolved itself yet?'.  Clearly despite her statements that she had learned about lymphedema, she had no clue.

Then I have friends who ask if I want to go on a big hiking trip as in the past - no can do. That part of my life is over. And not by choice. If I can't go hiking it doesn't mean I don't enjoy your company.

I think some people feel that their friend's chronic problems will just go away if they could just wish them away. But life isn't like that. Which is why the diagnosis and treatment was so traumatic.

I mentioned my current knee problems. Well this is a third year of problems with what is formerly known as my 'good' knee. Now I don't have a 'good' knee. I have two knees which I hope won't need replacements for a couple of decades.

If someone has a chronic ailment and can't get around and out and about as  much, they are still there. Don't ignore them. If you can't get together, pick up the damn phone and call them.

Call me Chronic

Chronic noncommunicable diseases are the biggest killer worldwide. Chronic is defined as cancer, diabetes and heart disease. This presents an interesting challenge. There are some genetic causes of these but the majority are caused by lifestyle.

I do like this article because it considers cancer a chronic condition - meaning it won't go away but it won't necessarily kill you. Its not a terminal disease. I don't like this article because they say it is a lifestyle disease. Um, I followed the rules most than a lot of other people and ended up with the disease twice. And I have blood pressure/pulse issues right now as a side effect of one of my cancers.

Now there is a lot to be said that the sedentary, alcohol-filled, tobacco-filled lifestyle, can contribute to diabetes, heart disease and cancers but these diseases still affect the marathon runners among us.

Also, it implies we don't have a cure for these so while they may not kill you off, once diagnosed you get to keep them for life (just think of them as gifts that keep on giving).

I admit yesterday I was somewhat lazy but I have an excuse in that PT made my knee hurt so I didn't get to go for a walk. Today I expect to go to the gym and then for a walk (and then to get my hair cut so I can look good while I feel virtuous).

Chronic - a word I dislike as much as cancer

The CDC has a whole set of programs to define chronic diseases. Wikipedia defines chronic disease as:

'In medicine, a chronic disease is a disease that is long-lasting or recurrent. The term chronic describes the course of the disease, or its rate of onset and development. A chronic course is distinguished from a recurrent course; recurrent diseases relapse repeatedly, with periods of remission in between. As an adjective, chronic can refer to a persistent and lasting medical condition. Chronicity is usually applied to a condition that lasts more than three months. The opposite of chronic is acute.

The definition of a disease or causative condition may depend on the disease being chronic, and the term chronic will often, but not always appear in the description:

* Chronic fatigue syndrome
* Chronic osteoarticular diseases: rheumatoid arthritis, osteoarthritis
* Chronic respiratory diseases: chronic obstructive pulmonary disease, asthma
* Chronic renal failure
* Diabetes mellitus
* Chronic hepatitis
* Autoimmune diseases, like ulcerative colitis, lupus erythematosus
* Cardiovascular diseases: heart failure, ischemic cardiopathy, cerebrovascular disease
* Neoplasic diseases not amenable to be cured
* Osteoporosis
* Cancer
* Chronic GHVD: intra-oral

Many chronic diseases require chronic care management for effective long-term treatment.'


I was told during cancer treatment that cancer is no longer treated as a terminal disease but as a chronic disease. At that point, I thought that was the better of the two options. I dislike the word chronic when it is associated with multiple conditions affecting my body (and life). I would prefer the word 'acute' which is defined as medical conditions which occur and go away (are healed). Terminal is not an acceptable word either.

Yesterday at the back doctor, I asked him what was the big picture and long term prognosis was with my back. He said that as we get older our joints get older and worse. My back problems start with my degenerating disks and I have all sorts of areas of inflamed nerves and pain areas. As we do each treatment, we find different areas of pain surface or previously treated areas resurface.

He did say I am doing all the right things - I take my medications, I do my exercises, I go for a daily walk, I have a memory foam mattress topper, I switched to a smaller purse, I don't carry things, and I keep coming back when in pain. There aren't many more switches I can make in my life that will help.

Basically, the doctor said its a chronic condition that is with me for life. However as we go through life our bodies change and there is a small chance that my body will change and the pain areas will abate. The goal is to offer me treatments that last a year or more for each area of pain so we will continue the injections of different sorts in different areas until my body morphs into a pin cushion, or we run out of painful areas (not likely), or I drop dead (what a pleasant thought). At least my back doctor is a nice guy with a sense of humor about this.

The next steps in my back saga are I was given a cortisone injection in my left hip and I will have a radiofrequency denervation (the nasty procedure where they kill nerves) in my right sacroiliac joint in a few weeks. I have already had two cortisone injections in it but it is still causing pain that is wrapping around into my right hip. The cortisone in my left hip is already working. Three years ago just before my breast cancer diagnosis I was told I had bursitis in my hip and no treatment was offered because of the pesky cancer thing that was deemed as more urgent.

I felt relatively good about my appointment yesterday but I ended up being there for more than two hours because of the injection and scheduling and preop for my next procedure which made me late for meeting a friend for a walk. Then my husband got home before we got back from our walk and we rushed off to the beach. It was absolutely beautiful - not a cloud in the sky, a light breeze, and the crowds were leaving so we had lots of space. This was followed by a dinner of steamed clams - yummy! It ended up as a very nice but full day. Just that icky word 'chronic'.