Radiation anyone?

In treatment for thyroid cancer, patients are often given a dose of radioactive iodine which will dissolve any thyroid cancer cells. But as you swallow radiation, it is then released from your body in its normal processes - sweat, saliva, urine - over the next few days. Now a days, patients are released from the hospital the same day and told to stay away from pregnant women and small children, sleep alone, and not share food or drink for a few days. Apparently before 1997 the NRC mandated hospital stays during radiation decay.

I don't remember this part. I don't recall being hospitalized for radiation. I think I was given radioactive iodine and sent home. My brain is a sieve but you would think I would remember that.

But the problem now a days, is patients who don't live near their hospital/place of treatment are then spending the night in a hotel while emitting radiation. Who knows who is going to stay in that bed next and get exposed to radiation? Who is going to clean the room and get exposed to radiation? (Between bed bug scares - which make my skin crawl - and things like potential radiation exposure that make me want to avoid hotels for ever.)

I don't think of radiation as being this really scary thing. I worked for a scientific instrumentation company which had many machines that use radiation as well as manufacturing systems for measuring different kinds of radiation. Any radioactive element has a half life which is how long it takes to decay. Some have a half life of 3 days and some of 3 million years. So somethings that were radioactive are no longer. I believe (in my non scientific brain and through reading posts like this read all the way down to the last one)that RAI is radioactive for a few weeks but you can expel it from your body sooner through its natural processes.

But it is a conundrum - if you get a treatment involving radiation, when can/should you be released into the general public? Are insurance companies again making unsafe decisions?

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They don't know

They don't know what causes thyroid cancer. Genes, environmental factors, exposure to radiation? When you go to the dentist and they cover you with a big heavy protective blanket during x-rays which includes a collar, they are protecting your thyroid from radiation. (I always think they can skip that for me.) It is thought that exposure to radiation through xrays or radiation as a child can cause thyroid cancer. But apparently if you are near nuclear reactor fallout you have a greater chance.

But the cancer cause mystery prevails. They have thoughts but no real idea. Well, keep thinking because I'm still waiting. While you are at it, you can find a cure too. Thank you.

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What's going on

I realized that I haven't blogged about me and how I am doing in a while, which was the whole point of this blog in the beginning. I'm doing okay mostly. The cancer business is really in a maintenance phase meaning I go to my medical oncologist three times a year for another two years, I go to my radiation oncologist once a year for a few more years, and I go to my surgeon annually and have a mammogram arranged through his office for life. I also go to the endocrinologist again in January for another thyroid ultrasound and if its stable I will be back on annual ultrasounds for a few more years and then I hope to get to one every five years.

Nearly three years out from chemo, my hair which I used to keep long and straight is now short and the natural wave shows. All the ugly gray which first grew in is gone and I am back to my brown with a few strands of gray here and there. I still get occasional tingles in my fingers from left over neuropathy. The other chemo side effects seem to have faded.

It is harder and harder to lose weight - is this aging or as a result of cancer treatments? The same can be said for my lack of a brain - due to chemo or aging? I don't know but I will claim chemo brain for a while and will look for my inner size six that I know is still there.

My current medical issues revolve around my left ankle which is still painful and I think I will have some clean out surgery in December as it is not any better. My back is my central complaint. I have had three treatments to relieve pain this year alone. I take two pain meds and an anti inflammatory for my back. This is not a situation which will change anytime soon. Two years ago it was not a problem at all. As one area is treated another area shows up. It is not fun and is a life changing event. But its not cancer - is that a cheery thought? I don't know - its a life long problem as well.

Emotionally I am feeling okay. I take antidepressants and see my therapist regularly. I am on an even keel and am coping with life. Do I sound like I mental disaster? I hope not. They say after a cancer diagnosis there is a sense of PTSD and that 25% of cancer patients are treated for depression after the fact.

A lot of the stress is off me in that I am no longer going to the doctor every week or so. Now I am going every month. Every time I pull into the hospital parking lot, the stress of the whole cancer roller coaster returns at some subliminal or not so subtle level. It is easier to stay off the roller coaster when I stay away from the hospital.

Four years ago I was working in downtown Boston and looking for another job as my work schedule got me home from work two hours after my husband and my boss was impossible. I wanted a job closer to home. I left my downtown job and got a job closer to home and got laid off two weeks before my breast cancer diagnosis. This little quirk of fate allowed me to switch my life into volunteering, working part time and for non-profits which actually makes me happier than trying to juggle medical issues and a full time job in downtown Boston.

My husband and I are happy in our lives. We both have taken turns being patient and caregiver which gives us a new perspective on things. Anyway, that is my life in a nutshell now. I am doing okay but my life is forever changed again. The only thing I regret is getting cancer a second time and I had no control over that.

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Time to switch cancers

It may be breast cancer pinktober but I am going to talk about Thyroid cancer today. My other cancer that gets ignored. By the way, September was thyroid cancer awareness month. I didn't see much awareness for it anywhere.

When I was diagnosed with thyroid cancer there were somewhere around 12,000 cases diagnosed each year. This year there will be around 44,000. Thyroid cancer is one of those who is greatly increasing in incidence. The increase in incidence is thought to be partly due to to increased exposure to radiation through xrays and other tests. And also due to increased screening and improving technologies for diagnosis. Apparently most tumors are now found to be papillary and 2x2cm or smaller which are considered to be nonproblematic by some doctors.

There are several kinds of thyroid cancer. Anaplastic, the rarest, is the bad one. If you are diagnosed with it, it is automatically Stage IV and treatment options are limited as it is very aggressive. This is what killed the Supreme Court judge a few years back. Medullary, slightly more common than anaplastic, is somewhat different than the others with slightly lower survival rates. Follicular, more common than the two above, is considered relatively aggressive. Papillary is the most common, accounting for over 75% of thyroid cancer cases diagnosed. It is very treatable.
Survival rates for all but anaplastic are in the 90%s.

Thyroid cancer treatment is fairly straightforward. The thyroid is surgically removed. Radioactive iodine treatment is used to dissolve any thyroid remnants. A synthetic thyroid hormone is taken for life. Sounds pretty easy? Well sometimes they have to go back in surgically as they didn't get all of the tumor. Sometimes you need multiple doses of radioactive iodine. Sometimes a patient has a hard time getting settled on a dose of thyroid hormone and has to constantly change doses. You get follow ups to check blood levels regularly. You get ultrasounds periodically to ensure no regrowth. And thyroid cancer can recur 20, 30, 40 years later. Those of us who have had thyroid cancer call it a 'lifetime of vigilance'.

But cancer is cancer. Even if you get a 'curable' cancer you are never cured. How did you get lucky enough to get cancer the first time? Do you still have cancer cells in you? Did they get it all? They don't know.

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