Was I given too much I131?

[rileyj]

I have thyroid cancer.  I was given 164.5 ..  I131 for treatment which kept me in the hospital 4 days before release.  I got blisters down my nose, throat and ears within a week, battled that.  Then went into diarreha and terrrible stomach cramps.  This has all been in the last 2 months.  I kept complaining that my ears hurt, and my glands will not product saliva which means I won't eat meat or bread.  Can't get it down.  Anyway the stool test came back with a problem.  Doctor said isotopes or something like that.  Today I have an ultra sound for my saliva glands.  Looking for cancer again I suppose.  Did I get too much radiation treatment?  Everyone I know seems to be better pretty fast, where I feel worse.  Thanks

[Smilerdeb]

Great news!
My gland swell up too from time to time (RAI June 2008) and I often get the 'no saliva' feeling but usually when I am HYPO.
The gland will settle down.

[rileyj]

Hi Trish,

Had a scan done today with more radiation for the glands, they are damaged and hopefully might come back.  At least i feel better knowing what it is, cancer looks totally gone from scan today... Yeah

[nissah46]

Hi Sally
It's a good thing that your sister was persistent with her doctor.Even though it is a slow growing cancer, the sooner it is gone, the better.
Trish

[rileyj]

Hi Trish

My sisters went to their doctors and asked for a ultra sound after I went through all the radiation.  Our doctors did not feel anything, our blood test came out just fine.  The ultra sound is the only way this seems to be found.  Also, after Fine Needle Biopsy, my test showed cancer.  But my sisters didn't after her fine needle test.  They found hers after the surgery when the nodules and part of her thyroid went to the lab,  She insisted to her doctor to take out the nodules, since I had cancer, and her doctor did it to appease her.  Her doctor was so sure she didn't have cancer and only took out 1/2 her thyroid with the 3 nodules they found.  She has surgery again on Feb 4th to take out the rest of thyroid and some lymp nodes. On both of us, the doctors were totally surprised.  Both our nodules were far back on the left side, both vasular (making cancer easier to spread) but no signs that some people get. So I would suggest your siblings get checked.  I have had the worse stage so far, but that doesn't mean they don't have it.  My daughter is also getting her ultra sound next week just as a precaution.  It sounds like our country didn't do us justice.  One thing I have noticed is that it is running in families as we ate and drank alike.  

Sally

[nissah46]

How were your sisters checked?  Are they looking for nodules.  I was told my children are at no greater risk for getting this.  None of my 6 siblings have been checked for thyroid cancer,although it is now recommended for all people to have an annual neck check.  
Trish

[rileyj]

Hi Trish,

We were about 62 degree today.  I have lived in Michigan and Montana so I can understand your cold.  I guess your body adjusts to what ever you live in.  I am 50 years old now and found out about 15 years ago that warmer climates are more pleasant to my body.  lol  That many people in the general area for thyroid cancer is alot and from the article you read the government knew our age group would be suffering now.  I am not sure how we got this, but I lived in Michigan until 13 and we had dairy cows and my grandfather had a dairy farm and we drank milk straight from the cows.  I have 5 sisters and so far only 2 others checked, but cancer in all so far.  Two don't want to know and will wait until they suffer.  I was a stage 3 and don't like the side effects so they may suffer greatly, and they are both older than I am. I guess if they ignore it long enough it could go away?  lol you think?  lol

Take care and stay healthy
Sally

[nissah46]

  Hi Sally, very interesting article. Here in NS, we are in the path of the wind currents from the U.S.  My GP's husband studied wind currents and it was her who told me this after my diagnosis.  It makes sence that we may have been exposed as children. Just in my childhood neighborhood there are three of us diagnosed with thyroid cancer.  We are all close in age, and can see each others houses where we grew up.  Thyroid cancer is becoming the most frequently diagnosed cancer, including in young adults.  It can get cold here for sure.  Yesterday it was plus 3 celcius, and today it is minus 6.  Not much snow though.  

[rileyj]

I am not sure other than Toronto.  My great great grandfather was one of the queen of Englands gardeners, and she granted him to go to Canada as long as he promised to never go to America.  He never did.  My great grandfather did go to Michigan and built houses.  I spent 6 weeks up in Toranto and loved it, until it got cold.  I live in Texas where it is warm all the time.  My hands and feet get so cold since the radiation.  I do have a house in the mountains that we stay at in the summer to keep cool. You live in a very cold area.  lol

[rileyj]

Noncancerous Thyroid Disease
Some thyroid diseases are caused by changes in the amount of thyroid hormones that enter the body from the thyroid gland. Doctors can screen for these with a simple blood test. Noncancerous thyroid disease also includes lumps, or nodules, in the thyroid gland that are benign and not cancerous.

Thyroid Cancer
Thyroid cancer occurs when a lump, or nodule, in the thyroid gland is cancerous.

Exposure to I-131 may increase a person’s risk of developing thyroid cancer. It is thought that risk is higher for people who have had multiple exposures and for people exposed at a younger age. Thyroid cancer accounts for less than 2 percent of all cancers diagnosed in the United States. Typically, it is a slow-growing cancer that is highly treatable and usually curable. About 95 out of 100 people who are diagnosed with thyroid cancer survive the disease for at least five years, and about 92 out of 100 people survive the disease for at least 20 years after diagnosis.
The cause of most cases of thyroid cancer is not known. Exposure to I-131 can increase the risk of thyroid cancer. But even among people who have documented exposures to I-131, few develop this cancer. It is known that children have a higher-than-average risk of developing thyroid cancer many years later if they were exposed to radiation. This knowledge comes from studies of people exposed to x-ray treatments for childhood cancer or noncancerous head and neck conditions, or as a result of direct radiation from the atomic bombings of Hiroshima and Nagasaki.
The thyroid gland in adults, however, appears to be more resistant to the effects of radiation. There appears to be little risk of developing thyroid cancer from exposure to I-131 or other radiation sources as an adult.
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There is no single or specific symptom of thyroid cancer. Doctors screen for thyroid cancer by feeling the gland, to check for a lump or nodule. If a doctor feels a nodule, it does not mean cancer is present. Most thyroid nodules found during a medical exam are not cancer. If thyroid cancer is found, it is treated by removing the thyroid gland. People who undergo surgery will need to take thyroid hormone replacement pills for the rest of their lives. Although this is inconvenient and expensive, cancer survival rates are excellent. In fact, the cause of death among people who once had thyroid cancer is rarely the result of the return or spread of the same cancer. Living with a serious disease like thyroid cancer isn’t easy. A cancer diagnosis can be devastating. Some people find they need help coping with the emotional and practical aspects of their disease. Doctors and other health professionals can help with concerns about treatment and managing side effects. Support groups can help also. The National Cancer Institute’s Cancer Information Service can help put you in touch with support groups in your community. Call 1-800-4-CANCER for more information.
Who’s at Risk
How can people reach a sound decision about their risk of thyroid cancer? When is it time to visit a doctor? Scientists estimate that about 25 percent of the radioactive materials released during atomic bomb testing in Nevada reached the ground somewhere in the United States. But information about where the wind carried these materials is not precise. In addition, most adults cannot remember exact details of their milk-drinking habits in childhood. Still, scientists and doctors think that I-131 exposure is a potential risk factor for thyroid cancer, and that some Americans have a higher risk than others. A “personal risk profile” includes four key points that may influence a person’s decision to visit a doctor or other health professional for evaluation:

• Age—People who are now 40 years of age or older, particularly those born between 1936 and 1963 and who were children at the time of testing, are at higher risk.
• Milk drinking—Childhood milk drinkers, particularly those who drank large quantities of milk or those who drank unprocessed milk from farm or backyard cows and goats, have increased risk.
• Childhood residence—The Mountain West, Midwest, East, and Northeast areas of the United States generally were more affected by I-131 fallout from nuclear testing.
• Medical signs—A lump or nodule that an individual can see or feel in the area of the thyroid gland requires attention. If you can see or feel a lump or nodule, it is important
that you see a doctor.
How Do Doctors Diagnose 13 Treat Thyroid Cancer?
There are two methods of investigating a thyroid lump or nodule:

1. Ultrasound—to locate and describe the lump, and
2. Biopsy—to determine if the lump is cancerous.

Thyroid ultrasound creates pictures by bouncing sound waves off the gland. This technique is painless and quick. But it cannot determine whether a lump is cancerous. The ultrasound device uses sound waves that people cannot hear. A computer uses the echoes to create a picture called a sonogram. From the picture, the doctor can see:

• How many nodules are present
• How big they are
• Whether they are solid or filled with fluid

Confirmation of cancer requires biopsy, usually using fine needle aspiration. Cells removed from a nodule during biopsy are directly examined in the laboratory with a microscope. Fine needle aspiration biopsy—in which a few cells are withdrawn from a nodule in a thin, hollow needle—is fast and carries minimal risk. Most people with a thyroid nodule who have a biopsy turn out not to have thyroid cancer. But even noncancerous nodules require medical follow-up. If a diagnosis cannot be made from the biopsy, the doctor may operate to remove the nodule. A pathologist then checks the tissue for cancer cells. If thyroid cancer is found, it is treated by removing the thyroid gland. People who undergo surgery will need to take thyroid hormone replacement pills for the rest of their lives. Unlike many other far more common and threatening cancers, thyroid cancer is generally cured by surgery, often along with postoperative radioiodine treatment. People who think they may be at risk for thyroid cancer should discuss this concern with their doctor. The doctor may suggest a schedule for checkups.
Key Facts
Scientists know that:

• I-131 breaks down rapidly in the atmosphere and environment
• Exposure was highest in the first few days after each nuclear test explosion
• Most exposure occurred through drinking fresh milk
• People received little exposure from eating fruits and leafy vegetables as compared to drinking fresh milk because although I-131 was deposited on fruits and leafy vegetables, the I-131 in fallout was deposited only on the surface; people generally wash or peel fruits and leafy vegetables
• Thyroid cancer is uncommon, usually curable, and approximately 2 to 3 times more common in women

Reliable information about I-131’s impact on human health has been difficult to collect, but scientists think that:

• Risk for thyroid cancer increases with exposure, but even among people exposed to I-131, few develop this cancer
• People exposed as children have a higher risk than people exposed as adults
Taking Care of Yourself
Key steps to estimating personal risk of thyroid cancer, and taking charge of personal thyroid health include:

• Using the “personal risk profile” described in this brochure (see “Who’s at Risk?”)
• Using the dose estimator on the National Cancer Institute’s Web site www.cancer.gov (search keyword: I-131)
• Taking this brochure to a health care professional to discuss dose estimates and steps—if any—required for further evaluation
• Getting more information by calling the National Cancer Institute’s Cancer Information Service at 1-800-4-CANCER

[rileyj]

Hi Trish,

I am coping a article I found hidden that may explain alot of thryoid cancer in our ages:

During the Cold War in the 1950s and early 1960s, the U.S. government conducted about one hundred nuclear weapons (atomic bomb) tests in the atmosphere at a test site in Nevada. The radioactive substances released by these tests are known as “fallout.” They were carried thousands of miles away from the test site by winds. As a result, people living in the United States at the time of the testing were exposed to varying levels of radiation. Among the numerous radioactive substances released in fallout, there has been a great deal of concern about and study of one radioactive form of iodine—called iodine-131, or I-131. I-131 collects in the thyroid gland. People exposed to I-131, especially during childhood, may have an increased risk of thyroid disease, including thyroid cancer. Thyroid cancer is uncommon and is usually curable. Typically, it is a slow-growing cancer that is highly treatable. About 95 out of 100 people who are diagnosed with thyroid cancer survive the disease for at least five years after diagnosis.
3
The thyroid controls many body processes, including heart rate, blood pressure, and body temperature, as well as childhood growth and development. It is located in the front of the neck,
just above the top of the breastbone and overlying the windpipe. This brochure is designed to provide information about I-131 and its possible effects on the thyroid gland. A companion brochure offers a decision-making aid to help determine personal risk.
Although the potential of
During the Cold War, the United States developed and tested nuclear weapons in an effort to deter and to be fully prepared for nuclear attacks from other nations. Most of the aboveground U.S. nuclear tests were conducted in Nevada from 1951 to 1963. As a result of these tests, potentially health-harming radioactive materials were released into the atmosphere and produced fallout.
I-131 was among the radioactive materials released by the atomic bomb tests. It was carried thousands of miles away from the test areas on the winds. Because of wind and rainfall patterns, the distribution of fallout varied widely after each test. Therefore, although all areas of the U.S. received fallout from at least one nuclear weapons test, certain areas of North America received more fallout than others. Scientists estimate that the larger amounts of I-131 fell over some parts of Utah, Colorado, Idaho, Nevada, and Montana. But I-131 traveled to all states, particularly those in the Midwestern, Eastern, and Northeastern United States. Some of the I-131 collected on pastures and on grasses, where it was consumed by cows and goats. When consumed by cows or goats,
I-131 collects in the animals’ milk. Eating beef from cows exposed to I-131 carried little risk. Much of the health risk associated with

I-131 occurred among milk-drinkers—usually children. From what is known about thyroid cancer and radiation, scientists think that people who were children during the period of atomic bomb testing are at higher risk for developing thyroid cancer. In addition to nuclear testing in Nevada, Americans were exposed to I-131 through:

• Nuclear testing elsewhere in the world (mainly in the 1950s and 1960s)
• Nuclear power plant accidents (such as the Chernobyl accident in 1986, also known as Chernobyl)
• Releases from atomic weapons production plants (such as the Hanford facility in Washington state from 1944 to 1957)

Scientists are working to find out more about ways to measure and address potential I-131 exposure from other sources. Scientists are also working to find out more about other radioactive substances released by fallout and about their possible effects on human health.
The Search for Answers
Congress directed government health agencies to investigate the I-131 problem many years ago, and to make recommendations to Americans who might have related health risks. Gathering information turned out to be very complicated. Record-keeping was incomplete at the time of the bomb testing. Much of the information needed to calculate an individual’s dose of I-131 and associated risk is either unreliable or unavailable. Despite such challenges, government agencies organized expert scientific teams that have devoted many years to learning more about I-131. Reports were published in 1997 and 1999. This brochure continues the effort to educate the American people about the potential health risks from exposure to I-131 from the Nevada Test Site
during the Cold War years.

I-131’s Rapid Breakdown
The “active” in “radioactive” means that unstable substances produced in nuclear reactions break down and change, so that they eventually become stable and no longer release radiation. The rate of breakdown can occur quickly in some radioactive substances, often within a few days. Half of the I-131 released during each atomic bomb test was gone in about 8 days. Almost all of it was gone (less than 1 percent remained) 80 days after the test. Like all radioactive substances, I-131 releases radiation as it breaks down. It is this radiation that can injure human tissues. But I-131’s steady breakdown means that the amount of I-131 present in the environment after a bomb test steadily decreased. Therefore, farm animals that grazed in fields within a few days after a test would have consumed higher levels of I-131 than animals grazing later.

People younger than 15 at the time of aboveground testing (between 1951 and 1963) who drank milk, and who lived in the Mountain West, Midwestern, Eastern, and Northeastern United States, probably have a higher thyroid cancer risk from exposure to I-131 in fallout than other people. Their thyroid glands were still developing during the testing period. And they were more likely to have consumed milk contaminated with I-131. The amount of I-131 people absorbed depends on:

• Their age during the testing period (between 1951 and 1963)
• The amount and source of milk they drank in those years
• Where they lived during the testing period

Age and residence during the Cold War years are usually known. But few people can recall the exact amounts or sources of the milk they drank as children. While the amount of milk consumed is important in determining exposure to I-131, it is also important to know the source of the milk. Fresh milk from backyard or farm cows and goats usually contained more I-131 than store-bought milk. This is because processing and shipping milk allowed more time for the I-131 to break down.

There are two main types of thyroid diseases: noncancerous thyroid disease and thyroid cancer.

[nissah46]

Hi Sally,  what part of Canada did your grandfather come from?  I am on the east coast, in Nova Scotia.  I wonder too, where this cancer came from.  I have never been exposed to radiation to my knowledge. Five years before I was diagnosed my mom had her cancerous kidney removed. She didn't require any further treatment.  Last year my brother was diagnosed with malignant melanoma.  He had it removed and will be watched closely.  I do think it has a lot to do with our environment.  
Trish

[rileyj]

Thanks for the information for the book, I will look for it.  My great grandfather came down from Canada and his father came from England to Canada.  Interesting world...
I was up there 10 years ago and broke my foot at my hotel, everyone warned me to not go to ER as it would take at least 12 hours,  I flew home the next day and had it fixed.  My GP is good, but she doesn't know all the answers, and apparently alot of side effects are not normal for radiation but are for chemo that I have had My endro docs the one I think drops the ball.  I have a sister a year older who was checked and also has cancer and is waiting for surgery now.  And a younger sister who has nodules but too scared to get checked any more.  We all lived in Michigan and I think it was environmental as cancer does not run in our family, I am the first of the 8 kids.  Funny... my sisters name is Trish also. Thanks again
Sally

[nissah46]

My GP has been wonderful throughout my whole thyroid cancer journey.  She called me at home many nights while I was waiting for surgery.  If she can't answer something she writes my endo and finds out. Here in Canada we have gov't run health care, and I have to say I have been happy with everything except the 7 week wait for surgery. That was a long time and I felt like my tumors were growing although they probably weren't as thyroid cancer is a slow growing cancer. I found a book by M. Sara Rosenthal called The Thyroid Cancer Book, second edition.  She was a thyroid cancer patient and wrote the book because she couldn't find information when she was going through it years ago.  I found the book easy to read and understand, and it made me feel better having some information.  Perhaps you can ask at your library to see if they have it, or can get it for you.  Take care.
Trish

[rileyj]

I had my RAI on Oct 29th.  I immediately got the swollen glands and dry throat and mouth.  It has been over 2 months and the pain is getting worse.  My ears throb so much when I lie down.  I do massage them just because they hurt.  But no squirts yet.  I eat sour candy to help, but my cheeks swell inside my mouth and then I bite my cheeks.  Not sure what all that means.  Wow, 6 months, that is crazy.  I did have an ultra sound today as the doc wants to see what is going on. One problem I see is who do we go to for questions and until I found this site I felt alone researching the symptoms. My endro doc doesn't seem interested in side effects, he only cares about the synthoid amounts.  My PC doc doesn't know the answers and is honest about it.  I am seen in military hospital, so beware the gov run healthcare.  It's a little scary and I have been in their system for 30 years. Lots of doctors, no answers.  lol

[nissah46]

I started having swollen saliva glands 6 months after my RAI.  I had no idea, so my GP first thought that I had the mumps.  I tested negative for mumps, so we concluded it was delayed effect of RAI.  It was sometimes on the right side,sometimes on left, or both sides.  I would swell and be quite painful at mealtimes, then about 2 hours later it would subside.  This went on for a couple of months.  Sometimes it helps to massage the gland, and you can feel the saliva squirt in your mouth.  It can be a metallic or salty taste.  I don't get the swollen glands any more, but have permenant dryness in my mouth due to lack of saliva.  How long since you had your RAI?  
Trish

[rileyj]

question for you... does your glands still hurt and are they swollen?  How long does that last?  Waking up is the hardest as I am dry all the way down my pipes.  I have to drink before I can swallow a thyroid pill or it get caught all the way down.  Please let me know a little more about your experience.  Thanks

[rileyj]

Thank you for the response.  It makes me feel better knowing I am not alone.  For some reason, the endrocrine doctor doesn't warn you of these things, and the knowledge would be so helpful!

[nissah46]

My dose was 200mci, so yours is not unusual.  I do have damage to my saliva glands as a result of the treatment.This is not uncommon.    I always have water when eating, to help break down the foods.  I know how difficult it is eating bread and meat.  I don't even bother trying to eat chips, as it feels awful.  I didn't experience the blisters like you, or the stomach/bowel problems.  

[rileyj]

I was a stage 3 with papillary also.  I only had one nodule that was 1.8 cm but 8 of the 17 glands were cancer, and the total thyroid was cancer when taken out.  This has been miserable feeling for me.  Although my asthma and bronc tubes are no longer having any problems.

[MANmom]

I was given 100 millicuries, the only thing I experienced was a peeling tongue, followed by no taste for a month.  My biggest tumor was 1.5 cm and there was no spread.  I guess it all depends on the size of tumor and your stage of cancer.  I was stage 1 papillary carcinoma.