[Naisly April 5, 2013 at 8:07 pm Post count: 143]

#1059821

Just wondering why no one here talks about cancer related to RAI? Or salivary and lacrimal gland dysfunction among other things.

[KimberlyOnline Facilitator April 5, 2013 at 8:11 pm Post count: 4294]

#1177946

http://gdatf.org/forum/topic/42443/

[Naisly April 5, 2013 at 8:15 pm Post count: 143]

#1177947

I know the link Kimberly and yes it has useful information in it, that is not what I asked. I wanted to know why people don’t talk about it…

[AzGravesGuy April 6, 2013 at 6:28 am Post count: 160]

#1177948

I did discuss my cancer concerns briefly in the thread I have as a chronicle of my fight with Graves’.

For my situation, I was unable to find a significant, solid correlation to the RAI (16.5 mci) I received and cancer. I am concerned about that risk, of course, but if tomorrow I was diagnosed with say….a stage 4 adenocarcinoma, I would blame the 18 years I spent sucking down Marlboros and Camels before I suspected the RAI.

This Graves’ experience has led me to take responsibility for my past actions and say to myself “the self destructing behavior stops today”.

Until I can see proof that there is a valid study showing a marked increase in occurrence, while taking all the other bad things we submit our bodies to into account (preservatives in food, food dyes, cleaning products, smoking, drinking, exposure to car exhaust, or genetic predisposition, etc) I would just be fear mongering myself into unnecessary worry.

To the best of my knowledge a study like that does not exist.

So I did discuss the cancer concern as it applied to my grandmother’s treatment with radioactive seeds for her GD, but that is an outdated procedure that was mismanaged from the start so it cannot be used as evidence.

I feel confident and self assured that I have done no more lasting radiation damage to myself than I would have received in 2 transcontinental flights. (Especially since the RAI did not work on me.)

There may be conflicting opinions about my stance and that is great too. If we cannot discuss, we cannot learn.

[mslux April 6, 2013 at 6:51 am Post count: 33]

#1177949

It’s not an area I am familiar with as it’s not widely used here. The links refer to the concerns around secondary primary malignancies following RAI. It is also used as a treatment for thyroid cancer. It’s an issue of balance. While nobody is keen to receive radiation it is a question of balance and options. Were you advised it would save your life in the treatment of cancer it would obviously be worth considering. I am surprised it is so widely used in the US as it is a very carefully considered treatment here.

From the Journal of the National Comprehensive Cancer Network;-

“Longer-term complications include recurrent sialoadenitis associated with xerostomia, mouth pain, dental caries, pulmonary fibrosis, nasolacrimal outflow obstruction, and second primary malignancies.”
http://www.medscape.org/viewarticle/732516

From the Division of Endocrinology and Department of Medicine, University Health Network, Toronto, Ontario, Canada:-

“The risk of SPMs in thyroid cancer survivors treated with RAI is slightly increased compared to thyroid cancer survivors not treated with RAI.”
http://www.ncbi.nlm.nih.gov/pubmed/19281429

[KimberlyOnline Facilitator April 6, 2013 at 7:23 am Post count: 4294]

#1177950

Should patients be asking about this? Absolutely.

However, it’s important to look at studies that were specific to RAI for hyperthyroidism, as RAI for thyroid cancer involves a significantly larger dose. The links presented in the older thread that was posted above were all specific to treatment for hyperthyroidism.

The larger study involved 35,000 patients who were followed for 20+ years. This study indicated no increased risk of death from cancer. The two smaller studies noted a slightly increased risk of specific types of cancer following RAI.

[amosmcd April 6, 2013 at 12:48 pm Post count: 231]

#1177951

I’ve talked about it in my posts about deciding RAI vs TT. My worry about getting breast cancer from having radiation a bit too close to my chest and considering that the radiation is shed through our bodily fluids (which is why it’s recommended to shower a certain number of times a day and flush the toilet three times after using it and we are to keep away from people and pets) just makes me leery.

It’s a personal decision on my part to not have RAI. I think that with my family history of breast cancer and a risk that’s double the average woman’s risk for breast cancer, it really wouldn’t matter if all studies proved there was zero risk of any type of side effect or risk of cancer. I’m just not going to take the chance. So if someday I do develop breast cancer, I won’t have to question whether I played a part in it.

Amy

[mslux April 6, 2013 at 1:48 pm Post count: 33]

#1177952

[quote=amosmcd]I’ve talked about it in my posts about deciding RAI vs TT.
It’s a personal decision on my part to not have RAI.
[/quote]

Hi Amosmcd,

I’m wondering did you opt for a TT or continue with ATD therapy and how did it work out?

Thanks,
Ms Lux.

[Stymie April 6, 2013 at 2:20 pm Post count: 195]

#1177953

Naisly wrote:

Just wondering why no one here talks about cancer related to RAI? Or salivary and lacrimal gland dysfunction among other things.

What is salivary and lacrimal gland dysfunction? I’ve never read or heard anything about this before…

D

[amosmcd April 6, 2013 at 2:28 pm Post count: 231]

#1177954

I am still on PTU (did not tolerate Methimazole) just switched to a new endo last month. My levels have been hard to control on ATDs. I tend to swing back and forth from hypo to hyper and back again.

I have a couple questions for my endo next week and depending on what she says, I will either stay on PTU a bit longer or have the TT next month. I was diagnosed last Sept, but was hyper thyroid since a year ago. I’m not keen on staying on PTU long-term due to the potential for liver issues.

Amy

[Naisly April 6, 2013 at 8:19 pm Post count: 143]

#1177955

I was quite curious because of how many new people ask, and for most part they never get an answer. It is almost as if people are afraid of the ‘C’ word, or perhaps they just don’t know.

I suppose the way I look at it is – I have done enough research on this subject to make someone’s skin crawl, countless studies and research. I know radiation is cumulative, it stays with you forever. I know RAI not only effects the thyroid but iodine concentrates in also gastric mucosa, salivary glands, mammary glands, choroid plexus, ovaries, placenta. So it is not necessarily the thyroid that can get the cancer, but there are a higher number or breast and stomach cancers.

But what I will say is, Yes you may get cancer, You may not get cancer. Then again you may or may not get into a car accident if you don’t wear your seatbelt. Or you may or may not kill someone if you drive drunk.

But suppose they are wrong, wouldn’t it be the prudent thing to do is error on the side of caution?

[Naisly April 6, 2013 at 8:31 pm Post count: 143]

#1177956

Oh to add to the above – They have been wrong many many times before.

One thing that comes to mind is DDT’s. Did you know they insisted this was safe, so safe their marketing had commercials where they would hang up wallpaper in children’s rooms using it among other examples.

Use of radiation has been controversial since they used in salons for hair removal.

[AzGravesGuy April 7, 2013 at 7:23 am Post count: 160]

#1177957

Naisly wrote:

I know radiation is cumulative, it stays with you forever.

This is misinformation. Only certain types of radiation are cumulative.

Are you speaking of ionizing or non-ionizing? Alpha, Beta, Black Body, Delta, ELF, Electromagnetic, Gamma, Infrared, Microwave, Neutron, Thermal, Ultraviolet, VLF, X? (Many of these we are constantly exposed to on a daily basis without even knowing it. Welcome to life on planet Earth.)

If RAI was not cumulative, ergo accumulated in the thyroid gland to destroy the tissue, it would not work. It has a widely accepted half life of 8.5 days however. 2 months after my treatment I was analyzed with a geiger counter and no radiation was found, aside from normal background radiation. So it does not stay with you forever. In my case, it did not stick around long enough.

To make such a blanket statement is irresponsible and plays on people’s fears of the unknown. This does not make a supportive environment for patients wanting real information.

Perhaps you should look further into your “skin crawling” research and make definitive statements instead of all encompassing half truths. If you have not researched that far, please refrain from making these bold assertions.

I could ramble off a list of purported cancer causing items from Asbestos to malathion to Red #40 to stress. Information is great. Feeding speculation and fear is not. With all due respect, please be more responsible with your words in the future.

[vanillasky April 7, 2013 at 7:33 am Post count: 339]

#1177958

Okay enough!!!!!!!!!!!!!!!!!!!!

I have opted for RAI and when the times comes, I’m doing it.

Will I get cancer? who knows? There are so many things that cause cancer, we are all sitting ducks and one thing is for sure, WE ARE ALL GOING TO DIE. Guaranteed. I bet on it.

What causes cancer? Hmmmmmmmmmmmmmmm.

1. cigarettes
2. Asbestos
3. genetics
4. sodium nitrite or sodium nitrate (so they say found in lunch meat)
5. Estrogen therapy
6. Testosterone therapy
7. Brominated Vegetable Oil
8. Food dyes found in lipstick? (don’t wear red lipstick, you just might get cancer)
9. Cell Phones? (brain tumors?)

So this is all b.s.

I’m 55 years old. How much longer do you think I plan on living? so what difference does it make if I get RAI and it causes cancer? Makes no difference to me than going across the street and getting hit by a drunk driver. Don’t fly in a plane, you might crash, don’t go skiing, you might hit a tree.

Nothing in life is guaranteed but death and taxes.

[KimberlyOnline Facilitator April 7, 2013 at 8:18 am Post count: 4294]

#1177959

I am copying and pasting a comment that was previously posted by the GDATF on Facebook in response to a poster who believed that anti-thyroid drug therapy should be the only choice offered:

It’s important to note that all credible medical agencies/resources state that ATDs, RAI, and surgery are each valid treatment options for hyperthyroidism due to Graves’; they also explain the risks associated with ATD therapy. This includes the ATA, AACE, Mayo Clinic, Thyroid Disease Manager, National Institutes of Health, etc.. For example, Thyroid Disease Manager states, “The difficulties [with ATD therapy] are the requirement of adhering to a medical schedule for many months or years, frequent visits to the physician, occasional adverse reactions, and, most importantly, a disappointingly low permanent remission rate.” TDM also goes on to discuss agranulocytosis as a rare potential complication of ATD therapy and notes that, “Reactions tend to be most frequent in the first few months of therapy but can occur at any time, with small doses of drug, and in patients of all ages.” http://www.thyroidmanager.org/chapter/diagnosis-and-treatment-of-graves-disease/ Many patients do have great results with anti-thyroid drugs. However, until there is documented, credible medical evidence that ATD therapy should be the *sole* treatment alternative for hyperthyroidism due to Graves’, we will continue to tell patients to consult with their doctors, research the risks and benefits of *all* three treatment options, and then make an informed choice.

It’s really doing patients a disservice to highlight the risks of one particular treatment option in an inflammatory manner, while ignoring the risks of the other options.

Instead, we all need to respect each other’s values, priorities, fears, and concerns when it comes to making a treatment decision.

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