[VanIsleGal]

#1058940

Yesterday I learned my Grave’s disease had returned for the 3rd time. I have refused RAI treatment in the past as I am not convinced it is safe and harmless. My endocrinologist has refused to treat me again with PTU or Tapazole. He says I must go for the RAI this time.

I read on http://www.breastcancer.org the increased risk for many cancers after 5 years of undergoing RAI. I can post this link if I am allowed to? The Thyroid Foundation of Canada says there is no increased risk of cancer from RAI. My doctor, from England sides with the TFC. He listens to my unease with RAI, but discounts all my concerns and the research I have read that suggests RAI does increase cancer rates. I am also concerned with any side effects from RAI.

I am confused about this and feel so crummy. I am on a permanent disability partly from Grave’s. I welcome any comments! I don’t feel so alone having this forum available!

Grace on Vancouver Island

[Kimberly]

#1171062

Hello and welcome!

One of the larger studies on cancer & RAI treatment for hyperthyroidism involved 35,000 patients who were followed for 20+ years. This study indicated no increased risk of death from cancer. However, other smaller studies have noted a slightly increased risk of specific types of cancer following RAI. Here are the links to studies that I am aware of; these specifically looked at RAI as a treatment for hyperthyroidism as opposed to thyroid cancer (which involves a much larger dose).

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

“Cancer Mortality Following Treatment for Adult Hyperthyroidism”
http://www.ncbi.nlm.nih.gov/pubmed/9686552

“Increased cancer incidence after radioiodine treatment for hyperthyroidism”
http://www.ncbi.nlm.nih.gov/pubmed/17393376

“Cancer incidence and mortality after radioiodine treatment for hyperthyroidism: a population-based cohort study”
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(98)12295-X/fulltext

We do have patients on this board who have had success with subsequent rounds of anti-thyroid drugs. (Although if you had a serious reaction to the drugs in the past, that could influence the doctor’s recommendation). Surgery is also a treatment option.

Bottom line, all three options have risks and benefits, so you definitely want to do your own research and make a decision that you are comfortable with.

Take care!

[snelsen]

#1171063

I can say that my personal experience is that I had extreme high doses for breast cancer sitting on my chest wall on both breasts (different years.)
Both occurred over 20 years ago. I don’t know how to compare that kind of radiation with RAI, though. I have been told that I have had my lifetime exposure of radiation, though.
Shirley

[Bobbi]

#1171064

You need to look at studies that involve the radioactive iodine treatment, not other forms of radiation. And, if you look at a study, you need to look at how many people were “participants.” Kimberly has given you some to look at, including the one that looked at 35,000 people. That is a statistically significant number.

Before we had our modern treatment options for hyperthyroidism, approximately 50% of the patients died. Keep that in mind, and know that ALL of our options are safer than that by a long shot. If you cannot take ATDs, then choose one of the other options.

[VanIsleGal]

#1171065

Thank you everyone for the responses! My endocrinologist just called and told me to go to the hospital, so I will be quick! My previous endo refused to treat me again with medication. He told me I would have to do RAI. He refused to do the surgery as a few of his patients lost their ability to speak or had complications. Now I am going to a great hospital where there are 4 endos so I don’t know what I will be told. My previous endo is 2 hours north as I moved in the fall.

Here is the link about increased cancer rates: http://www.breastcancer.org/risk/new_research/20070604.jsp

I also am at my max for radiation from my kidneys, so I don’t want more radiation. I am infertile from radiation as well. I believe RAI is not so popular in Europe due to radiation risks.

I will go to emergency now, hope you are all having a good day! xoxo

[PolishTym]

#1171066

I think RAI is right for some people, and surgery for others. I’ve read medical journal articles from different countries and found the Americans tend to be more liberal about when we are safe to be around others after treatment. Surgery tends to be more accepted elsewhere. [We won’t know the impact of RAI on cancer (or lack of) until we can do things like better isolate the variables. Large studies tend to be meta-analyses (studies that look at other studies) and the different research structures used for a variety of studies limit the reliability, which are weaker than large, singular studies. They are good for finding trends in other studies, but they have notable limitations.]

I’d be really concerned about your doctor if people have lost their voice, rather than the surgery itself. My endo was pro-RAI, but she told me that a particular surgeon was the surgeon she would go to if she needed work. I met with my eventual surgeon months before my surgery to check him out, and I met one of his surgical trainees and his physician’s assistant. The surgeon does about 300 a year, and was called a rock star by other doctors not in the same practice. So for me, that was convincing. If you can, consider finding a very good surgeon and get both sides. Go with the treatment within your comfort level.

[VanIsleGal]

#1171067

The endo that told me about surgery complications is now retired and he wasn’t the one doing the surgeries. This surgeon might still work in my current city…I don’t know his name. I think the endo told me the vocal cord could be cut by accident? I am in a different city now and am hoping my new endo will allow me to have the surgery. I would hate to have my voice gone permanently though. Has anyone else heard of this complication?

Enjoy the weekend xoxo

[Kimberly]

#1171068

Hello – Here is some information from the American Association of Endocrine Surgeons on the potential risks of thyroidectomy:

(Note on links: if you click the link below, you will need to use you browser’s “back” button to return to the forum. As an alternative, you can right-click the link and choose to open the link in a new window).

http://endocrinediseases.org/thyroid/surgery_complications.shtml

This site notes that injury to one of the laryngeal nerves that supply the voice box is a complication that occurs in about 1% of thyroidectomy patients. Injury to both nerves (which can necessitate the use of a tracheostomy tube) is considered extremely rare.

If you do decide to pursue surgery, you definitely want a “high volume” surgeon (usually defined as someone who does more than 50 surgeries per year) and preferably someone who is familiar with doing this surgery on Graves’ patients.

[LillyL]

#1171069

Hi I hope your visit to emergency wasn’t too serious. Which endo are you seeing in Victoria? I am very nervous about surgery or Rai. I hope things go better for you soon! Keep in touch, LillyL

[VanIsleGal]

#1171070

Hi LillyL!

We have the same endocrinologist! I see him on Wednesday and am happy to read and hear about his good reviews. I am really hoping for surgery. I still feel terrible and am waiting for my levels to go back to normal.

xoxo

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