questions about radioactive treatment

[yancy1966]

I am 41 and was diagnosed with papillary cancer after thyroidectomy. Pathology found it was encapsulated in thyroid. I am scheduled to have a dose of radioactive iodine mid February.
I have been told to stay away from people for 3 days after dose since I will be radioactive. How dangerous is it for me to be around my self? I wanted to know the long term side effects of this treatment. Are there any links to this treatment and onset of other cancers?
I have been told the prognosis is good, but, still worry about recurrance.
Any advice from dr or those who have been through this would help.
LEanne

[Windspirit]

Personally I was pissed I wasn't told more before I had my RAI back in Dec. 05.  They rushed me into it said it was a must after having my thyroid removed.  I had papillary on both sides a and a small amount of follicular on the left side.  They actually told me I couldn't be around anyone for 5 days, I had it done 5 days before xmas.  I did not know that 5 other parts of my body absorb iodine besides my thyroid.  The RAI made my stomach upset so they gave me some medicine to counteract the naseau.  This put me to sleep and I slept the first 10 hours after the treatment.  I woke after about 5 hours with my glands swollen and hurting.  I found out the next morning that they expect you will "flush" out the RAI from your body before it can damage any of the other organs that absorb it, like your breast tissue, stomach, spleen and most noticeably your salivary glands.  I mentioned it would have been nice to know that prior to sleeping for the 1st 10 hours.  I should have been drinking water like a fish and pissing away all that nasty stuff.  Personally, depending on the pathology report, I would have chosen not to do the RAI unless I had some kind of test results showing new cell growth.  I had absolutely no sense of taste for 2 months and heard I was lucky it came back that fast.  I had kanker sore like outbreaks in my mouth for the next year that were painful as hell and felt like battery acid erupting from inside my mouth wall.  The doctors will say it is the only way to insure that all the cancer cells are gone but to be honest if yours was encapsulated inside the thyroid like mine was (they also took out 6 surrounding lymph glands, just to be on the safe side, no cancer present in them) I would refuse to do the RAI.  They said I may have contracted the cancer from overexposure to radiation when I was a child.  I had chronic bronchitis as a child but they said all the xrays I was getting were "safe".  Just like they say the RAI is "safe" now. My 2 year check up was this month.  They did an ultrasound which was completely clear.  But they still wanted to do a PET scan.  Which requires me taking another small dose of RAI and getting scanned.  I decided that if it's too small for the ultrasound to show it, it's too small to kill me and I will wait until such time before I allow any more RAI in my body.  I am still periodically having issue with my salivary glands, not as often but every now and then.  Also, most docs don't like it and won't prescribe it but I have used Armour Thyroid and have done very well on it. Because of your age you need to watch the hormone levels.  Menopause will cause all kinds of havoc in trying to get your thyroid levels stabilized.  If you let them give you synthetic hormones, it can so totally mess you up, raise your cholesteral levels, all kinds of side effects.  I would use only bio-identical or natural methods to balance your hormone levels.  Read up on Maca root and check out the website www.vitaleffects.com.  I have been using their cream to balance mine along with the Maca root and it has done more than all the junk the docs had me on.  Good Luck!!

[Windspirit]

I have been corresponding with another RAI victim named Stella.  SHe was given the treatment because she had Graves disease and her blood work was actually getting better but they gave it to her anyway.  Her sense of taste and smell has been gone for 5 years and she has had all kinds of other issues.  When she questioned her doc about why it was necessary to put her through all that he said he did it because "she wanted it".  He said she probably didn't even need it in hindsight, oh well.  makes you wish you could drag him in there and him him a good sized dose of RAI and see how he feels about "oh well" afterwards.  I would explore all other options before even considering it.  By the way, she said that she had been on the Synthroid for years and felt like **** and has only recently starting feeling better and it was after switching to Armour thyroid.  I have been on it since I had my surgery since I researched it very extensively and read many forums with people's experiences and decided that's what I wanted to use.  Sometimes hard to find docs who will prescribe it but if they won't you don't want them for a doc because they are too short sighted and closed minded to explore all the options you will need and want.  Please let me know how things go,

[stella5349]

Hi I'm the Stella and I am 42 yrs old.

Yep I too was pushed into the RAI treatment. Trust is such a blind thing!!Little did I know then I did have choices. I trusted the endo because the Hyper/ Graves was scaring the heck out of me. I NEVER RESEARCHED RAI prior to having it. The day I had RAI until now, I have a mild sore throat constantly "feeling like something is stuck in there." I have minimal taste and smell sometimes none at all. After going back to the endo I suppose "complaining" I felt like ****.--- He dismissed me saying I could be having a brain anyrusum. ( I gotta learn how to spell that word!!)  I now am hypothyroid for life. It's like routine for these docs (RAI/surgery then drugs for life. )

It is speculated that going through what I have, might have put me into a perimenapausal state at this time ---- which will completely play havoc on your whole system.

Now - your diagnosis is papillary cancer - which is very different then me. RAI treatment may be an option for you. I would ask questions regarding your options and treatments before you sit in a nuclear room at a hospitol, sign a release form of all liability, and shove a pill down your throat that ----you know -----will change your life forever.

Armour thyroid has been a welcomed change for me since Synthroid. I believe in Yancy's natural ways and want to continue moving into that direction. The sources on this forum just in the short time I have been here really opened my eyes.

Keep posting and send me a message on your decision. I hope everything goes well for you and you can move forward to better health quickly.

Take care "strive for optimal health"

[stella5349]

Opps, thinking to fast


WINDSPIRIT's idea of natural treatments. Sorry hun -- still got a little brain fog this weekend    :)

[utahmomma]

Okay - not to be confrontational (and I know I'll get flamed) but RAI treatment for Graves is a different realm than RAI for cancer.

After thyroid cancer surgery the *only* way to ensure that any remaining thyroid tissue and/or thyroid cancer is identified and destroyed is through RAI.  Because of Yancy1966's age (nothing personal Yancy - I'm the same age) she is at higher risk with the thyroid cancer.   My papillary carcinoma was small and encapsulated too (5mm) but I had a recurrence three years later and needed the RAI.  Now it looks like I may have metastases in my head and will (possibly) be looking at surgery and another dose of RAI.  For cancer patients there isn't an option.   Yeah, it has destroyed my bones, caused arthritis, and I feel horrible but it's the only way to kill this cancer.

Utahmomma
papillary carcinoma '03
three sisters diagnosed with papillary carcinoma '04
recurrance and RAI '06

[stella5349]

Not confrontational at all Utah. Reflecting back on my situation of Graves Disease I wish I would of explored my options before RAI.

[redhed87]

I agree with Utahmomma too.  Unfortunately, it is the only way to treat pap. cancer.  I had RAI after my tt for thyriod cancer.  My cancer was multifocal- one was 2.5 cm and the other was .1cm.  I also had two lymph nodes with cancer as well.  I luckily went on this site and researched RAI- I had the sour candy, water and everything.  I was so hypothyroid that I couldn't take showers because I couldnt' control my body temperature.  I am afraid of the outcome, but think of chemotherapy and radiation for other types of cancer.  That has horrible effects on the body too.