Why are the post-RAI precaution recommendations ALL OVER THE PLACE?!?!?

Seriously, why are the post-RAI recommendations so inconsistent!! And why aren't we hospitalized for at least 24 hrs?!?! I have 3 children under 4, including an infant, and I'm going crazy trying to figure out how long to stay away from them! I of course will never do anything to put them at risk, but I also don't want to be away from them longer than I have to! I just got my 4 mci tracer dose and my cancer center said to stay away completely from my kids for 3 days, but then the nuclear medicine tech who gave me pill said I didn't have to stay away at all! Can't wait to hear what the differing opinions will be when I get my actual treatment dose! SO CONFUSED AND FRUSTRATED!

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44beaner, sympathy to you! The guidelines are based on making some cut-points on a continuous ramp-down of risk over time, so there is both uncertainty and judgment in doctors' guidelines. You are highest risk to others Day 1 and it declines continuously from there. The whole ramp down starts at a higher place if your dose is higher (100 vs 30 mCi). The receivers matter too, the younger the more at-risk. You might consider following the more conservative cancer center recommendation of 3 days. It may be an agonizing three days right now, but in the big picture, the protective step will benefit your little ones for the decades ahead in their long and healthy lives -- and in the fullness of time the three days will surely feel like just a blip! All the best to you.

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Hey Emmaleah- I'm totally hunkered down at my mother in laws for 3 days, and of course with all of my free time I'm researching what might happen when I get my actual treatment dose in two weeks. It's just so crazy because the recommendations about being away from your kids run from 5 days to 3 weeks, which makes a huge difference to the mother of a 4 yo, 2 yo, and 6 mo! And I of course want to follow the conservative recommendations, but I'm really hoping it doesn't have to be longer than two weeks! I'm barely going to make it through these 3 days! :(

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I just took 100mci of rai yesterday morning. My paper says avoid spending time with children and pregnant women for a week. The other recommendations are kinda conflicting. No prolonged auto trips with others for 48 hours but I can travel by airline or mass transport in 24 hours. Sleep alone and sole use of bathroom for 3 days. I've quarantined myself in the bedroom and attached bath for 3 days. I do go to the kitchen but I wear gloves when I do. I don't have small children but I do have a 14 year old son and 2 dogs. I'd rather be overly cautious to protect my family!

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I took 150 of RAI yesterday afternoon.... my dr said one week... im soo bored! i want to clean & do laundry but not sure if i should?

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I have read that you should throw away your toothbrush and brush after RAI and wash your sheets 3 times. What about your pillows and mattress? Does it not seep thru to your pillow. It is so confusing! I know people that have stayed in a hotel and my doctor said no way. Do i wear gloves to use the remote and computer and phone. I would love to stay in a hospital, my doctor said they dont do that anymore. I have RAI in 2 weeks. Sending my 5 daughter to my parents and my husband will sleep downstairs for 5 days.

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Do doctors ever keep you in the hospital to quarantine you ?

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I know in other countries its the standard to hospitalize RAI patients, but here in the US it's the exception, not the rule. Wondering if I should even try to wage a battle with my insurance company to get the option, as I have such young children at home, and don't have anywhere to go afterwards where I would have sole use of a bathroom.

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I am going to talk to the endo about it on Monday. With only one bathroom in the house, I don't know how to do this.

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We got frustrated & decided to pursue the active treatment at the Cancer Treatment Centers of America. They have agreed to keep my husband within their care for the 7 days he is "glowing". They pay the travel costs. We will pay a "hotel cost" of $40 a night while he is there - but he will be in a hospital room that they are responsible for keeping safe. The insurance won't pay the hospitalization - so they will treat the room as a "hospitality" room.

We will still pursue our medical recommendations from our cancer center in town - but we really did not like the hassle, fear and ethical considerations of exposing others of dealing with RAI in our home or a hotel.

Some of their hospitals do offer this care. Their Atlanta center is in our Blue Cross network.

We are traveling to CTCA next week to confirm the plans....but it feels like this solves many of our concerns.

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Cmich, i was admitted into the hospital for my RAI at 8am one day and released at 6pm the next evening when my radiation level was low enough. I think sometimes it depends on how high of a dose you are given (mine was 200mCI). My sis-in-law was given a dose of RAI for graves disease and they sent her home right away with isolation instructions.

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44 Beaner, you are absolutely right, the guidance is all over the place, and yes, with your family situation, you should by all means fight for inpatient treatment.

First a little background. Why do we have this situation? Because the rules are made by the Nuclear Regulatory Commission, the agency which regulates nuclear power plants. For the NRC, nuclear medicine is a sideline. 16 years ago, in 1997, the NRC was persuaded to deregulate RAI treatment. Why? Essentially because too many hospital doctors and staff were afraid of the radioactive patients and wanted them someplace else. In addition, patients are so radioactive that the hospitals had to leave adjoining rooms empty, because of the radiation coming through the walls. Empty rooms means money lost.

But that is not what the NRC Commissioners were told. Instead, they were told that this was for the good of the patients, because it allowed families to be reunited sooner, and this contributed to good medical outcomes.

Back when I was being treated with RAI, in the late 1980's and early 1990's, you could not be released from the hospital in the U.S. until the level of RAI in your body was down to 30 millicuries or less. Mostly that was a matter of urinating it out of your system. Even that standard is lax compared to present standards in Europe, Japan, the Philippines, etc. (8 to 15 millicuries)

So the NRC adopted an alternative standard. It is still in place today. It says that you can be released so long as the calculated dose that anyone else receives FROM you will not exceed 500 millirems. But that means an individual calculation: where do you sleep in the house, who sleeps near you, how close will you be to others for how long, etc. In practice, that rarely happens. Patients are told, "Here is the guidance to follow, and if you do so, everything will be fine." Sometimes they don't get even that.

500 millirems, incidentally, is five times as much as is recommended by national and international radiation protection organizations.

When the NRC Commissioners approved this change, they thought that care would be tailored to the individual case -- that someone who had children at home could stay in the hospital, while someone who lived alone and could take care of herself or himself could go home. It did not work out that way in practice. Insurance companies, which in the past had always paid for inpatient care, stopped doing so, in most cases, on grounds that it was not required and was medically unnecessary for the patient. (That's true -- it's not the patient whose health is at risk from outpatient treatment, it is the patient's loved ones.)

So now we have people being sent home with 200 millicuries or more in their systems. We also have RAI being given out by institutions and doctors who have no capacity to hospitalize patients. For them, outpatient treatment is the only option.

In 2004, an international organization, the International Commission on Radiation Protection, put out a study of the danger posed to children by patients given RAI. In response, the NRC put out an advisory in 2008 saying that doctors should "consider" hospitalizing patients with young children at home. But it was not binding and is being ignored.

NONE OF THIS, HOWEVER, EXPLAINS THE LACK OF CURRENT GUIDANCE. If doctors go to the NRC's published "regulatory guide," which includes guidance on what to advise patients, they find a sentence suggesting that they write off to the Society of Nuclear Medicine to obtain a pamphlet published in 1987. That pamphlet has been obsolete for 16 years, ever since the rule was changed in 1997 to allow high-dose treatment on an outpatient basis.

I have tried for years to tell the NRC that new guidance, appropriate to the current rule, is needed. Recently the NRC's Patient's Rights Advocate, Laura Weil, described in a public meeting how at the ThyCa conference last year, she approached 25 patients at random, and when she asked them about the adequacy of the guidance they got, 24 said that it had been inadequate.

There are a number of medical journal articles that make the same point. And anyone who reads this site sees that patients are floundering in the dark, year after year, because they are getting conflicting information, both from individuals and from websites.

I don't want to make this too long, but yes, by all means fight for inpatient treatment. Others with small children at home should do the same. Get in touch with me if you like. I can also put you in touch with people at the NRC who might be helpful.

-- Peter in Seattle, 40-year survivor
retired NRC lawyer (1975-1999)

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It is better safe than sorry. I took a dose of 75 mCI on Wednesday, and I dropped my wife off at our daughter's the day before. It actually worked out better this way as I have a bit more freedom in the house instead of being confined to one room.

My father was treated for a hyperactive thyroid back in 1960 when there was no limitation other than the hospital staff serving the pill or liquid on a long stick. It was a military hospital, I guess you can't expect too much. He was sent home with no restriction to our home with my mom and four kids. I was two at the time along with my twin. Not sure if it was the cause, but here I sit with thyroid cancer. My wife will be gone for about two and a half weeks, and I will be using my SOEKS radiation detector to check the house before she comes back. Got it off of Amazon for about $150. I can actually see the radiation background lower each day. Three days later, and I am at 28 microsieverts/hour at a one and half foot distance from the detector. Keeps me entertained.

On a side note, I had a VA hospital appointment a month before being diagnosed with the cancer. At the appointment, I told the doctor that Kaiser Permanente said they had a concern about the biopsy I had and that I needed a second one. The VA doctor seemed not to care, and told me to make another appointment in a year's time. The second biopsy came back positive for cancer. Now everyone will know what to expect with the new government run healthcare.

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Wow! That is crazy! I got on Monday to see the new endo and I am anxious to see what he has to say. There are Cancer Treatment Center of America around me and I am going to check that out.

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I am so impressed with Kaiser Permanente. I had surgery to remove my thyroid less than two weeks after being diagnosed. The surgery went well, not much voice change or loss of para-thyroid. Healed quick and was back to work after two weeks. It was done in early June, had I even had a minute chance that the VA or Tricare would have diagnosed it, I most likely would still be waiting for a surgery date.

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The funniest thing happened when I went back to the hospital the next morning for a blood draw lab test. The doctor told me to go up to the counter and in a very soft voice tell the person that I had RAI treatment the day before. That person then asked where I was going to be. I told her that I would be way over on the other side of the room away from the other patients. Well the lady she was helping just kept staring at me as if I had the plague and she was exposed. Even after I sat down, she kept staring. I wanted to wave at her, but didn't want the chance of her freaking out.

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Thank you all do much for the responses. Peter in Seattle you have been so helpful. I'm scheduled for thyrogen shots sept 29 and 30th and then RAI Oct 2. With 4 kids in my house, youngest 5 yrs old, I'm really not comfortable at home for the first 3 days after treatment. I have confirmed that my insurance will cover 80% of the cost. When asked about staying in hospital, my Endo responded that they don't do it there anymore. However, since that appointment I have learned much about radiation, the effects on children specifically and that it remains for such a long time, that I plan to call my doctor on Monday to insist he send me to a hospital. With the information from my insurance company, I can't see why he would not be able to change my appointment from the outpatient to the hospital but I'm still nervous it will be a fight. I'm not one to ruffle feathers but this is about the best for my family.

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Hoosier 74, if I can help, call on me. Through the website or by phone, two oh six, seven eight three, eight four eight five. (Seattle time.) And I can refer you to the folks at the NRC. It makes no sense, if the insurance company is willing to pay eighty percent, that the endo should be the one standing in the way. Even if you have to wait a few days with the RAI in order to get this straightened out, it's worth it, since those few days aren't going to make any difference to your health. And keep in mind that though this is a rotten thing to go through, there are brighter days ahead. Take care.

-- Peter in Seattle
40-year survivor

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44 beaner, as I just wrote to Hoosier 74, let me know if I can help.

-- Peter in Seattle
40-year survivor

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Peter in Seattle, thank you for a very illuminating post. I always assumed insurance companies were behind the isolation change in '97.

I was told by my endo that I was overreacting regarding the precautions I took at home to protect my child during my RAI, but I don't care -- I'd much rather have peace of mind. The guidance I got from the endo and the hospital employees were all over the map. One radiation doc at the hospital, after overhearing another doc tell me there was no need to send my daughter and cat away for a week as I had planned, came over and said quietly, "Don't change your plans; if you have somewhere to send them for the first week, do it." It really hit home that there are NO set guidelines as to what these folks are taught.

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