RAI restrictions: Doc says no restrictions on 100mCi dose?!

[darksuns]

I had a total thyroidectomy on Dec. 11th. I'm scheduled for RAI treatment on Feb. 5th with an uptake scan first. Their scheduled dosage for me is 100 mCi (or higher if the scan shows that I need it.). My doc said that there will be NO restrictions on who I can be around, what I can touch, etc. I have a two year old son, a husband, and I have a sinking sensation that my doc is full of it! For those who have had RAI or are going to, what dose were you given or will you get? Have you been informed of restrictions after your treatment? I have called my son's pediatrician, my surgeon, my primary care doc, and consulted 50 different websites. Every single one has told me something different. Help me out here. Please.

[redhed87]

Just a tip- my teeth felt "hairy" after my RAI treatment:.  Rinse your mouth out with baking soda and water 3 times a day.  It helps very much and also helped get my taste back.  This can be harmrul to your teeth.

[MJ13]

Don't forget to take your laptop so you can keep us updated on how you're doing.  Hope you got plenty of gloves.  I went thru tons of them from having to go to the bathroom so much in order to flush out your system.  

You could by really cheap flat sheets(I bought mine at Wal-Mart)  to put over the furniture instead of plastic.   That might be a little more comfortable.  

Also take hard candies to suck on for you saliva glands.  Sour candies are usually recommended.

Good Luck and welcome to the Glow Club!

[Venora Moonwind]

good for you darksuns. It will al be over before you know it.
K2kids your body did take the raidation cause the salivary glands and your taste buds are affected. I took about a month after RAI  foir food to taste good again.
Love Venora

[K2kids]

Good for you on taking care of the situation. It will be best for you to stay away from your child and husband for a week. My husband just came back to our bed for the first time in 2 weeks because he was worried.
I like you am worried if the treatment will work? I go back to the doctor tomorrow morning to get the results of my body scan. I know my body did not take to well to the radiation cause it did go into my salavary glands and now all the food I eat tastes bland. You keep your spirit up and you will get threw this!

[darksuns]

Well, I've talked to several people about this subject. I spoke to my states Office of Epidimiology and Office of Environmental Epidimiology. I've also spoken to the Radiation Officer and the Director of Radiology at the hospital that will give me my treatment. Everyone has a different opinion, but every single one says I should be in isolation for at least 24 hours. Some say I should be away from my family altogether for no less that 3 days. All say I shouldn't make food for anyone else or touch or hug my son and husband for at least 4 days. I am also supposed to use disposable kitchen supplies and use a seperate bathroom. So, I'm putting my foot down and making my own restrictions. I will be in complete isolation at a friend's vacation house for 7 days. I'm going to put plastic on the floor, over the doorknobs, the tv remote, the couch, etc. I have gathered stacks of magazines that can be thrown away. I bought gloves, plastic utensils, even scrubs so that I can either throw items away or clean them thoroughly. My husband is going to take a weeks vacation from work so he can watch the baby.

So there. I'm sick of getting different answers so I'm taking things into my own hands! :)
Is there anything I missed? Anyone have any suggestions?

Now that that's situated, I have to worry about whether the treatment will work, how I'll react to it, etc.....  Sigh.

[K2kids]

I had RAI on Jan 14th with 100.7mCi and I still have not been able to kiss my children. I was in isolation for 7 days. In my own room, using my own shower, toilet and sink. I am lucky enough to have my master bedroom and bath away from where my kids rooms sit. I came out to get my meals using gloves that the hospital gave me. I did use all throw away products. I had to wash my clothes, towels and bedding separate from the rest of families things. I had to go back and have my radiation levels checked a week after I took the pills. I was still on the high side and told to stay away from my children for another 5 days and not to kiss them until Monday, 1/28. I know it varies from state to state on the restrictions, but I would stay away from your child for at least a week. I wish you the best and hope you have a good outcome after your RAI is complete.

[MJ13]

I sent an email to the National Cancer Institute about restrictions after getting RAI.  Long story short...your doctors are trully full of doo-dooo.  Below is the full response I got from the NCI.  Hope this helps.  I would print it out and show it to your doctors.

This is in response to your e-mail to the National Cancer Institute's(NCI) Web site, www.cancer.gov, regarding possible restrictionsregarding contact with people and animals after receiving radioactiveiodine therapy for thyroid cancer.   It is understandable that you are concerned.  Although the NationalCancer Institute does not offer guidelines for precautions withradioactive iodine (I-131), we hope you will find our informationhelpful. Many people get I-131 therapy in a clinic or in the outpatient area of ahospital and can go home afterward. Some people have to stay in thehospital for one day or longer. Ask the health care team to explain howto protect family members and coworkers from being exposed to theradiation.  For more information about radioactive iodine (I-131) andthyroid cancer, you may wish to review this NCI resource:  What You Need To Know About(tm) Thyroid Cancerhttp://www.cancer.gov/cancertopics/wyntk/thyroid/page9#treatment3 In addition to speaking with the doctor, the American College ofRadiology and the Radiological Society of North America providesinformation about precautions to take after receiving radioactive iodine(I-131).  The patient will be able to return home following radioactiveiodine treatment, but should avoid prolonged, close contact with otherpeople for several days, particularly pregnant women and small children.Nearly all the radioactive iodine leaves the body during the first twodays following the treatment, primarily through the urine. Small amountswill also be excreted in saliva, sweat, tears, vaginal secretions, andfeces.  The treatment team should give a list of other precautions totake following treatment with I-131. These guidelines comply with theNuclear Regulatory Commission.  You will find more information onprecautions and recommendations in this resource:   RadiologyInfohttp://www.radiologyinfo.org/en/info.cfm?PG=radioiodine&bhcp=1 You may also wish to contact organizations that may provide additionalinformation and emotional/social support such as the American CancerSociety and CancerCare, Inc., Thyroid Cancer Survivors' Association.Contact information for these and other organizations is listed on thisNCI resource: National Organizations That Offer Services to People With Cancer andTheir Familieshttp://www.cancer.gov/cancertopics/factsheet/support/organizations If you would like to learn more about thyroid cancer, includingtreatment, as well as coping and support resources, you can explore thisNCI Web page: Thyroid Cancerhttp://www.cancer.gov/cancertopics/types/thyroid If this material does not answer your questions, we invite U.S.residents to call the NCI's Cancer Information Service (CIS) forpersonal, confidential help. The CIS is the source for the latest, mostaccurate cancer information for patients, their families, the generalpublic, and health professionals.  To talk with an InformationSpecialist, in English or in Spanish, please call 1-800-4-CANCER(1-800-422-6237).  For callers with TTY equipment, the number is1-800-332-8615.  CIS Information Specialists also offer onlineassistance through the LiveHelp link athttps://cissecure.nci.nih.gov/livehelp/welcome.asp on the NCI'sCancer.gov Web site. Information about the NCI's Cancer Information Service is available at:  The National Cancer Institute's Cancer Information Service: Questionsand Answershttp://www.cancer.gov/cancertopics/factsheet/Information/CIS For further information, people outside the United States may wish tocontact an organization in their country that offers informationservices.  A list of organizations that serve as International CancerInformation Services is available at:  International Cancer Information Service Grouphttp://www.icisg.org/meet_memberslist.htm#full Additional resources may be available through organizations listed inthe International Union Against Cancer's Membership Directory at:  International Union Against Cancer Membershiphttp://www.uicc.org/index.php?id=518

[AR-10]

If your Endo can't answer the question, I would question his/her competence, frankly.

My Endo administered the RAI herself.

When you take that pill and it starts working, it is going to be all through your system for a few days. You will be sweating radioactive fluid. Everything you touch will have a residue of radiation on it.

That is not a matter of discretion or opinion. It is a matter of fact. The radiation has a half life of 8 hours, which means 8 hours later it will only be half as radioactive. In another 8 hours, half of the half. At that rate it will still be emitting radiation for days.

I'm not saying that to scare you, because you need the radiation to do it's job in your body.

But you don't need to be walking around the public contaminating everything you touch or riding the bus next to a pregnant lady.

I am shocked by the answers you have been getting locally, frankly. Twenty years ago RAI was only done in the hospital, and you stayed put until it was safe to leave. The insurance companies had a large part in doing away with that policy.

The fact that a Radiologist doesn't think isolation is required stupifies me.

But when you're as close to stupid as I am, that doesn't take much. :)

I'm not trying to shake your faith in your doctors, but I am saying what I posted here is so obvious anyone with a medical degree should know it.

I hope you find someone who can tell you properly what you need to do.

[MJ13]

This is from the National Cancer Institute (url: http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation)

Will radiation therapy make the patient radioactive?

Cancer patients receiving radiation therapy are often concerned that the treatment will make them radioactive. The answer to this question depends on the type of radiation therapy being given.

External radiation therapy will not make the patient radioactive. Patients do not need to avoid being around other people because of the treatment.

Internal radiation therapy (interstitial, intracavitary, or intraluminal) that involves sealed implants emits radioactivity, so a stay in the hospital may be needed. Certain precautions are taken to protect hospital staff and visitors. The sealed sources deliver most of their radiation mainly around the area of the implant, so while the area around the implant is radioactive, the patient’s whole body is not radioactive.

Systemic radiation therapy uses unsealed radioactive materials that travel throughout the body. Some of this radioactive material will leave the body through saliva, sweat, and urine before the radioactivity decays, making these fluids radioactive. Therefore, certain precautions are sometimes used for people who come in close contact with the patient. The patient’s doctor or nurse will provide information if these special precautions are needed.


I actually sent an email the the National Cancer Institute to see what their guidelines are on restrictions after RAI treatment.  When I get an answer, I will pass it on.

[darksuns]

Yes, I have an endo, but he said (and I quote) "I'm going to defer to the radiologist on that question.)
So, today, I've been all over the place online looking for information. I've emailed two people in the Office of Public Health for the State of New Mexico. I've emailed one person at the US Nuclear Regulatory commision. I have also spoken to a doctor at the NM Office for Epidemiology. That doc was going to refer my question to another doctor at the NM office of Environmental Epidemiology. So, I'm awaiting info from SOMEONE on this. Is it wrong for me to think this kind of thing should not be left up to some doctors personal opinion? This should be regulated for everyone. Period.

"If you get X amount of I-131, these are your restrictions."

I'll let you guys know if anyone contacts me. The doc from the NM office of epi... told me that it may be tomorrow before anyone gets back to me. Big surprise. Sorry, I'm getting a little bitter......:)

[AR-10]

Do you have an Endocrinologist?
If so, call and ask the Endo.

[darksuns]

It was the radiologist who told me that there were no restrictions. Do you have any idea where I would find out what my states regulations are regarding this subject? I live in NM. New Mexico Department of Health maybe? I'm getting pretty worried. :)

[Venora Moonwind]

yeah your doc is full of double doodoo is he nuts ? see if he will let you hang around him after you get your 100 mc i bet he backs up. the others are right. stay in isolation and you will be ok I rTalk to the radiologist is good advice I rather enjoyed isolation as there were 7 people living in my house when I had mine done. good luck and keep us posted. Oh I had a thought print this out for your doc and show it to him,
Love Venora

[MJ13]

Your doctor is full of doo-doo!!! Any living being with a thyroid (cats and dogs included) can be affected if exposed to someone who has RAI.

Every state has different regulations on the amount of time a patient should be in isolation following RAI.  I live in Virginia and my doctors had my is total isolation for 48 hours following my RAI dosage of 100 mci's last year.  I had to do just like the others describe...paper plates, latex gloves, ets.  I even wrapped my cell phone in plastic wrap so I wouldn't contaminate it. I just had 4 mci's last week and was told to stay away from kids and pregnant women for at least 48 hours.  Just to be safe I stayed home from work the next day and sent my dog to a sitter.  

I would ask the radiologist who is giving you your RAI what type of restrictions are necessary.  That's who told me my restrictions, not my endo.

[utahmomma]

Your doctor is full of it.

I had 100mCi too and I was isolated for five days (minimum).  Don't risk your 2-year old child and your husband's health.  While you may feel fine you aren't.

[blksapphire]

I received 18 millicures to ablate my thyroid.  100 mCI's is 5  times what I had.

I was in complete isolation for 4 days and spent another 3 days with limited  contact with people and animals.   I was told no physical contact with anyone. I could not sleep in the same bed with anyone until after the isolation period. No exchange of bodily fluids (kissing, etc.) I could not touch my cats.

I was told to used paper plates, cups and utensils, usemy own bathroom (flush twice), and washed my clothing separately form the rest of the family's for at least a week.

I was given clearance to go back to work after the 7th day and it was  printed on my return to work form, "no contact with pregnant women for another 11 days" and minimal contact with everyone else.  

In a nutshell, I was in prison.  I only needed a tin cup......

This thing is no joke.. I would ask again.

[AR-10]

I had RAI Friday.

The dosage I was given was 12 microcures, or whatever they call it. I was in isolation for three days. That dose is supposed to be enough to kill my entire thyroid.

Unless 100mCi translates to one of the twelve I got, you are getting a massive dose and isolation for at least a week is probably required.

There are many thyroid cancer survivors posting here and I am sure they will have better information on how they were treated, but I believe isolation is required.  

[redhed87]

I was in isolation in the hospital for 2 days and then at home for 5 more days in isolation.  I was told no physical contact with anyone, I could not sleep in the same bed with my husband until after the isolation period. No exchange of bodily fluids (kissing, etc.) I did not even touch my dogs.  My daughter stayed with my sister and when she did come home to visit, I saw her from across the house- no physical contact (very sad).  I used paper plates and utensils, my own bathroom, and washed my clothing separately form the rest of the family's.  My sister was pregnant at the time so I didn't see her for at least 2 weeks to be safe.  I believe I had 100mCi as well, whatever the standard dose is.  That seems strange about what he said.  I'm sure you will hear different stories, but on this forum, it has pretty much been the same.  I would take precautions, especially with your son.