Scared and confused.....
Nov of 07 I under went a total thyroidectomy and had all the lymph nodes in my neck removed because the cancer had spread to them as well.
After my surgery I had to go thru RAI and the dose I went thru that time was 175 mci. After the body scan came back good. I thought it was all good to go.
I found out 30 July this year that my follow up full body scan showed spots that had came back in my neck. The doctor said they are only going to give me a RAI dose of 100 mci this time.
My questions are...
Is it common for the cancer to come back? All the research I have done has said it normally takes years for it to come back and mine has came back in 18 months.
Do you have any idea as to why they are going to be doing a lower does this time?
And what is the purpose of the RAI?
Sorry for all the questions, but as bad as this sounds, I can't really understand my doctor because of her accent. So I dont have a clue what is going on.
Thanks for your help!
Crystal
Comments
-
Hello
Hi Crystal,
I'm not sure how common it is for the cancer to return, but it did for me as well. I had a thyroidectomy in 2005, and before the end of 2006, the cancer returned. Mine had not yet spread to the lymph nodes, but my surgeon removed quite a few just as a precaution. So I have had 2 surgeries.
Your doctors may be giving the lower dose this time since they have detected it so early on, and you have just been through radiation therapy recently already. Just curious? Did you go on the iodine free diet??
The way my endo explained the therapy made a lot of sense. He said I had to go on the iodine free diet, to "starve" the thyroid area. Since iodine is absorbed through the thyroid, not having it would highlight any areas of concern when the radiation was taken. The RAI, since it has iodine, would go directly to the thyroid area, since it had been "starved" , and destroy any cells trying to form another tumor.
I hope this makes sense!
Julie0 -
The first time I went thrubowlwarej said:Hello
Hi Crystal,
I'm not sure how common it is for the cancer to return, but it did for me as well. I had a thyroidectomy in 2005, and before the end of 2006, the cancer returned. Mine had not yet spread to the lymph nodes, but my surgeon removed quite a few just as a precaution. So I have had 2 surgeries.
Your doctors may be giving the lower dose this time since they have detected it so early on, and you have just been through radiation therapy recently already. Just curious? Did you go on the iodine free diet??
The way my endo explained the therapy made a lot of sense. He said I had to go on the iodine free diet, to "starve" the thyroid area. Since iodine is absorbed through the thyroid, not having it would highlight any areas of concern when the radiation was taken. The RAI, since it has iodine, would go directly to the thyroid area, since it had been "starved" , and destroy any cells trying to form another tumor.
I hope this makes sense!
Julie
The first time I went thru the RAI I did have to go on the diet.. I ended up being on it for a month. So I went thru a month without my meds and on that diet.. which sucked at the time!!
Now, i guess they way they do it is I just get the Thyroidgene shots on monday and tues and then wends i get the dose.
I am just really glad that I don't have to be on that diet anymore.
And yes it makes sense! Thank you so much!0 -
Good=)Crys218 said:The first time I went thru
The first time I went thru the RAI I did have to go on the diet.. I ended up being on it for a month. So I went thru a month without my meds and on that diet.. which sucked at the time!!
Now, i guess they way they do it is I just get the Thyroidgene shots on monday and tues and then wends i get the dose.
I am just really glad that I don't have to be on that diet anymore.
And yes it makes sense! Thank you so much!
I'm glad it made sense That diet really is horrible! I was entirely too cranky the whole time I was on it! I guess it's a small price to pay though when you have something invading your body, and it's what will help you get better. I had to keep telling myself that when I thought I would go crazy!
Are they hoping the next radiation dose will make the tumors diappear? Or have they talked about another surgery? I'm surprised you don't have to do the diet again......0 -
They can't do anotherbowlwarej said:Good=)
I'm glad it made sense That diet really is horrible! I was entirely too cranky the whole time I was on it! I guess it's a small price to pay though when you have something invading your body, and it's what will help you get better. I had to keep telling myself that when I thought I would go crazy!
Are they hoping the next radiation dose will make the tumors diappear? Or have they talked about another surgery? I'm surprised you don't have to do the diet again......
They can't do another surgery... I have nothing in there for them to take... They took all of my thyroid and all of my lymph nodes.. which is another reason why they are worried that it has came back.. There really isn't alot of places that it could come back in. But it has. They are more worried about it spreading to other parts of my body now.
My doctor told me that the shots are suppose to be taking place of the diet. That you dont have to do it anymore. But I don't know. She changes her mind what we are going to do every day it seems. So tomorrow she could call me and say that I do have to do the diet. Just hope not!0 -
It wouldn't hurt--and might
It wouldn't hurt--and might help a little--to reduce your iodine intake prior to RAI. Switch to plain salt, stop taking multi-vitamins, and don't eat any seafood. That will go a long way toward reducing the amount of iodine in your body to give the radiation in the RAI a better chance for working.
Yes, thyroid cancers can recur and do so regularly. That's the bad news. The good news is thyroid cancer (papillary and follicular) are rarely fatal. They grow slowly and announce their presence through scans and/or thyroglobuin tests so you and your doctors can chose the next step. There is rarely any need for speed. Slow and deliberate consideration of your best treatment options will be the best strategy.0 -
Lucky for me, I dont reallyJAWsSavannah said:It wouldn't hurt--and might
It wouldn't hurt--and might help a little--to reduce your iodine intake prior to RAI. Switch to plain salt, stop taking multi-vitamins, and don't eat any seafood. That will go a long way toward reducing the amount of iodine in your body to give the radiation in the RAI a better chance for working.
Yes, thyroid cancers can recur and do so regularly. That's the bad news. The good news is thyroid cancer (papillary and follicular) are rarely fatal. They grow slowly and announce their presence through scans and/or thyroglobuin tests so you and your doctors can chose the next step. There is rarely any need for speed. Slow and deliberate consideration of your best treatment options will be the best strategy.
Lucky for me, I dont really use salt or eat sea food. So I am not too worried about that part of the diet.
Its just weird that the cancer comes back. When I had my surgery. After wards they told me that I was pretty much set about it not coming back. And now hearing that it is back. Is really throwing me for a loop right now.0 -
Me tooCrys218 said:Lucky for me, I dont really
Lucky for me, I dont really use salt or eat sea food. So I am not too worried about that part of the diet.
Its just weird that the cancer comes back. When I had my surgery. After wards they told me that I was pretty much set about it not coming back. And now hearing that it is back. Is really throwing me for a loop right now.
When I found out that mine had recurred, it was almost worse than the first time. It was less than a year from the first one, and I was thinking.....you have to have this wrong! It's just scar tissue or something....but no...it was positive for the cancer again. It's hard to gather your thoughts and make a good decision because it is already so hard just dealing with what you know.
Are you closer to your family now or are you still having to go through all this alone?0 -
yeah..bowlwarej said:Me too
When I found out that mine had recurred, it was almost worse than the first time. It was less than a year from the first one, and I was thinking.....you have to have this wrong! It's just scar tissue or something....but no...it was positive for the cancer again. It's hard to gather your thoughts and make a good decision because it is already so hard just dealing with what you know.
Are you closer to your family now or are you still having to go through all this alone?
yeah it does suck now... the first time scared me so much... but for some reason, finding out that it has came back it has just gotten to me more than before. just makes me think that i did something wrong that has made it come back.. but i dont know.
Yeah i'm closer to my family now. They are only bout 20 mins away. My mom is trying her hardest to keep telling me that everything's ok. But its still scary and confusing.0 -
Low Iodine dietCrys218 said:The first time I went thru
The first time I went thru the RAI I did have to go on the diet.. I ended up being on it for a month. So I went thru a month without my meds and on that diet.. which sucked at the time!!
Now, i guess they way they do it is I just get the Thyroidgene shots on monday and tues and then wends i get the dose.
I am just really glad that I don't have to be on that diet anymore.
And yes it makes sense! Thank you so much!
I am about 1 week into the diet now and they said I should do it for 2-3 weeks and they will probably still give me the thyrogen shots a couple days before the RAI. Any Suggestions for a first timer? A friend of mine went through the RAI treatment 4 years ago, and someone told her she could have a certain brand of (Harpers Homemade)bread that has no milk or eggs, when I read the label it has salt. So I'm confused if the salt is at the bottom of the ingredient list is it ok?? or should it be avoided all together? Any comments or suggestions would be great! Good luck with your treatment, I will think positive thoughts for both of us
0 -
No salt!Glenda3474 said:Low Iodine diet
I am about 1 week into the diet now and they said I should do it for 2-3 weeks and they will probably still give me the thyrogen shots a couple days before the RAI. Any Suggestions for a first timer? A friend of mine went through the RAI treatment 4 years ago, and someone told her she could have a certain brand of (Harpers Homemade)bread that has no milk or eggs, when I read the label it has salt. So I'm confused if the salt is at the bottom of the ingredient list is it ok?? or should it be avoided all together? Any comments or suggestions would be great! Good luck with your treatment, I will think positive thoughts for both of us
Hey Glenda (that's my moms name)
I was told by my doc just to avoid any products that say they have salt in them at all. He said it was because they never specify whether or not they use iodized or uniodized salt in the product. They have non-iodized salt on the shelf that is actually pretty tasty if you need a little flavor for something The diet is awful! But it's just one step closer to getting where you want to be
Julie0 -
i thought that too....Crys218 said:yeah..
yeah it does suck now... the first time scared me so much... but for some reason, finding out that it has came back it has just gotten to me more than before. just makes me think that i did something wrong that has made it come back.. but i dont know.
Yeah i'm closer to my family now. They are only bout 20 mins away. My mom is trying her hardest to keep telling me that everything's ok. But its still scary and confusing.
It's hard not to think that you may have done something wrong because you sit and wonder, why did this come back if I did everything right? But I guess sometimes our bodies just don't do what we want them to the first time. I'm glad that you have family close by, even though you are still scared. It's hard to be alone when you have something like this interrupting your life so much......let us know how things are going!!
Julie0 -
2 weeks after total thyroidectomybowlwarej said:i thought that too....
It's hard not to think that you may have done something wrong because you sit and wonder, why did this come back if I did everything right? But I guess sometimes our bodies just don't do what we want them to the first time. I'm glad that you have family close by, even though you are still scared. It's hard to be alone when you have something like this interrupting your life so much......let us know how things are going!!
Julie
Hello,
I'm very new to this and now I'm scared...
I found out about the nodules while having an MRI for something completely different. It has been a whirlwind for me... I was diagnosed on 8/4 and had surgery 8/6 (I was completely asymptomatic). I guess it happened so quickly and with MUCH support from my family, I wasn't scared at all. My progress surprised the doctors. I was managing extremely well until last night and today.
Today I went to the Nuclear Meds Physician to prepare for the RAI... this is what I've been most concerned about. I don't want to do it, I have a 2 year old niece within my household and I don't want to expose her or anyone else to this. The diet, I have no problem with, I'll deal with that.
Now, I really feel that I'm sick and I can't stand this feeling... Is this normal? Prior to today, I had a great appetite, was positive, but now...
My question is, how did you deal with the aftermath of the RAI and where did you go? My hospital will only keep me for three days...0 -
ibeatcanser said:
2 weeks after total thyroidectomy
Hello,
I'm very new to this and now I'm scared...
I found out about the nodules while having an MRI for something completely different. It has been a whirlwind for me... I was diagnosed on 8/4 and had surgery 8/6 (I was completely asymptomatic). I guess it happened so quickly and with MUCH support from my family, I wasn't scared at all. My progress surprised the doctors. I was managing extremely well until last night and today.
Today I went to the Nuclear Meds Physician to prepare for the RAI... this is what I've been most concerned about. I don't want to do it, I have a 2 year old niece within my household and I don't want to expose her or anyone else to this. The diet, I have no problem with, I'll deal with that.
Now, I really feel that I'm sick and I can't stand this feeling... Is this normal? Prior to today, I had a great appetite, was positive, but now...
My question is, how did you deal with the aftermath of the RAI and where did you go? My hospital will only keep me for three days...
Hello, i just had 2nd my second RAI treatment done end of july. My hospital also allowed me to stay for only 3 days, but i check-in a hotel for a week before heading back home. You will be just fine, don worry!!i did feel fatigue over the first week of the treatment, sorethroat, acid reflux and runny nose. I was monitored closely in the hospital, blood check every morning and vital signs read three times a day. i still feel tired three weeks after the RAI, other than that, i am just fine.0 -
ibeatcanser said:
2 weeks after total thyroidectomy
Hello,
I'm very new to this and now I'm scared...
I found out about the nodules while having an MRI for something completely different. It has been a whirlwind for me... I was diagnosed on 8/4 and had surgery 8/6 (I was completely asymptomatic). I guess it happened so quickly and with MUCH support from my family, I wasn't scared at all. My progress surprised the doctors. I was managing extremely well until last night and today.
Today I went to the Nuclear Meds Physician to prepare for the RAI... this is what I've been most concerned about. I don't want to do it, I have a 2 year old niece within my household and I don't want to expose her or anyone else to this. The diet, I have no problem with, I'll deal with that.
Now, I really feel that I'm sick and I can't stand this feeling... Is this normal? Prior to today, I had a great appetite, was positive, but now...
My question is, how did you deal with the aftermath of the RAI and where did you go? My hospital will only keep me for three days...
Hello, i just had 2nd my second RAI treatment done end of july. My hospital also allowed me to stay for only 3 days, but i check-in a hotel for a week before heading back home. You will be just fine, don worry!!i did feel fatigue over the first week of the treatment, sorethroat, acid reflux and runny nose. I was monitored closely in the hospital, blood check every morning and vital signs read three times a day. i still feel tired three weeks after the RAI, other than that, i am just fine.0 -
RAIPhyllis900 said:
Hello, i just had 2nd my second RAI treatment done end of july. My hospital also allowed me to stay for only 3 days, but i check-in a hotel for a week before heading back home. You will be just fine, don worry!!i did feel fatigue over the first week of the treatment, sorethroat, acid reflux and runny nose. I was monitored closely in the hospital, blood check every morning and vital signs read three times a day. i still feel tired three weeks after the RAI, other than that, i am just fine.
Hi Phyllis,
Thank you and Emma for responding. How are you feeling now? Prior to the past two days, I was happy and moving about like normal, not thinking about anything. Everyone was amazed at how well I was coping...
I'm not allowed to stay at a hotel; I was told that I would "expose the public" I'm most worried about the after effects in my home. Most important, my little niece. My plan was to stay at a hotel for as long as it took.
About the side effects, I know everyone reacts differently (I got my voice back fully in 4 days, from the day of surgery and no physical pain, except the discomfort of swallowing). After I got home, I used Tylenol 2 times. The short term effects, I would have to deal with, but I'm not so sure about the long term.
I will definitely discuss with my doctor the pros and cons of skipping this portion; it's the most scary for me. To be quite honest, it threw me 100 steps back in my recovery. Today, I didn't want to eat, exercise or talk to anyone. I cried for about three hours the night before (it was my worst two days). I can't stand that I have to put the people I love the most through this...
Hi Emma,
How did you clean your house/room during and after your "isolation period"? I do plan on using old clothing and bed linens then throwing it all out, if I do decide (or my doc makes me) do the RAI...
Thank you all for listening!0 -
Hello!ibeatcanser said:RAI
Hi Phyllis,
Thank you and Emma for responding. How are you feeling now? Prior to the past two days, I was happy and moving about like normal, not thinking about anything. Everyone was amazed at how well I was coping...
I'm not allowed to stay at a hotel; I was told that I would "expose the public" I'm most worried about the after effects in my home. Most important, my little niece. My plan was to stay at a hotel for as long as it took.
About the side effects, I know everyone reacts differently (I got my voice back fully in 4 days, from the day of surgery and no physical pain, except the discomfort of swallowing). After I got home, I used Tylenol 2 times. The short term effects, I would have to deal with, but I'm not so sure about the long term.
I will definitely discuss with my doctor the pros and cons of skipping this portion; it's the most scary for me. To be quite honest, it threw me 100 steps back in my recovery. Today, I didn't want to eat, exercise or talk to anyone. I cried for about three hours the night before (it was my worst two days). I can't stand that I have to put the people I love the most through this...
Hi Emma,
How did you clean your house/room during and after your "isolation period"? I do plan on using old clothing and bed linens then throwing it all out, if I do decide (or my doc makes me) do the RAI...
Thank you all for listening!
I had 2 RAI treatments with my 2 year old (he's now 4) in the house, and it was a little scary. Although we made it through it just fine, it was hard to stay isolated when he knew I was in my room and couldn't come in to see me. Just make sure that no one uses the bathroom after you or sleeps by you, doesn't use the same cup etc. If you don't want to throw all linens away, just make sure you wash everything seperately from everyone else's.
Do you have more than one bathroom? If so, just use one and everyone else use the other for a week or so. If not, bleach the toilet and whatever you touch as soon as you are done. Mostly the stool because your body will be epmtying the RAI out that way.
I wasn't sure I wanted to go through the RAI because of the risk factors for my boy, but I knew if I didn't, the chance of the cancer returning were higher. Mine already recurred once, but after the 2nd RAI I've been fine. My son hasn't had any effects of my treatment so far either, so I am very grateful.
I know what you mean about putting your loved ones through everything! I felt the same way....but I also knew they understood that it was something I had to do, and they were there for me all the way. Hang in there! It will get better! Let us know what you decide!0 -
Treatmentibeatcanser said:RAI
Hi Phyllis,
Thank you and Emma for responding. How are you feeling now? Prior to the past two days, I was happy and moving about like normal, not thinking about anything. Everyone was amazed at how well I was coping...
I'm not allowed to stay at a hotel; I was told that I would "expose the public" I'm most worried about the after effects in my home. Most important, my little niece. My plan was to stay at a hotel for as long as it took.
About the side effects, I know everyone reacts differently (I got my voice back fully in 4 days, from the day of surgery and no physical pain, except the discomfort of swallowing). After I got home, I used Tylenol 2 times. The short term effects, I would have to deal with, but I'm not so sure about the long term.
I will definitely discuss with my doctor the pros and cons of skipping this portion; it's the most scary for me. To be quite honest, it threw me 100 steps back in my recovery. Today, I didn't want to eat, exercise or talk to anyone. I cried for about three hours the night before (it was my worst two days). I can't stand that I have to put the people I love the most through this...
Hi Emma,
How did you clean your house/room during and after your "isolation period"? I do plan on using old clothing and bed linens then throwing it all out, if I do decide (or my doc makes me) do the RAI...
Thank you all for listening!
Hello again. So happy we can help you. I definitely recommend the treatment. You will be fine. It is not too bad at all. As long as you can find someone to help you and your children (did you say you have children?) You will want to rest. You may feel a little yucky, but not too bad.
Here's what I did. I stayed in my bedroom and it has a little bathroom off to the side. I was told to flush the toilet twice after use. No one else should use the bathroom or get near me. But my husband could come in the room to feed me. I took things to extreme because I have a husband, son and pet dog. The doctor told me I could come out of my room and sit about six to seven feet away from people, but I did not want to.
I cleaned everything afterward. (Threw bedding and PJ's away) But you don't have to. I did use bleach as our other friend mentioned. And regular cleaning supplies. Vacumned dusted...stuff I don't usually do.
You will want to suck on hard candies to keep your salivary glands safe. My salivary glands were a bit sore for months. But now they are fine. Just a little tiny bit tender.
Hope this helps.0 -
well just found out...emma54 said:I stayed in my bedroom for
I stayed in my bedroom for three days. The doctors said that was fine. I just threw away all bedding and PJ's. I did not feel so great before treatment either.
that i do have to do the diet... but my nuck medicine people told me that i dont have to go overboard on it which is a good thing.. just gotta be on it for a few days.
they are gonna keep me in the hospital for a few days... because i know the way my mom is and she will want to be over here all the time, which can't happen.. but try telling my mom something like that lol..
how long after i get out of the hospital do i have to be isolated from people and animals? because my parents are going to be watching my dog for me while i'm in the hospital. and i'm just worried about exposing them to anything that could happen.0 -
How lucky for you to be able
How lucky for you to be able to stay in the hospital. They would not let me because of the extra bathroom off my master bedroom, etc. I bet your doctors will tell you after you get out of the hospital you will be fine. I was isolated for only three days.0
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