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Scared and confused.....

Crys218's picture
Crys218
Posts: 6
Joined: May 2009

Back in 07 I was diagnosed with Papillary thyroid cancer. After doing an ultrasound on my thyroid, they found that my thyroid had microcalcifications on it. After the biopsys on my thyroid and lymph nodes they found out the cancer had spread there.

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

bowlwarej's picture
bowlwarej
Posts: 18
Joined: Aug 2009

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

Crys218's picture
Crys218
Posts: 6
Joined: May 2009

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!

bowlwarej's picture
bowlwarej
Posts: 18
Joined: Aug 2009

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......

Crys218's picture
Crys218
Posts: 6
Joined: May 2009

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!

mely
Posts: 4
Joined: Sep 2009

hey so I thought that I would just jump right in after reading your posts on diets and stuff. So I have thyroid cancer to but because I am just one crazy chic have decided to buck the Drs and go the natural way. I am young and just could not see myself beong cut on and radiated. I respect everyones choice on how they treat cancer but thought that I would add my 2 cents:) so I am on a strict diet as well. It is called the yeast free diet and I noticed you both say that even after surgery the cancer came back. Well the Dr I am working with says that the origin of all disease in the body is the overgrowth of yeast and by eliminating this than you wipe out cancer in your body. I have 3 tumors and one is quite large and was fairly visible to the eye, and now after being on this diet and suppliments I have to say that it is becoming less visible. and I have to say that the diet is not all that bad if you just make up your mind that you are gonna do it. I have more energy now which with the tyroid is the first thing to go. I will know for sure if I have made any progress as in a few days I have another ultrasound. I wish you both the best of luck and if you want any more info from my end or to pick my brain please feel free. Take care.

Mely

Glenda3474
Posts: 7
Joined: Aug 2009

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 :)

bowlwarej's picture
bowlwarej
Posts: 18
Joined: Aug 2009

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 =)

Julie

mely
Posts: 4
Joined: Sep 2009

sea salt is your friend in this whole picture!!

BellsAngel69
Posts: 102
Joined: Dec 2009

Sea salt and all seafood is off limits when on the low-iodine diet. Seafood is loaded with iodine!! Where did you hear sea salt was ok?

And yes, my doctor also told me avoid salt in all processed foods, all dairy. There are a lot of things you can't eat on this diet, believe me, I've done it four times and am currently on it. When they say there are lots of things you can eat they are full of crap. Seriously, it's the worst diet I've ever had to endure.

Think about it, almost everything commercially made has salt in it, and because we can't be sure if the salt is iodized or not, we can't have it. I have to bake my own bread, my own muffins, you name it. It just plain sucks, it really does. I can't stand it. Everything I see I can't eat. I'm only five days into my diet and I'm sick of veggies and fruit already. I'm always hungry. Nothing fills me up for long. I can't even find the one kind of butter I can have, Mother's butter. Can't find it anywhere in my area. Have you ever had dry home bread or plain potatoes without butter? Ugh, I'm just hating everything about this diet and it's making me so crabby. Everything is no, no, no, can't have.

JAWsSavannah
Posts: 57
Joined: Jun 2009

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.

Crys218's picture
Crys218
Posts: 6
Joined: May 2009

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.

bowlwarej's picture
bowlwarej
Posts: 18
Joined: Aug 2009

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?

Crys218's picture
Crys218
Posts: 6
Joined: May 2009

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.

bowlwarej's picture
bowlwarej
Posts: 18
Joined: Aug 2009

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

ibeatcanser
Posts: 47
Joined: Aug 2009

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...

Phyllis900's picture
Phyllis900
Posts: 21
Joined: May 2009

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.

ibeatcanser
Posts: 47
Joined: Aug 2009

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!

bowlwarej's picture
bowlwarej
Posts: 18
Joined: Aug 2009

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!

ibeatcanser
Posts: 47
Joined: Aug 2009

Hello All,
Thank you so much for your support, it means a lot. Today, I'm feeling much better physically and mentally. I don't have children of my own, I have a 2 year old niece who is very close to me. Every morning, she runs to my room with her doctor bag. So that's what I'm most concerned about.

My parents, extended family and friends have been with me through thick and thin, never wavering; multiple surgeries and the whole lot. So, I'm eternally grateful for that. My mom has a bad back and she still brought me breakfast, lunch and dinner when I came out of the hospital.

I'm a "germaphob" so this scares me even more... we do have more than one bathroom, thank goodness. But we will have to put locks on them. I was told that I have to shower from head to toe at least three times a day, did any of you do that? (I know I would certainly do that, possibly more too). Did you keep the furniture in your room and your clothing in the closet, while in isolation? Plus, what about your car after the car ride from the hospital (I live 10 mins away from my hosp)?

So sorry if I'm bombarding you all with questions... before I was apprehensive to even look at the cancer site or the forums because it made me feel very sick, but now I know that there are so many wonderful people out there like me. I never knew that thyroid cancer even existed.

Emma, do you still have the tenderness in your throat? How long after did you use the sour candy?
thank you all again
michelle

emma54
Posts: 59
Joined: Aug 2009

My doctor was real low keyed about the isolation. Three days that I was it and all was back to normal.

As long as you don't get too close to people, during those three days, they will be fine. Most of the radioactive material comes out in your urine so flush your toilet twice.

Call your Radiologist if you are really worried. Mine was sooooo nice.

Yes, I still have a tiny bit of tenderness. But that is just me. I had my surgery May 20, 2008 and another one April 2009 to repair the scar. The RAI was in July 2008. I have another one coming up Sept. 28th. But it is just to make sure I am cancer free.

Did you have Papillary cancer? Are you on Cytomel and do you feel real tired? Make sure you rest.

ibeatcanser
Posts: 47
Joined: Aug 2009

Hello,
Feeling better today.

As far as isolation, I will be in the hospital for three days, then have to stay in my room for a further seven. Yes, my Endocrinologist made it clear that I have to do the treamtent based on my pathology report... He will find out for certain if I can stay at a hotel.

My surgery was on August 6th, 09. Wow, my RAI will be on the same day as yours. Sept 28th. I start the diet on Sept 7th; body scan on the 24th. I will have you in my thoughts. Were you able to return to work?

It was diagnosed as Papillary cancer. I had 3 nodules, 2 were malignant, the third one (malignant) they found after the thyroid was removed. I was completely asymptomatic. I'm currently not on any medication; not until after treatment will I be placed on it. Up until wednesday, I was upbeat and chipper, with a few days or tiredness. Wednesday was just horrible, everything slowed down and I couldn't stop crying; Thursday was nerve wracking since I had to see the nuclear med physician and I had to do it without my mom in the office. They made her stay outside.

Talking to others whom have gone through this is helping me a lot, as opposed to my team of doctors, radiologists etc, that can only try to explain what they know on paper...

Thank you all again...

LBelle
Posts: 42
Joined: Oct 2009

I wonder how are you feeling so far...?

emma54
Posts: 59
Joined: Aug 2009

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.

Phyllis900's picture
Phyllis900
Posts: 21
Joined: May 2009

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.

emma54
Posts: 59
Joined: Aug 2009

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.

Crys218's picture
Crys218
Posts: 6
Joined: May 2009

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.

ibeatcanser
Posts: 47
Joined: Aug 2009

How are you feeling now?

Yes, my poor mom wants to be in the house for me 24/7, but I told her that I can't have her or anyone else exposed to the radiation...

But I'm learning as the days go by, to let people in. Live and all will be well. I even went to Disneyland on Saturday. Even though I've been there so many times, this time it was different. Saw it differently with a tremendous amount of appreciation for life and family.

take care and do stay strong!!

emma54
Posts: 59
Joined: Aug 2009

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.

emma54
Posts: 59
Joined: Aug 2009

Well, as I suspected your situation is different from mine. I had one nodule, papillary cancer. Yours was more extensive which is why your radioactive therapy dose is most likely going to be higher than mine was. Again, that explains why you have to be in isolation longer than my three days.

I did go back to work after all was completed. I am older than you and only worked part-time, but have since been laid off due to the economy. Sometimes I feel too tired to look for another job. Isn't that terrible?

We can think of each other on the 28th!

ibeatcanser
Posts: 47
Joined: Aug 2009

So sorry that you lost your job...

My boss and coworkers are extremely supportive of my situation. They have also been standing by be, which is a wonderful feeling; to think also, that I had only started this job about 4 months ago.

I'm quite concerned about being too tired not just to work, but to commute (35 miles each way). The most beneficial part is that I have my wonderful parents, family and friends here for me. My endocrinologist for now has given me 2 weeks off after the RAI. I pray that all will go well.

I'm coming to terms with the RAI and with lots of prayers and support, I've been more at ease and release a great weight off of my shoulders. I'm learning to let others help me with this; have a co-pilot at the wheel.

take care and yes, will be thinking of you on the 28th!

emma54
Posts: 59
Joined: Aug 2009

Hello to you!

Oh don't worry. You won't be tired once you get adjusted to your meds. I am older than you and my fatigue is somewhat due to post-menopausal symptoms.

Thanks for sympathizing with my job loss. I am taking the opportunity to clean out closets and cupboards.

Hope you are resting.

daughdx19
Posts: 8
Joined: Mar 2009

Crystal,

My daughter was diagnosed in Dec. 2007 at 19 years old. Total Thyroidectomy, Parathyroid Glands Removed and 1 transplanted, Bilateral Neck Disection w/90 lymph nodes removed w/56 papillary cancer including Mediastinum area. 2nd Surgery in April,2008 to remove another 2 cancerous nodes(left clavical and mediastinum). She had a 200 dose of RAI in May,2008.

I am not going to talk about all the blood tests, and Ultrasounds, and CT scans. Hyper and Hypo.

I want to celebrate with you and the CSN that her last ultrasound showed no evidence of disease, a CT scan had 2 small calcified nodes in mediastinum which srunk from 2008 RAI, and on August 14, she had a RAI-WBS with no uptake... Her endocrinologist is thrilled. Her Nuclear Medicine Dr was presently suprised.. I am ecstatic, because for today I know my daughter has no sign of living thyroid cancer. I know it's not over, but I feel confident.

She has to be followed very carefully, because of the original amount of her disease. The reoccurance rate is high because of this same reason..

Please be your own advocate!! I would ask your doctor why they have reduced the amount of your second dose.. Check out the internet for info on RAI.

Stay Strong and Conquer this Disease..
God Bless

JAWsSavannah
Posts: 57
Joined: Jun 2009

In Georgia there is no hospitalization following RAI. Here's a summary of the instructions I got following mine, with my interpretations and additions:

Drive home by yourself if possible. If you are a passenger sit in the back seat as far from the driver as possible. If you have to drive more than 30 or 45 minutes you should make the trip alone.

Do not sleep with ANYONE for a week. Sleep in a separate room or on a cot away from others. If you are going to sleep in a regular bed buy a plastic mattress protector and put it on first. Discard it after a week. (Radiation is lost in bodily secretions including perspiration.)

Flush twice after each trip to the toilet.

Do not prepare food for anyone else. Take your meals alone and use disposable utensils if possible. Otherwise keep your eating utensils separate from everyone else's.

Avoid close contact with babies or small children for the entire 7 days. You can gradually get closer to adults after 3 or 4 days.

Keep several feet away from other adults when you're not moving about. There is no danger from brief close encounters, say, while passing in a hallway. (I live alone but did my own grocery shopping; no danger to the strangers you pass in a store.)

Launder your clothes, towels, sheets, etc. separately from others.

Wear disposable footwear if available. Whatever footwear you use during the week should either be discarded or stored away from people for several months; it will eventually give up it's radioactivity during that time. Don't let pets* play with anything you've worn.

*While our rules did not mention pets it is best to use the same rules as for babies--they have a very small body mass so a safe amount of radiation for an adult could be dangerous for a pet.

Do not have any sexual contact for at least a week. No kissing either!

After 7 days gather up everything you've worn or used and launder it two or three times, then set it aside for a few more weeks.

I read about a case where radioactivity was detected at a landfill. The source was traced to feminine pads discarded by a RAI patient. If you can't flush 'em I'm not sure what should be done with them...maybe isolate them for several months in a sealed bag or container (in the attic? in the shed out back?) while the radiation dissipates.

BTW--the half-life of I-131 is around 25 days IIRC, maybe 30. But your body expells the radiation, too, roughly half of it will leave through secretions every 24 hours. If you do the math you'll see that the amount remaining in your body after 7 days is minuscule, but the items you soiled during that week will still be half as radioactive after 25 or 30 days. In other words, the danger remains much longer in contaminated THINGS than it does in your body.

ibeatcanser
Posts: 47
Joined: Aug 2009

Wow, that's incredible!

Can I also lay plastic on the floor in the room? (I forgot the name of the plastic the painters use to protect the floors). I think I will use my old airbed mattress instead of my bed. In addition, I will wear gloves once I leave my room to use the bathroom and a new pair for the return trip to my room. What about birds? I have 2 parakeets, but they stay in my parents room. I honestly plan to discard the clothing I've worn during the isolation period. I was going to put them in about 3 or 4 layers of trash bags and label them.

Thank you for telling me about the footwear. You also gave me an idea to have one pair while in the shower and the other while in the bedroom.

I'm feeling a lot better now though.

I have a dumb question, can you eat couscous while on the low iodine diet? I'd rather ask someone that has been through this experience. I will talk again to my radiologist and nurse to get more answers. The day I went in for my initial screening, almost all of the questions I had, flew away and I forgot the paper I wrote them on...

thank you so much again.

JAWsSavannah
Posts: 57
Joined: Jun 2009

I've never considered exposure to pet birds...my smallest pet is a cat. Since birds have very very small body mass you should not get around them during that week IMO. When I brought up the cat issue my doctor said don't worry but maybe he just doesn't like animals. :)

I'm not sure what value there would be in covering the floor with a disposable plastic drop cloth. Those things are slippery and would be inviting a fall, for one thing. As long as you're not walking around barefoot you're not leaving much of anything behind on a floor, or so it seems to me.

I don't have any couscous to check the ingredients but I believe it is just a pasta product made from grain. If so it shouldn't be a problem with the LID. BTW--none of my doctors seemed to worry much about the special diet. A reasonable approach seems to be use plain salt, skip your multivitamins, no seafood, no restaurant food, and minimal prepared foods. Buy fresh ingredients and do the meal prep yourself if possible.

ibeatcanser
Posts: 47
Joined: Aug 2009

Had a good three week follow up with my surgeon on Wednesday. Calcium levels are good, so I don't need the supplements. I used Tums for a few days after I was discharged. Incision healing well...

I finally spoke with my endocrinologist and nurse from radiology. They cleared up a few things and put my mind at ease a bit. This is a complete life changing situation and it really got to me how nonchalant some of their answers were (I had a good spat with them). As a result, they will provide me with the proper trash bags and the absorbant cloth for the floor. My parents are giving up their master bedroom suite to me for the additional 4 days I have in isolation when I return from my three days in hospital. I feel horrible about doing so, but it will eliminate contact with my niece at all times. In addition, I found out that I can't be near her for another 2 weeks after that. A friend of mine told me 60 days is even better.
Got another tip too: to reduce the trash content, use toilet paper as much as possible instead of paper towels, that way you just flush it.

I asked the nurse about my birds and she replied "birds?!... oh I guess you can stay away for a week" Then I said: "but they are tiny and when can I play with them?" she responded: "you play with them?...ok" they are living beings too, I thought to myself.

The couscous is organic whole wheat, so it's a plus on my menu. Unsalted Matzo crackers are pretty good too.

I do have a few more questions, did any of you go through the "I can't sleep stage?" A week and a half ago, I was able to sleep through the night, but now I can't. I still have to recline to sleep or else I choke. It's also hard to nap during the day and it seems that my stomach has no bottom, I'm hungry all the time. The other question is, my legs cramp easily especially the right one (my endo said it's normal). Has anyone experienced that? Now, I have a deep aversion to french fries, I can't stand the smell or taste. I tried just one and I almost gagged... even the natural veggie chips I can't handle.

I still can't thank you all enough for your support.

sharonrose
Posts: 3
Joined: Aug 2009

i just found out this pass monday fter i had an ultra sound that they found a mass on my thyroid. i am scared because i don't know what to do. in have an appointment eith an endocronologist on september 9, i could not go to work this week. because when people ask me how am i , what do i say fine. i am not fine, because i don't know. i have told one coworker that i am close to and she tells me to think positiive because true i don't know what it what yet. i am trying to prepare myself for whatever it may be. i have looked some things up in the internet about masses on thyroids, every topic led back to different cancers these masses could be. i do feel a stiffness in my neck at times, i am going through the cahnge in life, so i consistently get hot flashes but the past month i have been getting them more than i have in the pass, i don't know if it is just my nerves or what. i don't know what questions to ask when i do see the doctor on the ninth. my doctor is also having me tested for osteoproses, would this cause a mass on my thyroid?

ibeatcanser
Posts: 47
Joined: Aug 2009

I was in the same situation just over one month ago. For me, this came out of left field, I had an MRI done of my neck for something unrelated and the two nodules showed up.
At first I didn't know what to make of it then I was royally freaked out, but I prayed, meditated and spoke to my family about it. I immersed myself in my work to "forget" about it until the endocrinologist appt.

Did they tell you if a biopsy would be performed? I almost passed out when the doctor told me he was going to do a biopsy and another ultrasound (I'm a chicken when it comes to that sort of thing - I fainted when I got my ears pierced). I just thought that I was going in for them to explain what the nodules were, maybe a blood test, the usual check up and then I leave. I'm normally the uber prepared one, but for this my mind turned to jello.

Make a list of things about you, your medical history, plus any changes or things that occured within the past 2-3 months which seem "odd" in retrospect. Also, ensure that the list is in your pocket, I left mine in the car.

The best advice is to stay positive and don't overthink it until you see the doctor. Focus on overcoming this obstacle and not letting it win. Don't tell yourself you're "sick" in any way, that will wear you out fast.

There are wonderful people in these discussion groups to help. Trust me, they put my mind at ease. I thought that I was the only one with this. I never knew it existed.

Stay positive and don't let it stop you from living your life!!

sharonrose
Posts: 3
Joined: Aug 2009

Thank you very much for your words of encouragement

LBelle
Posts: 42
Joined: Oct 2009

All of you folks are very inspiring and I feel a bit better...

My symptom was just nothing at all except occassional "strep" on each side and then about a year later, "strep" came back on other side on and off for 9 years. Dr thought it was either hypo or hyper in my thyroid so she sent me to sonogram. My husband and I didn't see anything "unusual" on the sonogram monitor and the radiologist was very QUIET.... Oh well...
In a week later, I came back to see the doctor for getting the prescription for my thyroid. But no.. she said that I have a mass in my right thyroid and I had to see the biopsy. The word "biopsy" really shocked and scared the Heck out of me. I'm sure I wasn't an only one who cried big time when you hear the words "mass" and "biopsy". No matter what the doctors said in an assuring way but still...

I sure hope that you folks are doing alright so far.

fliparagon
Posts: 3
Joined: Sep 2009

... and wondering how you are all doing.

I was diagnosed with papillary thyroid carcinoma early June of this year, had a total thyroidectomy in September and right neck dissection (the cancer has metastasized to the lymph nodes on the right side of my neck), and was just treated with 180 mCi RAI this past Friday, Oct. 30th.). I'm currently in the third day of my isolation with a 6-month old son crying for his daddy at home....

Side effects have been minimal so far - with a case of nausea the day after after and recurring yesterday but not as severe. Also, a bit of fatigue but could be related to being off of the thyroid medication and low iodine diet for the last three weeks.

History - my immediate family and I were exposed to radiation in the 1970's from rocket testing in the hills above Chatsworth, CA. As a result, both of my parents have had thyroid cancer, and my mom also had breast cancer. Myself, I also had a benign brain tumor removed (sub-ependyoma) back in 2004 not to minimize the seriousness but once you've had your head cut and brain cut open, having thyroid cancer is "water under the bridge".

Nevertheless, I hope all that have posted to this thread are doing well. It's inspiring to read about everyone's experiences and it's comforting to read about everyone who shares - you truly all are brave and it's a true testament to the human spirit. Life is truly precious and learn from this - value what's important to you and appreciate the little things. Being isolated from my son and wife makes me truly appreciate them even more.

Take care and LIVESTRONG!

poppit
Posts: 11
Joined: Oct 2009

This has been the most helpful thread I have found yet, Thank you everyone for your comments.

One thing I do know, the person who suggested sea salt for the LID, I thought the same thing, but read someplace that anything from the ocean has a higher level of iodine...so, sea salt is like eating sea food.

Also, when you are off your thyroid meds you will become susceptible to illness. I am awaiting my RAI (Nov 11). I was worried about having enough energy to keep working, I am a teacher. I started to feel sick last Sunday...Monday was bad, in the dr. Tuesday, I was diagnosed with H1N1...and boy was I sick.

I have been taking Tamiflu...made me feel neauseated, but I am finally feeling just tired and not VERY sick and tired. I don't know if this flu has found its way to your neck of the woods, but it is rampent in mine. Get the vaccine wash your hands and stay away from those who might be sick. I remember waiting to get the tracer dose for the pre RAI scan. I was at the lab waiting for a blood draw sitting two seats away from an older fellow who was coughing like I was coughing now...grrr!!

So, I guess I wanted to warn that your immunities are weak along with your energy. I will be back at school on Monday and hoping and praying that I can keep from getting anything more to jeopardize the treatment and getting back on my thyroid meds. I want whatever normal back there is to life.

My total thyroidectomy was 9/29, papillary thyroid carcinoma pathology report on October 9, off meds on 10/10, TSH 39.5 on 10/16...

praying for your total recovery!!!

ibeatcanser
Posts: 47
Joined: Aug 2009

aaargh!!!!...

I was being so careful and as soon as I returned to work, wham!! Got hit with an upper respiratory infection. I'm a complete 'germaphob' too. I had my RAI on Oct 5th and started my thyroid medication a few days later so my entire system is out of sync. I'm so tired right now it's not funny. I didn't even feel this badly after my surgery or even after RAI.

Essentially, after the first day I returned to work, I had to stay home for 10 more days. My body just got drained. Last week, I returned to work for the second time and now I'm home for another week. (I work 3 days on site and 2 at home).

It's so scary, now I'm freaked out to go outside. My surgeon advised against the flu shot for now since my system is still beat up over the RAI (this was before I got sick).

Other than this setback, I'm doing pretty well and extremely happy to be alive!

Stay well and good luck with your RAI (will be praying for you). Make sure you have your sour candy and drink lots of fluids.

BellsAngel69
Posts: 102
Joined: Dec 2009

I commented above. Sea salt and all seafood is off limits on low iodine diet preparing for RAI scan.

Redneckimber's picture
Redneckimber
Posts: 23
Joined: Dec 2009

I wanted to also comment on the Sea Salt recommendation. For any Dr. to give that advice is pretty crazy!! I also wanted to say that I was following the Yeast Free Diet for about 6months before I found out that I had Thyroid Cancer! So, another red flag on that whole thing. Don’t get me wrong the yeast free diet actually helped me loose weight and that is pretty big for someone with Hypothyroidism since it seems impossible to loose weight, but I can attest that the Yeast Free Diet in no way shape or form can heal your Thyroid cancer. Like I said I had Papillary cancer and didn’t know it while I was on the yeast free diet! It's kinda crazy for any physician to even try and make anyone think that simply following the Yeast Free Diet can heal cancer. My advice would be to find another doctor and reach out for lots and lots of prayers.
Fortunately I did not have to go on the low iodine diet before my RAI scan. I was a little confused as to why they didn’t make me, since every read I could find involved the low iodine diet, but I had my total thyroid taken on November 23rd and then 3 weeks later I had the Radioactive Iodine at 150mc's and 10 days later I had the scan. (Still waiting my results from the scan) Dr. never asked me to do anything with my diet. My TSH was almost at 60 when they called me to go and do the Iodine treatment. The radioactive iodine made me very ill. I was extremely sick for about 8 days, it was hell! That I would have to say was the worse thing out of all of everything I have been thru thus far. Extremely painful upset stomach, nausea, vomiting, it was like my body was giving up. Horrible! I still can’t eat anything blue without thinking about those nasty RAI pills! Anyway, I like most of you have completely given all this nasty cancer over to God and I am positive in my attitude that it is completely gone and I pray that it never comes back for myself and for all of you. Good luck to you all...

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