Scared and confused.....

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  • fliparagon
    fliparagon Member Posts: 3
    #42
    LBelle said:

    Very inspiring
    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.

    Been following this thread...
    ... 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
    poppit Member Posts: 11
    #43
    fliparagon said:

    Been following this thread...
    ... 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!

    Hello everyone...No panic, just FYI
    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
    ibeatcanser Member Posts: 47
    #44
    poppit said:

    Hello everyone...No panic, just FYI
    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!!!

    already sick...
    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
    BellsAngel69 Member Posts: 104 Member
    #45
    mely said:

    sea salt is your friend in
    sea salt is your friend in this whole picture!!

    NO SEA SALT NO NO NO!!!
    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.
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #46
    poppit said:

    Hello everyone...No panic, just FYI
    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!!!

    Yup correctamundo!
    I commented above. Sea salt and all seafood is off limits on low iodine diet preparing for RAI scan.
  • Redneckimber
    Redneckimber Member Posts: 23
    #47
    BellsAngel69 said:

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

    I wanted to also comment on
    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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