How do you ever get to feel normal again??

weberdns
weberdns Member Posts: 154
edited March 2014 in Thyroid Cancer #1
I'm trying to figure out how to go through the next year leading a normal life while I wait for a thyroglobin level, and a body scan in 1 year. I'm done with the surgery, I'm done with the RAI, now regulating meds with every 6 week draws of blood. But my endocrinologist isn't going to test my thyroglobulin level until just before we do the body scan in a year. (unless obvious symptomos come up). So I'm supposed to live my life for the next year like a normal person. Trying to forget that I may.....or may not have cancer growing in my body....and not knowing for sure. Any advice on how to do this???
Sue

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • weberdns
    weberdns Member Posts: 154
    #3
    unknown said:

    This comment has been removed by the Moderator

    Thanks
    Glad that it isn't just me! I know I should be glad that the scan only showed neck activity....but trying to wait a year to find out if it worked or not seems just like torture to me!
  • nasher
    nasher Member Posts: 505 Member
    #4
    im about in the same
    im about in the same situation

    we both had surgeries and RAI treatments about the same time

    myself i also only neck activity on the scan

    tomorrow i have the apointment with my endo and expecting about the same thing blood tests every 6 or so weeks and a followup (for me its penciled in at 6 months) and then another followup at the 1 year point.

    i dont know what NORMAL is so.. i dont worry about it

    for myself i have found things in my life i want to be able to do and working that way to be a normal person

    1) get back in shape (get back to being able to do 2 hour workouts when i have time)
    2) get back to activities and such i enjoy
    3) spend time with my wife

    other things i am looking at most people dont look into but we probaly do cause of our experiance

    1) think about life insurance / wills / (if you have kids) what you want to recoard
    one of my friends has decided that each day she will write a little words of wisdom for her 1 year old daughter.
    2) i am sure there are more but i cant think of them

    dont forget the cancer you are a survivor.. keep telling yourself that.. explain it to others... you have beaten this and if it comes back in the future well.. guess what you are going to beat it again

    the reason they do not test for your thyroglobulin level for a long time is that the RAI dosn't get all the thyroid tissue imidatly and for the next 5-6 months it is going to be going away... so its hard to get a good baseline still. at 1 year if there is a measurable level of Thyroglobulin in your system .. THEN they can figure out if there is a problem.

    i have been chating with many people who have had this surgery and only 2 of the 20+ I know of have had a reocourance and both of them are doing well 7 and 9 years out from the initial RAI treatment.

    also realize this... most "normal people" do not think if they may or may not have cancer growing in there body... you are just sensitised to it since you DID have it and had treatment. There are lots of people out there who will go years with cancer and not know of it.
  • grateful1
    grateful1 Member Posts: 80 Member
    #5
    normal?
    MY TUMOR WAS INOPERABLE AND I HAVE NOT STARTED THE IODINE TREATMENT YET. I AM ALSO SCHEDULED TO TAKE SUTENT AT FIVE THOUSAND DOLLARS FOR TWENTY EIGHT PILLS FOR FOUR MONTHS. I AM HOPING THIS SHRINKS THE TUMOR EVEN FIFTY PERCENT BECAUSE IT IS PRESSING ON A LOT OF IMPORTANT STRUCTURES--AORTA, WIND PIPE, ETC.

    I KNOW WHAT YOU MEAN THO. I NOW WAKE UP EACH MORNING AND THINK I HAVE CANCER--AGGRESSIVE CANCER THEY SAY. AT NIGHT I THINK THAT BEFORE GOING TO BED. I WORRY SO ABOUT MY TEEN DAUGHTERS AS I WOULD HATE TO LEAVE THEM IN THIS WORLD WITHOUT A MOM. THEIR DAD IS GREAT--BUT NOT A YOUNG MAN. THEY HAVE NO OTHER CLOSE RELATIVES.

    I USUALLY HAVE SO MANY INTERESTS--BUT THEY HAVE WANED TO BE HONEST. NOW I AM BUSY RESEARCHING THIS IODINWE FREE DIET TRYING TO MAKE IT WORK. BUT I DO WONDER WILL I EVER WAKE UP AND NOT THINK OH YEAH I HAVE CANCER.

    I GUESS AS LONG AS I KEEP WAKING UP I AM GRATEFUL. I USED TO BROADCAST ON THE RADIO--BUT MY VOICE IS HOARSE AFTER THE ATTEMPTED SURGERY OF FIVE HOURS.
    I AM GOING TO TRY TO CONCENTRATE ON DIETING AND GETTING TO A GOOD WEIGHT AGAIN. THAT IS ALWAYS A PICKER UPPER.
    I AM SORRY YOU HAVE TO WAIT A YEAR. I THOUGHT WE WOULD KNOW SOONER. GOOD LUCK AND GOD BLESS.
    OH YES, I HAVE THOUGHT OF WRITING AS I WAS A WRITER==BUT I WANT TO WRITE HAPPY THINGS. I'D ALSO LIKE TO HELP OTHERS. I HAVEN'T BEEN IN EXCRUCIATING PAIN--SO I WUD LIKE TO HELP THOSE WHO HAVE AND I'D LIKE TO CLEAN UP THE ENVIRONMENT SO MY KIDS FACE A WORLD WITH LESS CANCER ALTHO I GOT MINE FROM BEING IRRDIATED AS AN INFANT FOR AN ENLARGED THYMUS.
  • weberdns
    weberdns Member Posts: 154
    #6
    nasher said:

    im about in the same
    im about in the same situation

    we both had surgeries and RAI treatments about the same time

    myself i also only neck activity on the scan

    tomorrow i have the apointment with my endo and expecting about the same thing blood tests every 6 or so weeks and a followup (for me its penciled in at 6 months) and then another followup at the 1 year point.

    i dont know what NORMAL is so.. i dont worry about it

    for myself i have found things in my life i want to be able to do and working that way to be a normal person

    1) get back in shape (get back to being able to do 2 hour workouts when i have time)
    2) get back to activities and such i enjoy
    3) spend time with my wife

    other things i am looking at most people dont look into but we probaly do cause of our experiance

    1) think about life insurance / wills / (if you have kids) what you want to recoard
    one of my friends has decided that each day she will write a little words of wisdom for her 1 year old daughter.
    2) i am sure there are more but i cant think of them

    dont forget the cancer you are a survivor.. keep telling yourself that.. explain it to others... you have beaten this and if it comes back in the future well.. guess what you are going to beat it again

    the reason they do not test for your thyroglobulin level for a long time is that the RAI dosn't get all the thyroid tissue imidatly and for the next 5-6 months it is going to be going away... so its hard to get a good baseline still. at 1 year if there is a measurable level of Thyroglobulin in your system .. THEN they can figure out if there is a problem.

    i have been chating with many people who have had this surgery and only 2 of the 20+ I know of have had a reocourance and both of them are doing well 7 and 9 years out from the initial RAI treatment.

    also realize this... most "normal people" do not think if they may or may not have cancer growing in there body... you are just sensitised to it since you DID have it and had treatment. There are lots of people out there who will go years with cancer and not know of it.

    Thank you so much for your kind, thoughtful words!
    They have me thinking about a lot of things.

    I know our Relay for Life is in July so I'm going to see about doing the survivor's lap. Perhaps the next year organizing a team, but I think that perhaps just doing the survivor's lap the first time will be pretty emotional for me!!

    I looked forward to getting back to work as soon as possible after both my surgery and RAI. I made it back after both in record time. It is now summer vacation and I work in a school, so I don't have work....but I am looking forward to getting back into my normal routine in September once more.

    I'm also working hard to get my family back to normal. The only one who reacted really well was my 14 year old daughter. My husband is now on Zoloft and Ativan for panic attacks which started after my illness and seeing a therapist. and my son is suspended from college because of his grades. We are working towards getting him in the community college to see what he can do there and get his confidence back! I thing that once they start getting back to normal (there's that word again) I can start getting back to normal.

    I went back to the soup kitchen last month......we go as a family once a month and it was sure great to do that once more!

    I'm thinking about what I can do to help Thyroid cancer patients in my community.....but not doing anything active until I get my family in order. What else this leads me to only God knows!
  • weberdns
    weberdns Member Posts: 154
    #7
    grateful1 said:

    normal?
    MY TUMOR WAS INOPERABLE AND I HAVE NOT STARTED THE IODINE TREATMENT YET. I AM ALSO SCHEDULED TO TAKE SUTENT AT FIVE THOUSAND DOLLARS FOR TWENTY EIGHT PILLS FOR FOUR MONTHS. I AM HOPING THIS SHRINKS THE TUMOR EVEN FIFTY PERCENT BECAUSE IT IS PRESSING ON A LOT OF IMPORTANT STRUCTURES--AORTA, WIND PIPE, ETC.

    I KNOW WHAT YOU MEAN THO. I NOW WAKE UP EACH MORNING AND THINK I HAVE CANCER--AGGRESSIVE CANCER THEY SAY. AT NIGHT I THINK THAT BEFORE GOING TO BED. I WORRY SO ABOUT MY TEEN DAUGHTERS AS I WOULD HATE TO LEAVE THEM IN THIS WORLD WITHOUT A MOM. THEIR DAD IS GREAT--BUT NOT A YOUNG MAN. THEY HAVE NO OTHER CLOSE RELATIVES.

    I USUALLY HAVE SO MANY INTERESTS--BUT THEY HAVE WANED TO BE HONEST. NOW I AM BUSY RESEARCHING THIS IODINWE FREE DIET TRYING TO MAKE IT WORK. BUT I DO WONDER WILL I EVER WAKE UP AND NOT THINK OH YEAH I HAVE CANCER.

    I GUESS AS LONG AS I KEEP WAKING UP I AM GRATEFUL. I USED TO BROADCAST ON THE RADIO--BUT MY VOICE IS HOARSE AFTER THE ATTEMPTED SURGERY OF FIVE HOURS.
    I AM GOING TO TRY TO CONCENTRATE ON DIETING AND GETTING TO A GOOD WEIGHT AGAIN. THAT IS ALWAYS A PICKER UPPER.
    I AM SORRY YOU HAVE TO WAIT A YEAR. I THOUGHT WE WOULD KNOW SOONER. GOOD LUCK AND GOD BLESS.
    OH YES, I HAVE THOUGHT OF WRITING AS I WAS A WRITER==BUT I WANT TO WRITE HAPPY THINGS. I'D ALSO LIKE TO HELP OTHERS. I HAVEN'T BEEN IN EXCRUCIATING PAIN--SO I WUD LIKE TO HELP THOSE WHO HAVE AND I'D LIKE TO CLEAN UP THE ENVIRONMENT SO MY KIDS FACE A WORLD WITH LESS CANCER ALTHO I GOT MINE FROM BEING IRRDIATED AS AN INFANT FOR AN ENLARGED THYMUS.

    Hugs!
    I am so sorry that your tumor was not operable....but I will continue to pray for your recovery! I do know how you feel as I have both a 19 year old son and a 14 year old daughter and the thought of getting sick and leaving them too early scares me so much! I'm fighting though.....I keep telling myself that this cancer is not going to kill me!!

    Your plans for weight, exercise, diet, all sound good! My you be blessed with help and may these efforts succeed! Hugs and prayers for you!
  • weberdns
    weberdns Member Posts: 154
    #8
    grateful1 said:

    normal?
    MY TUMOR WAS INOPERABLE AND I HAVE NOT STARTED THE IODINE TREATMENT YET. I AM ALSO SCHEDULED TO TAKE SUTENT AT FIVE THOUSAND DOLLARS FOR TWENTY EIGHT PILLS FOR FOUR MONTHS. I AM HOPING THIS SHRINKS THE TUMOR EVEN FIFTY PERCENT BECAUSE IT IS PRESSING ON A LOT OF IMPORTANT STRUCTURES--AORTA, WIND PIPE, ETC.

    I KNOW WHAT YOU MEAN THO. I NOW WAKE UP EACH MORNING AND THINK I HAVE CANCER--AGGRESSIVE CANCER THEY SAY. AT NIGHT I THINK THAT BEFORE GOING TO BED. I WORRY SO ABOUT MY TEEN DAUGHTERS AS I WOULD HATE TO LEAVE THEM IN THIS WORLD WITHOUT A MOM. THEIR DAD IS GREAT--BUT NOT A YOUNG MAN. THEY HAVE NO OTHER CLOSE RELATIVES.

    I USUALLY HAVE SO MANY INTERESTS--BUT THEY HAVE WANED TO BE HONEST. NOW I AM BUSY RESEARCHING THIS IODINWE FREE DIET TRYING TO MAKE IT WORK. BUT I DO WONDER WILL I EVER WAKE UP AND NOT THINK OH YEAH I HAVE CANCER.

    I GUESS AS LONG AS I KEEP WAKING UP I AM GRATEFUL. I USED TO BROADCAST ON THE RADIO--BUT MY VOICE IS HOARSE AFTER THE ATTEMPTED SURGERY OF FIVE HOURS.
    I AM GOING TO TRY TO CONCENTRATE ON DIETING AND GETTING TO A GOOD WEIGHT AGAIN. THAT IS ALWAYS A PICKER UPPER.
    I AM SORRY YOU HAVE TO WAIT A YEAR. I THOUGHT WE WOULD KNOW SOONER. GOOD LUCK AND GOD BLESS.
    OH YES, I HAVE THOUGHT OF WRITING AS I WAS A WRITER==BUT I WANT TO WRITE HAPPY THINGS. I'D ALSO LIKE TO HELP OTHERS. I HAVEN'T BEEN IN EXCRUCIATING PAIN--SO I WUD LIKE TO HELP THOSE WHO HAVE AND I'D LIKE TO CLEAN UP THE ENVIRONMENT SO MY KIDS FACE A WORLD WITH LESS CANCER ALTHO I GOT MINE FROM BEING IRRDIATED AS AN INFANT FOR AN ENLARGED THYMUS.

    Hugs!
    I am so sorry that your tumor was not operable....but I will continue to pray for your recovery! I do know how you feel as I have both a 19 year old son and a 14 year old daughter and the thought of getting sick and leaving them too early scares me so much! I'm fighting though.....I keep telling myself that this cancer is not going to kill me!!

    Your plans for weight, exercise, diet, all sound good! My you be blessed with help and may these efforts succeed! Hugs and prayers for you!
  • sfl67
    sfl67 Member Posts: 55
    #9
    Hurthle Cell Carcinoma
    Sue,
    I am nearing the end of my first year post surgery. My surgeon said an ultrasound every six months, a level of less than 1. in my tsh, and blood work every three months to check tsh and thyroglobulin. I am scheduled for a bone scan, another ultrasound in early July and thyrogen injections along with another full body scan in late August to early September. I had my original RAI Sept.02, 2009. I'm not sure if there is a set plan for tests, but my surgeon said this schedule had to be for the rest of my life, so I will do my best to comply.

    My tsh levels are currently .002 and my thyroglobulin is .4, the doctor says this is fine, but I realize I must be diligent since this is an aggressive cancer.

    I'm glad you're feeling well and was able to go back to work.

    Wishing you well, Shelia
  • grateful1
    grateful1 Member Posts: 80 Member
    #10
    weberdns said:

    Hugs!
    I am so sorry that your tumor was not operable....but I will continue to pray for your recovery! I do know how you feel as I have both a 19 year old son and a 14 year old daughter and the thought of getting sick and leaving them too early scares me so much! I'm fighting though.....I keep telling myself that this cancer is not going to kill me!!

    Your plans for weight, exercise, diet, all sound good! My you be blessed with help and may these efforts succeed! Hugs and prayers for you!

    hugs
    Thanks so much weberdns for your note. It meant alot. It is just hitting me now that my tumor is inoperable. I have an 18 yr old daughter--this fall--and a daughter who just turned sweet sixteen. This is the hardest part for me. I do not really think about my condition being terminal--rather I think about how I want to be here for them. I'm hoping this iodine treatment and sutent medication will shrink the tumor even fifty percent. I had a biopsy--needle--in Feb. and the result was malignant--poorly differiated thyroid cancer.

    I immediately started taking all the supplements in Suzanne Somers book Knockout. I was operated on for five hours plus in April. The doctor said it looked like bad cancer--stage four. The next week I went back to get my stitches out and he was scratching his head he said. He did a biopsy in April while trying to remove the tumor--and the biopsy came back to his shock benign. Also the radiologist said if I had anaplastic, which some drs. thought I did I would have lost use of my vocal cords by now.

    So, I feel I have reason to hope! Thanks for the hugs and prayers. I hope so much you are coming along well and that your condition and prognosis is good!
  • weberdns
    weberdns Member Posts: 154
    #11
    sfl67 said:

    Hurthle Cell Carcinoma
    Sue,
    I am nearing the end of my first year post surgery. My surgeon said an ultrasound every six months, a level of less than 1. in my tsh, and blood work every three months to check tsh and thyroglobulin. I am scheduled for a bone scan, another ultrasound in early July and thyrogen injections along with another full body scan in late August to early September. I had my original RAI Sept.02, 2009. I'm not sure if there is a set plan for tests, but my surgeon said this schedule had to be for the rest of my life, so I will do my best to comply.

    My tsh levels are currently .002 and my thyroglobulin is .4, the doctor says this is fine, but I realize I must be diligent since this is an aggressive cancer.

    I'm glad you're feeling well and was able to go back to work.

    Wishing you well, Shelia

    Thanks Sheila!
    I am going to talk to my endo about this schedule. I thought that they would at least check a thyroglobulin level in 6 months. Right now I am getting my TSH checked every 6 weeks until they get my levels to where they want them to be. I'll also ask about the ultrasound in 6 months as well.
    Sue
  • weberdns
    weberdns Member Posts: 154
    #12
    sfl67 said:

    Hurthle Cell Carcinoma
    Sue,
    I am nearing the end of my first year post surgery. My surgeon said an ultrasound every six months, a level of less than 1. in my tsh, and blood work every three months to check tsh and thyroglobulin. I am scheduled for a bone scan, another ultrasound in early July and thyrogen injections along with another full body scan in late August to early September. I had my original RAI Sept.02, 2009. I'm not sure if there is a set plan for tests, but my surgeon said this schedule had to be for the rest of my life, so I will do my best to comply.

    My tsh levels are currently .002 and my thyroglobulin is .4, the doctor says this is fine, but I realize I must be diligent since this is an aggressive cancer.

    I'm glad you're feeling well and was able to go back to work.

    Wishing you well, Shelia

    Thanks Sheila!
    I am going to talk to my endo about this schedule. I thought that they would at least check a thyroglobulin level in 6 months. Right now I am getting my TSH checked every 6 weeks until they get my levels to where they want them to be. I'll also ask about the ultrasound in 6 months as well.
    Sue

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