Thyroid Cancer and Treatment

CindyC
CindyC Member Posts: 27
edited March 2014 in Thyroid Cancer #1
Has anyone had to have more than one radioactive iodine treatments? I had surgery in Nov.it will be four years. I am still not in the clear. Had a treatment again last year. Just had a body scan and there is still a shadow that something is there. I am still scared and want to get a good answer. He said no treatment for now and that we will watch it and do bloodwork in four months. THe waiting is so hard. The number that they watch was 222 last year and now at 24. Target is 0. THe number has dropped a lot but I want it to be at 0. Cindy

Comments

  • LAF64
    LAF64 Member Posts: 20
    #2
    Cindy - Lana sent me this discussion as I also have thyroid cancer. I had radiation treatment last year and was under the waiting game too. Your numbers sound great - you should just be patient - things will work out!

    If you would like to talk - email me at lfornino@comcast.net.

    Leslie
  • lisa66
    lisa66 Member Posts: 7
    #3
    Cindy, I have had 3 different RAI treatments for a total of 456 mCi of radiation. I found it very useful to get a second opinion. I also found out that lab results can very to a great degree from lab to lab. Also you might check if you their is high resolution ultra sound equipment in your area. I had this done and found the results were very accurate, reliable and much easier than the body scan. I hope this helps. If you want more info my email is lisaspiegel1966@hotmail.com Keep the faith, Lisa
  • joules112
    joules112 Member Posts: 23
    #4
    lisa66 said:

    Cindy, I have had 3 different RAI treatments for a total of 456 mCi of radiation. I found it very useful to get a second opinion. I also found out that lab results can very to a great degree from lab to lab. Also you might check if you their is high resolution ultra sound equipment in your area. I had this done and found the results were very accurate, reliable and much easier than the body scan. I hope this helps. If you want more info my email is lisaspiegel1966@hotmail.com Keep the faith, Lisa

    My mom was diagnosed in January and just had her second surgery last month. They've told her she's going to have to have the radioactive iodine treatments. Can you tell me what to expect?
  • CindyC
    CindyC Member Posts: 27
    #5
    joules112 said:

    My mom was diagnosed in January and just had her second surgery last month. They've told her she's going to have to have the radioactive iodine treatments. Can you tell me what to expect?

    I have had two of these and there is no real discomfort. I had some nausea with the first one and swelling like the mumps. Second time there was no swelling and he gave me something for Nausea. No one could get within nine feet of me for three days and then I could not be around pregant woman or Children for 11 or 12 days. It is so much better to have the treatment in the summer as you can still get out and walk and just distance yourself from anyone. We had a picnic at the park and I sat at one end the others at the other end. Get all throw away utensil as everything including laundry must be kept seperate from everyone else. She should only have to have one treament. I has one and then now last summer had to have another as there was activity found. Hope that this was my last. TIme will tell.Also food had a metal taste and that lasted about six weeks I would say. Cindy
  • springer
    springer Member Posts: 3
    #6
    I have had 3 RAI treatments. Then, they just gave me injections to "fake out" my body to see if it would accept the RAI. It never has! My numbers are so high...I would be so excited if they were 24! I know how hard the wait is but keep feeling your neck to for any abnormal lumps and keep track of how you feel. For your peace of mind, I really don't think that the levels would go down so far and then go back up. My have just never gone down.
  • dciesielski
    dciesielski Member Posts: 1
    #7
    CIndy: I had my surgery in Jan of this year, was diagnosed with papillary follicular variant thyroid cancer and underwent radioiodine treatment in March. I just had my followup body scan yesterday and like you, I have a suspicious area, so it looks like I will have to undergo another treatment. I see now that I will be living my life this way; one treatment then scan & bloodwork after the next. The waiting IS hard as it's not like it's something that is over in a few months. Everyone has been telling me these last six months (while waiting to have the scan) that it will be all right, patients rarely have to have a second treatment, the cancer will be gone, etc. Well, it's NOT and I'm angry and afraid. I feel as if it will NEVER be gone and I will keep hearing how it's going to be all right but it's NOT. And I worry about having such high doses of radioactivity in my body repeatedly. I've read that this increases your risk of leukemia years down the road. SO do I hope to eradicate the thyroid cancer, only to receive a diagnosis of leukemia? P.S. Is the number you're referring to your thyroglobin level? Debbie
  • cherrie
    cherrie Member Posts: 38
    #8
    Cindy,I am dealing with this type of cancer since I was 18.I am now 34 and in those 15 years I've had 3 treatments(1989,1994 and 2003) Since in my operation they left me with a little piece of the thyroid I told the dr that if that was the problem I would go to surgery again. I know the treatment is strong and if you have kids it is harder, but you do everything you have to so you can get better don't let fear get in the way. If you like to write to me you can at caburtonpr@yahoo.com Hope this makes you feel better. Cherrie
  • jmorein
    jmorein Member Posts: 1
    #9
    Cindy, since you had surgery for thyroid cancer, can you tell me about if the recovery was difficult or not. My mom has a large mass in her thyroid to be removed, and the surgeon states that the recovery will be difficult. Tell me about your recovery period. Thanks, Jeanie.
  • CindyC
    CindyC Member Posts: 27
    #10
    jmorein said:

    Cindy, since you had surgery for thyroid cancer, can you tell me about if the recovery was difficult or not. My mom has a large mass in her thyroid to be removed, and the surgeon states that the recovery will be difficult. Tell me about your recovery period. Thanks, Jeanie.

    Recovery for me was not that uncomfortable. I had surgery and came home the next morning. My whole Thyroid was removed in that surgery. I took a week off of work.
  • sugar72822
    sugar72822 Member Posts: 3
    #11
    Hi, I was diagnosed with Papillary Carcinoma in September 2000 and had my thyroid removed. The doctors found that the cancer had spread to about 5 lymph nodes in my neck. I had the initial radioactive iodine uptake and have had one scan since then. This past year I developed an enlarged lymph node right under my jaw. I am always aware of it and it worrys me. I had an ultrasound done at my last doctor's visit and he said "we'll keep an eye on it". Has anyone else had the cancer spread to the nodes and then found enlargement in other nodes? If so, what tests did your doctor perform? Thanks for your thoughts and good luck to all.
  • Unknown
    Unknown
    #12
    sugar72822 said:

    Hi, I was diagnosed with Papillary Carcinoma in September 2000 and had my thyroid removed. The doctors found that the cancer had spread to about 5 lymph nodes in my neck. I had the initial radioactive iodine uptake and have had one scan since then. This past year I developed an enlarged lymph node right under my jaw. I am always aware of it and it worrys me. I had an ultrasound done at my last doctor's visit and he said "we'll keep an eye on it". Has anyone else had the cancer spread to the nodes and then found enlargement in other nodes? If so, what tests did your doctor perform? Thanks for your thoughts and good luck to all.

    This comment has been removed by the Moderator
  • sugar72822
    sugar72822 Member Posts: 3
    #13
    unknown said:

    This comment has been removed by the Moderator

    Thank you Jose, I'm new at this and I am still stumbling around the chat room. Take care :)
  • yoko118
    yoko118 Member Posts: 8
    #14
    Dear Cindy, I had three surgeries altogether. I had had my whole thyroid removed in 1998. I also had the senond surgery in 2002. My tumor was spreaded into my right lung, so they cut my upper right side of my back (about9
    inches),and removed one of my rib,scraped off the deseese in March. And I had an another surgery in November in the same year. This time was they cut off the right side of lyphmnodes in my throat. I lost my voice for about six months, but my voice gradually came back. I can talk with small voice only. I now am suffering all kind of side effects, such as dry mouth, cracked tongue and hurts, and very sensetive to spicy food, hard to swallow food, severe pain in my throat, etc..Mean time i had three radioactive iodine treatments and many CT and MRI. and again, they found a small nodule in my left lung in September this year. So,I have to wait till next scan which is Jan. 2004. I may have to go through another surgery to remove this nodules. My last blood test's result was thyroiglobulen count was 0, and my doctor was very pleased about it.
  • DELY
    DELY Member Posts: 8
    #15
    yoko118 said:

    Dear Cindy, I had three surgeries altogether. I had had my whole thyroid removed in 1998. I also had the senond surgery in 2002. My tumor was spreaded into my right lung, so they cut my upper right side of my back (about9
    inches),and removed one of my rib,scraped off the deseese in March. And I had an another surgery in November in the same year. This time was they cut off the right side of lyphmnodes in my throat. I lost my voice for about six months, but my voice gradually came back. I can talk with small voice only. I now am suffering all kind of side effects, such as dry mouth, cracked tongue and hurts, and very sensetive to spicy food, hard to swallow food, severe pain in my throat, etc..Mean time i had three radioactive iodine treatments and many CT and MRI. and again, they found a small nodule in my left lung in September this year. So,I have to wait till next scan which is Jan. 2004. I may have to go through another surgery to remove this nodules. My last blood test's result was thyroiglobulen count was 0, and my doctor was very pleased about it.

    HI!
    I AM VERY SORRY ABOUT WHAT YOU ARE GOING THROUGH
    AND IF YOU DONT MIND, I WOULD LIKE TO ASK YOU IF YOU COULD PLEASE TELL ME WHAT KIND OF THYROID CANCER YOU HAVE, AND SINCE WHEN HAVE YOU HAD IT,-
    ME TOO, I HAVE THYROID CANCER MINE IS PAPPILLARY
    AND THEY DISCOVERED IT SINCE NOV. OF "98".
    WELL THANKS FOR THE INFORMATION!!

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