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3yrs After Thyroid Cancer...Now What?
Summary:
Diagnosed papillary carcinoma, March 2005---->total thyroidectomy a week later; 9 of 14 lymph nodes removed were cancerous---->Classified as Stage IV, tumor was (relatively) large, slightly over 8" long and 1" wide at widest point-"starting" just behind my right ear lobe & "ending" just behind the sternum,
After a week in the hospital (!) my parathyroid glands still hadn't kicked back into gear. Released with instructions to eat 30 Tums/day! (My primary care doc hit the roof over that one! Prescribed 0.5mg Calcitriol, which I've since discontinued)
Therapeutic dose of I-131 aprox 6wks later.---->Diagnostic dose & scan aprox 8-9months post op was normal.
Moved to a big, unfamiliar city & lost healthcare benefits. I've been very lax about follow up care since moving.
Current Rx: Levothyroxine 137mcg (seems about right, give or take), Occasionally my fingertips/toes/nose/lips feel numb/tingly, so I eat a handful of Tums & symptoms resolve. Also regularly spend 20-50min/week in a tanning bed.
28yo female. Life-long history of syncope w/ one witnessed tonic clonic seizure in Aug 2005. No loss of consciousness or (known) seizures since. No other known health concerns.
What ongoing follow up care and/or diagnostic scans are recommended at this point?
Diagnosed papillary carcinoma, March 2005---->total thyroidectomy a week later; 9 of 14 lymph nodes removed were cancerous---->Classified as Stage IV, tumor was (relatively) large, slightly over 8" long and 1" wide at widest point-"starting" just behind my right ear lobe & "ending" just behind the sternum,
After a week in the hospital (!) my parathyroid glands still hadn't kicked back into gear. Released with instructions to eat 30 Tums/day! (My primary care doc hit the roof over that one! Prescribed 0.5mg Calcitriol, which I've since discontinued)
Therapeutic dose of I-131 aprox 6wks later.---->Diagnostic dose & scan aprox 8-9months post op was normal.
Moved to a big, unfamiliar city & lost healthcare benefits. I've been very lax about follow up care since moving.
Current Rx: Levothyroxine 137mcg (seems about right, give or take), Occasionally my fingertips/toes/nose/lips feel numb/tingly, so I eat a handful of Tums & symptoms resolve. Also regularly spend 20-50min/week in a tanning bed.
28yo female. Life-long history of syncope w/ one witnessed tonic clonic seizure in Aug 2005. No loss of consciousness or (known) seizures since. No other known health concerns.
What ongoing follow up care and/or diagnostic scans are recommended at this point?
I think with a couple of clean scans you may be able to have an annual ultrasound along with regular blood work.
Welcome!
I too am glad that you found this forum. I'm surprised that they said you had Stage IV papillary carcinoma at age 25. According to the American Cancer Society the highest stage of papillary thyroid cancer in a patient under age 45 is Stage II:
cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_thyroid_cancer_staged_43.asp
(add "www." to the beginning of that - I can't post it all at once because this site will scrub it)
My sister also had lymph node involvement and her cancer had spread to her breasts and was only Stage II.
Anyway . . . the least that you should be doing is to have your thyroglobulin and TSH levels checked every 6 months. You should also have a scan yearly but if your TSH and Tg are in control that may not be indicated.
Since you have had such a serious problem with your parathyroids you need to be on calcium every day and not just wait until you feel numbness or tingling. A bottle of calcium (with Vitamin D) tablets can be less expensive, and more effective, than Tums.
Check with your local hospitals and talk to their foundations to see if there is a fund that could help you offset the costs of the testing and endocrinologist. I know that, because of my cancer diagnosis and losing my insurance a few years ago, I had to talk to my State department of health which connected me with the State-sponsored health insurance pool for those who could not obtain private insurance (because of health concerns). It is expensive ($600 a month just for me - not counting the costs for my kids, my copayments, or deductibles) but it is a life saver when it there is a major health problem.
Welcome to the forum and please keep posting!
Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and possibly '08
three sisters with papillary carcinoma
I too am glad that you found this forum. I'm surprised that they said you had Stage IV papillary carcinoma at age 25. According to the American Cancer Society the highest stage of papillary thyroid cancer in a patient under age 45 is Stage II:
cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_thyroid_cancer_staged_43.asp
(add "www." to the beginning of that - I can't post it all at once because this site will scrub it)
My sister also had lymph node involvement and her cancer had spread to her breasts and was only Stage II.
Anyway . . . the least that you should be doing is to have your thyroglobulin and TSH levels checked every 6 months. You should also have a scan yearly but if your TSH and Tg are in control that may not be indicated.
Since you have had such a serious problem with your parathyroids you need to be on calcium every day and not just wait until you feel numbness or tingling. A bottle of calcium (with Vitamin D) tablets can be less expensive, and more effective, than Tums.
Check with your local hospitals and talk to their foundations to see if there is a fund that could help you offset the costs of the testing and endocrinologist. I know that, because of my cancer diagnosis and losing my insurance a few years ago, I had to talk to my State department of health which connected me with the State-sponsored health insurance pool for those who could not obtain private insurance (because of health concerns). It is expensive ($600 a month just for me - not counting the costs for my kids, my copayments, or deductibles) but it is a life saver when it there is a major health problem.
Welcome to the forum and please keep posting!
Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and possibly '08
three sisters with papillary carcinoma
First, welcome to the forum. This is an amazing place for support and knowledge of all things thyroid!
I was diagnosed with papillary carcinoma about a week ago. I'm almost 3 weeks post TT (total thyroidectomy). From what I understand, a body scan should be done yearly along with a Thyroglobulin check to see if thyroid cells have returned. You should also be having all of your thyroid levels checked at least once per year to make sure they are where they need to be. Others here know MUCH more about that than I do.
If you are still getting numb/tingly feelings, it would seem your parathyroids have not kicked back in yet. You should have your calcium checked, as well, and keep on a calcium/vitamin D supplement.
It's wonderful that you found this forum and want to take good care of yourself - good luck to you!!!
I was diagnosed with papillary carcinoma about a week ago. I'm almost 3 weeks post TT (total thyroidectomy). From what I understand, a body scan should be done yearly along with a Thyroglobulin check to see if thyroid cells have returned. You should also be having all of your thyroid levels checked at least once per year to make sure they are where they need to be. Others here know MUCH more about that than I do.
If you are still getting numb/tingly feelings, it would seem your parathyroids have not kicked back in yet. You should have your calcium checked, as well, and keep on a calcium/vitamin D supplement.
It's wonderful that you found this forum and want to take good care of yourself - good luck to you!!!
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