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Old 05-01-2007, 12:40 PM   #1
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Sclerosing variant of papillary thyroid cancer

please help me. this is the 1st time I have used any site like this. I have had a total thyroidectomy and have the very rare sclerosing variant form of papillary carcinoma. i really need some help in getting in contact with someone who can talk to me. I am really scared after reading about this on the internet. I have an endocrinology appt on 5/17 and will find out more but I fear I may lose my mind (in addition to my thyroid) before then.

 
Old 05-01-2007, 02:06 PM   #2
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Re: Sclerosing variant of papillary thyroid cancer

My first advice to you, is to stop researching on the internet, because you are getting yourself very scared. I had pappillary thyroid cancer 2 years ago, and at first, doing research helped me get informed. But then, because the cancer cases described on the internet are only the worst cases, I got very scared---for nothing. I had "follicular variant" of pappillary, with spread to the muscle in front of it, and the internet had me dead already---2 years later, I'm still here, and intend to be for much much longer.

When you go to the endo., bring a list of questions about treatment, follow up, etc. I think they treat your version of pappillary like any other, with RAI, which isn't such a terrible thing.

You also might want to ask the endo. to help you get a second pathology opinion on your tissue, because it is so rare.

I'm sorry you got this diagnosis, but please hang in, you are really going to be okay. You need your doctor to explain the process, and take each slow step day by day, and try not to get ahead of yourself.

 
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Old 05-01-2007, 03:13 PM   #3
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Re: Sclerosing variant of papillary thyroid cancer

Thank you much. Any other questions you think would be helpful to ask the endo would be appreciated.

 
Old 05-01-2007, 03:26 PM   #4
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Re: Sclerosing variant of papillary thyroid cancer

If you are having RAI, I would ask:
1. Will you need to go hypothyroid, and for how long?
2. Can you use cytomel up until the last few weeks, and get a prescription.
3. You want a nuclear medicine facility with experience in your type of thyriod cancer, even if you have to travel.
4. Will you have to be kept in the hospital for RAI, or is it outpatient?

General questions:
1. Has the endo. had any experience with this form of pappillary?
2. Should you see any specialist in thyroid cancer, and if so, get a referral.
3. What is the best way to follow up (ie, I get ultrasounds with my endo. every 4 months)and to prevent recurrence?
4. Will your TSH be kept supressed to prevent a recurrence?
5. Will the doctor also make sure you feel good on the dosage that is supressed?

Also, I didn't need a support group, but there are thyroid cancer support groups that my endo. offered me in my area. You can even call the endo's office in advance and ask for one.

Be well..distract your mind with busy things as much as possible..be strong.....I'll keep you in my thoughts and prayers.

 
Old 05-01-2007, 05:15 PM   #5
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Re: Sclerosing variant of papillary thyroid cancer

Thank you soooooooooooooooooo much love! Signing off for today. Got to go rescue a stranded friend.

 
Old 05-02-2007, 11:52 AM   #6
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Re: Sclerosing variant of papillary thyroid cancer

Hi there. I really do appreciate your help. I am hoping to talk to others out there who may have had my variant and can share how they feel. Have you had RAI?

 
Old 05-02-2007, 01:00 PM   #7
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Re: Sclerosing variant of papillary thyroid cancer

Hey there. My endo just rescheduled my appt until tomorrow from May 17th. I wanted to thank you again. Your examples of questions to ask came just in time.

 
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