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Follow Up Care - Papillary thyroid cancer

John38
Posts: 5
Joined: Jan 2004

Papillary thyroid cancer. In 1999, I had my thyroid removed and most of the lymph nodes on the right side of my neck. I had 2 consecutive years of I 131 treatments. In 2001, the scan/uptake was negative. How often do you go back for the follow up scan/uptake since being "negative". I am dreading going back for those tests because of all the anxiety it creates.
Thanks in advance.

sjspeds
Posts: 21
Joined: Dec 2003

Do you see your endocrine doctor every 6 months, or every yr. They should running blood tests and advising you for further scans. I go in every 6 months to my endocrine doctor and get an assessment.

John38
Posts: 5
Joined: Jan 2004

I go every 6 months to my endocrine doctor for blood tests and assesment. I realize that every case is unique in some way, but I was just curious to see how often other people go back for follow up scans. Thanks.

cherrie
Posts: 38
Joined: Oct 2003

I go every 3 months for regular blood test and every 6 months for a special blood test and every year for body scan

sjspeds
Posts: 21
Joined: Dec 2003

I have Papillary Thyroid CA also. I got my thyroid removed last Jan. along with 5 or more lymph nodes. I had the radioactive iodine test a few months following the surgery and the scan came back neg. I just saw my doctor today and she felt some lumps on my lymph nodes in my neck. She said don't get worried about it.. But should I? In a month I am going to have the scan again. I asked her how often I should get a scan. She said its Controversy, but usually not even every yr. cause they don't want to expose us to too much radiation. Have you ever had any lumps felt on your neck following your thyroid removal? Thanks.. SJS

John38
Posts: 5
Joined: Jan 2004

If I feel my neck over where the incision was, I feel some scar tissue that has built up from the healing process. Where the doctor felt lumps, is that in the vicinity of the incision? It may just be some scar tissue... Trust your doctor. At least from my experience, they usually don't say not to worry unless they really believe it.

yoko118
Posts: 8
Joined: Dec 2003

I was diagnosed a papillary thyroid cancer in 1998, and had a whole tryroidectomy in the same year. In the year of 2002, it recurred in my right lung and right side of lymph nodes, and had two surgeries in the same year. I had three I-131 treatments and one radiation treatment all together. i took scan/uptake in the middle of January this year, and it came out negative. i am going to take an another one in April. Hardest part was that i had to go on the law iodine diet for about three weeks or so before the test. I also will take PET scan some time this year.

Eftov
Posts: 3
Joined: Mar 2004

Hi, John. Having thyroid cancer means life long follow-up, but not necessarily with annual scans. My understanding is that after two or three negative scans and no increase in thyroglobulin levels, you might be followed with only bloodwork and perhaps ultrasound. I have heard some folks say they are scanned every five years. It depends on your individual case and how aggressive in treatment your doctor is. Lifelong follow-up is necessary because cancer can recur decades later, although it usually does not. Just think of the peace of mind you will get every time your doctor tells you that your scan (or other test) is "unremarkable".

John38
Posts: 5
Joined: Jan 2004

Hi Eftov, Thank you so much!! You made me feel better!

mdk
Posts: 3
Joined: Mar 2004

i have to get tested every year, but it depends on your onocologist

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