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Old 09-19-2003, 06:47 PM   #1
Join Date: Sep 2003
Posts: 74
cuello HB User
Red face follicular cancer-newly diagnosed

Anyone else diagnosed with follicular cancer? Would love to hear your story. Need support!

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Old 09-20-2003, 08:28 AM   #2
Senior Veteran
Join Date: May 2003
Posts: 1,156
hilery79 HB User

I was diagnosed with follicular cancer in July. I had a 2.2 cm cold nodule. First, I had a fine needle aspiration which was inconclusive. So, my surgeon decided to go ahead and remove the left lobe. The frozen section was also inconclusive. They ended up sending the specimen to Mayo's before I had a final diagnosis of "follicular carcinoma with capsular and vascular invasion". Then, about a week later, I went back in to have the rest of my thyroid removed. Overall, neither surgery was too bad. It took me a little longer to recover from the 2nd one.

I had my radioactive iodine treatment and scan about 3 weeks ago. Thankfully, the cancer hadn't spread anywhere else.
Now, I'm taking Synthroid and starting to get back into my regular routine.

It was definatly the scariest thing I've ever had to go through. Even though I knew from the beginning that thyroid cancer is very curable, it was so hard for me to deal with the fact that I had cancer. This board was my lifeline while I was going through this. Everyone was so supportive.

I know it all probably seems overwhelming right now, but hang in there. You'll get through it.
Remember- thyroid cancer is very curable. (It always helped me to keep reminding myself of this)
Keep posting any questions or concerns you have. This board is very supportive. There are a lot of people on here who have been through this.
Take care,

Old 09-21-2003, 05:52 AM   #3
Join Date: Sep 2003
Posts: 74
cuello HB User

hi, thanks for the response. the really frustrating part is that I keep hearing how rare thyroid cancer is and then on top of it, how even rarer the follicular type is. Most stories in the news deal seem to deal with the papillary type.
I'm off synthroid now (Dr isn't putting me on Cytomel) in prep for RAI. What was your experience like with hypo and the treatment itself? Did you experience serious side effects? Also, what was your "quarantine" period like?
thanks for the info !

Old 09-21-2003, 02:52 PM   #4
Senior Veteran
Join Date: May 2003
Posts: 1,156
hilery79 HB User

I, too, kept hearing how rare thyroid cancer was, but I ended up coming across four other people in the town I live in who also had thyroid cancer at some point. However, I haven't known of anyone else who had follicular. Papillary seems to be the most common.

My hypo period really wasn't all that bad. I did the low iodine diet and I think that was the worst part of it. Fortunatly, I was able to take Cytomel up until 2 weeks before my treatment. I didn't really have any hypo symptoms until the very end. The last few days I felt pretty tired and was achy all over. Also, my eyes were really swollen when I woke up in the mornings.

I had my RAI treatment outpatient. I was able to come home that day. I just had to take a lot of precautions and I stayed isolated in my bedroom for a few days. I was a little lonely, but was able to catch up on sleep.
Make sure you have sour candy to suck on after your treatment for a couple days. I did this the first day, but I felt a little nausious the next day and didn't do it then. I ended up with very swollen salivary glands after a few days and it was kind of painful.

Take care and good luck with your "hypo period" and treatment. Are you doing the low iodine diet?

Old 09-21-2003, 03:13 PM   #5
Join Date: Sep 2003
Posts: 74
cuello HB User

My endo didn't mention anything about the low iodine diet but I'm going to ask about it this week. Sounds like its worth doing for the best chance of optimal uptake. How long were you on it? the full 5-6 weeks or only 2 or so?

a couple of other questions while I have your attention

how old are you ?
what sort of followup tests will you expect over the next # period of time?
were you actually given a prognosis at time of diagnosis?

thanks for the input. Much appreciated!

btw- I'm 34 with an 18 mo. old and would like to try for a second child so this is all a bit overwhelming right now. thanks again!

Old 09-21-2003, 06:09 PM   #6
Senior Veteran
Join Date: May 2003
Posts: 1,156
hilery79 HB User

I was on the low iodine diet for 2 weeks before my treatment. My Dr. never mentioned this diet to me either. Actually, when I asked him about it, he told me it wasn't necessary. I learned about it on this board and decided it was worth it to follow it.

I just turned 24 and have 2 kids(4 yrs and 6 months). Thankfully, my husband was able to take some time off work while I was going through all of this to help with the kids.

I will go back in the middle of October to have another body scan and to get my hormone levels checked. Then,(as long as the scan is clean) I will go back once a year for another scan.

I was never given a prognosis. I guess I never really asked for one. The Dr.'s always told me that this type of cancer is very curable. Hilery

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