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Tell me your thyroid cancer story... please

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Old 10-29-2011, 09:42 PM   #1
Join Date: Oct 2011
Location: Hearst, Ontario, Canada
Posts: 4
ThyroidProblems HB User
Exclamation Tell me your thyroid cancer story... please

Hi everyone! Im a 24 yr old woman and Ive had thyroid problems for over 10 years. I had an ultrasond done 10 years ago and theres was nodules and goiter. They said it wasnt cancerous. Since then I had 2 babies, and they had to change my synthroid many times, before, during and after pregnancies.

My youngest will be 1 in 2 weeks and I feel like Im dying. My neck is swollen I feel something in there.. Its hard to describe. When I swollow food it feels like it gets stuck in my throat. I had another ultrason done 1 month ago and same story... They said I had a goiter and nodules. But it said on the report that he URGED a iodine scan.. But my endo said I cant do this because Id have to stop synthroid for 1 month.

So how will they know if I have cancer or not? Back in July I had blood work done and my TSH-T3-T4 were OK and I had very high antibodies. But since my neck was swollen they increase my synthroid from 150 mcg to 200 mcg. In my last blood work 2 weeks ago my TSH was too low - T3-T4 were OK and my antibodies were up to 5000! So Im back to 150 mcg. I feel like Im dying.. Im exausted, my voice changes, I cant stay awake all day i HAVE to sleep during the afternoon.. I cant keep up with the 2 kids...

How did you find out you had cancer? Why was I feeling that bad back in July if all my bloodwork were OK but the antibodies..? What do you think?

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Old 11-08-2011, 10:28 AM   #2
Join Date: Nov 2011
Location: Ny, Ny
Posts: 5
Bsheridan HB User
Re: Tell me your thyroid cancer story.. please

My doctor felt a lump on my thyroid and sent me to an endocrinologist. He did a biopsy right in the office (involves a needle going into your neck - not as bad as you think) and when no fluid came out, he sent me for an MRI. Although I had a heavy family history of thyroid cancer so we pretty much knew then. You need a biopsy. You can go right back to work - you won't even need an aspirin.

Old 11-12-2011, 07:50 PM   #3
Join Date: Nov 2011
Location: PA
Posts: 1
krissydoll HB User
Re: Tell me your thyroid cancer story.. please

My thyroid cancer story (so far!)
I am a 46 yo woman. Back in my twenties I had nodules which were treated with synthroid. They biopsied them and they were benign. They kept me on the synthroid for years which seemed to keep them away. Then one day a doctor told me I could go off of the synthroid, so I did. For several years following, I didn't have a check up. There were some life issues and I neglected my health. Then one day not too long ago I realized that I was having difficulty swallowing, and when I was sitting at my desk I had difficulty swallowing when my head was back. Went to my Primary, who felt masses on my neck. From there he set up an ultrasound and contacted an endo, who got me in for a biopsy about a month later. The biopsy, they told me was in an indeterminate zone whereby it was impossible to confirm cancer, though they told me it was about a 75% chance that it was. They also said without a doubt that a total thyroidectomy was indicated. I clung to the hope that when I was younger the biopsies always came back benign. In the mean time they also did a Barium Swallow because of the difficulty swallowing, which showed an indentation from the mass on my right side. I agreed to the surgery indicated, and did a lot of research on my own as to whether this was the only way to go. Everything I read seemed to indicate that a TT was the best thing if it was cancer so that's what we did.

I should mention that my thyroid levels had been completely normal all throughout, but I still felt lousy most of the time and was getting to the point, the last six months where I was not functioning productively at all. They never did antibody levels, so I don't know what they were.

Now I am two and a half weeks post op. The path came back positive for cancer and I am awaiting an appointment with the endo this week to determine when to start RAI treatments. They sent me home from the hospital on Levoxyl and calcium since my levels were low. But thankfully the surgeon spared my parathyroids and things seem to be back to normal now.

I hope this helps a little.

Old 11-24-2011, 09:04 AM   #4
Depressed Diane
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Join Date: Jun 2011
Location: Wisconsin, USA
Posts: 13
Depressed Diane HB User
Re: Tell me your thyroid cancer story... please

PLEASE get to a different Endo! You need a needle biopsy done on your thyroid nodules. (It's not as bad as you think...I was so scared but was surprised at how easy it was...not painful). should have the iodine scan. I didn't have to go off of my meds the first scan I had...with a tracer dose of iodine. It's the Whole Body Scan that you have to go off of your meds for. Maybe that is the scan they are recommending?

You NEED to see a different endo. They CANNOT tell if it's cancer or not without a biopsy...remember that.

Good luck to you!

Old 01-21-2012, 10:17 PM   #5
Join Date: Jan 2012
Location: Dix Hills NY USA
Posts: 4
15Bucks HB User
Re: Tell me your thyroid cancer story... please

I had a biospy that was negative then a few months later decided to have the lump removed anyway and I was shocked to learn it ended up being Throid cancer, even after negative biopsy.My surgeon said this is much more common then people know.Good luck and i agree get a different Endo

Old 04-07-2012, 11:22 PM   #6
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Join Date: Mar 2012
Location: Payson
Posts: 21
GeeWizzz HB User
Re: Tell me your thyroid cancer story... please

9 years ago I noticed a lump in my neck, I went to my family doc he ran some thyroid uptake tests and such and sent me to an endo. She recommended a FNA, it came back negative at that time I had just lost my insurance so I decided to hold off. 1 year later I found it difficult to breathe if I laid on my back and swallowing was extremely difficult so I went to a surgeon and asked to have it removed regardless of biopsy or what not I could not live like this. He told me they would remove the right side of my thyroid and they would do a biopsy while I was on the table, if it was negative they would close me up and I could go home the next day. The goiter was large and it was difficult for them to remove it but they were confident they had got it all. It was so large they had to scrape my neck muscles to remove the tissue, so the pain was pretty severe but I was glad that it was over with. 2 days after I got home my surgeon called to tell me that a second biopsy had discovered that it was cancer and I needed to go back to the hospital to remove the other side. They were able to preserve my para thyroid and they were confident they got it all but I was give RAI just in case. Its been 9 years now and I continually struggled while taking levoxyl or synthroid to keep my tsh levels where they needed to be. I am now taking armour thyroid and my levels have remained stable for over a year. I do have to take a vitamin d supplement as it seems my body just doesn't absorb it like it use to. I suggest make sure you get a good endo, make sure you are well educated about how the thyroid works, also a FNA really only tests the tissue that it removes doesn't always give you a true reading on what is up with all of your thyroid.

Old 05-24-2012, 10:31 AM   #7
Join Date: May 2012
Location: Rincon, GA
Posts: 1
loviepoohbear HB User
Re: Tell me your thyroid cancer story... please

I am 32 yrs. I was first found out I had thyroid cancer after having my second son. I went to the hospital about a month after he was born. I was so sick, thought I had the flu. Well turns out I had a gallstone blocked in my bile duct, which was causing me to have pancreatitis and almost killing. Well during them finding all of that out, they found i had a golf ball size mass in my thyroid. They did a thyroid biopsy after I had recovered from my gallbladder surgery. They found I had papillary carcinoma. I had to see a general surgeon to have it removed. Had a total thyroidectomy 1/07. Then about 2 mths after had radioactive iodine treatment. Everything was fine till 2010 when I went for a ultrasound to check things out, because I was seeing a new Endocrinologist. Well turns out they find 3 lymph nodes. About a couple weeks later I go for a biospy. They tell me I have cancer again. 8/10 I had a total neck dissection. Were they cut you all the way up to the back of your ear. They removed like 42 lymph nodes. They found only 3 had cancer. So about 1 1/2 to 2 mths later I had another Radioactive Iodine treatment. Then in 2011 just went for a MRI to see if anything had returned. Well they found my lymph nodes. Had to have another biopsy, which came back positive. They I had to have another surgery on 5/2011. After surgery I was sent to a Radiation Oncologist. They thought it we be best to have radiation to my neck area, because Radioactive Iodine had not work for me. I did not end up getting treatment, due to my husband losing his job and our health benefits. So we moved to were he got a new job and now I'm having to start all over again. They doctors here are passing me around like a bag of potato chips at a party. I now am scheduled to see doctors at the Mayo Clinic, which is 2 hrs from were we live. Hopefully they can tell something.

Old 06-04-2012, 12:04 PM   #8
Join Date: Dec 2006
Location: Maryland
Posts: 111
jr772 HB User
Re: Tell me your thyroid cancer story... please


You have been through so much with this. My thoughts and prayers go out to you, and I hope that the doctors you see at the Mayo clinic choose treat you, rather than pass you along to even more doctors. I know that feeling. I know how much it sucks. With lymph node involvement, I understand that the nodes have a functional purpose, but sometimes it seems all they really do is collect or manifest cancer.

I hope that your next treatment will wipe out those cancer cells once and for all.

Please take care.


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