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Old 06-16-2011, 06:18 AM   #1
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Terrified Newbie

Finally got the results of my thyroid ultrasound yesterday after the report never made it to my doctor for a month and I've gone from scared to terrified.

They've found four nodules, but the dominant one is the one they are worried about. It measures 3.6 x 1.8 x 2.2 cm, demonstrates evidence of increased vascularity and is likely solid in nature. The rest are under 1 cm and not considered suspicious. The recommendation is FNA of the large one, but my doctor has scared me to death. She has indicated that this has all the hallmarks of cancer: large, solid and vascular. I am so afraid this has spread throughout my whole body and am on the search for an FNA specialist as I type this.

Has anyone else had a nodule this big that was solid and vascular in nature that was NOT cancer? Can anyone recommend where I can go to find a doctor who specializes in FNA? My doctor has given me one name but she's out of town (so is my doctor) and does not accept my insurance plan.

Background info: I'm a 41-year-old female whose only risk factor is that my uncle was diagnosed with thyroid cancer about 4.5 years ago.

 
Old 06-16-2011, 06:33 AM   #2
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Re: Terrified Newbie

Thyroid cancer is very curable, in the far majority of cases. It really doesn't go throughout your body, like other types. Chances are good if they remove your thyroid and give you one Radioactive Iodine treatment you will be fine for the rest of your life. Even if thyroid cancer goes into your lymph nodes, you will still be OK.

I know it's easy to be scared. I had myself dead and buried. I still have thyroid cancer 6 years after my thyroid was removed, but they dont' know where it's hiding. And, I am still here and expect to die from something else. I would tell you to research it online,but that didn't keep a worrier like me from expecting the worst. It takes time to understand that in the FAR majority of cases, this is curable, or something you can live with.

 
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Old 06-16-2011, 12:49 PM   #3
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Re: Terrified Newbie

Quote:
Originally Posted by Linda1652 View Post
Thyroid cancer is very curable, in the far majority of cases. It really doesn't go throughout your body, like other types. Chances are good if they remove your thyroid and give you one Radioactive Iodine treatment you will be fine for the rest of your life. Even if thyroid cancer goes into your lymph nodes, you will still be OK.

I know it's easy to be scared. I had myself dead and buried. I still have thyroid cancer 6 years after my thyroid was removed, but they dont' know where it's hiding. And, I am still here and expect to die from something else. I would tell you to research it online,but that didn't keep a worrier like me from expecting the worst. It takes time to understand that in the FAR majority of cases, this is curable, or something you can live with.
Thanks, Linda. I know that "dead and buried" feeling well. I'm exactly like you and have already done the research. Even my doctor told me that if you have to get cancer, this is the one you want to get. Of course, when I do that research, I focus on the limited few cases where the prognosis is poor. It's my nature, not to mention the fact that I fought five years to get a doctor to take my thyroid symptoms seriously. Time and time again I was blown off because my labs were normal. Now I may have had cancer growing for a good part of that time. It makes me both angry and sad.

I'm glad to hear you're doing so well and I hope they find the lingering cancer and rid you of it once and for all.

 
Old 06-16-2011, 01:21 PM   #4
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Re: Terrified Newbie

I am going to make you feel even better. I found a lump in my neck when I was 37. The Doctors didn't think it was anything, because it was not the thyroid. Even my surgeon thought the lump was not cancer. It was removed when I was 55---cancer. By then, it had spread throughout my thyroid, but in "clouds". I probably had the cancer when I was in my 20's, because I had radiation to my face. In my case, it was really slow growing. My sister also had a goiter that was watched for many years.That too was cancer. We both had radiation for teenage acne.

One recommendation....if they find only 1 side has cancer, you are better off getting the whole thing removed. Otherwise, if they find more thyroid cancer, you have to have another surgery. You will be on thyroid meds anyway. Best wishes to you. I know how you feel!!

 
Old 06-16-2011, 01:45 PM   #5
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Re: Terrified Newbie

I have already decided that if the FNA of the main nodule comes back inconclusive, suspicious or (praying not) malignant, I am going to request that the entire thyroid be removed. I've read stories of people who had TT, with their large nodule being benign only to find out the small one harbored cancer. Although my doctor has assured me she'll make sure I get an ultrasound every year to keep an eye on these smaller nodules, I know I won't be able to live normally with the thought that they could be cancerous hanging over me. Every year I will have to worry all over again. And honestly, I'm thinking I may have to have surgery anyway. This thing is pretty big and started giving me occasional collarbone discomfort and a choking sensation while I was sleeping before a doctor finally palpated it. (Despite its size, I still can't see it in a mirror. I think much of it is hidden behind the collarbone because even the ultrasound was uncomfortable in that region.)

I don't relish the idea of being on meds for the rest of my life, but that may be the best thing for me. I've got a host of severe thyroid symptoms in spite of normal labs.

You have made me feel better. I can't believe you went almost 20 years knowing the lump was there. But doesn't it just eat you up that your suspicions were on the mark and the doctors were wrong all along? I wish I pushed harder right from the start, but when you're continually told you "look 100% healthy on paper" and it's insinuated that you're just depressed, it's easy to give up.

To anyone else reading this thread, DON'T give up. Trust your instincts about your own body.

 
Old 06-17-2011, 06:08 AM   #6
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Re: Terrified Newbie

My first lump was a 2 inch lymph node. It would recede when I was sitting on the exam table. It was really my fault. I could have insisted, but I chose to bury my head in the sand. I felt it every day---to see if it was changing or growing. It didn't. What made me finally face it was when the other side of my neck popped out in a goiter.

Most people feel fine on the thyroid meds. If you don't, they can give you a bit of cytomel, which is T3. I am in the midst of trying that in addition to the synthroid.

 
Old 06-17-2011, 10:56 AM   #7
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Re: Terrified Newbie

I feel the same way ... that I should have pushed but I walked away because I was tired of being treated like a hypochondriac. I'm currently on Cytomel. The open-minded thyroid physician (who found my nodule) agreed to give me a trial in spite of my labs. As it turns out, I have a high Reverse T3, which is blocking my active T3 from reaching the cellular level. That's the theory anyway, but all of that is moot now in light of this cancer scare.

My anxiety is really ramping up now. Yesterday I was consumed with speaking with doctors and setting up appointments so I couldn't think about it as much. Now I can't stop imagining the worst. I'm already looking into cancer hospitals and where I want to have the surgery done. I have no idea how I'm going to get through the wait between the biopsy and the results. I appreciate the distraction you've given me.

 
Old 06-17-2011, 11:40 AM   #8
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Re: Terrified Newbie

You don't necessarily have to go to a cancer hospital. Many general surgeons are good at taking out thyroids. The key is to find someone who does it a LOT!! My endo recommended a guy on the other side of town. It was worth it to have someone competent take it out. Do you have a magazine that lists the "best" doctors in your area? I live outside a large city, so it was easy for me to find good people. Also, if you can find a support group for thyroid cancer in your area, they could offer suggestions.

 
Old 06-17-2011, 11:56 AM   #9
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Re: Terrified Newbie

Unfortunately, I'm in a very small city so I look elsewhere when something major is involved. I'm eying up Sloan Kettering if surgery is necessary, regardless of the outcome. They are a top cancer hospital. Highly unlikely there is a support group nearby. I might find cancer support, but not thyroid cancer specifically. To me the FNA is just slowing things down. If this thing is large enough that it should probably be removed, why not just schedule the surgery now? My doctor's office just called and bumped the FNA to the 29th. (They had initially tried to get me in the 22nd on very short notice.) The waiting is going to kill me. ;o( What's that about whatever doesn't kill you? Oh yeah, it only makes you stronger ... .

 
Old 06-19-2011, 05:02 PM   #10
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Re: Terrified Newbie

Hi! I just read your thread and I have to tell you that I have a similar situation. My nodule is not quite as big as yours but has the same characteristics. 1.4 cm. and 3 other small nodules under 1 cm. I had a fna and it came back neg. I also have a strong family history of thyroid cancer in my family. You sound as scared as I did when they first found my nodule. I am sure you have done your research and although it is very curable the info you found probably scared you also. I had my fna 3 months ago and seem to be finding little lumps here and there and probably woundn't have noticed them if it had not been for the nodule. I am almost 40 and I think my worry is also linked with that number. Also have 3 children. I really understand why you are so terrified.... but just hang tight until your results. I know it is hard. But if positive you will still be fine. Looking back now things will settle down. Good Luck!

 
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