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Old 05-05-2011, 07:55 PM   #1
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Red face Please help - still in limbo

I am wondering if anyone who has had thyroid cancer is more familiar with characteristics regarding the nodules. An ultrasound confirmed them and was sent to a sureon fob biopsy, this surgeon refused biopsy and ordered a second US in six months. I went back to my doctor because I had been getting really bad pain in my neck and was having intermittent voice hoarseness. He pushed up the US. Th radiologist didn't make any recommendations on either us report - however I requested all my tests and took them back to my doctor to discuss.
My nodules (2) are not very big - one 6mm and the other was like 2 something, still mm. However I have found that research is showin that doctors belief of the larger the more likely to be cance is now being proven wrong.
Anyways, the problem the surgeon has with biopsy on it is apparently because it is adjacent to my Internal caratoid artery, and they are concerned over it being nicked. It seems to be too much of a liability issue.
The larger nodule says it's complex solid, echo poor, and conTins microcalcifications (from what I've found these all increase the chances and though not definite, they are red flags)
The smaller one only says that it's hypodense.
My doctor agreed that these were concerning traits, but again the artery issue came up - after another meeting I am now being referred to another specialist for a second opinion - I didn't like the first and has a bad reputation.
I also have enlarged lymph nodes under my jaw, one has been there since the start, three smaller ones came about a month ago.
I am wondering what others have found regarding characteristics in their nodules and their diagnosis?
Also has anyone else had extreme pain - I also get the hoarseness like I said and difficulty breathing (also only intermittent) though the doctors feel that te nodule isnt big enough to cause this - when these symptoms come, they are followed by pain and swelling in neck. Anyone find a good way of dealig with pain? Please any help is appreciated

 
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Old 05-12-2011, 06:39 AM   #2
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Re: Please help - still in limbo

Hi Jennifer,

I'm brand new to this forum (this is my first post), but I wanted to respond to your message because I'm having the same things as you are, as far as pain. The doctor found a lump on my thyroid during an MRI scan. I found out about it in February (guess they didn't think I needed to know ). Since then, I've had blood tests (normal), a US, a CT scan and just had a biopsy done last Wednesday (May 4th). When I saw the Endo, she told me that my nodule (about the size of a grape she said), wasn't causing my trouble swallowing, etc. Yet, I have centralized pain right where the nodule is (couldn't feel it before, now you can see it!), hoarseness and sore throat, along with pain that radiates up to my ear and down into my shoulder, arm and chest. All on the left side. Which is where my nodule is. The Endo called last night after 7pm, but I wasn't home so she's supposed to call back today. If it's benign, she wants to wait 6 months. Yet I'm still in pain, achey all over like I have the flu without actually being sick, and I'm exhausted all the time. I also have swollen lymph nodes around the left side of my neck and under my jaw.

Anyway, I wanted to let you know that I feel for you and am having a lot of the same symptoms...yet I'm being told that it's not the nodule in my neck. The only thing that seems to help is to take pain meds. I was told to take Naproxen...but I already take that twice a day for my spine (degenerative spine and slipped disc).
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Old 05-14-2011, 07:44 AM   #3
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Post Re: Please help - still in limbo

Hi Jennifer,

Well, my Endo called to say that they did find cancer cells in my nodule. The US report said that I had a 1.2cm single hetergeneous hypoechoic nodule on the left lobe of my thyroid. I've had the same things you describe, and it did turn out to be malignant. I don't want to scare you because from what I understand it's like a 5% chance of having cancer. But, I wanted to followup and let you know what I found out. I still don't know what type of cancer cells were found. I'm supposed to call my Endo on Tuesday and I'll be able to get more details then.

Good luck to you and keep us posted on what you find out.
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Old 05-15-2011, 03:25 PM   #4
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Re: Please help - still in limbo

I'm so sorry or hear about your diagnosis; I pray everything goes smoothly for you and you have a speedy recovery. Thankfully you have been able to find answers right away and now you can have things dealt with.
I finally got another appt. With a new surgeon ( June 8) and hoping that he will get to the bottom of things and deal with them.
I've now developed new issues and have something wrong with my colon as well, doctors are scheduling a colonscopy, and I am hoping that this brings an end to my health problems. Very tired and concerned with everything (unfortunately my husband and son are also having health issues that we are dealing with) so as u can imagine my stress level is at it's peak! Lol! I am trying to relax and pray for the best, which as u know is hard.
Please keep me posted how your surgery goes and how everything turns out - my prayers to you!

 
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Old 05-19-2011, 07:53 AM   #5
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Re: Please help - still in limbo

Jennifer, I'm so glad to hear that you have an appointment with a new surgeon. Hopefully you'll get answers and finally make some progress towards feeling better. I spoke with my Endo and she couldn't confirm the type of cancer, so we're treating it as papillary/follicular until they take out my thyroid (next week) to see what type of cancer it is. I understand the stress level thing...my husband had rotator cuff surgery and my daughter just went to Children's yesterday to see the Endo because her thyroid is non-functioning and it had halted her growth (she's 15). We're hoping she'll reach 4'9" in height, but we don't know. Keeping our fingers crossed and lots of prayers.

Thank you for your support. It really means a lot to me. Hang in there and know that you aren't alone. We'll get through this.
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Old 05-26-2011, 08:00 AM   #6
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Re: Please help - still in limbo

Hi Jennifer, I just read your post as I am new to this forum. I have a similar situation. I have a few nodules on my thyroid, one being 1.4 cm. I had a sister who passed away from a very aggressive cancer that started in her thyroid and went to her lungs and bones. Also a grandfather, same thing... I had a fna and it came back negative. The nodule was so dense that they had a difficult time retreiving cells during the procedure. I have a lot of the same symptoms that you are having. I have a sore neck all the time that travels down my right arm. That is how they found the nodule (cervial mri). I too am very frustrated. My doc thinks I'm overreacting but I have so many odd symtoms and still the nodule is neg. With the strong family history I feel like it is a ticking time bomb and it's just a matter of time until it develops into cancer. I have 3 children and I worry that if this is heriditary they will be affected as well. I'm just glad to hear someone else is having arm and neck pain with the swollen lymph nodes. I just found a small mass under my chin 2 weeks ago, and still my doc thinks I'm overreacting. I hope all works out well with your tests!

 
Old 09-30-2011, 10:48 AM   #7
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Re: Please help - still in limbo

My cancer turned out to be papillary. By the time the cancer was removed, the nodule had grown to 2.5 cm. It started out being >1cm back in January. I had a total thyroidectomy in June. I am now getting ready for my rai treatment next week, so I have been off of my levothyroxin since Sept. 17th and I've been on the low iodine diet as well. I've been extremely tired since the surgery, but my endo is changing my dosage from 100mg to 125mg after the rai. My rai is scheduled for Oct. 7th.

Now, I have a new lump, right where the cancer nodule was...yet, I have no thyroid. Hoping it is just scar tissue and not a reoccurence of the cancer. This has been a tough road and I'm not through it yet. But I know eventually (I hope anyway) that I'll feel better and get back to normal life. I will say that I've had pain and swelling in the left side of my throat/up into my left jaw and ear off and on since last March. This was caused by lymphnodes swelling to fight the cancer. After they removed the cancer, about 6 weeks post op, I started having the same symptoms. I truly hope that it isn't more cancer, but if so, that's what the rai is for. Anyway, just wanted to give an update and see how things went for you, Jennifer.
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