A little freaked out here, would like some words of wisdom

So on September 24 I received my diagnosis from my endo. I have a 1.3 cm nodule of PTC on my left lobe. She then did an US to check out my neck and was suspicious of one of the lymph nodes near my left carotid artery. She checked it several times and decided that she thought it looks clear because it moved around quite a bit when cancer is usually fixed.

She told me I would need a TT and maybe some of my lymph nodes out. I went to my PCP today to discuss my diagnosis and she told me the that endo sent information to my surgeon that I have mets to the lymph nodes. I was kind of shocked at this since she told me she would stage me as Stage 1. This is not stage 1. I am over 45. I am a little miffed at this sugar coated information I received. Now I need a lateral neck dissection as well.

I am terrified. Can you please help me out? Any words of comfort would be very much appreciated.

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First of all, take a deep breath and smile. Your nodule is small and this is a treatable cancer. Most of us hate the "good cancer" analogy because it's still cancer and that just stinks. Even if it's in the lymph nodes, they'll probably only stage it at a 2. The cure rate is above 90%. Don't let it overwhelm you. I'm 30, diagnosed in August with stage 4 pap and I just say ok what's next on the list. I did the surgery, now I'm on the low iodine diet , and next week is rai.

My surgeon told me not to look at the statistics . Just grab ahold of the mindset that you are going to do what needs done and live a long life.

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As for the surgery, the neck dissection didn't hurt and the thyroid wasn't painful either. It felt like someone was grasping my Adam's apple a little when I swallowed. It wasn't painful, just annoying and it was gone in a couple days. I ate a hamburger the evening of my surgery :)

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Dkim: First here's a HUGE HUG: OOOOO! Oh, I understand. Its so scary getting a cancer diagnosis & difficult to not be paralyzed by anxiety about it. I am 46 yrs old and was staged at 3 due to that. My tumor was 1.5cm and spread to the LNs.

Be sure before you get rushed into the OR that you do your homework: make sure the surgeon has done hundreds of thyroidectomies a year and don't be afraid to travel for quality care. Statistics say that Papillary Carcinoma grows slowly so take a couple weeks to get informed before you rush into surgery. This is both for your mental wellbeing and thyroid treatment. A family member of mine had her surgery close to home by an ENT who permanently damaged her vocal cords and wanted to cut her open two additional times until I talked her into going to Columbia. Needless to say, she didn't need the two additional surgeries.

The moral to that story is, research whom your team will be and feel comfortable and confident with them. And if you do not know what questions you should be asking to see what's right for you, that's what we are all here for. You are not alone.

Even if you do not live in NY go to both Sloan and Columbia's NY Thyroid Center's websites and watch the videos and read what they have to say. Search the internet if there are words or phrases you do not understand. I did that.

You'll read at the Sloan website that there is now new medication for lymph nodes that don't accept RAI well. Read that, too, as I didn't have a chance to thoroughly read about it.

Good luck to you from the bottom of my heart and reach out- we're here.

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Thank you excrypted and noonespecial - these words really helped my little freak out. I am lucky that I am living in Maryland and will be going to a surgeon who is world renown for his expertise in thyroid surgery. I just go through these cycles of saying it will be okay in my head and then I learn something new and I cycle back to despair! It is so hard to keep a happy face especially with two little kids around and trying to keep myself together.

Thank you for the recommendation to the sites. I will take a look! Thanks again - both of you. This really helps

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The diagnosis, surgery (TT) and treatment are overwhelming at first. But you will do well. The surgery for many is not that difficult. And for radioactive iodine treatment (RAI) the majority do well with limited side effects for up to 72-96 hours. Some have other side effects if their treatment dose needs to be on the high side. Those are the exception.

Be prepared for a lot of ups and downs emotionally during the first year when you start taking the thyroid hormone (T4) to replace your thyroid. We've all been through it/are going through it. But it is doable! And the people here are wonderful support.

About 80% of people do very well and go on about their lives. You will find a lot of stories here on Inspire from the other 20%. Also, the survival rate from "differentiated thyroid cancer" is above 90%.

FYI, "staging" with this cancer is not accurate until your thyroid has been removed and the pathology report is in. Also, many doctors don't pay that much attention to it. It is age-weighted so some people are "stage 4" just because they are over 60 but are doing fine. I asked my endocrinologist about my staging about a year after my surgery and he had to think about it for a moment. It wasn't foremost in his mind.

Wishing you well in your journey and hoping for a lot of good news along the way.

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Thanks cabro - I am actually already on synthroid since I have Hashimotos. I've done most of the homework on thyroid cancer ...so I am not exactly freaked out about that. I guess I am just annoyed that my endocrinologist (who knows my background - I have a doctorate in cancer therapeutics) sugar coated everything and then didn't actually tell me my real diagnosis. It just threw me for a loop and brought me back to square one when I first heard my diagnosis.

But I watched the videos on the Columbia site (thanks noonespecial) those were really helpful to understand the actual dynamics of the surgery! I am a sponge when it comes to this kind of thing. I need to know in order to feel more comfortable about it!

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Dkim, sadly and though not your fault, you learned a valuable lesson. I had a TT and RAI in Spring of 2012. Nearly a year later I had a suspicious LN tested. It was slightly enlarged at 1cm. The red flag was my Tg crept up 5/10 of a point from <0.2 to 0.7, which is barely detectable. My radiologist said it felt and looked normal (squishy) upon the FNAB and Tg washout. Tg was 7339 in that one LN. I had LND surgery and thyca was found in 2 LNs. Pathology is the only way to tell and even then it could be sketchy.

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beingcelestial - I did learn to ask more questions (which I am in a better place mentally to do now - I think). I accepted mainly because I just didn't want to hear anymore bad news at that point. KWIM. But I am done with that - I want everything. Otherwise how I can fight this thing!

I hope you will now continue to get clear for your LNs. Thanks for responding!

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thanks. do they think they are doing us a favor by "sugar-coating" our symptoms? they are doing us a disservice. we will be nervous about it anyway. we won't rest until we know what it is and how to deal with it/fix it. why delay looking into it? insurance dictates how, what and when to test us...even the best insurance. i have heard "it's highly unlikely, rare" then "good cancer", "looks/feel normal" one too many times. they were wrong each time which is why i am pursuing the "something's not right" feeling in my throat again. my endo suggested i go to an ENT b/c it isn't time for a visit to her. then she told me not to let the ENT do an U/S on me b/c the center she is at will require their own anyway when i see her in mid-november. ugghhh! the ENT is connected with a hospital that took over the cancer center. you would think they would be able to do the same tests at both their locations. if he suggests another MRI i will go for it.

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beingcelestial - I know that it is so difficult to actually get coordinated care. I went to see my primary care physician and told her that one thing I really hated about this whole thing was that I was given this diagnosis and then told to go and make an appt with the surgeon. It was like: Hi, you have cancer. Go here -- and that was it. I am a relatively smart woman and I've managed my mother's breast cancer care - and there I was at a loss. Like why wasn't anyone helping me? It seems so counter intuitive to the whole practice of medicine - to help heal people.

Anyhow - together we'll do this - right? That's why we are here!

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Take care its better to know and do something about it than not to know and find out when theres more damage
i went with my gut feeling and my gut was right every single fricking time - so have faith in yourself and what you think is right for you

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I had my TT and first RAI in the fall of 2009, and then went to a big gathering of families that founded our original settlement... When I got back from that, my endo thought I needed more RAI as my Tg was high (over 360) and I got 208mCi... my lymph nodes all swole up at that point and my ENT decided I needed surgery. I had a bilateral neck dissection with many lymph nodes removed. The RAI was more problems than the surgeries... I would have gladly had the second surgery but not the second RAI! :)

Be Strong and Stay Positive!

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hi Justgeo1 - thank you for your words of wisdom. It is always good to hear that I can rest assured that it will be okay....I am feeling better about it over all but still - of course - worried. Thanks so much!

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