# Has anyone had metastatis to distant sites?



## onbrake (Jul 31, 2013)

I am in the early stages ... FNA 2 years ago showed atypical cells. I haven't had surgery because my Vitamin D is literally depleted and they can't get it to stay consistently high. It's gone up to mid-level already but doesn't stay there. Typical result is 6-7 for me, and normal is 30. We've gotten it up to 17 already but it always shoots back down as soon as I get off of major amounts of supplements. Now, I have two very big lymph nodes in the sides of my neck, more difficulty swallowing, and am developing hoarseness and a slight sore throat every morning when I wake up that goes away with water. It seems to me that most people in the posts I've read here have caught their thyroid cancer early, so the survival rate is quite good. Has anyone had papillary or follicular cancer that had spread to distant sites and is now doing well? I have no reason to believe I would have cancer that has spread to distant sites, but the fact that it's been 2 years since my atypical biopsy result does scare me and I was just wondering. I will be seeing my endo and getting another ultrasound/biopsy soon. Thanks!


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## Andros (Aug 26, 2009)

onbrake said:


> I am in the early stages ... FNA 2 years ago showed atypical cells. I haven't had surgery because my Vitamin D is literally depleted and they can't get it to stay consistently high. It's gone up to mid-level already but doesn't stay there. Typical result is 6-7 for me, and normal is 30. We've gotten it up to 17 already but it always shoots back down as soon as I get off of major amounts of supplements. Now, I have two very big lymph nodes in the sides of my neck, more difficulty swallowing, and am developing hoarseness and a slight sore throat every morning when I wake up that goes away with water. It seems to me that most people in the posts I've read here have caught their thyroid cancer early, so the survival rate is quite good. Has anyone had papillary or follicular cancer that had spread to distant sites and is now doing well? I have no reason to believe I would have cancer that has spread to distant sites, but the fact that it's been 2 years since my atypical biopsy result does scare me and I was just wondering. I will be seeing my endo and getting another ultrasound/biopsy soon. Thanks!




What stage are you and wondering why you have put this off? Gratefully, I have not had cancer so that is not a field of expertise for me.

However, sad to report, many here have. The good news is that they are all doing well but I do believe that we have a couple who have metathesis.

Now tell us, why no surgery because of low vitamin D?

Did you know that the body automatically down regulates D because it triggers antibodies in the person who has antibodies?

Vitamin D
http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php


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## onbrake (Jul 31, 2013)

My endo had indicated that my Vitamin D was not considered just low, but depleted. She said no surgeon would do surgery on me with depleted Vitamin D unless it was an emergency....due to fear of calcium levels afterwards and risk of damage to parathyroids, etc. Because lab results did not show cancer, we watched and waited.


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## Andros (Aug 26, 2009)

onbrake said:


> My endo had indicated that my Vitamin D was not considered just low, but depleted. She said no surgeon would do surgery on me with depleted Vitamin D unless it was an emergency....due to fear of calcium levels afterwards and risk of damage to parathyroids, etc. Because lab results did not show cancer, we watched and waited.


Have you ever asked the surgeon what he or she thinks about this? Most patients just take calcium after the surgery if the calcium is depleted.

For some reason, this does not make sense to me.

Did you read the link?


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## joplin1975 (Jul 21, 2011)

Agreed -- I think you should get a surgical consult ASAP. My surgeon and endo never tested nor looked at my Vit. D. Calcium post-op can be a pain to regulate, but there are very easy solutions even in the worst cases (IV infusion). I'm not buying the "only in an emergency" line.

To answer your question directly, I did not have "distant" mets (I think most people consider ditant to be things like lungs, liver or pelvis), but my lymph nodes were found to be cancerous. My surgeon estimates the cancer had been growing for about 10 years.

To rule out distant mets, an RAIU scan is usually ordered.


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## onbrake (Jul 31, 2013)

OK, I'm going to go in ASAP for evaluation. To clarify, I have not yet been diagnosed with thyroid cancer; however, the large lymph nodes in my neck combined with my other symptoms and my atypical result a couple of years ago, does make me think it's more likely than not. I think it's unusual that I don't hear of many cases with distant metastasis, or maybe they just don't post on boards? I was just wondering if it's very common to have distant metastatis ... lungs, bone, liver, etc. Of course my reason for wanting to know is that typically when you are worried about having something, you want to know the worst case scenario and hear that even in that case, your prognosis is good.


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## onbrake (Jul 31, 2013)

Andros said:


> Have you ever asked the surgeon what he or she thinks about this? Most patients just take calcium after the surgery if the calcium is depleted.
> 
> For some reason, this does not make sense to me.
> 
> Did you read the link?


I did read the link, thank you for that. I have never spoken to or met with a surgeon. I will get a recommendation for a surgeon at my endo appointment that I will be making today and I will follow through with the surgeon as soon as possible.


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## joplin1975 (Jul 21, 2011)

No, it's very unusual to have distant mets. Very unusual. It usually occurs in older women, men, or with cancers that are more aggressive, e.g., tall cell variant, hurthle cell carcinoma, etc.

Most traditional/"classic" papillary cancers don't travel far beyond the nodes.


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## onbrake (Jul 31, 2013)

joplin1975 said:


> No, it's very unusual to have distant mets. Very unusual. It usually occurs in older women, men, or with cancers that are more aggressive, e.g., tall cell variant, hurthle cell carcinoma, etc.
> 
> Most traditional/"classic" papillary cancers don't travel far beyond the nodes.


OK ... thanks so much. I am 53 years old and female, so I don't know if that's "older women" or not, but I hope it's not. LOL Thanks again, I'll report back the findings after my doctor consults.


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## Andros (Aug 26, 2009)

onbrake said:


> I did read the link, thank you for that. I have never spoken to or met with a surgeon. I will get a recommendation for a surgeon at my endo appointment that I will be making today and I will follow through with the surgeon as soon as possible.


I know that we are all happy to hear that. No sense messing around with this any longer before it really does become too late.

There is only one you; take care of yourself and be proactive.


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## onbrake (Jul 31, 2013)

Andros said:


> I know that we are all happy to hear that. No sense messing around with this any longer before it really does become too late.
> 
> There is only one you; take care of yourself and be proactive.


Wow, how nice people are on this board! Thank you so much. I feel so much better just knowing there will be people to "talk" to no matter how it turns out. My endo couldn't see me until 8-25 to do a consult, ultrasound and FNA, so I made that appointment but also made one with her medical assistant on 8-8 ... I just want to get in there and get my concerns known and have someone see me. I will also get the surgeon referral that day, and will make an appointment for that. This way, I can get the ball rolling on everything before 8-25.


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## Andros (Aug 26, 2009)

onbrake said:


> OK ... thanks so much. I am 53 years old and female, so I don't know if that's "older women" or not, but I hope it's not. LOL Thanks again, I'll report back the findings after my doctor consults.


It's not; I would be very glad to be 53 again. In the 8th. decade here. LOL!


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## joplin1975 (Jul 21, 2011)

I certainly don't think 53 is remotely old*. That said, for the purposes of risk assessment and thyroid cancer, anyone older than 40 is watched much more closely than anyone under 40.

*I should have not used the term "older women"....can I blame it on a lack of caffeine?


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## onbrake (Jul 31, 2013)

joplin1975 said:


> I certainly don't think 53 is remotely old*. That said, for the purposes of risk assessment and thyroid cancer, anyone older than 40 is watched much more closely than anyone under 40.
> 
> *I should have not used the term "older women"....can I blame it on a lack of caffeine?


Oh, I'm not remotely offended, please don't think that!! Age is age. I just meant depending on your age, I wasn't sure if "old" meant MY age.

Thanks so much. I'm just so worried because I definitely have pains in my neck and sometimes pangs on my collar bone area and ... oddly, the whole area under my chin. I know there are lymph nodes there, so that must be what's causing the pain. I just wish my appointments were sooner. I hate thinking about it.


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## onbrake (Jul 31, 2013)

Andros said:


> It's not; I would be very glad to be 53 again. In the 8th. decade here. LOL!


Wow, that's awesome! I hope I make it to my 8th decade!!!

:hugs:


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## Lana (Sep 25, 2014)

Had my thyroid removed in 2012 due to Papillary thyroid cancer, had spread to neck muscle and had some lymph glands removed. Apparently had been there for some time. I have no insurance and have been unable to get annual check ups. Have in the last 2 months been experiencing symptoms of it's return. Been a roller coaster ride due to still no insurance (MNsure still in "limbo") and until I find the money to do the blood tests and ultrasound no one willling to help including charity care at Mayo. Even then, not guaranteed I will get the funding....you need a diagnosis first I guess. I know it's returned, but have to decide if I can wait out 5 months until I get eligible for Medicare. Anyone out there in the same boat. I think mine has metastisized, but where to?........


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## Octavia (Aug 1, 2011)

Lana, at the very least, you should have your thyroglobulin tested and compared to your previous results. Thyroglobulin, for many, is a reliable tumor marker after total thyroidectomy for thyroid cancer.

After your thyroid removal, did you have a whole body scan? And how about RAI treatment--did you receive that?


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