It might not be papillary thyca after all

My husband is now in the hospital. He was admitted Monday because his lymph nodes on his neck swell up so much, they are worried they are cut of air supply.

I just got off the phone with our oncologist and he said he got the results back from the WBS they did last Friday - and that it did not light up as much as they should have, which makes him think it's not papillay after all. It's not reacting the way it should. My husband has lung nodules but they did a lung biopsy and the results said it's papillary. So I am very very confused. I asked the onco weeks ago if it's lung cancer and he said no, 100% not. So now I wonder... could they have made a mistake? I am frightened.

They are doing a biopsy on the swollen lymphnodes (they are referring to them as mass/tumor...) today but won't have results until probably Friday. We were hoping for papillary ThyCa, it being so easy to treat. Now it doesn't look like it's papillary after all. Again, I am freaking out.

We won't be doing a I-131 therapy after all, they might have to do a different approach. I feel like we're back to square one, not sure what we're dealing with.

On the other hand... I've lost so many tears over this and with a newborn and a 2 year old for months now we're trying to figure out what's going on exactly. Whatever it is... we will deal with it. We will either fight it, live with it, or make the best of what we can. I don't want my children to grow up without their dad, I am hoping that we have many many more years together and happy times. Time is so precious and it is not worth it being miserable all the time... worrying.

Edited January 16, 2013 at 2:17 pm

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Does your husband have an endocrinologist or thyroid specialist? I would think since he is in the hospital, it would be easy to get a referral. I'm sorry you are going through so much confusion and uncertainty and hope for a good outcome for your husband. I think making a diagnosis is often difficult. I think it's odd that the labs came back papillary and they are saying it's not but I am new to this and hope someone else can help you more.

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Well this is very confusing! And I'm sorry for that!

How has your husband been monitored over the years? What is his tg blood levels? I would think they would use this along side his WBS etc to make a determination. It could be that over the years his thyroid cancer is not so well differentiated now and will not show up well on a WBS. A combined PET scan with CT scan (possibly no contrast) might be more appropriate.

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Could the WBS results just mean that he's non-avid (and it could still be papillary)? Meaning that the cancer does not take up the iodine to be seen on the scan. An alternative treatment is alcohol ablation and I heard it works well for lymph node involvement (resulting from Thyca). All my knowledge comes from reading the experiences of the wonderful board on Inspire so I really can't speak from personal experience but wanted to give you something to think about and maybe ask the doctor. Keeping you and your husband in my prayers for a quick recovery.

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Good advice and info from Las4 and Karynecpa1. I'm praying for your husband and for you. I hope you get answers and a treatment plan soon. (((Hugs)))

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they are now saying its a vey aggressive fom of t cancer and they ae starting radiation tomorrow... chemo for the lung. we e frightened and still waiting fo more results from the biopsy which they did today....

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Oh wow. I am sorry to hear that. Keep us posted on his situation and I hope for healing and a smooth treatment period.

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Thinking of you! Stay positive! Will pray for healing and for peace and comfort for you all.

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Thank you... we're not sure what this all means all we're hearing is.. it's aggressive... and serious. We did not get a prognosis on how much longer he has or if it's really that serious, but they want him to be in the hospital for quicker treatment.

So what we know right now is that the cancer is too agressive, I-131 won't work. They will do chemo for the nodules on the lungs, but that's secondary concern. Right now they are more worried about the growing tumor in the neck. It's growing very quickly. They will radiate that and see if they can do a surgery on that. I guess we won't have any more info until Monday when we get the results from the biopsy back.

We're in serious need for prayers and a miracle right now :(

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Thinking and praying for your family! Try to stay positive as possible! Please keep us posted on his progress. Hugs to your family!

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Thanks.. that's what we need. I am just preparing myself for the worst though. It's so hard with two little kids and I don't even want to think of the worst. That he only has months to live? I am so worried and scared. Right now I would do anything to help. I am just praying whatever it is he won't have to suffer. Or if he suffers that he will stay with us at least. I don't know. I am confused and scared and the waiting is terrible. No answers yet. All we know is it's bad and aggressive but nobody is able to tell us what we're dealing with and what to expect. He will start radiation tomorrow morning, and go in every single day. No answers yet as to how long. I guess we just have to do this and see if radiation helps. I am praying it will. I don't know if there are any other options if this won't work.

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I will be praying for you. Please keep us updated.

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Keeping you and your family in my thoughts and prayers!

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will pray for all of you

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Sending many many prayers your way! God is with you and your husband in every moment. I am sorry you have to endure this and with such little babies! This group is great for support. Please come and vent and ask questions! We are here for you!

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Praying for you and your husband .

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Sending lots of prayers, hugs and well wishes for you, your husband and your babies along with the rest of your family!

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Can someone help with info on anaplastic thyroid support sites?

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I hope that once they are able to take this out the pathology is more favourable! My thoughts and prayers are with you.

Yahoo has a group on anaplastic thyroid cancer, but this is a pretty rare form and usually strikes much older men.

Hopefully it is a variant of papillary or follicular and can be more easily treated.

I hope you get some good news shortly!

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My heart goes out to your family. Waiting on pathology is so hard! Try to stay positive, (easy to say!) You have found a good place with the kindness of the people who follow this blog.

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My prayers for you center around a better diagnosis and wise super aggressive docs.
I am shocked it could be so agressive at his age. Please let us know whats going on.
I am so sorry, you are going though this.

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