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Old 05-09-2005, 09:28 PM   #1
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wxKathy2 HB User
oncologist/mass in chest CT scan/thyroid nodules

Hello All,
I wanted to share my experience in case it might help anyone else and also to learn from those kind souls here who have travelled this path before me.

Been treated for thyroid nodules for 1.5 years and it just keeps making more. The endo never has done a biopsy or an uptake scan. In Jan I started having choking feelings and a lump in the throat feeling. He did order a CT of the neck and chest. No one seems very concerned about the thyroid nodules, but a mass did appear in the chest CT - anterior mediastinal mass - thymoma, lymphoma, ectopic thyroid tissue or residual thymus tissue. Because of this, my endo has referred me to an oncologist who I saw today. This could be the best thing that has happened to me - he was really wonderful - listened to me fully and was very thorough. He suspects thyroid tissue, so this would be the better outcome of the above possibilities. I hope he is right. He is finally doing tests, that from reading the boards, I thought my endo might have done a long time ago. I will have an MRI on Wed. Depending on that result, I will then have an uptake scan (after the CT iodine is gone). Depending on that result, I may have a biopsy done with a sternoscopy (sp?). I finally feel like I have a doctor that will get to the bottom of this. I have suffered for 3 years with hypo symptoms and my job is in jeopardy. I do so hope this oncologist can find a solution for me. The endo's method was to manage the nodules/symtoms with synthroid - he told me it could take decades! my job won't last that long! and I would wish for better quality of life - than worrying why I keep getting more nodules and whether they are cancer or not - (never been biopsied).
Anyway, I recommend the oncologist route - even though it's very scary going to the "cancer care" centers, I am hopeful! And people really are very kind there.

All my best wishes to everyone here - what a wonderful supportive group!!
Kathy

 
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Old 05-09-2005, 11:34 PM   #2
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Re: oncologist/mass in chest CT scan/thyroid nodules

Quote:
Originally Posted by wxKathy2
Hello All,
I wanted to share my experience in case it might help anyone else and also to learn from those kind souls here who have travelled this path before me.

Been treated for thyroid nodules for 1.5 years and it just keeps making more. The endo never has done a biopsy or an uptake scan. In Jan I started having choking feelings and a lump in the throat feeling. He did order a CT of the neck and chest. No one seems very concerned about the thyroid nodules, but a mass did appear in the chest CT - anterior mediastinal mass - thymoma, lymphoma, ectopic thyroid tissue or residual thymus tissue. Because of this, my endo has referred me to an oncologist who I saw today. This could be the best thing that has happened to me - he was really wonderful - listened to me fully and was very thorough. He suspects thyroid tissue, so this would be the better outcome of the above possibilities. I hope he is right. He is finally doing tests, that from reading the boards, I thought my endo might have done a long time ago. I will have an MRI on Wed. Depending on that result, I will then have an uptake scan (after the CT iodine is gone). Depending on that result, I may have a biopsy done with a sternoscopy (sp?). I finally feel like I have a doctor that will get to the bottom of this. I have suffered for 3 years with hypo symptoms and my job is in jeopardy. I do so hope this oncologist can find a solution for me. The endo's method was to manage the nodules/symtoms with synthroid - he told me it could take decades! my job won't last that long! and I would wish for better quality of life - than worrying why I keep getting more nodules and whether they are cancer or not - (never been biopsied).
Anyway, I recommend the oncologist route - even though it's very scary going to the "cancer care" centers, I am hopeful! And people really are very kind there.

All my best wishes to everyone here - what a wonderful supportive group!!
Kathy
My prayers are with you and may everything will be A okay : )

 
Old 05-10-2005, 05:12 AM   #3
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diatron HB User
Re: oncologist/mass in chest CT scan/thyroid nodules

Thank you for posting your experiences. As a community we all learn from each other and you have added to my store of knowledge. I hope i never have to use it, but now I am aware of other possibilities.

I wish you health and am glad you have found a doctor that will get you the treatment you need to feel great again.

 
Old 05-10-2005, 06:38 AM   #4
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Benzi HB User
Re: oncologist/mass in chest CT scan/thyroid nodules

Hi Kathy, I am so glad that you found a good Dr. that you like! Trust is so important. It sounds like we need to be praying for etopic thyroid tissue, hopefully they can tell with a scan which it is. Are they going to biopsy any of your neck nodules? Thanks for posting this early. I would have wondered all day what happened to you yesterday! Getting ready to go to the ENT now, will let everyone know if he thinks I need biopsy. The oncologist still recommends it because of lymph nodes in my neck. I did get a call from my oncologist and my Ct's show nothing beyond my neck! This is great news for me, now if they can just figure out my neck, I will be happy. Kathy are you going to go on a low iodine diet for your scan? I may be able to help you with that, so let me know. You will be in my prayers.
Best wishes
benzi

 
Old 05-10-2005, 08:06 AM   #5
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Re: oncologist/mass in chest CT scan/thyroid nodules

Kathy, I'm glad to hear you have a good Dr.! Best wishes with all of your testing. Please keep us posted on how everything goes. It sounds like your Dr. is on the right track!
You're in my prayers.
Hilery

Benzi, I'm glad to hear your CT's didn't show anything beyond your neck area! That's great news! I've been wondering how everything went. Let us know how your ENT visit goes.

Last edited by hilery79; 05-10-2005 at 08:13 AM.

 
Old 05-10-2005, 10:04 AM   #6
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Re: oncologist/mass in chest CT scan/thyroid nodules

Benzi! Wonderful news about the CT not showing anything beyond your neck! I am so happy for you!

There is no plan yet to biopsy the neck nodules - but I think I will push for it....yes we are hoping for ectopic thyroid tissue -

About the low iodine and how to prepare for the uptake scan I am all ears - never had one before....thank you!

Thanks everyone for all your prayers! You are in mine too!

Kathy

 
Old 05-11-2005, 07:36 AM   #7
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Benzi HB User
Re: oncologist/mass in chest CT scan/thyroid nodules

I was told and I think hilery was too (correct me if I am wrong Hil) that you will get a better scan if you go on a low iodine diet for 2 weeks prior to the scan. This is something I would ask my Dr. about (my endo forgot to tell me) I did go on the diet on others advice from this board and my scans had good uptake. The theory is to starve the thyroid cells of iodine and then when you get the iodine from the scan it will rush to those thyroid cells and be taken up quickly and allow the Radiologist to fully visualize any thyroid tissue. My very first uptake scan was lousy because no one told me about the low iodine diet (LID) I would ask the Doc what he/she thinks and go from there. Its not too hard of a diet to follow and I have written to Pepsi and coke and lays and none of their products except products that contain sea salt have iodine. That made me a happy camper. The most important thing was to go and buy some uniodised salt and change out the salt shakers the next seemed to be no fast food or fish at all. I think if just a few of those things were followed then a test may come back a lot better!

 
Old 05-11-2005, 11:19 AM   #8
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wxKathy2 HB User
Re: oncologist/mass in chest CT scan/thyroid nodules

Hi All,
Today was pretty disappointing - I did get the MRI (and had a nice panic attack in there), but the doc was short with me and did have anything to say about the MRI. I guess they have good days and bad days - so now he wants to wait 3 months and see if it grows! What do they think we do for three months besides worry!!
Anyway, no uptake scan either - and no biopsy of thyroid nodules - just the wait and see! Argh! I feel at square one and still no answer about the choking feeling....

Am considering finding a surgeon and just taking this thyroid out - that would be one less think to worry about - then I would just have the anterior mediastinal mass - which is it still being called!!

Thank you guys again for all of your support!! What a journey! At least I am blessed with a supportive husband!

 
Old 05-12-2005, 07:30 AM   #9
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Benzi HB User
Re: oncologist/mass in chest CT scan/thyroid nodules

Kathy, Can you get another opinion? The wait and see attitude is not for everyone. I know that I, for one am not one to wait and see. I think because of the choking sensation they would want to at least do a biopsy of the thyroid nodules or at least a uptake scan.

 
Old 05-12-2005, 08:31 AM   #10
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Re: oncologist/mass in chest CT scan/thyroid nodules

Kathy,
I can't believe he wouldn't even do an uptake scan! I would definitely get another opinion....especially when you're experiencing the choking sensation. I wouldn't want to wait around for 3 months either! Maybe you could even ask your PCP to order the uptake scan. Atleast with that scan you would know a little bit more about the nodules...hot, cold, etc. I would think it would give your Dr. a better idea as to whether or not a biopsy should be done.

 
Old 05-12-2005, 12:02 PM   #11
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wxKathy2 HB User
Re: oncologist/mass in chest CT scan/thyroid nodules

Thanks Benzi and Hilery!
Yes - I was so encouraged monday and then just felt dumped off the cliff on wednesday by the same doc! I don't get it....

I am going to see another oncologist - we are scheduling the appt today - I have heard that she "listens"!! That would be so wonderful to be heard by a doctor! Yeah - I'm not too good at wait and see - I am a high anxiety person and if all this thyroid stuff doesn't ruin my health I'm afraid the stress will!

Thanks for your suggestions and support!! It means the world!

What did you decide about the biopsy?

Kathy

 
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