Scared "What if lung mets"

Hi everyone,

I've posted recently about tall cell diagnosis from pathology report and Tg of 3.7 measured almost 3 months after RAI. Since my last appointment with endo I've been worrying so much about my situation. After surgery and RAI I felt like I owned what I knew and was feeling good. The wind was definitely knocked out of my sails.

The last 3 weeks have been tough. The WBS showed uptake in front of neck. No uptake on sides of neck or anywhere else in body (a little in my salivary glands). Also before surgey (7 months ago) a CT scan with contrast showed 2- 2mm nodules in my lower right lung, but they didn't think they were related. Just told me they will keep an eye on them. The surgeon said the CT showed no evidence of chest disease in light of what they saw. They didn't light up on WBS.

I had 6 of 19 lymph nodes positive, 5 on right neck, 1 on left neck and 0 in anterior neck.

After my last appointment I started worrying a lot. My throat started to feel scratchy and now my chest feels heavy and consticted. I don't notice it all the time, just when I stop and have time to think about it.

I worry that I have lung mets. What if I have cancer that is non-avid in my lungs? Given I just stared to notice after my appointment I think that maybe I am making my chest tight with all the stress and worries.

I am back to being scared to death. Any words of wisdom??????

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Hi,
I know that anxiety can set in pretty fast and make a person almost hyperventilate and not know it! I was doing that awhile back when I messed up my estrogen. I'd feel breathless and then start thinking about my air, my breath, etc. Pretty soon, I was trying to take deep breaths that were not normal! I felt air hungry. It was nuts. My friend, who is a nurse, told me to breathe into my hands a few minutes and it really worked.

I had thyroid cancer when I was 25 and I am now 54. I had papillary cancer. I had five nodes positive and my entire thyroid removed. I had 100mc of RAI and then a few 30 mc to get rid of tiny residual in the thyroid bed. I really worried a lot and suspected all sorts of things, too. I found a lump in my groin and went to the doctor ASAP. But here I am after all these years!

Sometimes CT scans find odd ball stuff that is not important. My husband had colon cancer, and upon having a CT, they found spots on his liver. We were freaked out. But a PET scan showed nothing and when he had his surgery, the liver was fine.

It's just scary to adjust to the word Cancer, and it is scary to have tests. I still hate follow up tests and wish I could forget I ever had it. It does not haunt me at all and most of the time, I do forget I ever had thyroid cancer. But now, I am waiting for another thyroglobulin test and it reminds me again.

Try to be at peace. It's a treatable cancer. I know it's hard to adjust to all the doctor appts. and tests. Just gets scary!
I had tons of tumors on my thyroid and actually found the cancer due to a large node under my ear. I have a friend who had it also, about the same time as me, and she is still alive and well, too. Her thyroglobulin levels were elevated just a few years ago and they retreated her. But she is still fine!

There are LOTS of us old timers who had the same cancer as you, and with lymph nodes too!

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I have had lung nodules show up on every CT scan for 10+ years but unless they light up on a PET or WBS they are likely non=cancerous. Thyca tends to follow the lymphatic system and in my case through the thoracic cavity into the liver. But to compare tg levels were 600 to 4000 so it is very unlikely your level indicates serious metastasis. Moreover your type is afid so that should be reassuring when a WBS is negative or at least limited. Hurthle, medullary, and anaplastic are the non-avid forms. Just keep the TSH very low and continue to follow the tg and best wishes.

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G78, Maybe I misunderstood. I didn't notice "tall cell" in your post. I just looked and saw that you were in the papillary and folicular area where your name appeared. I am sort of new to this forum, so I am still figuring out where to find stuff! I had papillary, but know nothing about tall cell. I do understand the fear thing, though. Hang in there. I need to pay closer attention to details!!

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I have lung mets that have probably been there from diagnosis, but they seem to be mostly stable at this time. If you think you have lung mets, a PET/CT is your best diagnostic. Mine never show on WBS as I'm non-avid now...

Be Strong and Stay Positive!

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Hi Justgeo1,
What type of thyroid cancer did you have? I am sort of new to this forum, but not new to thyroid cancer. I do see the term "non-avid" from time to time, but don't know what that is? I am in Spokane! Not that far from you! What do they do for lung mets? Just curious. I have not been tuned in on Thyroid cancer for a long time since mine was so long ago. But recently, I decided I should maybe encourage others since I had my diagnosis of papillary cancer 27 years ago.

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Hormonal Hilda, Tall cell variant is a more aggressive variant of papillary thyroid cancer. My pathology report said primary tumor was classical; tall cell.

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I was diagnosed with plain old, Papillary, with no variants. I was diagnosed with stage 4c due to the mets. I've had my TT and initial RAI in 2009 and had a second RAI in 2010 followed by a bilateral neck dissection. I get a CT scan of my chest about every 3 months...

Be Strong and Stay Positive!

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Wow. Plain old papillary! The RAI didn't fix it? Did you have a lot of lymph nodes that were positive?

It's amazing how the thyroid cancer sneaks up on a person. My tumors were on the backside of my thyroid so no one felt them and for some reason, they did not show up on a scan. The only thing that alerted me was a large lymph node under my ear. Then, they biopsied it and the pathologist got the wrong kind of cancer---adenocarcinoma! I went through all sorts of crazy stuff before they took the node out and found out it was thyroid cancer!!! Then it was TT and RAI. That was in 1985. Do they still make people go off thyroid before treating them? Or do they just do Thyrogen. I am really behind the times since it was so long ago and I have not stayed current.

Best wishes to you and thanks for replying!

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I went off meds for both of my RAI sessions. I've had buckets full of cancerous lymph nodes taken out and none of them reacted to the second RAI except to become very swollen... I'm sure I was non-avid before my second RAI... My endo noticed a lump on my first visit... I had to switch endo's due to them changing where they worked... New endo is great and very proactive! :)

Be Strong and Stay Positive!

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Hi Justgeo1,
Darn....they still make people go off the thyroid to treat! That's disappointing! The only good thing that came of that was realizing that I needed cytomel to feel good. I was on it, with regular thyroid meds, for years. Then I monkeyed with my estrogen and got heart palpitations, but my cytomel was blamed, so they yanked it. It was the estrogen issue, not the thyroid. I have been cold ever since. It's very disappointing that the RAI did not work on round two. Glad you have a good endo, and you are also near the University of Washington, which would be a huge asset, too.

Best wishes to you and the fight. Dang thyroids! My husband also had thyroid cancer with an enormous goiter which was under his beard! No one noticed it, including me. He had just a tiny few spots in the thyroid. We have some bad genes! No kids!

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Thanks for the replies. I have called my endo and I will push to have a rear scan soon. She said she didn't want to do a CT as it would interfere with my treatment. Maybe I can suggest a PET scan. Are MRIs good for detecting metastasis of thyca? I am hoping that I am getting cold- first time hoping to be sick, but it would make me feel better about the constriction I feel in my lungs.

Best to everyone.

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That's very reassuring because u hear cancer and no matter what you freak out thanks for your input it diffidently helped me to just relax because its so easy to just freak your self out !!! Oxxox

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Endo is ordering CT scan, said she never received original CT that was done. I am 3 months post RAI, I hope this doesn't interfere with future treatments. Maybe just push back future RAI until iodine gets out of my system?

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Hi G78,
I found that information about the tall cell variety of papillary! I had no idea. I knew about the follicular variant, but did not realize there were other types! Do they have to use iodine contrast on the CT? IT's been awhile since i had a CT, but I know they use contrast on some and some they don't. I hope you have no mets and all is fine. It's just so unsettling to wait for tests and also the results. I figured you had anxiety and it was making you feel breathless. I have been there and done that! Hope I didn't offend you. I have to brush up on some things. I have been sort of out of the thyroid cancer information loop for awhile. I had sort of put it out of my head. I was injured and was on hydrocodone for awhile for the pain and then had to taper off of it. IT has been extremely hard and mean. I ache a lot yet and just don't feel right on some days. What a horrible drug. I got involved in a forum where people were supposed to help other people who were dealing with the same issues, but the forum was brutally mean with bullies, etc. I decided it was not for me, and I moved over to help be supportive of people with thyroid cancer, seeing how I am an old bag and have survived many years! This is a much kinder forum. But I need to learn what's new in the treatments, etc.

When I had thyroid cancer, there was no internet. I was at the mercy of whatever I could find in a book, which wasn't much. It's wonderful to have other people for support and knowledge! Have a good day and I pray that you be free of mets.

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HormonalHilda - Thank you for coming here with your encouraging words. When I was diagnosed earlier this year, the ONLY thing I craved was good news from survivors. I was lost, confused, discouraged, in the fetal position, etc. I barely knew I had a thyroid, and shocked to have cancer. I searched and searched the internet for good news.

Naturally, many people here on the ThyCa site are struggling with issues and seeking answers, so it can be scary for us who are starting out. Now I am 4 months from surgery and 2 months from RAI (also tall cell papillary) and feeling great mostly, though living in fear, too. I really value the importance of people like you on here to give us hope!

I think you will find this is a lovely group of very helpful people, overall. Welcome!

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Thanks Zheni,
I am so glad that I could lift your spirits! I wasted my time on a drug withdrawal site recently. I took hydrocodone for an injury and had to taper off it. It was a nightmare. I had no idea that it was so horrible. I am two months off the drug and still ache because it takes a long time to get your own endorphins again. It was worse than thyroid cancer!!! And the people on the forum were so mean!!!! This is a much better use of my time.

I just saw my endo to review the ultrasound. There is one node that's odd, but really tiny. We are waiting on the thyroglobulin test to come back. I have always had really good tests all 27 years. I hope this one is good, too. He said if the thyroglobulin level was elevated, we'd probably just keep an eye on it! They don't get all that aggressive these days---especially in someone like me, who has had no growth in 27 years. He did tell me that they are not using the great big doses anymore!!! They do treat a lot more with 30 mci doses. He said there is a 1% increase in leukemias in the bigger doses! 1% is sooo small! That's good news to those with the bigger doses like me. But even at that, they don't want to see even 1%! Things are changing from when I went under the knife and also got nuked!!!

I understand the fear. It makes us all feel vulnerable. Before, cancer happened to someone else, and now, we know we are vulnerable to it, too, but by the Grace of God, we got the easy to treat type and the death rate for our cancer is low.

You made my day. I am SO glad I could give you hope, Zheni! 27 years and my case was pretty advanced! Here I am. And unless a bus hits you all, you will be at 27 years too! We forget about the other risks in life!!! The dreaded bus!

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Going for CT scan tomorrow of neck and chest. Praying that everything is clear.

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Best wishes to you all. Xoxo

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I was diagnosed with papillary thyroid cancer in 2009 by accident. I was having my chest X-ray and noticed dark shadows on my neck. So my dr had it investigated and found out P. thyroid cancer. I had total thyroidectomy and twice of RAI. I was ok for 3 yrs then my
thyroglobulin started to increase slowly. Then I was sent for lung biopsy to clarify what kind of cancer. Anyway I have 3 kinds of cancer
uterine / breast / thyroid. After lung biopsy it was confirmed that it was thyroid metastasized to my lung. I feel great right now. No symptoms.
Sometimes you need to be aggressive with regards to your treatment or whatever is going on your body. Good luck

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Doctor is calling me to go over CT scan results later today. Praying all will be well....

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