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I saw my new Rad Onc yesterday, and really liked her. She seems pretty proactive. We talked about everything, including my impending gallbladder surgery (full of stones). All was well, and I was on my way out the door, when I asked her to see if my neck US results were in. She had to call over to the hospital where it was done.

Anyway, next thing I know her staff were running around. Doc came out to see me in the waiting room. Turns out, the cancer is back.,

They found a heterogenous mass with vascularity measuring 2.7 x2.4 cm in my Suprclavicular notch. Not a node, a tumor :(

Guess that finally convinced them that I indeed have cancer. That mass wasn't there in Oct at the last US, and it's likely the tissue that was picked up on the WBS in Dec.
The last line on the US report says " Findings concerning for metastatic focus. Further investigation strongly recommended". Guess that doesn't leave room for them to blow it off this time.
I'm now waiting for an FNA and surgical consult. Still no word about RAI though.
 

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Oy...
I'm glad you are finally getting treatment, but I'm sorry for the news. :(
 

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Discussion Starter · #3 ·
Thanks Joplin. I wasn't too shocked actually, because I was watching while they scanned the area. The spot they focused on hurt, and lit up like a xmas tree on Doppler. I've seen that enough to know what it meant.

She also had me go have 18 different blood tests done (7 vials). Because of the gallbladder, they're checking all my liver/kidney/cbc etc. I'm thinking she's worried it's tumors and not stones. They look the same on US.
 

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I am so sorry to hear your news of a tumor. I am new to the site here and am just learning about the things most here talk about with such good understanding. I pray you will be able to get the right kind of help quickly and be freed of any further tumors in the future.
 

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Abcdefg said:
I saw my new Rad Onc yesterday, and really liked her. She seems pretty proactive. We talked about everything, including my impending gallbladder surgery (full of stones). All was well, and I was on my way out the door, when I asked her to see if my neck US results were in. She had to call over to the hospital where it was done.

Anyway, next thing I know her staff were running around. Doc came out to see me in the waiting room. Turns out, the cancer is back.,

They found a heterogenous mass with vascularity measuring 2.7 x2.4 cm in my Suprclavicular notch. Not a node, a tumor :(

Guess that finally convinced them that I indeed have cancer. That mass wasn't there in Oct at the last US, and it's likely the tissue that was picked up on the WBS in Dec.
The last line on the US report says " Findings concerning for metastatic focus. Further investigation strongly recommended". Guess that doesn't leave room for them to blow it off this time.
I'm now waiting for an FNA and surgical consult. Still no word about RAI though.
I do believe that even though we did not want to know it, a lot of us did because of the high Thyroglobulin. Sadly.

But, the good news is they now know it and it will be out soon; I hope.

Any word on when surgery will be scheduled?

How are "you" holding up? Do you have friends and family as a good support team? You have been through heck and back.

 

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FINALLY!!!!! While I'm sorry to hear that this is more definitive now, I'm certainly glad you're finally getting the care you deserve.

Keep us posted. :hugs:
 

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This news is like a double edged sword. While I'm glad they finally got their acts together and are treating you the way you should have been cared for all along, I'm really sorry they found a new tumor.

How are you holding up? Remember, that all of us here are thinking and praying for you.
 

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Discussion Starter · #8 ·
I'm ok. Thanks for asking. Weirdly, I'm relieved. I finally know why I'm still super fatigued and why my test results have been sky high. Happy I have a new Rad Onc (my gp got involved and kicked the old one to the curb). His last comment to me (when I said I was in great discomfort with stomach pain and vomiting), was "well I'll put in a referral to a psychiatrist for your tummy ache" *eyeroll*, ****ed me and GP off royally. I had an US on my organs 3 days later which showed gallbladder was littered with stones. 'Splains the pain eh? What an idiot that guy was.

The new doctor had a different criteria on blood levels too. Where he was happy with TSH of 1, she wants me suppressed to <.2. I'm at .94 right now, so she upped me to 175 mcgs, and will add in Cytomel next month if my Free T4 doesn't come up (16 in a range of 23).

I don't feel sad though- which is odd, but I think I'm basically numb to everything now.

No word on surgery yet. I have to wait until after the FNA (which isn't scheduled yet either) before being referred back to the surgeon. I'm hoping there's some way they can know out both surgeries at once though.
 

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Bless your heart! I've just waited the longest week of my life for an endoscope ultrasound biopsy of my pancreas.

Maybe I'm the only one but for over three years I've found that virtually nothing that I'm told after any ultrasound proves to be true! I had ultrasounds on my thyroid every 6 months for over two years yet the surgeon said he was shocked at the huge size of my thyroid and that it was "filled" with cysts and nodules. I've got every report ever assembled after each of those ultrasound exams and not one mentions anything about the size of my thyroid or anything else other than old nodules growing and new ones appearing.

Then, last summer, I was told after ultrasound that I had "fatty liver". That, according to a later CT scan and endoscope with attached ultrasound simply isn't true.

Ultrasound had indicated my pancreas was fine - then the latest endoscope/ultrasound indicated it was deformed from birth.

It is painfully slow having to wait for answers - it was over 24 hours ago that I finally found out my pancreas is O.K. and it's just now sinking in.
 
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Discussion Starter · #10 ·
Biopsy scheduled for Monday. Could have been tomorrow, but I can't get out of my work shift.
 

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Best wishes!
 

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It looks like we are on similar timelines. I was diagnosed with PTC (not follicular though) in May of 2012 and they found a new tumor in Oct of 2012. Where is your new tumor located? Do you have Hashi's too? I would suggest a second opinion if possible. MD Anderson in Houston is just awesome.
 

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Good luck, Abcdefg! I'll be thinking of you!
 

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Discussion Starter · #14 ·
Thanks ladies!

susie: the second tumor is somewhere above my left clavicle. It's not visible, was only seen on US. From all the reading I've done, it's a bad place to have one :(. And no, no Hashi's.

Likely I'll need another surgery with dissection, and EBR.
 

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Abcdefg said:
Biopsy scheduled for Monday. Could have been tomorrow, but I can't get out of my work shift.
As you know; we are "all" very very concerned for and about you! Please know that we are holding you dear in our hearts and prayers.

Good luck Monday!

It is quite common for thyroid patients to end up with gallstones, kidney stones, salivary stones, tonsil stones etc..

Because the motility of our systems is severely impeded by this disease. Nothing really works as it should.

 

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Do you know how many clips they used in the original surgery? Evidently my first surgeon was clip happy which would make my clavical area almost impossible to get to. Did they do the CT with iodine contrast? The Dr up here missed the lymph, that my second opinion found because she only did sonos.
 

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Discussion Starter · #17 ·
No, the CT was done with I123 the day after my WBS. I wasn't given any regular contrast. I discussed with the new Onc the possibility that the tumors are becoming non-avid-she agreed it could be happening.
Clips? wut? lol. Not a clue about that.

I'm wondering if they'll order a PET next.
 

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I would hope so but I have heard they are really hard to come by in Canada.
 

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Discussion Starter · #19 ·
I forgot to mention that I've got 2 new lumps forming on my throat-north of where the thyroid was. I've felt them enlarge over the last week, and they're now visible when I bend my head back. Do you think it could be lymphs or nodules? And is it possible for them to come up that fast? I'm hoping they'll look and/or biopsy them tomorrow, but unless the Dr added it to the order, I doubt it.
 

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Abcdefg...if those turn out to be cancerous, I think you should have your pathology re-evaluated to see if you have a more aggressive form of thyroid cancer such as a tall cell variant or other forms.
 
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