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Cancer: Thyroid Message Board
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Old 08-26-2012, 04:36 PM   #1
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I AM WORRIED

I had a Total thyroidectomy October 2011. With many lymph node metastasis and aggressive in the neck disease.
So far i had 3 RAI session .
One month after my surgery and before my First RAI my TG 22 and post scan showed uptake on neck bed area and the doctor said this is normal
Before Second RAI TG 24 and post scan showed no uptake anywhere .One month afterwards and with surprised TG i had a clear PET/CT scan . Does this mean the PET/CT was not accurate ?
Before third Rai TG went to 17 also no uptake in RAI post scans.
I made a reoperative lymph node surgery with only 3 tiny microscopic disease found.
Currently my TG is 13 .

So is it possible that my PET/CT was not accurate ? coz when i had it i was't off meds ? Also i was not given thyrogen injection . I AM WORRIED NOW

 
Old 08-27-2012, 06:56 AM   #2
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Re: The ever continuing thyroid cancer saga...HELLLLP

If you are worried, I should be worried about myself---which I am not (most of the time). MyTG was 13 post RAI, until I had it done at a different lab, so now it is 5. I don't believe it---but my new Endo is happy. A PET usually will NOT show pap cancer. It shows ACTIVE cancer. If you had a thyrogen shot before the PET, you would have had a better chance of it showing, because the Thyrogen gets us unsuppressed, thus activating the cancer. A PET will show undifferentiated thyroid cancer---the more dangerous kind.

I have done a LOT of research in the past 6 years; attending a conference and picking the brains of the best of the best there. I bought a textbook for medical students! And, I have read a LOT of current research. Actually, the major cancer centers would not have given you all those rai's, because they really don't help, except in certain situations, like cancer left in the thyroid bed or lungs. It's not good at eradicating microscopic cancer, which is what you and I have. If it was more than microscopic, our TG would be higher. There was a video I saw from Sloan where there was a chart that said if your TG is such and such, it is probably in a certain place. From that chart , ours is hiding in lymph nodes, most likely. Or, mediastinum. The point is, we can LIVE with microscopic cancer, which may not show again for 30 years. You are young, so you will need to be more vigilant. They don't give repeated RAI's for our type of TG, because that could mess us up with side effects. You are a good example---it went down, but it's still there.

 
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Old 08-27-2012, 08:02 AM   #3
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Re: The ever continuing thyroid cancer saga...HELLLLP

I made all my tests in one lab as they change from a lab to another & i wanted them to be as accurate as possible.
my re operative lymph gland surgery which found only microscopic disease removed all visible lymph node and did good clearing and found 3 microscopic disease in 3 lymph glands with largest being 1 mm. There are no visible lymph glands in me anymore !
however with PET/CT scan ( without the injection ) they found one nodule in my upper right lobe ( less than one cm ) in CT and with the PET it did not light up or had any significance. My worry is that as i did not take thyrogen injection. Maybe this is the place of the disease in my lung in the upper right lobe and doctor has messed it .

What is your opinion . What should i do ? I'm really upset and for the past 2-3 days i can't stop crying . My wedding is soon and honestly I'm thinking of canceling the whole thing up i don't want to start a family while i am in this condition

Last edited by mod85; 08-27-2012 at 11:48 AM.

 
Old 08-27-2012, 11:45 AM   #4
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Re: The ever continuing thyroid cancer saga...HELLLLP

I wish I could make you feel better about this. Roughly 1/3 of us with thyroid cancer will have TG where the source can't be found. It does sound like that small nodule is the source of yours, if it lit up. You are NOT going to die from this. It is a pain to live like this, but you will live a long life---you will just have to go through this testing every so often. That small lit up nodule is no big deal. I am willing to bet your Doctor says the same thing. I know you want it to be gone and to be cured, but that isn't likely to happen. Well, maybe if that nodule is removed, but there are risks with surgeries, too. You CAN live a long life. Get married---don't even THINK about cancelling it.

 
Old 08-27-2012, 01:50 PM   #5
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Re: The ever continuing thyroid cancer saga...HELLLLP

Quote:
Originally Posted by Linda1652 View Post
I wish I could make you feel better about this. Roughly 1/3 of us with thyroid cancer will have TG where the source can't be found. It does sound like that small nodule is the source of yours, if it lit up. You are NOT going to die from this. It is a pain to live like this, but you will live a long life---you will just have to go through this testing every so often. That small lit up nodule is no big deal. I am willing to bet your Doctor says the same thing. I know you want it to be gone and to be cured, but that isn't likely to happen. Well, maybe if that nodule is removed, but there are risks with surgeries, too. You CAN live a long life. Get married---don't even THINK about cancelling it.
The nodule did not lit up but that was without injection.

what the difference between us and people who got cured ? why are we different ? why other people with 100 TG for example get cured while us we don't ?

 
Old 08-27-2012, 09:17 PM   #6
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Re: I AM WORRIED

Also if this nodule is the source I am worried it got out of control . Because be4 my second RAI my TG was 24.2 then I took RAI at june 2011 . Then I come off my meds on January 2012 in preparation for my third RAI made the blood test in Feb 2012 found my TG to be 17 then decided to go on re operative surgery made the surgery in March 2012 then I was given thyrogen injections to see the efftect of my surgery found out that my TG is a bit less . After this I was off my meds again for my RAI and I had it mid May 2012
The whole time between my second and third RAI is 11 months I'm afraid the thing on my lung is bigger or the situation is worse by now .
After all this stimulation because I was off my meds in Feb and May my tsh was very stimulated before my RAI at 237
I'm worried I'm off in a worst scenario because all of this

Last edited by godplease; 08-27-2012 at 09:24 PM.

 
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Old 08-28-2012, 06:55 AM   #7
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Re: I AM WORRIED

The problem with reading stuff on boards is that I read too quickly and miss stuff. Ok--I read back to the beginning to refresh myself.

Now I <don't at all believe> the nodule in your lung is causing the TG. The good news is, if it is making TG, it means it's not the bad type of cancer. What was the dose of your RAI? There is a doctor in Kentucky who's thing is to use something called "dosemetry" to determine the largest amount of RAI your body can handle, to eradicate that nodule. However, there are people out there who have had lung nodules for 30 years and they don't cause them any problems. I know you are scared, but I truly believe this is something you can live with. What does your Endo think you should do next, if anything? I <absolutely believe> you are not going to die from this. I have seen pictures of lung xrays where people's lungs were full of glowing nodules---not just one!!

Last edited by Administrator; 08-28-2012 at 08:45 PM.

 
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Old 08-28-2012, 02:30 PM   #8
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Re: I AM WORRIED

Dear Linda 1952 Why <are you> sure that my TG is caused by that lung nodule ? What made you think so ?

Last edited by Administrator; 08-28-2012 at 08:48 PM.

 
Old 08-28-2012, 03:17 PM   #9
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Re: I AM WORRIED

My first RAI was 3700 MBq and my second & third is 5500 MBq

He told me even there is no evidence of lung metastasis in me. That patient with stubborn or lung metastasis are treated with 5500 MBq in the UK. And the higher dosage is only for patients with bone metastasis.

I don't live in the US. and i have my treatment in the UK. But i go to UK for my treatment every 6 months only.

My doctor who is treating me is not an endo . Endo do not treat papillary thyroid cancer in the uk. There is a different type of doctors ( english is not my first language and i can't seem to remember the name ) He had treated many people & he is excellent and very supportive. He would help all people around him without asking for fees! and would take his duty so much more than his working hours. God bless him always.

I'm thinking of sending my papers for second opinion to MD Anderson. I spoke once with a thyroid cancer specialist there but it was very quick . I think i will send him my reports and see what he thinks and what is his recommendation. I will let you know what he thinks also dear

I want to make sure this lung nodule IS the cause. My UK doctor think it's highly unlikely. I will see what MD Anderson thinks about it too. I will also see if there is a test to MAKE SURE the lung is the cause and what are the options to cure it.

About dosemetry this is the first time i heard about it. WOW this is very helpful thank you so much.

Thank you so much Linda for all your help i really appreciate it. Thank you so much

 
Old 08-29-2012, 07:22 AM   #10
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Re: I AM WORRIED

MD Anderson is the "go to " place here in the US for thyroid cancer experts. I am sorry you are not here, because there are conferences for people like us who would like answers.

Back to the lung nodule. Your Doctor does not think it is thyroid cancer? I am confused, because it was glowing on your PET scan. What does he want you to do about the nodule?

What is your TG when you are on your medication. Is it "undectectable"? That is what mine is, even though it goes higher when I am off medication. That means the medication is keeping the thyroid cancer from growing. If my TG goes up while I am on medication, then I will be alarmed.

 
Old 08-29-2012, 08:09 AM   #11
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Re: I AM WORRIED

Quote:
Originally Posted by Linda1652 View Post
MD Anderson is the "go to " place here in the US for thyroid cancer experts. I am sorry you are not here, because there are conferences for people like us who would like answers.

Back to the lung nodule. Your Doctor does not think it is thyroid cancer? I am confused, because it was glowing on your PET scan. What does he want you to do about the nodule?

What is your TG when you are on your medication. Is it "undectectable"? That is what mine is, even though it goes higher when I am off medication. That means the medication is keeping the thyroid cancer from growing. If my TG goes up while I am on medication, then I will be alarmed.
The PET did not light the lung nodule . The nodule showed on CT. But it did not light up when they checked it by PET. but i was taking my thyroxine back then so i'm not sure how reliable this test was ?

Last November 2012 my TG while on medication was 0.9 and last April 2012 it was 0.7 . I have to do it from 2 weeks now but because i want to do it in the same lab in UK i will have to arrange the logistics to have my blood tested there.

 
Old 08-29-2012, 09:24 AM   #12
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Re: I AM WORRIED

Your situation is so similar to mine. Low level TG,where they cannot identify the source. When I picked the brains of the expert Doctors at a conference, I was told they would NOT do another RAI on me, unless my TG started to rise. You have already had 2 RAI's, so I assume your Doctor wants to just watch and wait. Is that correct?

You could do a search. You just have to devote the time to find it.

Last edited by mod85; 08-31-2012 at 09:44 AM.

 
Old 08-29-2012, 12:10 PM   #13
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Re: I AM WORRIED

you are right. I understand i mean i do understand each individual is a different case and of course i will consult my doctor.

I will send my paper to MD Anderson and will post their reply.

You got no idea how thankful i am for your help. thank you so much

Last edited by moderator2; 08-29-2012 at 12:27 PM.

 
Old 08-31-2012, 07:48 AM   #14
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Re: I AM WORRIED

I hope this story will help you to be less worried. When I was 37, I found a lump on the side of my neck. I went to a Doctor who couldn't feel it, because it would recede into my neck while in a seated position. I would feel it and measure it with my fingers EVERY day. I knew it wasn't growing, so I figured it was a calcification. 17 years later, a goiter popped out on my neck. Nodules were found on my thyroid. Even the surgeon did NOT think the old lump in my neck was cancer. When he went in, there were pockets of thyroid cancer in my thyroid, but the lump in my neck was a lymphnode full of cancer. It was fused to another lymph node that didn't have cancer in it.

When I found the lump at 37, I probably had the cancer for more than 10 years, because I had never felt my neck previously. And, it was pretty big at 2 inches, so it had to be growing for a long time .

This is why they say papillary cancer is slow growing.

 
Old 08-31-2012, 04:07 PM   #15
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Re: I AM WORRIED

Quote:
Originally Posted by Linda1652 View Post
I hope this story will help you to be less worried. When I was 37, I found a lump on the side of my neck. I went to a Doctor who couldn't feel it, because it would recede into my neck while in a seated position. I would feel it and measure it with my fingers EVERY day. I knew it wasn't growing, so I figured it was a calcification. 17 years later, a goiter popped out on my neck. Nodules were found on my thyroid. Even the surgeon did NOT think the old lump in my neck was cancer. When he went in, there were pockets of thyroid cancer in my thyroid, but the lump in my neck was a lymphnode full of cancer. It was fused to another lymph node that didn't have cancer in it.

When I found the lump at 37, I probably had the cancer for more than 10 years, because I had never felt my neck previously. And, it was pretty big at 2 inches, so it had to be growing for a long time .

This is why they say papillary cancer is slow growing.
Was this your story ? Mine is pretty similar !

Back in 2008. I had a lump on side of neck further to my shoulder above the end of my chest bone. I did an ultrasound..it was a lipoma. however they COULD SEE Lymph glands 3 of them that were cystic with solid masses inside them. However the size of the largest was 1 cm , they had pathological changes. However as i was having some period irregularities they did on the same session an ultrasound on my ovaries and uteus and it turn out i had one LARGE but clear ovarian cyst it was 5 cm , and it turn out i had only one kidney !!!!!

ALL THESE 3 NEWS in one session. However because i was shocked by the kidney and ovarian cyst think . I did not get back to the doctor about the neck thing and it get so large to almost 3-4 cm in 2010! this when i could actually feel it. and mine was exactly like that you can not feel it when you sit unless when it got SO LARGE!!!!

 
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