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Old 06-18-2013, 01:48 PM   #2401
angwill
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Still waiting for a call back from doctors nurse about biopsy instead of uptake scan and waiting to see if they can call and get the other test results. I would rather get the biopsy and whatever else started now vs having to wait 6 months.

Christine, Thanks for the info and I am not really sweating it about the size of the mass till a biopsy is done first. I was more upset that she wouldn't just word it that they are concerned about cancer instead of saying it most likely is cancer. I think she is a new nurse. If it is a simple mass do they have to remove it?
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Old 06-18-2013, 02:59 PM   #2402
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Originally Posted by angwill View Post
Still waiting for a call back from doctors nurse about biopsy instead of uptake scan and waiting to see if they can call and get the other test results. I would rather get the biopsy and whatever else started now vs having to wait 6 months.

Christine, Thanks for the info and I am not really sweating it about the size of the mass till a biopsy is done first. I was more upset that she wouldn't just word it that they are concerned about cancer instead of saying it most likely is cancer. I think she is a new nurse. If it is a simple mass do they have to remove it?
No, they don't have to remove it; however, there's a few things you need to be aware of.

First, these things tend to grow and if it grows it will eventually impact your trachea, eshopagus, and throat. You don't want to wait until this thing grows and wraps all around in your neck and it becomes a major surgery to remove it. It happens. My cousin's was 9 cm and extending down into his throat. It was benign but not a fun surgery.

Second, thyroid cancer is not like most other cancers (such as breast cancer) where the lump or mass will contain all cancer cells. You could have a mass of tissue that will generally be normal thyroid tissue mixed with abnormal cells (cancerous or not). The person doing your biopsy is going to be taking a few samples. They won't be able to sample the entire mass. With a thyroid biopsy it's fairly rare to get a result back that is "YOU DON'T HAVE CANCER." The only real way to get that is if you have a small lump and they get a very good set of samples.

Otherwise, you are going to get a reading of inconclusive or cancer.

It's going to be up to you as to whether you want to live with an "inconclusive" biopsy.

Again, the uptake scan will give you an idea of how the mass is operating. If it is warm or hot, it is less likely to be malignant. If you add that bit of information to an inconclusive biopsy then you have two data points to gamble with. If you have a cold/non-functioning nodule and an inconclusive biopsy you might not rest as easy.
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Old 06-18-2013, 03:29 PM   #2403
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No, they don't have to remove it; however, there's a few things you need to be aware of.

First, these things tend to grow and if it grows it will eventually impact your trachea, eshopagus, and throat. You don't want to wait until this thing grows and wraps all around in your neck and it becomes a major surgery to remove it. It happens. My cousin's was 9 cm and extending down into his throat. It was benign but not a fun surgery.

Second, thyroid cancer is not like most other cancers (such as breast cancer) where the lump or mass will contain all cancer cells. You could have a mass of tissue that will generally be normal thyroid tissue mixed with abnormal cells (cancerous or not). The person doing your biopsy is going to be taking a few samples. They won't be able to sample the entire mass. With a thyroid biopsy it's fairly rare to get a result back that is "YOU DON'T HAVE CANCER." The only real way to get that is if you have a small lump and they get a very good set of samples.

Otherwise, you are going to get a reading of inconclusive or cancer.

It's going to be up to you as to whether you want to live with an "inconclusive" biopsy.

Again, the uptake scan will give you an idea of how the mass is operating. If it is warm or hot, it is less likely to be malignant. If you add that bit of information to an inconclusive biopsy then you have two data points to gamble with. If you have a cold/non-functioning nodule and an inconclusive biopsy you might not rest as easy.
It almost sounds like the best route for me would be removal and testing. I just hate to waste money on tests that can just be inconclusive when eventually the mass will have to be removed anyway. I assume removal will be the only way to tell for sure if there is any cancer in it?

I am still not sure if mine is fluid filled or solid. I wonder if it is fluid filled do they just drain it?

Just got phone call back from doctors nurse with no answer about the mass type or size just that I must follow her protocol one step at a time and uptake scan is next. I am about to say screw it and find a new doctor. She is playing games with my thyroid meds that I have to call and ask her to call in a 30 day supply each month unless I play by her orders too and it is BS. I told her nurse I am about to ask for a new doctor. I have a feeling this doctor is going to tell me to find a specialist and dismiss me anyway.
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Old 06-18-2013, 04:46 PM   #2404
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It almost sounds like the best route for me would be removal and testing. I just hate to waste money on tests that can just be inconclusive when eventually the mass will have to be removed anyway. I assume removal will be the only way to tell for sure if there is any cancer in it?

I am still not sure if mine is fluid filled or solid. I wonder if it is fluid filled do they just drain it?

Just got phone call back from doctors nurse with no answer about the mass type or size just that I must follow her protocol one step at a time and uptake scan is next. I am about to say screw it and find a new doctor. She is playing games with my thyroid meds that I have to call and ask her to call in a 30 day supply each month unless I play by her orders too and it is BS. I told her nurse I am about to ask for a new doctor. I have a feeling this doctor is going to tell me to find a specialist and dismiss me anyway.
Every area runs a little differently. When I was going through my stuff, I just got referred out to a head/neck surgeon. He was the one that discussed whether or not to do a biopsy or just go for surgery (although my GP was the one who did the uptake scan, ultrasound, etc prior to even getting to the surgeon). You could just opt to go directly to a surgeon, depending on how your insurance works. The other thing you could do is just go through it all and take a wait and see approach to see if your large mass is getting larger. Maybe it won't.

But to answer your question, the only way to get a conclusive biopsy is to either get lucky during the biopsy and hit a cancerous spot or to have mass removed and have it undergo full pathology.
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Old 06-18-2013, 05:08 PM   #2405
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Every area runs a little differently. When I was going through my stuff, I just got referred out to a head/neck surgeon. He was the one that discussed whether or not to do a biopsy or just go for surgery (although my GP was the one who did the uptake scan, ultrasound, etc prior to even getting to the surgeon). You could just opt to go directly to a surgeon, depending on how your insurance works. The other thing you could do is just go through it all and take a wait and see approach to see if your large mass is getting larger. Maybe it won't.

But to answer your question, the only way to get a conclusive biopsy is to either get lucky during the biopsy and hit a cancerous spot or to have mass removed and have it undergo full pathology.
Thanks. Problem is DH is self employed and I lost my job and have not been able to find a new one. I have no insurance and sadly when I looked into private insurance plans I was deemed uninsurable. I have a feeling I am not going to find a surgeon that will take a cash payer without cash up front. I really am not sure where or how to turn at this point. I have a funny feeling current doctor is looking for a reason to give me the boot and tell me find someone else to call in my thyroid meds too. It scares me that I may be medless.
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Old 06-20-2013, 04:27 PM   #2406
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Thanks. Problem is DH is self employed and I lost my job and have not been able to find a new one. I have no insurance and sadly when I looked into private insurance plans I was deemed uninsurable. I have a feeling I am not going to find a surgeon that will take a cash payer without cash up front. I really am not sure where or how to turn at this point. I have a funny feeling current doctor is looking for a reason to give me the boot and tell me find someone else to call in my thyroid meds too. It scares me that I may be medless.
Do you live anywhere near a university hospital? They get money from your state too so they may be able to help you.

Also where they send your fna sample matters too. I have had ones done that were sent out and took forever to get back. The one place was out of network and they were saying they werent going to pay for it or at a greatly reduced rate for me I argued and told them I had no choice etc. So they processed it as in network.

But the last biopsy I had was done right at the uni. hosp. and sent to their pathology dept. and it came back fast.

They even have onsite social workers that can help you with financial aspects of your care.

I would maybe call your local hosp. social worker and see what programs are available for you in your area.

Best of luck to you. What ins. programs does your state have that you may qualify for? Ours has one but they have a $5,000 deductible. If you need surgery etc. it might be something worth considering.

I am sure your head is spinning. Hang in there!
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Old 06-20-2013, 04:31 PM   #2407
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Well today I went to the radiation oncologist.

She was happy with all my blood tests and looked at the ct results about the nodule in my lung. She doesnt think that was thyroid cancer because its getting smaller.

She agrees with what the endo is doing 6 months sono and blood tests.

I asked her about the scan next year and she said based on the new protocol its only blood tests most importantly and if there is a number rise then they will scan you.

So no scan for me and I see her next year. God is good!
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Old 06-20-2013, 08:16 PM   #2408
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luvmarypoppins,

That is wonderful that you are at the end of your battle. Congratulations on the good news!!!

Thanks for the advice. I have been making calls to see what it available since we do have a state university and hour away from us. So far it seems that the hospital can help depending on income for any testing, scans etc. but doctor bills are not covered at all. I think it is wonderful that they offer anything.

Sadly, today another nurse from the doctors office called and I told her that I talked to scheduling at the hospital and am extremely frightened of getting radiation through and IV and can not even begin to think how hard 4 weeks off thyroid meds will be. I also said I would rather just have the thing removed and get it over with. I asked if I could go straight to biopsy or removal and she said no you either do it the way the doctor says or she won't see you again for anything. I asked for a referal to a surgeon and she said they will not help me with that. I then asked how much thyroid and blood pressure meds (she just prescribed me a week ago and is only up in her office) she would call in till I found another doctor and I was told none I was on my own. So more phone calls tomorrow to find another doctor or surgeon I guess.

Your right my head was spinning from the first call when I was told you have a large mass and it's most likely cancer. Now it is spinning more because I can not believe that a clinic can be run like this one. I am hoping my getting booted is a blessing in disguise and that I can find a wonderful doctor who will work with me having no insurance.
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Old 06-20-2013, 11:14 PM   #2409
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angwill - I think generic thyroid meds are cheap.

What about your bp meds? I take 2 of those. 1 is generic and pretty cheap The other one is really expensive. There is no generic for it right now and they cant substitute anything else for me because they already tried several types of bp meds with me. Some gave me side effects and some dont even do anything for me. So 2 doctors consulted and came up with the 2nd new one I am on now. The lst one I have been years.

That is why I mentioned a univ. hosp. They get money from your state I am sure and have to help those with financial needs. Ours even has a big sign etc. I would def. look into going to an ent or endo at a hospital there. I think they tend to take the path of least resistance so to speak. Like get it done and over with etc. They probably see a great volume of patients. I know at mine sometimes you have to wait 2 months just to get an initial visit etc.

If you need meds right away, could you go to an urgent care type place. Would they give it to you there?

Hang in there! Wishing you all the best. Remember, you are your best advocate!
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Old 06-21-2013, 01:14 AM   #2410
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Yes, thankfully my meds are both on Walmart $4/$10 list. My BP is basically a diuretic. The issue is I can not get them without a doctor giving a prescription and she is not willing to call them in till I shut up and do exactly as she says without question. There is no way my BP is going down now anyway because it was only high in the doctors office and now with feeling so stressed it is up at home too. She just put me on them in the last couple weeks

Since our university does not have a medical program only nursing there are no medical students only nursing that I know of so no help with doctor charges. I will try and find an endo or ent. I did find a surgeon willing to take me but I need cash up front for him and I am sure I will need for the others too. I think I do have a plan on going to another clinic to see a PA there to get the meds till I work things out.

Thanks for the kind words. I don't feel like my own best advocate with everyone trying to tell me to shut up and do what I am told. I was a stubborn child and I am a stubborn adult and I want to understand why and ask questions and the doctor obviously doesn't like it and forces those under her to do her dirty work. Oh and I finally got an answer as to how big my mass is and it is basically 3cm round average, a bit smaller and a bit bigger on each side. They said the uptake scan would tell if it is liquid or solid.

How bad is an uptake scan. I got too anxious after talking to scheduling and being told off meds for 4 weejs then it is done over 2 days with an IV of radiation the first morning then a scan 4 hours later and then drive the hour back the next day for the second scan. I didn't hear much after that.

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angwill - I think generic thyroid meds are cheap.

What about your bp meds? I take 2 of those. 1 is generic and pretty cheap The other one is really expensive. There is no generic for it right now and they cant substitute anything else for me because they already tried several types of bp meds with me. Some gave me side effects and some dont even do anything for me. So 2 doctors consulted and came up with the 2nd new one I am on now. The lst one I have been years.

That is why I mentioned a univ. hosp. They get money from your state I am sure and have to help those with financial needs. Ours even has a big sign etc. I would def. look into going to an ent or endo at a hospital there. I think they tend to take the path of least resistance so to speak. Like get it done and over with etc. They probably see a great volume of patients. I know at mine sometimes you have to wait 2 months just to get an initial visit etc.

If you need meds right away, could you go to an urgent care type place. Would they give it to you there?

Hang in there! Wishing you all the best. Remember, you are your best advocate!
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Old 06-21-2013, 01:37 AM   #2411
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Sorry I didnt have an uptake scan.

I had sono, ct scan, pet scan and then the fnas and then the core biopsy. The pet scan already showed mine was cancer. I had 2 tumors. The huge one was 12.5 centimeters and the little one that was causing me so much pain and they had to cut the nerve on that one and that is when I almost died too was on the left side and that was 4 centimeters.

Micayla said she had that scan I think, Oh Micayla where are you???

Oh Micayla, I am still praying for you on your journey.

Christine - did you see that I read my 4th book? I am about halfway done with the next one. Read it on the plane to disney.
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Old 06-21-2013, 02:30 PM   #2412
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Sorry I didnt have an uptake scan.

I had sono, ct scan, pet scan and then the fnas and then the core biopsy. The pet scan already showed mine was cancer. I had 2 tumors. The huge one was 12.5 centimeters and the little one that was causing me so much pain and they had to cut the nerve on that one and that is when I almost died too was on the left side and that was 4 centimeters.

Micayla said she had that scan I think, Oh Micayla where are you???

Oh Micayla, I am still praying for you on your journey.

Christine - did you see that I read my 4th book? I am about halfway done with the next one. Read it on the plane to disney.
The RAI for my uptake scan was in pill form so I don't understand the IV thing.

luvmarypoppins--I must have missed your post on the book thread. That thread is so large that I swear I miss things on it!
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Old 06-21-2013, 02:34 PM   #2413
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Sorry, I am here!! I've been very busy lately, and I don't always get notified that someone has posted.

Now I am wondering if I am not remembering correctly- I thought my first iodine test wasn't actually radioactive ...IIRC, they put iodine in an IV and I just felt warmth spreading through my body, but it wasn't bad at all.
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Old 06-21-2013, 05:40 PM   #2414
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Sorry, I am here!! I've been very busy lately, and I don't always get notified that someone has posted.

Now I am wondering if I am not remembering correctly- I thought my first iodine test wasn't actually radioactive ...IIRC, they put iodine in an IV and I just felt warmth spreading through my body, but it wasn't bad at all.
was it ct with the contrast?

I know after my thyroidectomy I was screaming at them not to do anything on me with contrast when I had the bowel obstruction Good I couldnt swallow the stuff as I would just have puked it up. They did a ct with no contrast and I even told the surgeon dont even scrub my body down with betadine etc. I think he said he would use something else.

I hope you are busy in a good way Micayla. Wishing you all the best always.
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Old 06-21-2013, 07:32 PM   #2415
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CT scan can use iodine I had one of those years ago on my abdomen. That wasn't hard except the warmth made me think I peed myself. lol Then there is nuclear medicine that uses the radioactive material with the CT scan. I was told I needed 4 weeks off thyroid meds, IV with radiation which scares me, 2 days of scans and something about diet but my head was dizzy by that point and I told them I would have to call back to schedule. I may be odd one out but who the heck though to put radiation in someones body and think that was cool? That is where my thinking is.

Today I did talk to the manager of the clinic and told her all that took place and she assured me the doctor could not refuse to fill my meds and was completely wrong in not calling me herself and not saying it is cancer without knowing for sure. We decided to switch to their other location and completely different doctor. She said she will personally get my records to her and ask her to go over them before my visit in a week and a half. She said she feels I will find her much more personable and she will listen and take my feelings into consideration that my current doctor would not. So hopefully all will go well there. I am going to ask about the other scans like PET or what other alternatives I might have if not going straight to biopsy or surgery.

Thanks so much everyone and may your health be good.
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