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Old 10-15-2013, 10:33 AM   #31
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Jiggles: contact the discharge coordinator nurses at your local or larger hospitals; this is the nature of my job as an RN looking for and researching physicians for my patients.
Just ask them if they have any recommendations for any oncologists or any oncologists that specialize in thyroid cancer, or where to obtain this information. Don't give up until you've looked under every rock for the specialist you want and need!
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Old 10-15-2013, 10:57 AM   #32
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Quote:
Originally Posted by Dirty Harriet View Post
Jiggles: contact the discharge coordinator nurses at your local or larger hospitals; this is the nature of my job as an RN looking for and researching physicians for my patients.
Just ask them if they have any recommendations for any oncologists or any oncologists that specialize in thyroid cancer, or where to obtain this information. Don't give up until you've looked under every rock for the specialist you want and need!
Good advise and I would think an Ear , Nose and Throat specialist would have good recommendations to.
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Old 10-15-2013, 11:00 AM   #33
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I would be scared and unsure of who to see, too. Anyone would. But it's better to see someone sooner rather than later. You might see an oncologist and decide you don't like them on a personal level or something and then try someone else, but at least you are moving forward and not "sitting on your laurels" (whatever that means. ) Time is of the essence.

Maybe make some calls to a few of the oncologists in the big city and ask the person working in the office if the surgeon has experience with thyroid cancer. They should be able to tell you that much, or at least get back to you with the answer.

Rooting for you, Jiggles. Keep moving forward.
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Jiggles - sorry to hear this. It's easy for some of us to say you'll be okay because we've never heard of anyone passing with thyroid cancer and I know you are worried. Remember the big to-do with the host of DWTS last year when she had it? You are young and in excellent health and i'm sure you will be fine. The thing about gluten - my thyroid doctor wanted me to try a g-free diet to bring down my antiobodies because i have hashimotos. I couldn't really stick to it - never felt full and didn't really feel better. I also have nodules and it's probably been 4 years since I had any of them biopsied but it's always been a scare.

Good luck Jigs - keep us all posted!
Don't want you to miss the two posts at the bottom of your first page so I quoted them.
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Old 10-15-2013, 12:42 PM   #34
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Jiggles-

Have you checked on the actual hospital websites? First, I would suggest searching for a SURGEON who specializes in thyroid rather than a oncologist.

When I was concerned about possible malignancy (growing nodules), my endo told me that he'd just refer me to a surgeon and would manage my care in coordination with the surgeon.

Our big hospitals (in NYC) list staff by specialty and subspecialty, and I was able to find several surgeons who focus on thyroid, and I had planned to ask my endo to make a recommendation from the list I created. Happily, my nodules proved benign (although I have annual ultrasounds to check on them), but if I need surgery, I know how to identify possible surgeons.
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Old 10-15-2013, 12:57 PM   #35
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Thank you all for the advice & tips!

Dirty Harriet, that's interesting to know. I will look into someone like that at our hospital or the larger facility.

Leo, I did check the hospital's website (our hospital is part of the larger facility that is out of town) but they don't list much information on each doctor. They have a picture and then just the department they work in and some generic info. I saw a few that actual said "breast cancer" but nothing specific for thyroid cancer.

I will definitely keep researching though!
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Old 10-16-2013, 07:21 AM   #36
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Three years out from radical neck dissection and removal of two parathyroids and damage to the other two ...
I can tell you, I am good to go!
Finally!
It took a bit because I am in a small area with a limited number of doctors, others bounce back almost right away.
My oncologist has chosen to keep me TSH suppressed due to metastasis to my lymph nodes, but even that I have now adjusted to.
(((hugs)))
My original diagnosis knocked me to the ground, literally.
My daughter said "mom whats wrong"
I said hang on, let me catch my breath, stood up, and said it out loud.
Its a blank after that, I do not remember telling anyone else.
My biggest piece of advice, if you meet with a doc who tells you this is the "good cancer" find a new doc.
Look for a surgeon with experience, one that will protect your vocal cords and your parathyroids as much as possible.
More (((hugs))) are needed.
Oh and BTW, the ONLY thing I was asked was "were you ever exposed to radiation as a child" Gluten free was not even brought up!
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Old 10-16-2013, 01:14 PM   #37
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I'm glad you are doing well after all those years. I've read some positive stories about people doing very well after surgery but then there are a few where that's not case. Makes me kind of nervous. I also read about the TSH suppression. Sounds like it takes a while to get the levels straightened out. At least I'm already on Nature-Throid so taking a pill every day won't be new to me.
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Old 10-17-2013, 08:06 AM   #38
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Its manageable

Had I found my oncologist quicker, I would have snapped back quicker.
I am much more knowledgeable now when it comes to seeking care.
My first doctor, although he saw me on Christmas Eve, was complacent.
My second wanted to immediately put my TSH back within normal ranges, and wanted to take me off the calcitriol (vit d) because in his 15 years medical experience he had never known anyone on it long term.
How many surgically induced hypocalcemic patients have you worked with?
None
Ah, I get it now
NEXT
lol
There is no room for ego when seeking proper medical care!
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Old 10-17-2013, 08:52 AM   #39
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That's kind of the part I'm most worried about at the moment...finding the right doctors/surgeon. I feel like I'm winging it right now since I don't have anyone in the area that's gone through this and can give me an opinion on who to see and who not to see. I would feel better if someone said "Go to Dr. X because he's great!" or something like that.

I'm just going to take it one step at a time. If I don't get good feelings from someone than I can always try someone else. I just don't want the process to get get dragged out.
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Old 10-17-2013, 09:31 AM   #40
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Follow your gut!
Your instincts will guide you.
You are a smart woman, you can do this!

Not sure if posting links is allowed, so I will say
ThyCa; Thyroid Cancer Survivors Association
Its a web site with a forum and its a wealth of information.
The good, the bad, and the ugly.
Just dont let yourself get bogged down in the bad, even at its worst, it passes eventually!

Last edited by TN1969; 10-17-2013 at 09:36 AM..
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Old 10-21-2013, 02:58 PM   #41
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Sorry!

Jiggles, so sorry to hear that your biopsy came back positive. Excuse me, I had first found your thread regarding your needle biopsy, and just posted asking about your diagnosis. I just joined this site, an ignorant newbie.

The replies here are all encouraging. Please let me add my support to your situation, and please keep us posted.
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Old 10-21-2013, 04:34 PM   #42
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Thank you Kim. I hope your results come back benign. I believe at my clinic/hospital the Radiology department does all biopsies but from what I've read online some Endo's and ENT's are able to do their own. Good luck!
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Old 10-21-2013, 07:18 PM   #43
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I am sorry to hear that you are going through this. I will say a prayer for you. Nothing is too hard for GOD!
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Old 10-25-2013, 11:15 AM   #44
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I met with the new Endo this morning. I liked her and feel very comfortable with her so that will help. She didn't tell me anything I didn't already know (from my own research) but it was still nice to have her go through everything since my SO was there and he could hear everything first hand.

The next step will be a total thyroidectomy. I actually have an appointment on Monday with the ENT surgeon in town that does the thyroid surgeries. There's another surgeon in the same health system in Fargo, ND, which is 2 hours away. Since the Endo is new here she doesn't really know either of them but said she's heard they are both very good. The only thing is that this is the ENT that I've heard had a terrible bedside manner although he's very good with thyroid issues. So, I'm a little scared about that. I could go out of town but if he's good it would be nice to stay local.

I have a friend who's a surgical nurse in town so I texted her to see if she knows this surgeon. I mentioned the bedside manner thing too. She responded "Excellent surgeon & staff. Highly recommend him. True story about the bedside manner." So, I'm happy to hear a good report but still a little leary about his manner. Like someone at my work said though, what matters most is how good he is at the surgery since I will only have to follow up with him a couple of times after. Then the Endo takes over.

The Endo said she will oversee all the follow up scans, blood tests, thyroid levels, etc. Since I like her I'm happy about that. Makes me feel a little better.

She is thinking that I may not need the RAI treatment based on the size of the nodule but that will actually be determined after the surgery once Pathology looks over my thyroid. Would be nice to not have to do that but she said we'll cross that bridge when it's time. I'll have to do more research on that part. Right now I'll focus on the surgery.

So, that's where I'm at.
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Old 10-25-2013, 12:22 PM   #45
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Sounds great and as long as the surgeon is very good , Who Cares if he's good in bed LOL , I mean good bedside manner LOL

So glad you have a good feeling , I am sure all is going to be well !!!
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Old 10-25-2013, 01:07 PM   #46
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Thanks for the laugh Rose!
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Old 10-25-2013, 01:17 PM   #47
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Jiggles-

This sounds SO encouraging! You like the endo, and she is the one who will be managing your care long term. She's the one you want to 'connect' with.

In a surgeon, you want one with good technical skills because his/her role is mainly the actual operation.

My sister (who is a medical office manager) recently had major surgery, and she chose her surgeon based on her primary doctor's strong recommendation--and her own research on the surgeon's reputation (which is superb). When she met him for the first time, she noticed his lack of affect and generally distant manner, but it didn't deter her because she wanted him solely for his technical skills.

An example--in one follow-up visit, she told him about some problems she was experiencing, and his response was "Oh, that's nothing." My sister felt that he wasn't taking her symptoms seriously, and she was disturbed. But she spoke to her primary doctor and was somewhat reassured that nothing serious was going on despite her discomfort.

Several weeks later, the problems had resolved on their own, and she realized that what the surgeon MEANT was "Don't worry. Other patients have reported similar problems, and they resolve within a few weeks." That's what a doctor with a GOOD bedside manner would have said.

My point is that you will have your endo for ongoing care, and that's the doctor whose 'bedside manner' is important. If the local surgeon is considered technically good, I personally would opt for him, and ignore the 'personality' issues.

You seem to be in good hands!
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Old 10-25-2013, 01:54 PM   #48
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Thanks for the info, Leo. I'm glad things worked out for your sister. It's good to know that others agree about technical skill over bedside manner. And you're right, it's the Endo I will want a good, long term relationship with.
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Old 10-28-2013, 11:22 AM   #49
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Met with the surgeon this morning and I have surgery scheduled for next Tuesday already!

He definitely isn't he most warm and fuzzy doctor but I feel very good about his experience. He worked at the Mayo Clinic in Rochester, MN for 20 years. He even taught this surgery there and was the head of the department. He left because he didn't like the politics that went along with being the dept. head and he likes this area. He said he's not worried about his surgery so I shouldn't be either. He'll tell me if there's something to worry about.

He did say that he finds me a sort of odd case and isn't completely sure it's cancer. He said biopsies aren't 100% accurate. He said normally when it's cancer he can always feel the nodule. He felt for it on my neck a couple of times and couldn't find anything.

He said he will do a frozen section during the surgery. So, he will take out the right lobe with the nodules and send it to Pathology while I'm in surgery and then wait to see if it comes back as cancer before finishing the surgery.

I've read a lot about people having Pathology done on half their thryoid after surgery and then it coming back as positive so then they need to have another surgery. I don't remember if I've read about having frozen sections done during surgery and the results coming back inaccurate.

I guess I'm a little nervous that might happen and I'd end up only have a partial done to only find out later that I need a total. Do they Pathology again on the thryoid after the surgery even if they do it while you're in surgery?
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Old 10-28-2013, 11:26 AM   #50
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I'm so pleased you have a fairly quick surgery date, even though I know it's probably nerve-wracking for you. I'm afraid I know nothing about the pathology, but it sounds like your surgeon knows what he's talking about, and I'd think it would be good to have the pathology done while you're still in surgery to minimize the chances of needing a second surgery. I'm following along and sending you all good thoughts!
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Old 10-28-2013, 01:28 PM   #51
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Jiggles-

My medical secretary sister worked in the pathology dept. of a major NYC hospital for many years, so I know something about frozen sections. They are fairly standard in large hospitals (smaller ones may not have the resources), and there is no more chance of error than with any other biopsy.

I've heard that many FNA biopsies of the thyroid are 'inconclusive,' and surgery is always recommended because the chance of malignancy is so high. However, the frozen section uses a lot more thyroid tissue than the FNA and should provide the surgeon with a more conclusive diagnosis.

It's great that you will have your surgery so soon. Waiting is always difficult.
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Old 10-28-2013, 02:03 PM   #52
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That is very good to know. Thanks Leo!
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Old 10-28-2013, 06:15 PM   #53
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So glad you will be getting this over with soon . It will make the holidays much more enjoyable not having this to look forward to. I had the frozen section done for a breast biopsy surgery. I thought it was great to come out of surgery knowing if it was positive or not .
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Old 10-29-2013, 02:10 PM   #54
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I'm feeling a bit panicked about the surgery. Not the surgery itself but the frozen section part. I've read that it's more common to have false negatives than false positives. And I've read about several cases where the FS showed negative but the final pathology came back positive so a 2nd surgery was needed.

I'm afraid this will happen to me. The surgeon will only take my right side and say all is well and then call me up later and say sorry, we were wrong. I DO NOT want to have to go through 2 surgeries.

I'm tempted to say just take the whole darn thing no matter what the outcome. I'm already on Nature-Throid and will be forever anyway. My thyroid obviously isn't working and I have Hashi's which is just killing it off anyway.

I don't see the benefit of keeping half even if by some miracle it really isn't cancer. Am I missing something?

MY SO says I just need to trust my surgeon but I went in there expecting to discuss a TT and came out with him saying it's possible to be only a PT. Now that I've had a chance to really think about things that freaks me out.
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Old 10-29-2013, 04:05 PM   #55
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I understand exactly how you feel, and in a similar situation, I'd want them to just remove the entire thyroid. However, I'd discuss it with the surgeon and my endo to be sure that there are no medical issues I'm not considering.

I have a friend who had his entire thyroid surgically removed (Grave's disease) about ten years ago, and he actually take a lower dosage of thyroid hormones than I do! And he's told me that he feels perfectly fine.

Since Hashi's is destroying my thyroid anyway, and the only result of the removal (that I know of) is that I'd be taking hormones for the rest of my life--which is my situation already--I don't see any reason NOT to remove the entire gland.

But, again, I'm no physician, but I'd certainly raise this question with my doctors were I in your situation.
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Old 10-29-2013, 04:39 PM   #56
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I would ask them why and tell them why you feel that way .
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Old 10-29-2013, 05:15 PM   #57
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Thanks Rose. I will definitely do that now that I've had time to think things through.

Glad to know I'm not the only one to think that way, Leo. I will certainly discuss it though to see if there would be any issues with removing the whole thing.

I wish I would've thought about that when I was in the consult but I was so surprised by him saying he's not sure it's cancer that I wasn't thinking straight.
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Old 10-29-2013, 05:24 PM   #58
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Just keep a note pad and write every thing that you think about down !
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Old 10-29-2013, 06:32 PM   #59
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I will do that!
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Old 10-30-2013, 07:34 AM   #60
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I called the surgeon's office and talked to one of his nurses about the accuracy of the frozen section. She has not seen a case with my surgeon where the first needle biopsy was positive but the frozen section one was negative. She also said the Pathologists there are very good and are very straight forward with this surgeron if they cannot make a good determination one way or the other.

I also asked her about any concerns there would be to just do a TT even if the biopsy came back negative. I told her I have Hashi's and it's killing off my thyroid anyway & I'll already be medicated for life. She said that was a good question and she's curious about it too so she will try talk to the doctor today and get back to me.

She said I will have an opportunity before the surgery to pose any concerns or questions I have.

I feel a bit better now that I put the question out there & will hopefully have him thinking about it.
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