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Old 10-08-2013, 01:12 PM   #1
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Biopsy Results...It's Cancer

I had the fine needle biopsy done on Thursday. Talked to my NP over the phone today and she said the results say "consistent with papillary carcinoma".

I am trying not to panic but I'm freaking out inside and sitting at my desk trying not to cry.

This is past my NP's area of expertise. She is going to call someone in the Cities (about 4 hours from me) to have him look over my results & see if he has any recommendations of who I could see in the area & figure out my options. I may have to go to Fargo, ND which would be about 2 hours away.

I would like to be able to see someone in my area but there aren't many options. There's an ENT but he has a horrible bedside manner. There's a new Endocrinologist that's taking new patients (I don't think we've had an endo locally before) but I don't know anything about her. So, I may just have to go out of town.

I was really hoping this was going to turn out to be nothing. I mean, if I had just stuck to seeing a regular doc they would've just kept checking my TSH & started me on thyroid medication. They wouldn't have any clue that I have thryoid cancer. I just can't believe I have it myself! I feel okay, can't feel or see the nodules & there's only 2 of them. How can it be cancer?!
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Old 10-08-2013, 02:15 PM   #2
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please breathe slowly. this word, CANCER, is such a scare. of course it means a zillion different things in different circumstances. think of it as "cell abnormalities" instead and have confidence they will figure out what to do to fix it.

the gushes of stress hormones you are no doubt producing make everything seem grimmer than it really is. try to stay level as much as you can. *hug*

I know when I go to my endocrinologist, there are people with thyroid cancer in and out of the office all the time. not like they are dropping like flies or anything! I am sure it can be handled. *hugs again*
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Old 10-08-2013, 02:30 PM   #3
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Old 10-08-2013, 03:24 PM   #4
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Jiggles-

You should be comforted by the fact that this was diagnosed in a timely way. When I had my own FNA a few years ago, I researched and found that thyroid cancer is one of the MOST curable cancers. The "issue" for you will be getting optimized with thyroid hormones post surgery.

I have a friend who had his thyroid removed 10 years ago, and he's had no problems at all, maintaining with a regular dose of Synthroid.

IMO, the most important thing is to find a good thyroid doctor or NP who cab monitor your care long term. Just as any of us who need to take thyroid hormones, it's for life.
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Old 10-08-2013, 03:44 PM   #5
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My DH is a 15 year survivor of thyroid cancer. It must be awful and so scary to hear those words, and my heart breaks for what you must be feeling, but please know that many, many people get this diagnosis, get treatment, and have no complications. DH was in his 20s when he was diagnosed and treated. He's in his 40s now, and lives a full, rich life.
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Old 10-08-2013, 04:33 PM   #6
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Thank you for all the encouraging words.

I've calmed down some but I'm just feeling a bit overwhelmed. My NP called me back after talking to her contact. He's retiring but there would be someone else in his office if I wanted to go that route. I don't really like the idea of having to see someone 4 hours away though.

He did tell her that surgery isn't always needed depending on the size of the nodule and that it's possible to treat it in other ways. Something about inflammation causing the cancer so if you can control the inflammation you can undo the cancer. My NP works with a naturopathic doctor who she says works with a lot of thyroid cancer patients. She said I could start working with her if I want.

She also said she'd be more than happy to refer me to the ENT or Endo in town if I want to go that route.

I'm just not even sure what to think right now. I guess I think that an ENT or Endo is going to automatically start talking surgery and that scares me. But I'm very skeptic about the whole naturopathic thing too.

I can't help but think "what did I do wrong?" Is there something I could have done to prevent this?
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Old 10-08-2013, 04:33 PM   #7
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Jiggles, I have not much more to add about the medical portion of your diagnosis, but here is a ((Hug)) for the emotional part. I know or have heard of NO ONE who ever succumbed to Thyroid cancer! I myself have thyroid disease - Hashimotos Thyroiditis and am on a natural T3 T4 hormone after getting one of my nodules removed 7 years ago when they couldn't determine if it was cancer.

My suggestion to you is to search the internet for alternative methods of healing, support groups and consider everything along with western medicine advice. My DH had a prostate cancer diagnosis 11 yrs ago before we delved into alternative medicine and healing. He had radiation seeds implanted and was cured of cancer thankfully, but had some side effects. There is so much cancer (and other serious disease) that can be healed by natural methods. Just do your due diligence before making any quick decisions. It's hard not to panic,, but you don't have to!

((Hugs)) again!
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Old 10-08-2013, 10:48 PM   #8
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Jiggles, first of all, big hugs to you. I know what you're feeling right now. That "C" word is very scary, no matter how "curable" people tell you thyroid cancer is. I had my thyroid removed due to papillary thyroid cancer in two surgeries - the first half in Dec. 2009 and the other half in March 2011. Feel free to send me a message if there's anything I can help with, or any questions I can try to answer. You're going to be ok It is a journey, though.
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Old 10-08-2013, 11:02 PM   #9
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No medical advice that I can give. Just prayers and good thoughts coming from me to you.
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Old 10-09-2013, 03:37 AM   #10
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((HUGS)) I had my thyroid removed because of papillary thyroid cancer in February, so it's all still new to me. About a month after my surgery I had a scan done to make sure it was all gone and hadn't spread anywhere else and it was clear.
Just don't think it was anything you did wrong or could have prevented. My doctor said one theory was that when we were kids we weren't properly protected from x-rays, like at the dentist.
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Old 10-09-2013, 04:27 AM   #11
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Personally, I would not fool around with an alternative to surgery if the cancer diagnosis is confirmed. While confined to the thyroid gland, there is almost zero chance of the cancer spreading to other parts of the body--which is why removal is the standard protocol. My fear is that while dealing with 'alternative' treatments, the cancer may spread, whereas the survival rate with thyroid removal is astronomically high.

When I had my FNA, I had already researched the best surgeon in case the results indicated malignancy.

It also seems to me that with total removal of the thyroid, you will not be any worse of than those of us with Hashimoto's whose bodies are destroying the thyroid, and we're on Rx for life.
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Old 10-09-2013, 06:15 AM   #12
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((HUGS)) I had my thyroid removed because of papillary thyroid cancer in February, so it's all still new to me. About a month after my surgery I had a scan done to make sure it was all gone and hadn't spread anywhere else and it was clear.
Just don't think it was anything you did wrong or could have prevented. My doctor said one theory was that when we were kids we weren't properly protected from x-rays, like at the dentist.
When talking to my NP she kind of made me feel like because I didn't stay gluten free that caused the inflammation, which then caused the cancer.

When she had me try gluten free a couple of times I told her I didn't feel any different. At that point she kept telling me to try it to see if I felt any better (not that I ever felt that bad in the first place).

She said when talking to this other doctor he mentioned gluten & inflammation and she told him I was gluten free. When I said I really hadn't been sticking to that she was like "Ohhhh. Well, we need to figure out how to get you gluten free." Kind of like that caused it.

So, then I went home thinking "Jeez, if I had changed my diet would I have not gotten cancer?"
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Old 10-09-2013, 06:29 AM   #13
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LovingAK & Kjwalsh ~ I'm glad everything worked out for the both of you. I may look to you for questions about the process.

Leo ~ I kind of fear the same thing about trying alternative methods first. I agree with Dipgal that there are other ways but I think maybe they would be best to be used in conjunction with the regular methods.

I'm picking up a copy of my results today but I probably won't be able to understand them. I'm thinking of just making an appointment with the new Endo in town so I can sit down face to face with someone and have her go over the results with me. Then I can go from there and maybe she could give me a recommendation on good surgeons or what the next steps would be.
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Old 10-09-2013, 08:04 AM   #14
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Jiggles-

I hope you misunderstood that NP because there is NO WAY that you did anything to cause this cancer by eating gluten!! Inflammation does not cause cancer. Please don't think you could have avoided this by sticking to a gluten-free diet.

No one who develops cancer should EVER blame herself (or himself). There are such complex factors (both genetic and environmental) at work that scientists cannot confidently identify any specific factor in any individual's cancer.

Please, please ignore any suggestion that you could have prevented this.
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Old 10-09-2013, 08:17 AM   #15
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Jiggles-

I hope you misunderstood that NP because there is NO WAY that you did anything to cause this cancer by eating gluten!! Inflammation does not cause cancer. Please don't think you could have avoided this by sticking to a gluten-free diet.

No one who develops cancer should EVER blame herself (or himself). There are such complex factors (both genetic and environmental) at work that scientists cannot confidently identify any specific factor in any individual's cancer.

Please, please ignore any suggestion that you could have prevented this.
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Old 10-09-2013, 10:15 AM   #16
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Old 10-09-2013, 10:44 AM   #17
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Thank you all. It really helps to know I have such great support here.

The logical part of me knows that it wasn't the gluten & it's certainly possible I misunderstood my NP. The other part is thinking "Well, what if...?" I need to remember that it is not my fault.
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Old 10-11-2013, 06:53 AM   #18
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Please be easy on yourself. You did nothing wrong.

Wouldn't hurt to have a sit down with the dr in town. I know what you mean by the long distance travel.

The people here on the thyroid board are great. There are also a couple of groups on fb. They all start with the initials FTPO (for thyroid patients only) Than they break it down by thyroid topics, adrenals, sex hormones, and a group for people without a thyroid. There are many there how have had cancer too. There is also a group of people on yahoo who have had cancer.

Please keep us updated.
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Old 10-11-2013, 09:05 AM   #19
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Thanks for the info about the FB groups. I will check them out.

I talked to my NP yesterday and she is going to call & refer me to the new Endo in town. She said she did talk to someone who's dealt with the new Endo and heard good things about her so that's good. I suppose I just need to sit & wait for the clinic to call me and set up the appointment.

I got a copy of my results but I don't understand any of it so it will be good to have a face to face with someone and have her explain everything to me.

Although my mom reviewed my results & says it looks like I'll be fine. I get a kick out of her. She worked in medical records about 15 years ago & said she understands some medical terminology so she wanted to see my results. I scanned them to her & she said she couldn't understand everything so she googled the other stuff and that it looks like I'll be fine. Gotta love her.
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Old 10-11-2013, 09:13 AM   #20
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Thanks for the info about the FB groups. I will check them out.

I talked to my NP yesterday and she is going to call & refer me to the new Endo in town. She said she did talk to someone who's dealt with the new Endo and heard good things about her so that's good. I suppose I just need to sit & wait for the clinic to call me and set up the appointment.

I got a copy of my results but I don't understand any of it so it will be good to have a face to face with someone and have her explain everything to me.

Although my mom reviewed my results & says it looks like I'll be fine. I get a kick out of her. She worked in medical records about 15 years ago & said she understands some medical terminology so she wanted to see my results. I scanned them to her & she said she couldn't understand everything so she googled the other stuff and that it looks like I'll be fine. Gotta love her.



I am so sorry you are dealing with this ! I happened upon this by mistake , and there are so many that would love to give you a hug and prayer if they only knew about your biopsy. All of the Adam fans especially !!!!
God Bless and , I am sure all will be well.
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Old 10-11-2013, 10:04 AM   #21
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Jiggles, first off, I want to send you and lots of support. But reading your posts I have questions. Like, why did they do a needle biopsy in the first place? Can you tell us the story from the beginning?

It sounds like you live somewhere remote, where it's difficult to find a good Dr. If you do indeed have thyroid cancer, IMHO, ditch the naturopaths and find an oncologist, pronto. And don't "wait" for the Endo to get around to calling you. Call them and tell them this is urgent and you want to be seen asap.

This woman thinks that gluten caused your thyroid inflammation which "turned into cancer"? You need a new Dr, sweetie. This one sounds like a quack. Even if you have to drive an hour or two in one direction to get yourself to a specialist, get there. Call one, tell them you have the test results and ask if you can fax them to them for review. Once they look them over, they can determine if this is indeed cancer and then they can see the urgency (or decide it isn't so urgent) and calm your fears.

God bless and comfort you through this process. But be sure of what you're in fact dealing with before you lose too much sleep over this. We're here for you.
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Old 10-11-2013, 10:22 AM   #22
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Here's the thread from when the FNA was first recommended. Nodules and Biopsy - Trying Not to Panic

I agree that if you have to travel to see a good doctor, please do so. I know it's a pain, but you deserve the best care.
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Old 10-11-2013, 05:19 PM   #23
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Thanks Rose.

Thanks for linking my other thread, Dawn.

Cheryl, here's the deal with my NP. She does really push the gluten free thing (I've heard that from everyone I know that's seen her) and I don't like that part since I've tried GF but didn't feel any different. However, she does specialize in womens' health, actually listens to people and doesn't just go by the TSH like regular docs around here. Honestly, I think she's been pretty great when it comes to managing hypothyroidism but I definitely agree that I need to see someone else more specialized now that I know it's cancer.

In the last 3 years I've seen 3 different general practitioners just for my regular annual physicals. I keep trying new ones because I haven't liked any of them. The first year my TSH came back at 8.something (range .5-5.0) during a regular blood panel checkup. At that time I knew nothing about thyroid issues and felt fine. She had me retest a few months later and it was barely under 5 but she said first test was a fluke and it was fine now.

2nd year I mentioned something about the previous year's TSH to the new doc so she retested. Came back at 8.7 but because I said I felt okay she said we'd just keep an eye on it and retest after several months. In that time I started doing research on my own and started to realize that I should be looking more closely at it. That's when I found my NP and she couldn't believe the previous docs hadn't taken it more seriously and done further thyroid testing. She started me on Nature-Throid. I mentioned Hashi's (just from what I read about here) and she had no problem having my anti-bodies checked. They came back positive. That's when she said I should have a thyroid ultrasound done to check for nodules. I did that in the summer of 2012 and they found 1 nodule but it was small. She had me do another ultrasound this summer. I had another nodule (but it's small) and the first nodule had grown, so it was recommended I have it biopsied. And now here I am with thyroid cancer.

I truly think that if I just listened to the regular docs, didn't do my own research and found my NP, that I wouldn't have a clue right now that anything is going on. I think a doc may have eventually started me on Synthroid if my TSH had stayed elevated but I don't think they would've looked any further since I feel fine physically.

The one thing I really liked about my NP is that she didn't poo poo me when I said I was researching online. I even told her about this board and at times she'd say "Now go research XXX and even check that board you're on." She was happy I was researching things for myself and then discussing them with her.

Please don't think I'm on the defensive about my NP. I'm just sharing my story and why I went with her. If I was only dealing with hypothyroidism I would stick with her but even she said this is now past her level of expertise. Definitely time to find a specialist!

If I don't hear from the Endo's office by early next week I will definitely be calling to push the issue. And if I can't get in as soon as I'd like then I will have to look to someone else. My issue right now is that I don't really know who that someone else should be. I haven't been able to find anyone that's said they went to so and so and he/she was great (even if they are out of town). I'm still researching though!

I really appreciate everyone's support, thoughts and advice. I will keep you all posted on my progress!

Last edited by jiggles; 10-11-2013 at 05:24 PM..
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Old 10-11-2013, 05:41 PM   #24
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Thank you for telling your whole story. I can't believe those first Dr's that saw your TSH was elevated that they didn't start you on medication. Weird. Well, I hope you can find a really good Endo and Oncologist. Don't let anyone put you on the back burner.
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Old 10-12-2013, 04:52 PM   #25
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You're welcome. Happy to share me experience.
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Old 10-12-2013, 07:44 PM   #26
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Thank you all. It really helps to know I have such great support here.

The logical part of me knows that it wasn't the gluten & it's certainly possible I misunderstood my NP. The other part is thinking "Well, what if...?" I need to remember that it is not my fault.
Jiggles~~it is definitely not your fault.
As well, remember that there are a LOT of people LIVING with a diagnosis of the big "C" as illustrated by our board.
I'm so sorry to hear this and my prayers are with you to find the strength and guidance you need at this challenging time.
What about chatting with someone from Cancer Treatment Centers of America? I don't know anything about them; but I thought if I were given this diagnosis, perhaps I'd use them to educate myself, for treatment options.
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Old 10-13-2013, 07:39 AM   #27
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Thanks for mentioning the treatment center. I will check them out too.
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Old 10-15-2013, 10:25 AM   #28
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Well, I have an appointment with the new Endo on 10/25. My NP set it up and the nurse asked her if I had seen an Oncologist yet. She said no, so the nurse said that the Endo will probably review my results first and she may just send me right to an Oncologist. My NP told me to start reseaching if I need to decide who to see.

I'm feeling a bit frazzled and overwhelmed right now. I have no idea which Oncologist to see. I was researching the ones in the bigger city (that I will probably end up at) but it doesn't say which ones specialize in thyroid cancer. I would prefer to see someone who specializes in that rather than someone who dabbles in a little bit of everything.

No one I've talked has been able to give me any specific names for recommendation. I was hoping that's what the Endo could do. Even my NP doesn't seem to have anyone specific in mind.

This is the scary part for me right now. Not knowing who to see next.
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Old 10-15-2013, 10:32 AM   #29
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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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Old 10-15-2013, 10:33 AM   #30
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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!
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