# Upcoming PT: Still feeling uncertain



## Eliza79 (Jul 23, 2013)

Hi Everyone,

I've been reading the boards for a few weeks, which has been very helpful, and decided to join so I could participate in the forum.

I'm having a PT next week to remove my right lobe due to a solid, highly vascular 1.8cm nodule that biopsy reports is a "follicular neoplasm with hurthle cell features." This is my only apparent nodule; the other lobe looks normal and healthy.

I didn't have any thyroid issues until a few months ago. I found the nodule (even though it's not that big, you can actually see it fairly easily) and reported it to my GP, who sent me for US, biopsy, etc. At the time I didn't have any symptoms other than fatigue and my GP reported my thyroid levels were "slightly low" (as in borderline hypo) and wanted me back to recheck in a month, after the US and biopsy.

About 2-3 weeks later I started developing muscle aches, major fatigue, stomach pains, etc. and also occasional bouts of heart palpitations and hot flashes. It definitely feels like something is stuck in my throat and the nodule is annoying. Obviously my rt lobe is pooping out on me. My GP decided to wait to test my levels once the US showed a solid nodule and esp. once I received the follicular neoplasm "diagnosis."

So I am having the funky lobe removed knowing there is only a 20-30% chance of cancer at most and really, really hope I am making the right decision. The unknown is a bit freaky. I would probably need thyroid meds irrespective but wish I didn't. They will remove the other 1/2 if cancer is found during surgery but most likely I'll have to wait for final pathology.

I'm not that scared of the surgery, just of the potential complications or issues down the line. I also wonder if others out there who have had PT or TT, and it turned out benign, regretted their decision or were glad to have been proactive? I don't know anyone else going through something like this...


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## joplin1975 (Jul 21, 2011)

Everyone's situation is different. I'm sorry you are stuck in one of those limbo type places, but I did want to tell you that my quality of life has significantly increased post-op, even with meds. Yes, it took some time to get everything right, but man...I'm so thankful th at gland is gone. Just wanted to give you another perspective.


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## Octavia (Aug 1, 2011)

I strongly believe you are making the right decision. On the off chance that this is cancer, you do not want cancer in there with hurthle cells. Get that bad boy outta there!

How can we help?


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## annieo (Sep 26, 2012)

I had a TT due to large benign goiter on left side. I had 2 FNA done on it 2 years apart and both came back benign. I was already taking a low dose of synthroid before removal. I chose to have the entire thyroid removed despite the other side looking fine. It did have a very small nodule. For me I didn't want to deal with the possibility that they did find cancer and I would be back in surgery again or the possibility of problems with the other side down the road and putting me back in surgery. Plus I was already on synthroid so having to take a pill was not a big deal. The pathology came back benign but I am still glad the whole thing is out. I think it is a personal decision and each person has to decide what's right for them.

Ann


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## Eliza79 (Jul 23, 2013)

Thanks for your comments and the reassurance. I was calm about the whole thing when I find out I needed to have a PT to figure out if my nodule was cancerous or not, but once I read about all the potential issues and actually scheduled the surgery, I couldn't help but be anxious.

Major surgery and the removal of a vital gland for an indeterminate chance of cancer seems bizarre. 6 months ago I would have been shocked to discover that lots of people regularly have their thyroid removed based on percent chances and suspicions. Too bad for those of us who go into surgery not knowing what will happen!

One thing that did make me feel oddly better about the whole thing (in a weird way) is that my GP also had a PT for an indeterminate nodule and it turned out to be benign, with no complications. I am using the same surgeon. So hopefully my results will be similar...


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## KarenB (Jul 19, 2013)

Eliza, I went into surgey in the same situation as yourself - follicular neoplasm suspicious for cancer but not a confirmed diagnosis. We decided on a PT because we thought my other half might 'kick in' and I wouldn't have to take thyroxin. They booked a frozen section during the surgery to be doubly sure, but it also couldn't confirm cancer.

The pathology though, the week after surgery, showed positive for cancer. It's such a personal decision for everyone, but I do wish he had taken the whole thing initially.

I just had my second surgery yesterday and I'm doing okay! I'm nervous about the next few months, but I am just going to pay close attention to my body and try and work with my endo.

Best of luck with everything! Having had two surgeries I'm an expect now (haha), so if you have any questions about that, shoot


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## Eliza79 (Jul 23, 2013)

Thanks for your story, Karen. Ugh--I'm sorry you had to have two surgeries and all that uncertainty. It's really annoying to be in the 10% category of people who end up with "follicular neoplasm" biopsy results. What kind of cancer did you have? Papillary or follicular or follicular variant of papillary?

My surgeon told me that while frozen section is typically correct in identifying cancer about 70% of the time during a PT surgery, not so in follicular cases. So the chances of waking up with a TT are LOW for most of us but, according to the stats, at least 25-33% will have to go back for a 2nd surgery. I just wish they wouldn't give patients false hope. Several people have said that they were told "everything looks benign" only to receive the cancer call a week after surgery.

Did your surgeon say they were still undecided right after surgery or did they lean one way or the other? With a large nodule and calcifications, I am honestly not surprised that it turned out to be malignant. I think those aspects (size and calcifications) up your % chances some.


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## catherinelyn (Jul 17, 2013)

Hi Eliza,

I'm new to the board too and am in a similar situation. I recently had an FNA for one nodule on my left side that came back as a follicular neoplasm suspicous for cancer. It was graded in between atypical and suspicious with a 15-30% probablity of cancer. I'm scheduled for a PT on August 12th.

Just wanted to wish you the best with your surgery and hope it's a good outcome. Please post when you feel up to in post op.

cathy


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## KarenB (Jul 19, 2013)

Eliza79 said:


> Thanks for your story, Karen. Ugh--I'm sorry you had to have two surgeries and all that uncertainty. It's really annoying to be in the 10% category of people who end up with "follicular neoplasm" biopsy results. What kind of cancer did you have? Papillary or follicular or follicular variant of papillary?
> 
> My surgeon told me that while frozen section is typically correct in identifying cancer about 70% of the time during a PT surgery, not so in follicular cases. So the chances of waking up with a TT are LOW for most of us but, according to the stats, at least 25-33% will have to go back for a 2nd surgery. I just wish they wouldn't give patients false hope. Several people have said that they were told "everything looks benign" only to receive the cancer call a week after surgery.
> 
> Did your surgeon say they were still undecided right after surgery or did they lean one way or the other? With a large nodule and calcifications, I am honestly not surprised that it turned out to be malignant. I think those aspects (size and calcifications) up your % chances some.


Eliza, I was ultimately diagnosed with follicular carcinoma in the pathology report following my PT. I previously got the diagnosis of Bethesda IV follicular neoplasm from my GP, who was the one who ordered both the ultrasound and subsequent FNAB. When I first saw my surgeon, he thought it SHOULD be cancer, because of the size (3cm), large blood supply, and fine calcifications. So he ordered the slides to review himself, and couldn't confirm anything more than the original pathology report. So we decided on the PT.

He told me at the time it was only a 30% chance of being cancer. He was careful to say, however, that there was a chance the frozen section wouldn't pick up cancer during surgery. I did get the feeling, right throughout the process, that he was really looking for a reason to take the whole thing. He didn't seem at all certain when he came in to see me after the PT - I remember saying to my husband when he left - I don't think this is it. He told me he made the pathologist look for 45 minutes before he sewed me up, because he was really sure they might find something there.

I know what you mean about the false hope. I was elated when he told me initially I would only have to lose half - I told myself I was preparing myself for the worst, but in reality, when the news came, I was devastated. Also, that 5 days between the PT and getting the pathology report, particularly given the uncertainty I felt from my surgeon, were not fun. I had such a hard time with the first surgery. I will say though, had I known how well the second one would go, I would have been a lot less anxious.

Absolute best of luck to you - if you have any other questions about surgery I'll do what I can to answer them.

Best of luck to you too, catherinelyn. I'm certain you'll be fine :hugs:


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## Eliza79 (Jul 23, 2013)

Going to the hospital for Pre-op testing today for surgery this Friday. Am wishing I had opted to watch and wait until next summer! Not because I'm afraid of the surgery, only due to the prospect of removing a working lobe for a benign nodule. Mine is only 1.8cm and most likely benign.

BUT I know things could get worse if I delayed 9 months. It could get bigger irrespective. I'll just try to focus on the positive and hope my gut feeling that it is benign turns out to be true!


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## KarenB (Jul 19, 2013)

Eliza79 said:


> Going to the hospital for Pre-op testing today for surgery this Friday. Am wishing I had opted to watch and wait until next summer! Not because I'm afraid of the surgery, only due to the prospect of removing a working lobe for a benign nodule. Mine is only 1.8cm and most likely benign.
> 
> BUT I know things could get worse if I delayed 9 months. It could get bigger irrespective. I'll just try to focus on the positive and hope my gut feeling that it is benign turns out to be true!


Best of luck Eliza - I am sure your gut feeling is correct! And you're right - I've done so much reading, and it seems to me the 'wait and see' approach usually delays the inevitable.

Please let us know how you go - we would love to know you're okay on the other side.


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## Eliza79 (Jul 23, 2013)

Thanks for your kind words, Karen. I hope your recovery is going well. I will definitely update after the surgery, esp so others awaiting their procedures can read another individual story. I know we all like to hear how people are doing and to read about the experiences of others!

My Pre-op went well. They were basically like, "other than this thyroid business, you are young and perfectly healthy!" sigh.

My husband can't wait for the surgery to be over so I will stop obsessing and reading studies and second guessing my decision to be aggressive. I know I must be annoying to live with right now!!


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## megan (Jul 11, 2013)

I think my husband has to be getting tired of hearing about my upcoming surgery too, although he has been very patient. It is hard not to obsess about it a little as it gets closer (mine is next Tuesday). I'm a little nervous, but I'm also ready to have this behind me and be moving on toward being healthy.


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## KarenB (Jul 19, 2013)

My husband got a bit fed up too I think. He's been so amazingly supportive, but this has taken over our life somewhat, I am was all-obsessed with information gathering for some weeks.

Eliza, I was told the same thing. If it weren't for your thyroid, you'd be in perfect health. It made me second guess things a lot, but I feel a lot of relief now that the nasty thing is out and I can just concentrate on getting back to the best version of myself.


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## Eliza79 (Jul 23, 2013)

Thanks to you both. With less than 24 hours to go before surgery, I am in a pretty good place, mainly due to the kind words and personal stories shared by others who have gone through (or are going through) something similar. Thanks to everyone who has offered feedback here.

I know I will be nervous tomorrow morning but I am glad to be getting the surgery over with so I can move on with life and stop worrying about this! The saga may not be over but I am at least making a move. Hopefully everything will go smoothly tomorrow and then there will just be the pathology waiting game to play while I recover. I will post an update when I get a chance and want to wish others good health and speedy recoveries!


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## Velcro (Jul 26, 2013)

Best wishes for an easy surgery and speedy recovery.


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## catherinelyn (Jul 17, 2013)

Wishing you the very best outcome with the surgery and fast recovery!


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## KarenB (Jul 19, 2013)

Eliza, you might be in surgery now! I am certain everything goes really well and hopefully we will hear from you soon.


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## Eliza79 (Jul 23, 2013)

Had surgery yesterday and am still in hospital. It's been rough. Despite having the patch, etc for nausea, I vomited everything I drank or ate after surgery for about 9 hrs. Just couldn't shake the nausea and awful headache. The neck pain and soreness is much more intense than I anticipated. Today I am SO sore. It feels like my head weighs a ton and I am only moderately comfortable in bed. Have not walked around or anything. I was supposed to go home this morning but they won't release me until I keep fluids down on my own and Tylenol for pain. Hope that will improve soon. There was no damage or complications, luckily.

The surgeon only took the right lobe. Frozen section did not reveal cancer so we will see. I should find out for sure by Wednesday. Now that I have had the surgery I am especially hoping, praying, whatever, that it is in fact benign. Really don't want to go through this again!


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## joplin1975 (Jul 21, 2011)

Oh, Eliza, I'm sorry! Hang in there, it will get better.

I know some people get some comfort from those travel pillows that wrap around your neck.


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## Eliza79 (Jul 23, 2013)

Thanks, Joplin. I finally got my nausea and vomiting under control earlier today and feel a lot better. There is still a ton of soreness and pain near the incision and in my throat, and my head needs constant support, but having gotten over the sickness and horrible nausea has made a big difference. I am obviously just really, really sensitive to the anesthesia. The incision looks bigger and angrier than I had anticipated but it has only been 24 hours. Hopefully things will improve a little every day.

I honestly now have so much respect and empathy for everyone who has gone through this surgery, and esp. for those of you who had to do it twice! You are awesome.

Good luck to people out there with upcoming surgeries.


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## StormFinch (Nov 16, 2012)

Glad you've got the nausea under control and I empathize with you. I too am really sensitive to anesthesia and tossed my cookies for what seems like forever the first day. One nurse informed me that they had basically thrown the whole pharmacy at me. lol

Don't worry about the incision site. It does look rather disconcerting now, but mine has faded almost into the background and I'm 8 months post op.

Pamper yourself for awhile, and good luck with your recovery.


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## KarenB (Jul 19, 2013)

Eliza, I'm so sorry to hear you've had such a bad time  Some people react very badly to the anesthesia. My first surgery was so much worse than my first and I had a LOT of neck pain. In my experience, the first 3 days were the worst. The worst of the neck pain went then.

Keep the ice on - that really helped me with the pain. I second the suggestion of the travel pillow - it's really handy to have around, and also for the trip home from the hospital. Use your hands to support your head any time you have to move. And try and stay ahead of the pain with whatever drugs they've given you - at least for the first few days.

And as everyone has said, be kind to yourself. Rest rest rest.


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