Aa
FNA inconclusive :(
So, my ENT just called and the FNA on my 3.7 cm nodule is inconclusive. Apparently the majority of what they pulled was blood and some "debris", but only a few cells...and those cells didn't show cancer. So...I'm right back to square one with this thing. The ENT told me he thinks I need to have another biopsy, this time with an ultrasound; however, he believes that surgery is imminent regardless of the next biopsy results, just based on its size. I guess my nodule is considered very large, although it isn't pressing on any of the organs on my neck yet. I tried to schedule the ultrasound biospy, but they don't have any openings till the end of January, and we are moving then. The ENT told me that he would be willing to call the ENT department at our next duty station (my hubby is in the military) and help me transition my case to them.
For those of you who have been thru this, what are the advantages of me having another biospy if they want to take it out anyway? Furthermore, should I even have it (the nodule, I guess) removed if it isn't causing me any problems yet? Is there a chance it won't grow any bigger? If I do have surgery, what can I expect?
Just FYI--my hormone levels are consistently normal, so I'm neither hyper of hypothyroid. This is just simply a matter of an exceptionally large, solid nodule that takes up the majority of my right side (I don't think it is that large, but apparently everyone else does).
OH---and send me a message if you know of any great ENTs at Camp Lejeune Naval Hospital! That's where we are headed next...
For those of you who have been thru this, what are the advantages of me having another biospy if they want to take it out anyway? Furthermore, should I even have it (the nodule, I guess) removed if it isn't causing me any problems yet? Is there a chance it won't grow any bigger? If I do have surgery, what can I expect?
Just FYI--my hormone levels are consistently normal, so I'm neither hyper of hypothyroid. This is just simply a matter of an exceptionally large, solid nodule that takes up the majority of my right side (I don't think it is that large, but apparently everyone else does).
OH---and send me a message if you know of any great ENTs at Camp Lejeune Naval Hospital! That's where we are headed next...
ps------------in the Post to Expert section ----stumbled across two very good questions which you might not have seen---------apologies for not figuring out how to copy the links but
RAI Pill dated Set 14 08 from deaniegirl has an excellent anedoctal answer to RAI and
Suspicious for Papillory Carcinoma dated Sept 27 08 from sayeer is informative too!
x
RAI Pill dated Set 14 08 from deaniegirl has an excellent anedoctal answer to RAI and
Suspicious for Papillory Carcinoma dated Sept 27 08 from sayeer is informative too!
x
Well -------had THE second opinion yesterday ---whether it was his dapper pocket hankie or charming Irish wit or reputation as a serious world rated endocrin surgeon-----I felt seriously better about his attitude than the previous doc's ------making the point-----SHOP TILL YOU DROP for a good one!
The first thing he said when I sat down ----In the worst case, you need to know the prognosis is essentially the same as if it never happened! ie It is all manageable! Have no worries! You'll live to wear your knickers down by your ankles sort of thing!................hmmm, ok........if you say so! Am hoping one of my 4 daughters won't let that happen anyways.
The fact that he was wearing a grey suit -------colour codes nicely the awful predicament! With no real symptoms of malignancy - follicular type is a really cruel joke and tests nerves, guts and character better than any job, sporting competition or school gate mind game ever could! It takes guts to make treatment decisions that you believe in, esp if they in the grey coats - think something to the contrary!
Belief is helped with INFO. 4 yrs ago, I didn't have the guts to question why my 3cm and 1.3 cm nods weren't biopsied -------how ironic 4 yrs later - I want to fight the removal of a lobe (my 1.4cm nod on the left side did disappear in that 4 yr time span).
My Santa Wish List is for a shrinking remedy for the other one ahead of surgery - prob 2nd Jan. Had the brainstorming idea of a generous dollop of Preperation H followed by lengthy sessions alternating with an ice pack then hot pad--maybe while watching old re-runs of Gilligans Island or Billy Connelly (v funi Scot!) shows----desperate or what! Maybe I'll post a crazy question to find that last ditch miracle ahead of the scrubs brigade making nice pre-op chitchat.
Yeah - I know what you mean about not noticing the size --- perhaps I need to ask Santa for a new mirror! Funny enough - am a scarf girl - always wear em!! So of course ---as one does (laying in bed thinking WHY) - could scarf wearing harbour the necessary warming energy to harvest a bed of nasty follicular mutant cells? I still believe in the culpability of the Mirena (since whipped out!) - but all the grey coats snicker at such quackery theorizing!
We'll grab at any straws to make sense because going forward -----breaking patterns has got to be part of a wellness strategy!
Great to hear Reese120 say you're feeling well again. You're story is very inspiring. Interesting enough, Doctor No 2 yest made great whohaa of having a pathologist in the OR (something Doc 1 doesn't have) --but because I remembered your story - I didn't allow myself to go all weak in the knees for this 'selling feature'! I hope you have a wonderful Christmas and with the best present of good health going into the new year!!
xx
The first thing he said when I sat down ----In the worst case, you need to know the prognosis is essentially the same as if it never happened! ie It is all manageable! Have no worries! You'll live to wear your knickers down by your ankles sort of thing!................hmmm, ok........if you say so! Am hoping one of my 4 daughters won't let that happen anyways.
The fact that he was wearing a grey suit -------colour codes nicely the awful predicament! With no real symptoms of malignancy - follicular type is a really cruel joke and tests nerves, guts and character better than any job, sporting competition or school gate mind game ever could! It takes guts to make treatment decisions that you believe in, esp if they in the grey coats - think something to the contrary!
Belief is helped with INFO. 4 yrs ago, I didn't have the guts to question why my 3cm and 1.3 cm nods weren't biopsied -------how ironic 4 yrs later - I want to fight the removal of a lobe (my 1.4cm nod on the left side did disappear in that 4 yr time span).
My Santa Wish List is for a shrinking remedy for the other one ahead of surgery - prob 2nd Jan. Had the brainstorming idea of a generous dollop of Preperation H followed by lengthy sessions alternating with an ice pack then hot pad--maybe while watching old re-runs of Gilligans Island or Billy Connelly (v funi Scot!) shows----desperate or what! Maybe I'll post a crazy question to find that last ditch miracle ahead of the scrubs brigade making nice pre-op chitchat.
Yeah - I know what you mean about not noticing the size --- perhaps I need to ask Santa for a new mirror! Funny enough - am a scarf girl - always wear em!! So of course ---as one does (laying in bed thinking WHY) - could scarf wearing harbour the necessary warming energy to harvest a bed of nasty follicular mutant cells? I still believe in the culpability of the Mirena (since whipped out!) - but all the grey coats snicker at such quackery theorizing!
We'll grab at any straws to make sense because going forward -----breaking patterns has got to be part of a wellness strategy!
Great to hear Reese120 say you're feeling well again. You're story is very inspiring. Interesting enough, Doctor No 2 yest made great whohaa of having a pathologist in the OR (something Doc 1 doesn't have) --but because I remembered your story - I didn't allow myself to go all weak in the knees for this 'selling feature'! I hope you have a wonderful Christmas and with the best present of good health going into the new year!!
xx
Hi ~
Sorry I did not respond sooner, have been busy getting ready for Christmas - I have 3 little kids :o)!
There really was not that much pain after surgery. My hospital keep me on pain meds for the time I was there, but when I came home, I only took them the first night or two to sleep. I came home the next day - both times- and was able to talk, eat and function. I bounced back much quicker with my first surgery then I did my second. I will be having RAI in January so I have no answers about that - yet ;o)! I am currently on Cytomel until Dec. 28th, then I have to go off of it to be "hypo" for my RAI treatment. 2 days after my RAI treatment I will start my Synthroid. If you only need a partial, there is a good chance you will not need meds. If you have a total, you will need medication for life. I felt better within 3 days of taking the cytomel. I was very hypo by the time they put me on it. They were orginally going to do the RAI in Dec. but decided to wait so I could enjoy Christmas. I have had a couple of days of fast heart rate, but it is not every day. I can understand how scared you are, I was the same way BUT if it is cancer, you want it OUT!
I hope this helps you! If you have any more questions, feel free to ask away!!!!
Keep me updated!! I understand how you feel because I have been there!
Hugs!!
Sorry I did not respond sooner, have been busy getting ready for Christmas - I have 3 little kids :o)!
There really was not that much pain after surgery. My hospital keep me on pain meds for the time I was there, but when I came home, I only took them the first night or two to sleep. I came home the next day - both times- and was able to talk, eat and function. I bounced back much quicker with my first surgery then I did my second. I will be having RAI in January so I have no answers about that - yet ;o)! I am currently on Cytomel until Dec. 28th, then I have to go off of it to be "hypo" for my RAI treatment. 2 days after my RAI treatment I will start my Synthroid. If you only need a partial, there is a good chance you will not need meds. If you have a total, you will need medication for life. I felt better within 3 days of taking the cytomel. I was very hypo by the time they put me on it. They were orginally going to do the RAI in Dec. but decided to wait so I could enjoy Christmas. I have had a couple of days of fast heart rate, but it is not every day. I can understand how scared you are, I was the same way BUT if it is cancer, you want it OUT!
I hope this helps you! If you have any more questions, feel free to ask away!!!!
Keep me updated!! I understand how you feel because I have been there!
Hugs!!
Thanks for your response :) London, wow...my hubby and I keep saying that as soon as we get the money, we are heading over there! That's our dream vacation HAHA
Anyway, I'm glad to hear that I am not alone in this...well, more specifically, alone with this *giant* nodule apparently. I hear about so many others with smaller nodules and I think, wow...something must really be going on with me. I'm just amazed that given its size, I never noticed it sooner. Go figure!
Anyway, your ENT has some different stats than mine. He says about 50% with a partial thyroidectomy will have to take meds, and 100% with a total. But, I've talked to several people who have not had to take meds, so that is encouraging. Yeah--I really don't want to take meds. And when doctors tell me things are going to be easy, usually, I have learned that their definition is not relaly the same as mine. Like, the FNA...yeah, I heard it was practically painless from my docs. Nope--in the 3 times I have had it done, it wasn't quick and it wasn't painless. So...when they tell me how easy surgery is, or how easy the meds are to get used to, I have to take that with a grain of salt HAHA
Let's keep in touch about this, that way we can learn from and encourage one another! :) Thanks again for your reply! (can we call ourselves the "big nodule" ladies by the way HAHA)
Anyway, I'm glad to hear that I am not alone in this...well, more specifically, alone with this *giant* nodule apparently. I hear about so many others with smaller nodules and I think, wow...something must really be going on with me. I'm just amazed that given its size, I never noticed it sooner. Go figure!
Anyway, your ENT has some different stats than mine. He says about 50% with a partial thyroidectomy will have to take meds, and 100% with a total. But, I've talked to several people who have not had to take meds, so that is encouraging. Yeah--I really don't want to take meds. And when doctors tell me things are going to be easy, usually, I have learned that their definition is not relaly the same as mine. Like, the FNA...yeah, I heard it was practically painless from my docs. Nope--in the 3 times I have had it done, it wasn't quick and it wasn't painless. So...when they tell me how easy surgery is, or how easy the meds are to get used to, I have to take that with a grain of salt HAHA
Let's keep in touch about this, that way we can learn from and encourage one another! :) Thanks again for your reply! (can we call ourselves the "big nodule" ladies by the way HAHA)
So, I am going through the same thing right now. My 1st FNA I had done in July came back with the atypical follicular cells, couldn't rule out a follicular neoplasm. My doctor made it sound like it wasn't that big of a deal. He said we could remove it since you can't tell if it is cancer until removed or I could wait and have a repeat FNA in 4 months. He was so laid back about it, I thought I would be overreacting if I told him to take it out. So, during that 4 months I did a lot of research and saw that there was a 20% chance it was cancer and most people's doctors said it needed to be removed. So, I had my 2nd FNA in November and it came back the same. This time I told that doctor I wanted it removed. He tried really hard to convince me that I could keep waiting and rechecking to see if it had grown. It was 1.4 cm in July and is still 1.4 cm. I told him that I didn't think it was worth the risk of cancer. I know that the odds are that it isn't, but I don't feel right keeping it there just in case. He said with thyroid cancer it is slow growing, so unless it has a dramatic growth it wouldn't be doing me any harm. So, there are doctors out there that do feel that it is fine to watch and wait to see if it grows. You would just have to have routine ultrasounds. To me, the waiting and not knowing was driving me crazy. I am scheduled to have it removed on January 7th. My doctor said too that the surgery takes about 2 hours and I will have to spend the night. He also said that I shouldn't have to take medication since he is only taking out half. My doctor told me that even if it turned out to be cancer that I shouldn't need to have the other half removed. Again, this is not what I have read or heard others say. If it is cancer I will definately get a second opinion. I feel like my doctor is blowing this off like it isn't a big deal. At least your doctor seems to care. Let me know what you think about this whole thing. I hate that the diagnosis of follicular neoplasm is such a gray area.
Snap!!!
I'v just had the follow up biopsy (both with ultrasound) on same size nodule ----first biopsy inconclusive, second now showing possible suspicious cells and the fact it grew 1 cm in 4 yrs. Of course mine should have been dealt with 4 yrs ago but that's sloppy medicine!
Yes, all scary news! I made the decision to have second biopsy just to narrow down what it is and it seems it is not of the nasty malignant variety but is a follicular lession---the malignancy of which can not be determined any other way but through surgical retrieval and testing.
Russian Roulette more like it because to leave it there - so my ENT warns - is madness.
Am in a very confused state and of course want other opinions but am slowly coming to the belief that surgery is my only option. I read a statistic that 20percent of these types (if indeed they are suspecting follicular lession in your case) are malignant so the odds are still in our favour!!
The ENT said that 80percent post surgery can cope with only half the thyroid and no need for meds but in the event of meds - all have said - cake walk (though am not convinced either esp with heart issues etc).
RAI I believe is radioactive iodine ----taken 2x after surgery in capsule form to kill off any maligant cells left behind if indeed the lession is maligant ---selective weedkiller the ENT called it. But suspect other commun members know this gig better and hopefully can correct me if I'v got wrong info.
I have had my tonsils out as an adult and am told that the thyroid op is a zillion times easier; one of my main reasons to mainline tranquilers at the moment is to kill the horrendous memory of that op which included a post-op bleed out!
My guy says 2 hour procedure, out in 2 days - full pathology results within 5. Does this sound right? --I don't know. Am iin London so perhaps time for a cuppa included!
Can these lessions shrink on their own is my question? Is lazer ablation an option for us either? Like you, have normal thryoid function and feel fine ---well, sort of because malignancy worry introduces a new feeling of uber unwellness!!! So to hear Reese120 feeling better after the surgery - am encouraged!
I'v just had the follow up biopsy (both with ultrasound) on same size nodule ----first biopsy inconclusive, second now showing possible suspicious cells and the fact it grew 1 cm in 4 yrs. Of course mine should have been dealt with 4 yrs ago but that's sloppy medicine!
Yes, all scary news! I made the decision to have second biopsy just to narrow down what it is and it seems it is not of the nasty malignant variety but is a follicular lession---the malignancy of which can not be determined any other way but through surgical retrieval and testing.
Russian Roulette more like it because to leave it there - so my ENT warns - is madness.
Am in a very confused state and of course want other opinions but am slowly coming to the belief that surgery is my only option. I read a statistic that 20percent of these types (if indeed they are suspecting follicular lession in your case) are malignant so the odds are still in our favour!!
The ENT said that 80percent post surgery can cope with only half the thyroid and no need for meds but in the event of meds - all have said - cake walk (though am not convinced either esp with heart issues etc).
RAI I believe is radioactive iodine ----taken 2x after surgery in capsule form to kill off any maligant cells left behind if indeed the lession is maligant ---selective weedkiller the ENT called it. But suspect other commun members know this gig better and hopefully can correct me if I'v got wrong info.
I have had my tonsils out as an adult and am told that the thyroid op is a zillion times easier; one of my main reasons to mainline tranquilers at the moment is to kill the horrendous memory of that op which included a post-op bleed out!
My guy says 2 hour procedure, out in 2 days - full pathology results within 5. Does this sound right? --I don't know. Am iin London so perhaps time for a cuppa included!
Can these lessions shrink on their own is my question? Is lazer ablation an option for us either? Like you, have normal thryoid function and feel fine ---well, sort of because malignancy worry introduces a new feeling of uber unwellness!!! So to hear Reese120 feeling better after the surgery - am encouraged!
I thank all of you for your responses...especially Reese120. This is all very new and scary to me, and it truly helps to hear the stories of others.
Reese120, can you please tell me some more about your situation? What was it like after surgery? Did you experience very much pain? Did they remove the entire thyroid? Do you have to take meds now? Oh..and what is an RAI?
Probably what scares me most right now about surgery is thinking that I might have to be on meds the rest of my life. My hormone levels have not been affected by this so far, and I really don't want to become hyper or hypo after surgery. Also, I have heard that some of the hormone replacements make you have a fast heart rate, and I already have trouble with that because of my anxiety disorder. So...yeah...I'm scared and I have a lot of questions...
Reese120, can you please tell me some more about your situation? What was it like after surgery? Did you experience very much pain? Did they remove the entire thyroid? Do you have to take meds now? Oh..and what is an RAI?
Probably what scares me most right now about surgery is thinking that I might have to be on meds the rest of my life. My hormone levels have not been affected by this so far, and I really don't want to become hyper or hypo after surgery. Also, I have heard that some of the hormone replacements make you have a fast heart rate, and I already have trouble with that because of my anxiety disorder. So...yeah...I'm scared and I have a lot of questions...
I do not want to scare you but here is my story. I had a 3.5 cm nodule found totally by accident in May. I never had any problems or symptoms and I felt fine. All my thyroid labs came back fine. I had a FNA, ultrasound guided, done in June, results benign. Due to the size, my surgeon suggested I have it removed. I had my first surgery on 11/4 - while on the OR table they did a frozen pathology and the results came back benign. They sewed me up and off I went. 5 days later I got the call that I indeed had papillary thyroid cancer and I had my 2nd surgery on 11/14. The FNA'a are not very reliable on big nodules. I had my surgery done at a major university hospital and my surgeon is one of the top ten in head and neck cancers in the country. I will be undergoing RAI in January. Your nodule is large since alot of peopel here have them under one cm. Other's have them measring mm. I would reccomend getting it surgically removed. The surgery is really not that bad. I was in overnight both times and felt better within a few days. Please keep us posted and good luck with your decision.
I had exactly the same problem as you as my FNA came back inconclusive.. I also wondered whether I should do another FNA and in the end I got an ultrasound scan and then it was decided that I should have surgery..
All the best with your decisions as your doctor should be able to tell you..
All the best with your decisions as your doctor should be able to tell you..
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