Aa
For those of you who had total thyroidectomy...
Just curious, for those of you that had a TT, why was it necessary and how did you do after surgery?
Do you have your TT on the suspicion of cancer or because cancer was diagnosed through an FNA?
I'm having TT on Feb 5th, because FNA showed atypical cells that most likely represent papilliary cancer. I also was diagnosed with Hashi's on FNA, although I am not experiencing hardly any hypo symptoms at this time.
I'd love to hear from those of you who had TT's! Thanks!
Do you have your TT on the suspicion of cancer or because cancer was diagnosed through an FNA?
I'm having TT on Feb 5th, because FNA showed atypical cells that most likely represent papilliary cancer. I also was diagnosed with Hashi's on FNA, although I am not experiencing hardly any hypo symptoms at this time.
I'd love to hear from those of you who had TT's! Thanks!
I have seen many, many posts that said that they were unable to conceive until their thyroid levels were corrected. I know that my sister was having an impossible time until her thyroid was removed (cancer) then she found out after that she actually also had Hashimoto's (which had been undiagnosed for years). Three RAI treatments later - and getting her thyroid levels corrected - she now has a BEAUTIFUL baby girl.
Have your daughter's thyroid levels checked. I know it's one of the first things many fertility doctors check.
Have your daughter's thyroid levels checked. I know it's one of the first things many fertility doctors check.
I hear you! I feel fine too. No syptoms. And when I tell this to my docotrs - their answer is - there are some things going on inside my body that I don't even realize - but will 20 years from now. Like I care about 20 years from now! I could die in a car accident 20 years from now too - I still drive! I'm afraid that I do feel fine - and having this procedure is going to make me sick until they get the medicine regulated. I would much rather procrastinate until I am sick - but my family says what if then is too late.
The other issue is my PTU. Supposedly I have heard that 1 1/2 years is the maximum anyone should take this medication as it can damage your liver (although I did read a post somewhere around here about someone who has been on PTU for 10 years!). I watched my Nana slowly suffer from liver cancer and it wasn't pretty. Anything liver related bothers me terribly. I have been on PTU for almost 3 years now. So they keep harassing me that times up. I already postponed this TT 2x! Once when I accidentally got pregnant! And the 2nd time the surgeon cancelled because I wasn't prepared.
Unfortunately we haven't been blessed with psychic powers and will never know if we're making the right decisions. I went to John Edward and to Sylvia Browne - hoping I would get picked and somebody will help me with my decision. No such luck. We'll never know................. Life is full of "what ifs" and "If only knew then what I know now!"
Good Luck! And thanks for the prayers! I need them.
The other issue is my PTU. Supposedly I have heard that 1 1/2 years is the maximum anyone should take this medication as it can damage your liver (although I did read a post somewhere around here about someone who has been on PTU for 10 years!). I watched my Nana slowly suffer from liver cancer and it wasn't pretty. Anything liver related bothers me terribly. I have been on PTU for almost 3 years now. So they keep harassing me that times up. I already postponed this TT 2x! Once when I accidentally got pregnant! And the 2nd time the surgeon cancelled because I wasn't prepared.
Unfortunately we haven't been blessed with psychic powers and will never know if we're making the right decisions. I went to John Edward and to Sylvia Browne - hoping I would get picked and somebody will help me with my decision. No such luck. We'll never know................. Life is full of "what ifs" and "If only knew then what I know now!"
Good Luck! And thanks for the prayers! I need them.
'why was it necessary' - I had been symptomatic for years and eventual tested with TSH at +6. Then discovered I had a 'huge' goiter. An ultrasound detected enlarged thyroid and lymph nodes. A subsequent RA ultrasound detected multiple nodules. The surgeon anticipated removing 'most' of my thyroid but during surgery decided to remove my entire thyroid and lymph nodes (radical modified neck dissectomy) for the 'biggest' goiter he had seen declaring, Thyroiditis - the surgery took 3 hours. No cancer detected.
'how did you do after surgery?'
I had an incision across the entire base of my neck and was pretty much incapacitated for the first week. They immediately put me on synthroid .125. Three weeks later my TSH was at +12 - I was totally bagged. Upped the meds to .15. 3 months later my TSH was at +4 and I still felt exhausted - upped the meds to .175. Three months after that my TSH was at .01 - I actually felt great but the endo informed me of potential for bone density deterioration, dosage adjusted to .15. Three months later my TSH was at 1.8 and I have been there for the last 4+ years with blood tests every six months. Until lately I have felt great (See my thread on Thyroid and Ferritin for more). A couple of things: a doctor friend urged me to put vitamin e directly on the incision and gently massage it daily - today you can hardly see my scar. I could talk, barely, after surgery - my voice returned to normal within a few months. I had to go for another neck surgery three months after for a 'goose-egged' sized lipoma on the side of my neck which was visible only after my thyroidectomy. I began gentle neck streches as soon as I could and still do them daily - four years later my neck is still a little stiff with some numbness.
'how did you do after surgery?'
I had an incision across the entire base of my neck and was pretty much incapacitated for the first week. They immediately put me on synthroid .125. Three weeks later my TSH was at +12 - I was totally bagged. Upped the meds to .15. 3 months later my TSH was at +4 and I still felt exhausted - upped the meds to .175. Three months after that my TSH was at .01 - I actually felt great but the endo informed me of potential for bone density deterioration, dosage adjusted to .15. Three months later my TSH was at 1.8 and I have been there for the last 4+ years with blood tests every six months. Until lately I have felt great (See my thread on Thyroid and Ferritin for more). A couple of things: a doctor friend urged me to put vitamin e directly on the incision and gently massage it daily - today you can hardly see my scar. I could talk, barely, after surgery - my voice returned to normal within a few months. I had to go for another neck surgery three months after for a 'goose-egged' sized lipoma on the side of my neck which was visible only after my thyroidectomy. I began gentle neck streches as soon as I could and still do them daily - four years later my neck is still a little stiff with some numbness.
all - Thanks for posting. I was just wondering what led all of you that has had a TT to that point.
pep88 - Thank you for sharing your sister's story. Very moving.
esdream4 - I'll be thinking about you Friday and praying all goes smoothly. Please keep us posted after your surgery. My TT isn't for almost three more weeks. I'm getting anxious about it more everyday. I go today to meet with the doctor that is performing the surgery and also to get all the paperwork filled out. I have about 40 questions so far on my list to ask him!
I just hope I'm doing the right thing, having my whole thyroid removed on the basis of highly suspicious cells & Hashi's. I don't have symptoms now and feel great and I'm concerned I'm going to take this thyroid out and it will be benign and there I'll be with no thyroid, whacked out, and for what? I know the rest of my thyroid is messed up, because I still have two nodules they didn't even to the Fine Needle Aspiration (FNA) on because it can only be done on four at a time. Sometimes I believe that it is cancer, and they just missed it with the FNA in those other nodules. I know others on here have posted that FNA can miss the cancerous cells. I guess, deep down, because of the way this whole thing was found (through an optional ultrasound of something totally unrelated), I believe it has to be cancer and I'm lucky it was found.
Oh, I need to quit rambling. esdream4 best wishes Friday. I'll be thinking about you. Post soon so we know how you're doing.
pep88 - Thank you for sharing your sister's story. Very moving.
esdream4 - I'll be thinking about you Friday and praying all goes smoothly. Please keep us posted after your surgery. My TT isn't for almost three more weeks. I'm getting anxious about it more everyday. I go today to meet with the doctor that is performing the surgery and also to get all the paperwork filled out. I have about 40 questions so far on my list to ask him!
I just hope I'm doing the right thing, having my whole thyroid removed on the basis of highly suspicious cells & Hashi's. I don't have symptoms now and feel great and I'm concerned I'm going to take this thyroid out and it will be benign and there I'll be with no thyroid, whacked out, and for what? I know the rest of my thyroid is messed up, because I still have two nodules they didn't even to the Fine Needle Aspiration (FNA) on because it can only be done on four at a time. Sometimes I believe that it is cancer, and they just missed it with the FNA in those other nodules. I know others on here have posted that FNA can miss the cancerous cells. I guess, deep down, because of the way this whole thing was found (through an optional ultrasound of something totally unrelated), I believe it has to be cancer and I'm lucky it was found.
Oh, I need to quit rambling. esdream4 best wishes Friday. I'll be thinking about you. Post soon so we know how you're doing.
My thyroid was removed because I had a goiter that had wrapped itself around my carotid artery and had moved my windpipe over one half inch.....I kept passing out, and the doctor kept telling me that I was depressed...Yeah, well, depression doesn't make anyone pass out...My daughter who is 25 now has a huge goiter, and is unable to get pregnant...I am not sure if hypothyroidism prevents pregnancy but would like to know.....
Thank you. Being a newbie... I'm trying to keep up with all of you!
FNA = Fine Needle Aspiration. Sorry, we're all guilty of it, using the acronyms... They stick a needle into your thyroid nodule and "asperate" a bit of it out so that they can test the cells. Worked for me, showed suspicious, but not for everyone. Sometimes it misses the cells that "are" suspicious or diseased.
Wow! Very powerful story. Right now - I'm a hog - hopefully I will grow.
To KJ5854 - To answer your question.... My TT is scheduled for friday. I have been told I have Toxic Multi-nodular Thyroid. I think the last sono count was about 20 nodules. I had the uptake scan done and 1 nodule was cold - or undetermined. My endo said it would be too invasive to do biopsy on ALL the nodules. Then he said that RAI was not an option for me. He said that they try not to give you too much - but since I have so many nodules - it probably wouldn't work and then there is the question of the 1 nodule. He said it was best for me to just have the whole thing removed and be done with any future problems. If I went for RAI - I would probably have to do it more than once and still end up having surgery if that one nodule grew or whatever. I don't know. We'll see!
Can anyone tell me ... What is FNA?
To KJ5854 - To answer your question.... My TT is scheduled for friday. I have been told I have Toxic Multi-nodular Thyroid. I think the last sono count was about 20 nodules. I had the uptake scan done and 1 nodule was cold - or undetermined. My endo said it would be too invasive to do biopsy on ALL the nodules. Then he said that RAI was not an option for me. He said that they try not to give you too much - but since I have so many nodules - it probably wouldn't work and then there is the question of the 1 nodule. He said it was best for me to just have the whole thing removed and be done with any future problems. If I went for RAI - I would probably have to do it more than once and still end up having surgery if that one nodule grew or whatever. I don't know. We'll see!
Can anyone tell me ... What is FNA?
Tell your sis that her courage is greatly admired!!!!!
Very encouraging story. Thank you for sharing it with us!
Yes, cherries. My sister just went through breast cancer. I'll attach her "story".
"DON'T HOG YOUR JOURNEY"
Don't hog your journey. The words penetrated me with a visceral impact. My mind raced. NBC's Hoda Kotb had just explained that she had met a man on a flight, who told her not to "hog her journey". He had said that her journey through breast cancer was hers to share with others, so that others may be helped. I was so stunned because, for the most part, I have hogged my journey. I, like Hoda, had been given the news that I had breast cancer. I had gone to my yearly gynecological exam and my doctor said, "you're 40, go get a mammogram." Within three days I had one.
I could tell by the technicians' reaction to my pictures that something was wrong. I rationalized that there was no way that anything could be wrong with me. I did everything right. I had been a professional athlete. My major in college had been combination of health and exercise science. I had been a complete health and exercise nut all of my life. Nothing could be wrong with me.
Within one week my world had been turned upside down. The doctor who had looked at my mammogram, and given me a subsequent ultrasound said, "you have to go straight to surgery." I was scared and confused and could find no way to tell anyone, but my immediate family.
Being an eternal optimist I figured that it would turn out to be nothing. After all, I had no discernable lump. My gynecologist had felt nothing, nor had I.
After the first surgery came the shocking news. It was cancerous. My surgeon told me that it was small, however, I had to schedule another surgery in order to clean up the area and test the lymph nodes.
Once again, I was optimistic.
I called my Mom who lives thousands of miles away and asked her to come out for the next surgery. As we ended our conversation, I asked, "Mom, what do I tell people about this?" She said "you don't have to tell them anything if you don't want to."
That's what I did. My husband, Brian, told me that I was in denial and needed to start telling people, but the more that I thought about how I had viewed others, in the past, with cancer, the firmer my resolve became not to tell anyone. I did not want people telling me how sorry they were for me, or treating me any differently. Most of all I did not want people telling my then, eleven year old daughter, Summer, how sorry they were to hear about her Mom. All she needed to know was that I was going to be fine. I wanted no comments from others.
I had the second surgery. They cut me open twice. Once for my lymph nodes and the other to take any remaining suspicious cells from my breast tissue. On site testing of my nodes showed no further cancer so they did not take the rest of them. I went home from that surgery happy. I put on my soccer clothes and took Summer to soccer practice and helped coach the team. One of the girls begged me to come play with them, as I would have done normally, but I had to say no. I was not even supposed to be on my feet after the surgery, let alone play soccer. It felt strange to hide the fact that I had just had a pretty major surgery, but I didn't want to tell anyone.
A week later, I was told by my surgeon that upon further examination of my Sentinal lymph node, it showed signs of microscopic metastasis. I would have to have undergo chemotherapy. That is, after another surgery to clean up my margins. In this case it means that they have to make sure that they take a certain amount of tissue between the last bad cell and the healthy tissue.
My Pet Scan a couple of days later was completely clean. However, breast cancer treatment protocol is to treat with chemo and radiation. This was to take place after my margins were clean.
Brian said that he needed to tell a few people at work about me. I did not want him to. He said that he had to tell his boss and I reluctantly gave my permission.
Two more surgeries were required to clean the margins and in between them I had begged the surgeon to just take the entire breast. She had a fit that I did not want her to replace it with anything. In the end she convinced me that if the margins were not clean after the fourth surgery, she would do as I wish.
They were clean. Yeah, I could now start chemo.
To this matter my husband then said, what are you going to do when your hair falls out? You'll have to tell people then." I did not know what I was going to do.
He also kept asking me what I was going to do with this experience. How was I going to help others if I couldn't talk about it? I had no idea. I just wanted to be healthy .
After the second round of chemo my hair started coming out in clumps. I thought that I would have to tell everyone because I was now wearing a wig. Instead, people told me how much better I looked. It was almost comical. I got the feeling that some people were speculating about what was going on with me, but I was not volunteering anything. I told my hairdresser and one friend who asked what was going on.
Through 4.5 months of chemo and 34 or 35 radiation treatments I never missed any soccer, volleyball, or basketball practices or games. I kept all appointments, lunches, parties, and fieldtrips. It wasn't too bad. I just wanted Summer always to know that I was fine and could do everything as normal. I worked out all through my treatment. Normalcy was so important. I wanted that for her and I needed it.
I know that there was gossip and rumors about me, but I wasn't ready to address them.
Now I'm through HOGGING MY JOURNEY, actually this has only been a small fraction of what I hope is to be a very long and happy journey. My life. I just realize that now I need to let other's know that in the case of my breast cancer none of my doctors ever felt a lump. Nor did I. It was detected by a MAMMOGRAM. Don't hesitate, or think it can't happen to you.
I still have not made sense of what has occurred. I read something the other day that said, yesterday is history, tomorrow is a mystery. I have today and I am thankful for it.
My hope is that someone will benefit from my journey. Please pass it on.
"DON'T HOG YOUR JOURNEY"
Don't hog your journey. The words penetrated me with a visceral impact. My mind raced. NBC's Hoda Kotb had just explained that she had met a man on a flight, who told her not to "hog her journey". He had said that her journey through breast cancer was hers to share with others, so that others may be helped. I was so stunned because, for the most part, I have hogged my journey. I, like Hoda, had been given the news that I had breast cancer. I had gone to my yearly gynecological exam and my doctor said, "you're 40, go get a mammogram." Within three days I had one.
I could tell by the technicians' reaction to my pictures that something was wrong. I rationalized that there was no way that anything could be wrong with me. I did everything right. I had been a professional athlete. My major in college had been combination of health and exercise science. I had been a complete health and exercise nut all of my life. Nothing could be wrong with me.
Within one week my world had been turned upside down. The doctor who had looked at my mammogram, and given me a subsequent ultrasound said, "you have to go straight to surgery." I was scared and confused and could find no way to tell anyone, but my immediate family.
Being an eternal optimist I figured that it would turn out to be nothing. After all, I had no discernable lump. My gynecologist had felt nothing, nor had I.
After the first surgery came the shocking news. It was cancerous. My surgeon told me that it was small, however, I had to schedule another surgery in order to clean up the area and test the lymph nodes.
Once again, I was optimistic.
I called my Mom who lives thousands of miles away and asked her to come out for the next surgery. As we ended our conversation, I asked, "Mom, what do I tell people about this?" She said "you don't have to tell them anything if you don't want to."
That's what I did. My husband, Brian, told me that I was in denial and needed to start telling people, but the more that I thought about how I had viewed others, in the past, with cancer, the firmer my resolve became not to tell anyone. I did not want people telling me how sorry they were for me, or treating me any differently. Most of all I did not want people telling my then, eleven year old daughter, Summer, how sorry they were to hear about her Mom. All she needed to know was that I was going to be fine. I wanted no comments from others.
I had the second surgery. They cut me open twice. Once for my lymph nodes and the other to take any remaining suspicious cells from my breast tissue. On site testing of my nodes showed no further cancer so they did not take the rest of them. I went home from that surgery happy. I put on my soccer clothes and took Summer to soccer practice and helped coach the team. One of the girls begged me to come play with them, as I would have done normally, but I had to say no. I was not even supposed to be on my feet after the surgery, let alone play soccer. It felt strange to hide the fact that I had just had a pretty major surgery, but I didn't want to tell anyone.
A week later, I was told by my surgeon that upon further examination of my Sentinal lymph node, it showed signs of microscopic metastasis. I would have to have undergo chemotherapy. That is, after another surgery to clean up my margins. In this case it means that they have to make sure that they take a certain amount of tissue between the last bad cell and the healthy tissue.
My Pet Scan a couple of days later was completely clean. However, breast cancer treatment protocol is to treat with chemo and radiation. This was to take place after my margins were clean.
Brian said that he needed to tell a few people at work about me. I did not want him to. He said that he had to tell his boss and I reluctantly gave my permission.
Two more surgeries were required to clean the margins and in between them I had begged the surgeon to just take the entire breast. She had a fit that I did not want her to replace it with anything. In the end she convinced me that if the margins were not clean after the fourth surgery, she would do as I wish.
They were clean. Yeah, I could now start chemo.
To this matter my husband then said, what are you going to do when your hair falls out? You'll have to tell people then." I did not know what I was going to do.
He also kept asking me what I was going to do with this experience. How was I going to help others if I couldn't talk about it? I had no idea. I just wanted to be healthy .
After the second round of chemo my hair started coming out in clumps. I thought that I would have to tell everyone because I was now wearing a wig. Instead, people told me how much better I looked. It was almost comical. I got the feeling that some people were speculating about what was going on with me, but I was not volunteering anything. I told my hairdresser and one friend who asked what was going on.
Through 4.5 months of chemo and 34 or 35 radiation treatments I never missed any soccer, volleyball, or basketball practices or games. I kept all appointments, lunches, parties, and fieldtrips. It wasn't too bad. I just wanted Summer always to know that I was fine and could do everything as normal. I worked out all through my treatment. Normalcy was so important. I wanted that for her and I needed it.
I know that there was gossip and rumors about me, but I wasn't ready to address them.
Now I'm through HOGGING MY JOURNEY, actually this has only been a small fraction of what I hope is to be a very long and happy journey. My life. I just realize that now I need to let other's know that in the case of my breast cancer none of my doctors ever felt a lump. Nor did I. It was detected by a MAMMOGRAM. Don't hesitate, or think it can't happen to you.
I still have not made sense of what has occurred. I read something the other day that said, yesterday is history, tomorrow is a mystery. I have today and I am thankful for it.
My hope is that someone will benefit from my journey. Please pass it on.
"Choke" cherries? :-)
I had a TT in September '07 for cancer. It was fluke finding the nodule on a CT scan done for something else. No real thyroid symptoms/issues that I knew of at the time. I had a FNA which said possible cancer, so I saw two doctors and both said surgery. I had 1/2 taken out, pathology in the operating room, then they removed the remaining half.
It's been a journey. And I'm still on it. But the surgery was the smoothest part. I was not in love with hypo-hell... don't want to go back anytime soon, but hey when you compare it with other kinds of cancer (chemo, radiation, hair falling out, vometing constantly, etc...)It was a bowl of cherries!
It's been a journey. And I'm still on it. But the surgery was the smoothest part. I was not in love with hypo-hell... don't want to go back anytime soon, but hey when you compare it with other kinds of cancer (chemo, radiation, hair falling out, vometing constantly, etc...)It was a bowl of cherries!
I had a big honkin goiter that dropped below my sternum and it turned out to have cancer.I too had 2 different surgeries. the partial is when they found the goiter had dropped below my sternum and they couldnt get it out. with opening up my sternum. So I had the second surgery where they opened my sternum to get out the tennis ball sized thing and it had the cancer in it.It took along time for the sternum to heal up btu the other part recovered well. glad its gone ,dont miss it and I feel better now than I did before the surgery.
Love Venora
Love Venora
I had TT because of hurtle cells on FNA. No cancer on FNA. I have Hashi's and so they decided to take the entire thyroid out because of my goiter. After TT, found it was cancer (papillary), but contained, so no RAI (at least not yet). I would not have had my thyroid removed if it hadn't had hurthle cells. I have been with a goiter for 15 years and could have gone longer - anything but surgery! However, the surgery wasn't bad and finding out that I caught the cancer in the early stages was well worth it. If I had waited, well, I don't think about it.
I had my TT done 12/21/07 due to Papilary cancer I did fine with the surgery! I went home the next day!! If you have some discomfort they will give you something to make you comfortable!
My cancer was first dx. for FNA due to a nodule. I have never had thyroid problems in the past.
Joni
My cancer was first dx. for FNA due to a nodule. I have never had thyroid problems in the past.
Joni
I had a TT in Dec 2006 based on FNA result of suspicion for papillary carcinoma and a diagnosis of Graves disease. I had 4 cold nodules, only one that was cancercous. But because of my experience, several of my sisters had their thyroid checked. One sister just had a TT in Nov 07. Turns out she had the exact same type of thyca as I did. She also had 4 nodules and only one cancerous. I think her FNA came back okay, but because of her thyroiditis and my history of thyca, she elected to do the TT, My sister who is 12 years older than I am, actually recovered better than I did after surgery. The Graves disease I had cause a few complications, one being hypocalcemia. To me the hardest part about a TT is not the surgery itself, but learning how to live without a thyroid and getting your meds dosage to the best level.
I had a suspicious nodule and, at the time, no family history of thyroid cancer. I was scheduled to only have the right lobe removed but my surgeon and I agreed that if the nodule contained cancer the entire thyroid was to come out.
They did find cancer but not until I was already in the recovery room. Over the course of the next 12 months three of my sisters had TTs because of thyroid cancer, another had precancer, and my teenage daughter had precancer. I opted to have the left lobe removed then. Good thing I did too because a few years later I had a cancer recurrence and had to have RAI.
(You can't have successful RAI for cancer with part of your thyroid remaining)
All of my sisters and my daughter had Hashi's (I do not). The partial thyroidectomy was just as involved as a full TT. If I had known then what I did now I would have just had the TT at first but - who knew!
I did not have a FNA - just saw the nodule and had a bad feeling about it. Two of my sisters opted for the FNA which showed no cancer - yet both of them DID have cancer.
They did find cancer but not until I was already in the recovery room. Over the course of the next 12 months three of my sisters had TTs because of thyroid cancer, another had precancer, and my teenage daughter had precancer. I opted to have the left lobe removed then. Good thing I did too because a few years later I had a cancer recurrence and had to have RAI.
(You can't have successful RAI for cancer with part of your thyroid remaining)
All of my sisters and my daughter had Hashi's (I do not). The partial thyroidectomy was just as involved as a full TT. If I had known then what I did now I would have just had the TT at first but - who knew!
I did not have a FNA - just saw the nodule and had a bad feeling about it. Two of my sisters opted for the FNA which showed no cancer - yet both of them DID have cancer.
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