Toatl Thyroid Removal with Papillary Carcinoma

DebbyS

Hi,

On Dec. 3rd just under went total thyroid removal.
This is my story and would appreciate replies to my concerns:

Sept. 09 thyroid scan revealed nodules on both thyroids. Was then sent to a surgeon.
He did a scan guided needle biopsy on the largest solid tumor on the left side only,
report came back benign. But surgeon said regardless of any report I had to have a total
because there were too many solid tumors. Scheduled surgery Dec. 3rd.

Surgery day. Toatl thyroidectomy. No problems as of yet. Family and myself was told no cancer. HAPPY! Went for a follow up Friday, week after surgery, I am fine and then he told me that the final pathology report said Papillary Carcinoma. SHOCKED!
He said it was very small amount (3.5mm), in the right gland(FNB was on left only)not too worry it was all gotten by the thyroid removal. Did not recommend anything else.

My question is: Should I be worried or relieved?


Debby

gailaj

Similar experience, except....
Hi Debby,

I had a similar experience, except that the fine needle biopsy had come back positive before the surgery, which also was a total thyroidectomy, back in March 2008. But my nodule was also small (8mm was estimated before surgery, after surgery it appeared to be even smaller after blood flow was removed). And I did not have lymph node involvement, no followup treatment either (no RAI, no radiation....), except of course getting the synthroid dosage dialed in at the right level...

So all I can tell you is that for me they have recommended yearly checkups and ultrasounds of the area, just to make sure nothing comes back, but I was told it was extremely unlikely that this will happen. But I know how you feel, it's hard to take this news calmly after hearing the "c word" in any context! (I've had two skin cancers, melanoma and basal cell, and felt the same way....they say don't worry, but you always do.....)

Wishing you a healthy New Year -- Gail

lori d

sounds like me - i heard
sounds like me - i heard this after... as a "fluke" in removing the r/s of my thyroid in conjunction to the ismus - 7 days later at suture removal - "papillary carcinoma. 4 mm."
you could have knocked me over with a feather!
had completion thyroidectomy 5 weeks later - 11/10/09.

but now i feel like i am loosing my mind.. i cant remember things - dates/appointments etc.
or even why i drove to the supermarket - forgetting the list i even made! not to mention i am edgy.. i want to chew people up and spit them out! the dog even runs when i come around!
and i feel malaise - like a sadness, which is difficult since normally I am a very happy, funny person... there's like an underlying tug -- it's difficult to explain...
i am hoping this will calm with some therapy - and of course vodka (kidding!)

do you feel like this since? or am i the only person loosing my mind!

DebbyS

lori d said:

sounds like me - i heard
sounds like me - i heard this after... as a "fluke" in removing the r/s of my thyroid in conjunction to the ismus - 7 days later at suture removal - "papillary carcinoma. 4 mm."
you could have knocked me over with a feather!
had completion thyroidectomy 5 weeks later - 11/10/09.

but now i feel like i am loosing my mind.. i cant remember things - dates/appointments etc.
or even why i drove to the supermarket - forgetting the list i even made! not to mention i am edgy.. i want to chew people up and spit them out! the dog even runs when i come around!
and i feel malaise - like a sadness, which is difficult since normally I am a very happy, funny person... there's like an underlying tug -- it's difficult to explain...
i am hoping this will calm with some therapy - and of course vodka (kidding!)

do you feel like this since? or am i the only person loosing my mind!

Actually I feel better since
Actually I feel better since surgery than I have in a year.
Of course this may change, I am 10 days out from surgery but
I hope I feel better each day. I just started my synthoid (100mcg)
2 days ago and I hear it takes time to get this med adjusted
to your body.
Maybe your meds aren't adjusted well yet? Calcium levels?
Have you talked to your dr?

My sister in law who is on synthoid made me make sure too that I
got brand synthoid. She said the generic on her had no impact on how she felt
also she started losing her hair. Just a thought.

I do hope you start feeling better.

Debby

bzufall

lori d said:

sounds like me - i heard
sounds like me - i heard this after... as a "fluke" in removing the r/s of my thyroid in conjunction to the ismus - 7 days later at suture removal - "papillary carcinoma. 4 mm."
you could have knocked me over with a feather!
had completion thyroidectomy 5 weeks later - 11/10/09.

but now i feel like i am loosing my mind.. i cant remember things - dates/appointments etc.
or even why i drove to the supermarket - forgetting the list i even made! not to mention i am edgy.. i want to chew people up and spit them out! the dog even runs when i come around!
and i feel malaise - like a sadness, which is difficult since normally I am a very happy, funny person... there's like an underlying tug -- it's difficult to explain...
i am hoping this will calm with some therapy - and of course vodka (kidding!)

do you feel like this since? or am i the only person loosing my mind!

Sound to me like you need to
Sound to me like you need to have your levels checked. You may need a higher dose of meds. I was feeling the same way but now that my meds are leveled out again, I feel much better.

Tamika30

I am glad to hear that your surgery went well.
I do not mean to scare you. And maybe you can offer me some words of courage. I had my total thyroid removed this past June. I had to have two surgeries. I had four biospies and aspiration two years prior which all the tests were negative. It was not until I said in June 2009 to take it out because the cyst kept growing. It was not until after the first surgery that they found the papillary cancer and I had to go in for the entire removal one week later. Now in this past October I had a ultrasound done and found a hypoechoic nodule in my neck where the thyroid was. A biosy was done came back negative due to insufficient of material submitted. My doctor said that since they did not find anything that there was no sense in redoing the test. I wish he had redone the test. He said that it could be scar tissure. Just recently I started having pain in my neck up to right ear. He just suggested I take muscle relaxer and pain meds. I am not sure what to do. I am not sure if the cancer has returned. They said my blood shows I have no thyroid left, but what if something is there and will no be a thyroid tissue but a tumor. I am seeking a second opinion next week and will let you know what happens and what to look for and do if you notice some changes after surgery. I wish you the best of luck.

DebbyS

DebbyS said:

Actually I feel better since
Actually I feel better since surgery than I have in a year.
Of course this may change, I am 10 days out from surgery but
I hope I feel better each day. I just started my synthoid (100mcg)
2 days ago and I hear it takes time to get this med adjusted
to your body.
Maybe your meds aren't adjusted well yet? Calcium levels?
Have you talked to your dr?

My sister in law who is on synthoid made me make sure too that I
got brand synthoid. She said the generic on her had no impact on how she felt
also she started losing her hair. Just a thought.

I do hope you start feeling better.

Debby

Calcium, Magnesium and Potassium Too High
Hi,

Just a follow up. My dr. has me taking weekly blood tests
monitoring my calcium, mag, potassium levels. They have been
running high since surgery. Last weeks results were:

Calcium= 10.4 Magnesium= 2.5 Potassium= 5.0

All higher than the weeks before. Will see my dr. again on Jan 15th

Has anyone had this problem and what is the resolution?


Debby

Survivor73

lori d said:

sounds like me - i heard
sounds like me - i heard this after... as a "fluke" in removing the r/s of my thyroid in conjunction to the ismus - 7 days later at suture removal - "papillary carcinoma. 4 mm."
you could have knocked me over with a feather!
had completion thyroidectomy 5 weeks later - 11/10/09.

but now i feel like i am loosing my mind.. i cant remember things - dates/appointments etc.
or even why i drove to the supermarket - forgetting the list i even made! not to mention i am edgy.. i want to chew people up and spit them out! the dog even runs when i come around!
and i feel malaise - like a sadness, which is difficult since normally I am a very happy, funny person... there's like an underlying tug -- it's difficult to explain...
i am hoping this will calm with some therapy - and of course vodka (kidding!)

do you feel like this since? or am i the only person loosing my mind!

You are not alone...nor are you loosing your mind
I too fee like crap...
I have never in my life forgotten things like Dr's appt's, items to look into at work, and I'm in Management...it's my job to remember to deal with things...LOL.
I of course am extremely bitchy...I will make an argument out of nothing...and I have no idea why...I'm not mad or upset, but the words coming out of my mouth are aweful.

I am normally the life of the party as well...always quick witted, etc. I am on the far end of the outgoing extravert so it's impossible to stop me from saying some funny comment...the problem is that I am starting to **** out loud without holding back...

I know what you mean about the malaise...be aware that with a diagnosis of cancer, it is normal to have some depression issues...they may not ever become a serious issue, but be aware and watch for them. Get help if you notice them & they don't go away.

Some signs of Depression are:
Disturbed thinking
Feelings of sadness or irritability
Loss of interest or pleasure in activates once enjoyed
Changes in weight or appetite
Changes in sleeping patterns
Feelings of guilt, hopelessness or worthlessness
Inability to concentrate, remember things or make decisions
Fatigue or loss of energy - withdrawal
Restlessness or decreased activity noticed by others
Complaints or physical aches and pains for which no medical causes can be found
Thoughts of suicide or death
Feeling overwhelmed

Of course the biggest problem with half of these symptoms are they are the same symptoms that you will get from not enough Synthroid...so how we will ever know what came first...the chicken or the egg. LOL.

Anyways, know that you are not alone...keep smiling.

I had surgery in July & have increased by Synthroid 2 times so far, every 2 months...waiting for the next test to get another increase...I hope...

LG.

Redneckimber

Hi Debbie,

I would say you should definitely be relieved! You should feel good knowing that God was looking out for you thru that Dr. that took out your entire thyroid since it had cancer in it! That was really a blessing since the dr. didn’t think it had cancer, so I would say if you believe in God, give thanks, that Dr. did you a favor, it was taken out before it was able to metastasise (spread to other areas)! Since it did not spread, there is nota need for any further cancer related treatment. Trust me, mine spread into my parathyroid and some of my lymph nodes and I had to undergo the Radio Active Iodine Treatment and OMG was it hell! I was extremely ill from it not to mention the isolation and everything else that goes with it. So, my advice is, be happy that it was caught in time and focus on a positive mindset, exercise and living a healthy life. You are now a cancer survivor! You will never look at life the same.. Good luck with your thyroid replacements. That will be the only thing you will need besides periodic scans and blood work!

Cheated

Tamika30 said:

I am glad to hear that your surgery went well.
I do not mean to scare you. And maybe you can offer me some words of courage. I had my total thyroid removed this past June. I had to have two surgeries. I had four biospies and aspiration two years prior which all the tests were negative. It was not until I said in June 2009 to take it out because the cyst kept growing. It was not until after the first surgery that they found the papillary cancer and I had to go in for the entire removal one week later. Now in this past October I had a ultrasound done and found a hypoechoic nodule in my neck where the thyroid was. A biosy was done came back negative due to insufficient of material submitted. My doctor said that since they did not find anything that there was no sense in redoing the test. I wish he had redone the test. He said that it could be scar tissure. Just recently I started having pain in my neck up to right ear. He just suggested I take muscle relaxer and pain meds. I am not sure what to do. I am not sure if the cancer has returned. They said my blood shows I have no thyroid left, but what if something is there and will no be a thyroid tissue but a tumor. I am seeking a second opinion next week and will let you know what happens and what to look for and do if you notice some changes after surgery. I wish you the best of luck.

Lymph Nodes?
Tamika,

When you had your original diagnosis, was there any mention of checking to see if the Cancer had spread to your lymph nodes? I don't want to concern you for no reason, but I have to be honest. I had a huge goose egg in my throat for years, which I ignored. Never had pain, never had trouble swallowing, forgot it was there unless I looked in the mirror. However, what finally prompted me to see a doctor was that suddenly I was having pain that I'd never had before. It's a good thing I went when I did because not only did I have the diagnosis of Papillary Thyroid Cancer, it had spread to my lymph nodes. Fortunately, of the 14 lymph nodes they removed, only one tested positive for Cancer.

I only tell you this because the pain I began having was similar to what you are describing. The mass in my throat was on my right side and though it had never caused pain before, suddenly I was having pain on my right side of my neck, up to my ear, sort of behind my head, and down into my collarbone area. When I looked online for a diagram of lymph nodes and saw they were in all those places, I knew I couldn't put off the doctor any longer. Also, when I try to lay on my pillow at night, on my affected right side, it would feel like I had pulled a muscle in my neck or something, like I was trying to stretch my neck too far just by laying on it.

My concern with you is that if they did not check your lymph nodes at the time, could there have been Cancer there that they did not get? Again, I really really don't want to scare you or cause panic, but I wanted to relay my experience so that you can seek the best possible care. Of course, it's completely possible that you just slept on it wrong or pulled it somehow or that it's some other fluke thing. But, if the symptoms do not go away or worsen, I would definitely speak to an Endo doctor or Oncologist to get further recommendations. Thyroid Cancer is bad enough - you do NOT want it in your lymph system as then it could be spread to other parts of the body more easily. Don't let the symptoms go on too long.

I pray you will have no further complications, but please do listen to your body, so that you can make sure you are okay.

andreapj

lori d said:

sounds like me - i heard
sounds like me - i heard this after... as a "fluke" in removing the r/s of my thyroid in conjunction to the ismus - 7 days later at suture removal - "papillary carcinoma. 4 mm."
you could have knocked me over with a feather!
had completion thyroidectomy 5 weeks later - 11/10/09.

but now i feel like i am loosing my mind.. i cant remember things - dates/appointments etc.
or even why i drove to the supermarket - forgetting the list i even made! not to mention i am edgy.. i want to chew people up and spit them out! the dog even runs when i come around!
and i feel malaise - like a sadness, which is difficult since normally I am a very happy, funny person... there's like an underlying tug -- it's difficult to explain...
i am hoping this will calm with some therapy - and of course vodka (kidding!)

do you feel like this since? or am i the only person loosing my mind!

Total Thyroid Removal with Papillary Carcinoma
Hi Lori,
Some of what you describe looks like hypothyroidism. Are you taking thyroid replacement (e.g. Synthroid)? If so, perhaps your dosage is too low. Will you have RAI? Are you on a low iodine diet and/or gone off thyroid medicine? Those symptoms could also occur if you are off medicine altogether. My suggestion is to give you endocrinologist a call.

JStroud

Total thyroidectomy
Hi..I would like to say that right now I understand how everyone feels in here. I had routine blood work and they found my levels were to low making me have hypothyroidism. My doctor wasn't able to find out why...but he sent me for a thyroid ultrasound which is done through nuclear sciences. They found a cold nodule which usually signifies cancer. I was then referred to a surgeon who did an ultrasound guided biopsy which came back positive for cancer. This was on my left thyroid and it was papillary and follicular cancer cells. I went into the hospital in August to have my left thyroid removed and while I was in surgery they sent a part of the right to be checked for cancer. They didn't remove it because the lab said it was negative for cancer. On my followup with the surgeon he said they sent the biopsy away and unfortunately it came back with cancer which was missed by the local lab. I then went in again for surgery to have the right side removed. I currently am on .1 mg ( metric)of Eltroxin. I had blood work done four weeks after the last removal and my doctor says that I am now hyperthyroid, but that that is where they want me to be. I go again for blood work for my oncologist on Jan 15th and then to see him on the 26th. He has already referred me to see a radiologist to have the I131 (radioactive nuclear therapy)which as of yet I have no date for. In the meantime, I have done lots of reading and spoke with a woman that has previously gone through all of this last year. Even though my doctor says my levels are where they want them at this time, I find that I get very emotional and irritable. I also have no appetite (but not losing any weight)and find it difficult to get my proper sleep. I get almost like waves of fatigue that hit me but work myself through them so I can go to bed at a half decent time. I have been on Wellbutrin (antidepressant) for a long time, so I can just imagine if I didn't have that. I would be an absolute basket case. I have to wonder though, if currently it is just the stress of having cancer combined with the two surgeries in two months or if my thyroid medication isn't right. I am hoping to get more answers from this forum as well as my oncologist on the 26th. I know that all of this will pass and I can get on with an almost normal life but for now things are not what I would like them to be. I guess anybody that has heard the "C" word knows what I mean. I also thank God every day that I had the type of cancer that is easily treated. Will keep this forum informed on my progress as I know it can help others.

Perstephanie

lori d said:

sounds like me - i heard
sounds like me - i heard this after... as a "fluke" in removing the r/s of my thyroid in conjunction to the ismus - 7 days later at suture removal - "papillary carcinoma. 4 mm."
you could have knocked me over with a feather!
had completion thyroidectomy 5 weeks later - 11/10/09.

but now i feel like i am loosing my mind.. i cant remember things - dates/appointments etc.
or even why i drove to the supermarket - forgetting the list i even made! not to mention i am edgy.. i want to chew people up and spit them out! the dog even runs when i come around!
and i feel malaise - like a sadness, which is difficult since normally I am a very happy, funny person... there's like an underlying tug -- it's difficult to explain...
i am hoping this will calm with some therapy - and of course vodka (kidding!)

do you feel like this since? or am i the only person loosing my mind!

I'm exactly like that when
I'm exactly like that when my thyroid is underactive.