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Had 1/2 removed, scared to remove the other

Posts: 1
Joined: Jul 2002

My name is Felicia. I am a 37yo married (today is 13th anniversary!) mother of 2 (7&10yo). While having an MRI last July of my c-spine, a nodule on my thyroid was accidently found. I went for an ultrasound and confirmed it solid, then for a radioactive test and found it to be "Cold", finally for a FNA and it came back benign. My ENT told me to wait six months and then we will recheck it. I said no, if it doesn't belong there, take it out. In November 2002 I went in for surgery to remove the right lobe and isthmus. They sent it up to pathology during surgery and it was found to be benign, so they sewed me up. They sent my nodule (or slides) to University of Penn for further review and three weeks later (yes, 3 weeks!) my ENT told me I have follicular varient of papillary cancer. He then said I needed to have the other half removed.

Since my mother was diagnosed with breast cancer in early 2002, I knew how important 2nd opinions were, so I went for three 2nd opinions. The most important one was Memorial Sloan Kettering in NYC. I met with a thyroid specialist who said the my nodule was 1.7cm and generally they only remove 1/2 lobe when a nodule is 1.5cm or less. He said he would not remove the other lobe as the .2cm size is not worth the risk of further surgery. He said just to have scans of the lobe and watch it 2 times a year. My pathology report stats my cancer was circumscribed, no vascular invasion and clear margins

I had an endo who felt the same way but just switched to a new one, closer to my home and he feels differently.

My new endo said I do need to have the other lobe removed, but it will be done without surgery - meaning he wants to give me a lobectomy with I131. From what I thought, I would need I LARGE dose of it to kill off an entire lobe and wouldn't that be dangerous to me?

I was fine with the thought of leaving the other lobe in, but am now thinking maybe I should have the other half removed.

Posts: 27
Joined: Mar 2003

Since you had the right lobe removed and Cancer was found I would not hesitate to remove the other half. I had the same lobe removed and they found the Papillary Carcinoma. It was sent to the lab immediately and he held off on closing me up. The lab called amd confirmed that it was Cancer. The other lobe was then removed in the same surgery. This ended the source that held the Cancer. I had the Radioactive Iodine treatment and it was the highest he could go. Last summer I had to have another one as activity was found in the Thyroid area. I would not hestitate to have the treatment and be ahead of the game. I wait yet for the day that the Doctors tells me I am O.K. The first time I had two opinions and the second time I had three opinions. I am fine from the treatments and know that I am ahead of the game. Good luck at your choice. It will be four years since surgery Nov. 2 Cindy

Posts: 2
Joined: Mar 2004

I was just diagnosed with papillary carcinoma in the left thyroid. they found this from an fna and is is less than 1 cm so i am being told they will remove the portion of the left only. I think it's called a lobectomy or hemithyroidectomy and isthumusthectomy. wondering if anyone else has had this and the after effects of surgery relating to hormone treatments, weight gain, scar, etc. meeting with a few diff surgeons next week but seeing a lot of diff info on the web. some of it pretty scary. i want to make sure to ask all of the right questions.

Posts: 2
Joined: Mar 2004

In 1992 I had half my thyroid removed & it was papillary & follicular cancer, so I had a 2nd surgery to remove the other half. It had a nodule in it also. I take .15 sythroid & have no problems with it. The scar looked like bad at first, but it will heal & most people never even notice it now unless I tell them. I almost can't even see it. I lost my voice for a few weeks, but that came back. I also took a radioactive pill to kill off any peices that might have been missed, so that it doesn't come back. That doesn't make you lose your hair either. My sister had her's taken out in 1984, when she was 21 and we are both cancer free. The Dr told me if you can pick a kind of cancer, this is the one you'd pick. I didn't gain any extra weight. I am now 46 & she's 42. If you would like to talk to either of us further, just let me know. Good luck & I think everything will turn out fine! Patti

Posts: 3
Joined: Jul 2001

I am amazed! Wedding anniversaries are just not good days for people with thyroid problems! On my 8th anniverary, I was told the exact same things that you were told. I underwent surgery, was told the tumor was benign but to wait for the final. The pathologist sent the sample to M.D.Anderson in Houston. It came back as Hurthle Cell Carcinoma. I did have the other lobe removed. I eventually did have 3 RAI treatments. I take synthyroid daily. (They gave me a higher dose hoping to control my cancer---it did not work. It is now in both lungs.) Having been in your position, I would take as much treatment as they would give me---total removal, RAI, etc. along with blood test and scans regularly. My original dr. did not see any use in a followup RAI ablation or direct beam radiation. Too bad that I was too trusting to get a second opinion until it was too late. By the time I got a second,the cancer had metastasize to my lungs. Oh, and by the way, on my 10th anniversary is when I found out that the cancer had spread to my lungs. Needless to say, I have had better anniversaries!! Let me know how things are going. Cathy Leavell

wolfclantree's picture
Posts: 7
Joined: Feb 2003

hi i found out i had tyroid cancer in jan 2003
37 yeaers old now 38
like you same story
i have had two surgerys one in jan one in jun
i had trouble swalling and couldnt eat
they put me through so many test couldnt find anything
then during a barium swallow test they saw it the tumour pressing into my throat
was told if i didnt get it out i would quit breathing
so i had the uptake and it still didnt tell me anything
then i had the needle aspiration test
and it came back of course beinign
was told 99.9 percent that was ok no cancer
yeah right

had surgery to remove one side of the thyroid
and they ran the freeze check it came back ok
well 3 days later in my surgeons office
which i was alone in the room cause we all thought it was ok
he gets the paper faxed to him from pathology
and hangs his head down and i new
well off to many doctors
i have been through so many
4 i think
and still dont like the one i have
and dont agree with them on anything there doing
but none the less
i had to have a second surgery in jun 2003
cause i had a ultra sound in may and they again said i was fine
well from the time i had surgery in jan
till may
i had a new tumour grow
very small but of concern of course
and so i had to go back in same place cut again
i am so mad it is unreal lol
so did that survived didnt think i could
i dreaded it the pain
i have trouble with pain and swalling since then
but i would have it removed
to be safe
you no this may be my only opinion in here i dont no
but i feel like no one no's what they are doing with this kind of cancer
i feel like we all are saying the same things
and not getting anywhere at all

i have in the last month had a lymp node swollen under my chin
and it comes and goes
i was told it was just probably a cold
what do you guys think
well i ended up on atibiotics
and have been sick for 2 weeks
fever real sick
it was a viral infection they found it by blood test
now my throat is bothering me
and i too am scared sometimes of what to do
i am waiting for my results on my blood test for the month
i get my blood drawn every 4 weeks and on the 5 th week i see my endro doc
so i go the 19th to see her
i am on levoxyl 112 mg
and we are still trying to get it right
does anyone take that kind and what is your dosage
i feel sick alot with it
well sorry so long a post
saw yours and wanted to let you no i feel the same way
and i had the samething happen to me
so even if it sucks which it does
please have the surgery and have it removed
you can email me anytime
at wolfclantree@aol.com

Posts: 1
Joined: Mar 2003

Hi, wanted to reply to your comments. I was diagnosed with thyroid cancer just after Christmas 2001, and by March 2002 I was under the knife, so to speak. I found my lumps, and for over three years I went to doctor after doctor telling them about the lumps. Going through test after test, being put on antidepresants, and looked upon as a crazy person.
Finally I went to my health care provider, through my insurance, and threw a fit until the doctor agreed to do an ultrasound, the only test I had not received, or had ever asked for. I paid for numerous tests out of pocket,many very expensive tests, but later found out that an ultrasound was the only way to detect thyroid cancer.
I am now taking 112 levoxyl x2 (124)and they still can't get it straight. I have hot flashes at night so bad that I have not had a full nights sleep since my surgery.
I spoke with my endo about pain in my chest and throat and he said it was a hard surgery, he removed seven tumors, my thyroid and lymphnodes on the right. He said it should hurt. But you see its been long enough now that I don't beleive I should still hurt from the surgery, and it is a different pain than what I felt after surgery. I have pain in my throat (neck) area and in my chest. I am congested all the time and I can't speak without loosing my breath. I undergo numerous blood tests, still, but I am so afraid to push the pain issue.
Because I had a needle biopsy prior to surgery, and was told the tumors were malignant, I just have the fear that haunts me; what if they didn't get it all, or worse yet, what if it spread because of the biopsy.
Does this awful fear ever go away?
Do the nightmares ever go away?
And do people ever stop looking at you as though they were trying to look inside?
I am 53 now, and single. My boyfriend of 12 years told my parents he'd wait for the outcome of the cancer before we decided if we would marry. Needless to say, he is not someone I would now marry, I do still think of marriage, and wonder if it can
happen at this point?
I don't think I will ever run out of questions, but the one fact I am certain of is that Doctors don't know about this cancer. Everyone who had anything to do with my diagnosis, surgery and recovery said something different from the previouls nurse, doctor health care provider. They just are not sure. The doctor who told me I had cancer I will never forget, he said "you have thyroid cancer, and i just don't know what to tell you, I need to go on-line and see what I can find out" I think he was the only honest person I delt with. I am not happy with my endo. but is anyone ever happy? We disagre on everthing, and I don't understand since I know what I am going through, I feel the pain, and I know where I have been. Janet

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