1/2 verses whole Thyroid.. Help!

[tmdescovich]

Hello,
I have been diagnosed with Papillary Carcinoma. A 1.3cm tumor in the right lobe of my Thyroid. Just left the surgeons office. His suggestion is take the entire thyroid but if I choose he would only take half. To me that means, no RAI treatment and no meds for the rest of my life. However, there is a chance the cancer will return in the other side. Is there anyone out there that has has to make this choice? Would you do it the same again????
thank you in advance for your help..

[Andros]

Hello,
I have been diagnosed with Papillary Carcinoma. A 1.3cm tumor in the right lobe of my Thyroid. Just left the surgeons office. His suggestion is take the entire thyroid but if I choose he would only take half. To me that means, no RAI treatment and no meds for the rest of my life. However, there is a chance the cancer will return in the other side. Is there anyone out there that has has to make this choice? Would you do it the same again????
thank you in advance for your help..

Oh, my...............I am sorry about this but I am grateful you were diagnosed.

My dear, any thyroid tissue left behind grows back. That is one reason why a patient with thyroid cancer has to have RAI and also the doctor has to keep that patient's TSH suppressed, very suppressed so the cancer does not grow back.

I can't nor would I tell you what to do but I can guarantee you I would want it all out. I only had Graves', no cancer and I wanted it all out and I have no regrets.

Others will be along with their input. Bottom-line is you have to try and figure out what is best for you.

[Lovlkn]

That's a tough choice.

I never heard of anyone with thyroid cancer having it again if they choose a TT and the RAI.

Daily replacement is not a big deal and it might be you need it anyway with just 1/2 a thyroid.

[tmdescovich]

Thank you all for your input. I wonder if there is anyone out there that has left half in after the same diagnosis. And if they have had a good or bad experience?

[Andros]

Hello,
I have been diagnosed with Papillary Carcinoma. A 1.3cm tumor in the right lobe of my Thyroid. Just left the surgeons office. His suggestion is take the entire thyroid but if I choose he would only take half. To me that means, no RAI treatment and no meds for the rest of my life. However, there is a chance the cancer will return in the other side. Is there anyone out there that has has to make this choice? Would you do it the same again????
thank you in advance for your help..

Please read this; it may help you w/ decision-making process...........

http://www.thyroidmanager.org/Chapter18/18-cancerframe.htm

[nasdaqphil]

Personally I would opt to have the entire gland yanked and would not want to deal with worrying about it recurring. If it's out you won't ever have to worry about it again and can easily live life on meds.

Im yet to find a person to come by these boards who has survived just fine with only a half a thyroid. Usually the other half either craps out or gets nodules or something requiring meds or surgery. The surgeon is probably right in my opinion. You just don't mess with cancer - at least that's my thoughts about it.

My mother had a half-thyroidectomy and she's been on meds ever since. Her other half just could not keep up with demand as is the case many times with lobectomies. If your worried about taking meds then get the whole thing yanked because you will probably end up on meds eventually anyway and at least this way, you won't have to worry about cancer on top of taking meds.

Of course it's your choice and not an easy choice to make. Do some research and ask family and friends.

[Lovlkn]

arizonamom had 1/2 her thyroid removed in February due to nodules - testing was inconclusive as to whether they were cancer or not.

She is now on replacement which proves it could happen that you are on replacement for life with just 1/2 thyroid.

With the pathology report not sure if they were cancer or not she now has to live with that, take meds for the rest of her life and if it were me I would try to keep TSH at 0.

[nasdaqphil]

...It's like removing one lung and expecting to be able to run as far and as fast as you did with two....it just doesn't happen most of the time.

The crummy part of the half thyroid option is that is usually takes a while to crap out so you'll be fine for a few months typically, maybe even a few years and just when you think the whole ordeal is over with you find yourself having to go in to get meds for hypo because the "good" half has burned itself out or can't keep up. You're probably just better off getting it all over with in one day and you can move on with your life without ever having to think about it again aside from your yearly or semi-annual checkup.

[tmdescovich]

I can not thank you all enough for all your input. Every ounce of advice is so helpful right now. Yes, I am trying to avoid the meds but also the RAI treatment. It sounds awful to me to have to put those kind of chemicals in your body, not to mention more time away from my children. From all the input so far it sounds like I will be on meds one way or another at some point so it comes down to just the darn RadioActive Treatment.

[tmdescovich]

P.S. - the thyroid manager website ANDROS sent is wonderful! Thank you so much.

[nasdaqphil]

You know what? If the cancerous nodule was isolated to the nodule and many times they are, you may not have to do RAI at all.

Once you get the thyroid removed they will do a full path report on it and they will know with most certainty if the cancer spread beyond the nodule. More often than not that little nodule acts like a shell to encase the cancer and it doesn't leave the boundary. That would be good. Then they remove the gland and can examine all the nodule's surrounding tissue to see if there is any trace of cancer anywhere beyond. If it didn't break the boundary, there may not be a need for RAI at all.

Take one thing at a time. I know from my years on these boards that waiting for the path report to come back, usually about 10 days post op, drives people nuts waiting. At least you know you have cancer already. Imagine how long that wait would feel if you were waiting to find out if the removed thyroid was cancerous or not.

Take one step at a time. Your doctor will most likely make a judgement call anyway during the surgery if he's any good. If you agree to half removal and he suspects it spread, you can bet he's going to take the whole gland regardless of what you talked about pre-op.

Also, they do run a mini path exam right then and there while they still have you open. They'll take the thyroid and do a preliminary check to see if anything is obvious and will make a call at that time depending on what they see.

You will be ok. So many people have come through here before surgery and nearly everyone says it hurt more having their tonsils out as a kid and most are surprised at how easy the surgery actually is. Im not trying to make light of it but you cannot drive yourself nuts about it either. You need to do what's right regardless, particularly if you've got kids.....Im sure you want to be around a long time for them. Stay strong. You'll be ok.

By the way, Andros had to have RAI 3 times to kill her thyroid. If she survived that, you will too if you need to have it done. The good thing about RAI is that the nothing in the body uses iodine except for the thyroid so it either all gets sucked up by any remaining thyroid cells and kills them or you pee it all out.

[tmdescovich]

I am most grateful for all the help. I think this little website is a gem. It is amazing how the people closest to me in life really can't say anything to help right now. But several people I have never laid eyes on are helping me to make the biggest decision of my life!

I found a study on the website that was sent to me. 322 people with my diagnosis and 1/2 the thyroid removed. 11% had the cancer return and 1/2 of that 11% died from Thyroid cancer. I think that settles it for me.

Good by Thyroid!

[nasdaqphil]

Good for you. I think that's the right decision too. Im not in your position thankfully but I look at my young kids and know exactly what I would do. You just don't roll the dice when it comes to cancer.

Has anyone else in your family had this happen? It seems these problems tend to run in family lines.

[tmdescovich]

nope, just me. I don't even know of anyone that has had Thyroid Cancer. To be honest 2 months ago I could barely tell you where my thyroid was and I sure as heck didn't know what it did.
This has become quite the experience. I really am happy to have found you all on here. It seems like you all are familiar with each other. Is it mostly a small group on here or just a small group of regulars?

[Andros]

I can not thank you all enough for all your input. Every ounce of advice is so helpful right now. Yes, I am trying to avoid the meds but also the RAI treatment. It sounds awful to me to have to put those kind of chemicals in your body, not to mention more time away from my children. From all the input so far it sounds like I will be on meds one way or another at some point so it comes down to just the darn RadioActive Treatment.

I know where you are coming from but I think it is more awful to have cancer in your body. Sometimes there is no perfect choice. You can only chose the option that is best for you.

I trust you read the link I provided for you?

[tmdescovich]

I know where you are coming from but I think it is more awful to have cancer in your body. Sometimes there is no perfect choice. You can only chose the option that is best for you.

I trust you read the link I provided for you?

YES, the link you sent is wonderful! So much information in once place. Thank you thank you thank you!

[nasdaqphil]

We've got about 1500 members in all. Some are very active, others like to read and watch and input once in a while. We have a great core group of moderators who are very knowledgeable. Our mods and other active members tend to do a lot of the talking since we've all been dealing with thyroid crud forever it seems but anyone is welcome to chime in whenever they want.

[Andros]

P.S. - the thyroid manager website ANDROS sent is wonderful! Thank you so much.

My favorite site; it is credible. You are welcome.

[Andros]

nope, just me. I don't even know of anyone that has had Thyroid Cancer. To be honest 2 months ago I could barely tell you where my thyroid was and I sure as heck didn't know what it did.
This has become quite the experience. I really am happy to have found you all on here. It seems like you all are familiar with each other. Is it mostly a small group on here or just a small group of regulars?

You just made the group grow bigger! We all interact and try to help one another and be supportive.

[CareBear3030]

I had no clue what the thyroid did either!!! I was amazed to learn everything it effected and had control over!

I went and spoke to my surgeon yesterday. I have the same pappilary thyroid cancer. I have one prominent solid nodule in the right side, with several other fluid filled nodules throughout. My case may be different, but my surgeon told me he typically just removes the entire gland. He does not like to do partial because even if the other tissue does not confirm cancer, that does not necessarily mean it is there. He said it typically will show up later. I had already made the descision to take the entire thing out before I went to see him.

Please keep us posted how your surgery goes and I'll be doing the same.

[tmdescovich]

I had no clue what the thyroid did either!!! I was amazed to learn everything it effected and had control over!

I went and spoke to my surgeon yesterday. I have the same pappilary thyroid cancer. I have one prominent solid nodule in the right side, with several other fluid filled nodules throughout. My case may be different, but my surgeon told me he typically just removes the entire gland. He does not like to do partial because even if the other tissue does not confirm cancer, that does not necessarily mean it is there. He said it typically will show up later. I had already made the descision to take the entire thing out before I went to see him.

Please keep us posted how your surgery goes and I'll be doing the same.


Thank you for sharing Care Bear. I am sure you are experiencing many of the same ups and downs as I am. My surgery is scheduled for sept 14th for a Total thyroidectomy. How soon are you going to have yours? Also, just curious, did you get, or are you going to talk to another surgeon? Or just go with the recommended one? I keep hearing "you need at least 2 opinions" but I really like my surgeon and he seems to be inline with what everyone is saying. He said he performs about 40 of them a year.

[CareBear3030]

I will find out today when my surgery will be scheduled. I told him asap... I want it out, and why delay... Let me get this over with. I am going with the surgeon I was referred to. Thyroid/head/neck Cancer is where his specialty lies. I also felt very comfortable with him. He answered most questions before I even had a chance to ask them.

OMG the ups and downs I've been having have been horrible. I have been trying my best to be positive, but its not easy all the time. I've been thinking doom and gloom... I'll cry at McD, school bus stop, anywhere, just because I am thinking this could be the last memories my kids have of me.

I know this cancer is very curable, and I KNOW I'll be fine, but I feel SO SCARED! I have times in my life, like several years back my husband and I were having problems, and I look back on that... I remember that I've hollered I'd rather be dead than deal with this pain. I now think did I bring this cancer on myself? My head is constantly going a million miles a min.

Then on the flip side, I feel the Lord has given me this to endure so I appreciate life more, and wake up everyday happy and appreciative instead of tired and whining.

So, YES!!! I've had all the ups and downs you are having!!! Email me anytime you need to vent!

[carol9999]

Hi..I agonized over the same thing you are. I had a 1.5mm nodule that was inconclusive on the biopsy although I think they strongly believed it was probably cancer ... I didnt want the whole thing out because of the meds the rest of my life and I felt what if it did come back benign, then i felt it was all for nothing...Well, I ended up making the decision to have the total thyroidectomy in June 2010 and am so glad I did... my decision was based on the fact that I learned that 1/2 a thyroid usually putters out and then you have to be on meds anyway...and I didnt want to go for a second surgery!!! It ended up that i did have thyroid had cancer and even the other side had small cancers too, so I am glad I did. I also feel (although dont know if this is true) that by taking the meds the same dose everyday, that I can keep my thyroid level more stable...if I had the other half working and then puttering out, it would change my levels...and I was even more afraid of feeling horrible on the meds than the surgery itself...BTW.. I feel great on my Synthroid ... I may have to go for RAI but that is not definite according to my endo and oncologist. I will find out beginning october. Good luck.