# Terrified! Upcoming Surgery.....WOW



## ADreisow (Sep 11, 2011)

I'm 25 years old, and in July of this year I was rubbing my neck and I had noticed a lump in my neck. I thought it was strange but, with my busy life, didn't think anything of it.

A few weeks later I had a PAP Exam, where my dr said "Did you know you had a lump here?" and I said "OH!! Yeah I forgot about that! I noticed it a few weeks ago."

She sent me to lab and my blood work was fine. It took 3 weeks for me to get in to have an ultrasound done. The day after my ultrasound I was called and told I was being referred to an ENT. Less than a week later, I had an appointment with my ENT.

She stated my nodule on my right thyroid was 3.6cms...and solid. She said my options were surgery or biopsy. While she was going through my ultrasound readings, she said I also had a small nodule on my left thyroid 0.5cm

I went on to get a biopsy the next day....I HATED it to be perfectly honest (I have a thing where I don't like anyone near my neck)...My results came back 10 days later. My Dr then told me that I have a 60-75% chance of having cancer. That all my cells were suspicious malignant cell clusters.

I have a surgery scheduled right now for a right lobectomy for the 27th of Sept. I'm scared to death, to be honest. I've lost 30lbs since my husband had deployed and I'm terrified to gain a bunch of weight back.

Since I am scheduled for the lobectomy, I'm unsure of whether I should just continue with the lobectomy OR if I should get my whole thyroid removed. I've researched for weeks...believe me and the more I research, the more I'm terrified!

I've spoken with my Dr and she says my right thyroid NEEDS to be removed and we can watch the left thyroid.....But I don't want to have a second surgery if I don't need to. I don't want to have to be on medication forever if I don't need to...I'm scared. Flat out scared.

My husband will be coming home on emergency leave from Afghanistan to take care of myself and my 2 year old during this time.

I'm so scared...terrified. I don't even think I was this scared when I got my gall bladder removed. I'm so worked up over it that I make myself nauseous.

I would love some friends who understand what I'm going through. I've heard things of people gaining 50-80lbs after their thyroid is out. I've heard that being in their 30's their teeth are falling out because of the lack of calcium.

I need someone...Because I'm absolutely terrified. I also need help choosing what kind of surgery is right for me.


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## webster2 (May 19, 2011)

ADreisow said:


> I'm 25 years old, and in July of this year I was rubbing my neck and I had noticed a lump in my neck. I thought it was strange but, with my busy life, didn't think anything of it.
> 
> A few weeks later I had a PAP Exam, where my dr said "Did you know you had a lump here?" and I said "OH!! Yeah I forgot about that! I noticed it a few weeks ago."
> 
> ...


Please don't be terrified, easier said than done, huh? It is a tough time for you with a little one and a deployed husband. I am not sure what to say. I had half of my thyroid removed when I was 31 because of a hot nodule. I didn't take synthroid, gain weight, had a child at 32, and was probably doing ok for almost 20 years. My teeth were/ are fine. About 6 weeks ago I had the other half removed because papillary cancer & graves disease.

I guess if I had any say in the deal. I would have preferred to have it all out at once. Although, getting the proper dose of medication is a tricky thing. My doctor feels mine are ok now, but I am having a lot of fatigue in the afternoons, and if I do too much. But how to know how much is too much??!?

I am afraid I haven't been much help to you. Perhaps, others will chime in with some help. I do wish you the very best. There is a lot of support here for you.


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## CLRRN (Jun 22, 2011)

I know this is all scary so take a deep breath and one day at a time. I'm glad your husband is able to come home and help. I had fine needle aspirate (nodule on left lobe) and the results were inconclusive. Standard of care consisted of a left lobe removal. That was done on 8/16. Unfortunately it came back positive for follicular cancer and I had the rest of the thyroid removed on 8/23. I'm not telling you this to scare you but to reassure you, it's ok and you will get through this. I have found this website to be very supportive and although I'm just staring this journey and will be looking at the members for support and strength. Hang in there, wishing you the best outcome. Thoughts and prayers are with you. God bless


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## joplin1975 (Jul 21, 2011)

I'm two weeks post-op for a TT today. So far, my teeth are fine and if I've gained any weight, it's due to the cheesecakes and candy sent to me after surgery.  I've tried to be conscious about what I'm eating and taking daily walks (I'm not on replacement meds yet as I'm waiting for a RAI).

Do you know what kind of cancer they found in the FNA?

It can absolutely be a tricky call on what the right path is for you. I don't pretend to know much about this thyroid stuff, but I can tell you how things shook out for me...if it helps, great. If not, know I'll be thinking of you.

Prior to surgery, I had a sonogram and a Radioactive Iodine Uptake study done. The sonogram showed a 2.5cm solid nodule, a 2.1cm solid nodule, and 9mm minimally complex nodule, all on the left lobe. The right side was deemed unremarkable/normal. The uptake study showed my right side functioning well, with all the nodules on the left side being non-functional.

The FNA showed papillary cancer in the largest nodule on the left (he only aspirated one nodule (long, unimportant story)). The idea was that the right side looked ok and was functioning ok and I had the option of having a lobectomy with monitoring of the left, or a TT (my free T3 and T4 numbers were ok, TSH was only slightly elevated).

Anyway, I'm...not...really...good with...doctors. Or medical people in general (which is ironic given that my husband, brother in law, and sister in law are all PAs, my other sister in law is a nurse, and my best friend is a surgeon!). *For me* the idea of taking medication for the rest of my life versus the possibility of having a second surgery and/or more monitoring than I would already have (for the right lobe) was a no-brainer *for me*. Do the surgery once and take everything you can take.

Let me just underscore, again, that I am not good with doctors. As in, I knew I had to have the surgery done, but there was a few nights beforehand when my husband found me in the bathub with my head between my knees having a full-blown panic attack. I have never had surgery, never been in the hospital, am rarely sick, etc etc etc. And also I am a big fat weenie whimp about pain.

So that all said, I have to tell you my surgery was relatively easy. I was given post-surgical pain relief in recovery that lasted me all night long and I took one vicodin because we had an hour ride home, but I really didn't need it. After I got home, I just took a couple of advil a day and that was it. I was up walking, talking and eating within 3 hours. The most uncomfortable part of it all was the "pulling" sensation of the steri strips. Ten days post-op I was re-roofing our house with my husband. I don't recommend that, but I did it.

What I wanted to tell you, again, not to assume this will/would happen to you, but just to provide you with my experience is that the pathology results were eye-opening. First, while the left lobe was one hot mess (we knew), it turned out that my "normal" and "functioning" right lobe had two small nodules (0.2 and 0.3) that were undetected by both the sonogram and Uptake study. Both nodules contained cancer cells...in short, I would have had to have Righty taken out eventually.

Secondly, my surgeon removed ten lymph nodes. We were surprised to find that three of the ten (all being the closest to the thyroid) also contained small amounts of cancer cells in them. I had a full neck u/s prior to surgery that, aside from the left side of my thyroid, did not pick up on the minor changes of the nodes (normal nodes were about 2 to 3mm, the ones containing the cancer cells were ~7mm).

Everyone's case is different, so please don't think I'm saying a lobectomy is the wrong path. I, again, just wanted to let you know how things shook out for me and that the surgical experience for this doctor-phobic patient was not awful. Not at all.

Best of luck.


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## Andros (Aug 26, 2009)

ADreisow said:


> I'm 25 years old, and in July of this year I was rubbing my neck and I had noticed a lump in my neck. I thought it was strange but, with my busy life, didn't think anything of it.
> 
> A few weeks later I had a PAP Exam, where my dr said "Did you know you had a lump here?" and I said "OH!! Yeah I forgot about that! I noticed it a few weeks ago."
> 
> ...


Welcome to the board!










You will find many friends here who have lots of experience with this. I am sorry this is happening but I can assure you, you "do" want it out. It seems thyroid cancer is on the rise and your 2 year old needs his/her mommy!!

Most of us feel it is probably better to get the whole thyroid out; many have had to have a second surgery somewhere down the line. Sad, but true. And....................it could be once the surgeoun is in there, he/she will determine that the other lobe has to come out if anything looks suspicious.

Try not to be too scared. Surgery sometimes is a real blessing. Just think if you "couldn't" have it? Not a good scenario. We are here for you!


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## I DClaire (Jul 31, 2011)

Hi, welcome aboard! I am having my thyroid removed on 9/23 and, to tell you the truth, I can barely wait! Our minister called this morning to ask about putting my name on the Prayer List and I told him it felt strange doing that when I'm almost looking forward to surgery so I can (hopefully) enjoy the stability I believe thyroid hormone medication will give me, maybe after awhile I can stop fixating on my symptoms, and I can get off other drugs that make me feel terrible.

As far as I'm concerned, I don't want to ever have to think about surgery again! I'm tired of worrying about cancer, worrying because my nodules are growing, worrying about swallowing two radioactive capsules every 6 months for scans, etc. I've worried about all this till I've about driven myself nuts!! :tongue0013:

I'm old enough to be your mother (easily!!) so I'm not sure what I'd do if I were younger, not to mention having a toddler and a military husband stationed overseas. I find thyroid disease to be like a lot of things - sometimes there just aren't any easy answers.


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## ADreisow (Sep 11, 2011)

Thanks everyone!

I hate being scared! UGH!!

I've told everyone that I'm getting the whole thyroid out (I'm telling my doctor next time I see her LOL)

I would rather have it all out, than have to have a second surgery. You know, I had to have an emergency surgery when I was 8 months pregnant to get my gall bladder removed, and it didn't bother me one bit....but thinking of my thyroid being out, scares me.

I truly believe the ONLY reason it scares me, is because of possible weight gain and I've heard of (possibly exaggerating) thousands of people who just keep gaining and cannot lose any weight no matter how they try! I don't want that to be me! I'm STILL trying to lose weight, but I've been stuck at my weight since May and it hasn't budged.

My doctor said my right nodule is 60-75% suspicious for papillary carcinoma. Doesn't seem too "high" since they claim 94% of nodules are benign. I keep thinking maybe I've got that 25% chance that everything is fine! Wouldn't that be nice!

All my doctor has told me was that I need to have a lobectomy and I could choose to have the whole thyroid removed. Nothing was every mentioned about Radiation. So...if it IS cancer, do I HAVE to go through radiation?

Thank you EVERYONE for being here for me!! I really need support now more than anything and friends that understand. My family and friends don't understand the concerns I have!

....and...I expect Flowers and Candy from all of you when I have my surgery!  LOL


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## Lovlkn (Dec 20, 2009)

ADreisow,

If you are properly replaced weight will not be an issue. Proper replacement is KEY.

You receive proper replacement by having your Free T-4 and Free T-3 tested when you have labs and chances are you will have to train your doctor and insist they run those 2 labs and dose by them. Get in the habit of requesting paper copies of your lab work and keep track of them and how you feel so that you can make dosing suggestions to your doctor.

If post surgery you are below mid range on either of these tests then you are not being properly replaced. If you have a doctor that will not dose you to mid range or slightly higher (some people require being in 3/4 range) then find a doctor that will, it may take seeing a few but eventually you will find someone willing to work with you. Proper dosing is all about finding "your range" and just because you are in the range it may not be "your range" and most if not all post TT feel their best and mid range or above.

Calcium- they will test you in the hospital post op and you may leave not needing any additional calcium. If they damage or remove a parathyroid then you may need to take extra calcium but that isn't the norm on thyroidectomies.

I am coming up on 7 years post op and weigh the same and sometimes a few lbs below what I did going into surgery and having my thryroid removed when I turned 40 tells you I am properly replaced - the magic KEY!

Good luck and I personally thing having your entire thyroid removed is a good idea with your suspicious nodules.

If the stress is too much for you ask your doctor for some lorazapam to take the edge off. I was a basket case before my surgery and it was really not a big deal - I cooked dinner the day I got home from my surgery.


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## Octavia (Aug 1, 2011)

ADreisow said:


> Thanks everyone!
> 
> I would rather have it all out, than have to have a second surgery.


Smart. I decided to only have half out (at first) then had to have the second surgery a few weeks later. (But the second surgery was tons better than the first!)



ADreisow said:


> I truly believe the ONLY reason it scares me, is because of possible weight gain and I've heard of (possibly exaggerating) thousands of people who just keep gaining and cannot lose any weight no matter how they try!


They're levels are not right. As Lovlkn mentioned, watch your levels closely. I gained about 8 pounds during the 6 weeks or so when I couldn't take any thyroid replacement hormone. Haven't gained an ounce once I could take it. The reason I couldn't take it for 6 weeks was to prepare for my radioactive iodine treatment because I had cancer.



ADreisow said:


> Nothing was every mentioned about Radiation. So...if it IS cancer, do I HAVE to go through radiation?


It depends. For me, it was not presented as "optional, do you want to do it or not?" It was simply the next step in my treatment. But it's not the kind of radiation people get for other cancers, which is much worse. This is a solution you drink, then you stay away from people for 4 to 7 days, and that's it. Side effects are relatively rare. I had none.


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## ADreisow (Sep 11, 2011)

Well, I spoke to my doctor today and I feel a lot better about my surgery. I asked her to put herself in my shoes and what she would do.

She told me she would just get a lobectomy and wait for the final lab results and then get the other side taken out after she found out the results.

But then she also said, knowing there is a nodule on the other side, and knowing she would have to have an ultrasound every year to keep an eye on it and knowing that down the road she could have another surgery...or a few days after the first surgery have another.....She would get the whole thing taken out.

I definitely have faith in my doctor (she has thyroid problems as well!) that she'll take good care of me!

I'm still nervous about my surgery, but I feel I'm making the right choices and that my doctor will take care of me! I started taking calcium supplements today (I don't drink milk or really eat dairy), I figured it wouldnt hurt to prepare in case I have a small calcium drop.

I wouldn't mind my surgery at all, if I didn't have to have IV's and everything...LOL man oh man do I hate needles!!

Thank you everyone again for all your stories and advice!


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## Andros (Aug 26, 2009)

ADreisow said:


> Well, I spoke to my doctor today and I feel a lot better about my surgery. I asked her to put herself in my shoes and what she would do.
> 
> She told me she would just get a lobectomy and wait for the final lab results and then get the other side taken out after she found out the results.
> 
> ...


Is your surgery scheduled? If so, when is it?

Sounds like you have a handle on the whole thing and a most wonderful doctor! You are so fortunate in that!

No surgery is fun but we are all keeping you in our thoughts and prayers; you are going to be just fine.


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## ADreisow (Sep 11, 2011)

My surgery is scheduled for the 27th! It WAS the 14th, but we had to push it back so my husband can make it in time.

I have my pre-op appointment on Monday


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## I DClaire (Jul 31, 2011)

ADreisow said:


> I wouldn't mind my surgery at all, if I didn't have to have IV's and everything...LOL man oh man do I hate needles!!


You and me both! I am utterly traumatized by needles. I had to have a baby needle for a nuclear stress test.

I've fainted in every lab in town! When my daughter was maybe 4 years old she needed to have a blood test. She was up on one of those high pediatric examination tables when the nurse came in to draw blood.

When I woke up, I was on the high examination table and my child was playing in the doctor's office!! And, as if that wasn't embarrassing enough, I couldn't get past trying to faint. Everytime I'd try to stand up, I'd get faint again.


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