# Goiter and enlarged left lobe...concerned



## Cahlin (Jan 7, 2014)

Hi! I'm completely new to these forums, or any other health related forums actually. I'm just really concerned and wanting to hear other people's experiences who have had a goiter or thyroid nodules. I have noticed over the past few months that my thyroid is definitely enlarged...actually really enlarged. I had an ultrasound today and I peaked at the screen while she was measuring my thyroid and my left lobe is 5 cms long...and about 2 cms bigger than my right lobe. I've also noticed pain within the past couple weeks in a nodule I found by my larynx because it was throbbing a little with pain radiating to my ear, and it's definitely palpable. I saw my doctor on Friday because of it (and haven't been diagnosed with any thyroid related issues previously) and she ordered all the thyroid hormone tests, a CBC, and complete metabolic panel which all came back as normal. The results of my Thyroid hormone tests are as follows:

TSH: 2.45 range: .45-4.50

T3 TOTAL: 112 range: 80-200

T4 FREE: 1.0 range .8-1.7

I guess I'm just worried there's a chance I have thyroid cancer...but I'm suspecting Hashimoto's. I have noticed in the past year or two I've had many different symptoms that are related, the most concerning is tremors in my hands. My Dr. said I have symptoms of both hypo and hyperthyroidism, which have only been noticed within the last year and a half or so. Within the past couple months though I've noticed an increase in being tired and sensitivity to cold. I've always been warm blooded...to the point of sleeping with the window open in winter, now I'm finding it hard to keep the chill out of me at times. I've also just felt run down a lot too, I'm usually the one in the family running around doing everything for everybody, and I just don't have the energy to get out of bed some days. At the ultrasound today the tech seemed to concentrate mostly on my left lobe, but she did also measure the palpable nodule I have too, along with all the blood flow...and she barely paid attention to the right side. I'm just really worried that this could possibly be cancer because of the size of my lobe and the fact that I think it's gotten bigger within the past couple months. Anyhow I'd really love to hear any experiences or advice anyone can offer me? If not, thank you for your time in reading this anyway .


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## Andros (Aug 26, 2009)

Welcome to the board!

When do you get the results of the ultra-sound?

Your doc should have ordered antibodies' tests indigenous to the thyroid. TPO, Thyroglobulin Ab, Thyroglobulin, Trab and perhaps even ANA which could suggest many things.

Also, your TSH is much higher than most of us would like . 1.0 or less seems to appeal to most of us.

Ask your doctor to run your FREE T3 and FREE T4 instead of the "Totals." The FREES are your active hormones which are available for cellular uptake.

Due to software incompatibility, I cannot post links for you but if you run through some of the previous posts, you will find links that will be helpful.

I sure hope you don't have cancer but frankly, pain is never a good sign so it definitely has to be ruled in or out.

Let us know as soon as you get the ultra-sound report!


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## Cahlin (Jan 7, 2014)

Thanks Andros for replying! According to the ultrasound tech I should hear from my Dr. today or tomorrow. I honestly have no idea what to expect because it could be so many different things, I've been reading up on thyroid diseases and treatments so I can prepare myself for the outcome. I'm only 27 so I am particularly concerned about the size of my thyroid and the nodule that I have. Depending on what the results of the ultrasound say, I plan on either asking for a FNA or antibody tests...perhaps both just to get all the information needed so I can at least figure out what's going on with me. I'm just hoping that whatever it is, I can get to the bottom of what's wrong with my thyroid relatively quickly, even if it is cancer. The timing of all of this has been stressful, I'm living with my sister who is 8 months pregnant, so we're all trying to get things ready for her baby's arrival. I really don't want to put more stress on her with my health issues or cause her to worry (which I know she is already). Hopefully I'll hear back from my Dr. today. I will update with my ultrasound results as soon as I get them! Thanks again!


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## Andros (Aug 26, 2009)

Sounds like you really have a full plate!! So, you will be an "auntie" soon!" Yay!

Please do let us know your results and also when the new little one arrives!


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## Cahlin (Jan 7, 2014)

So the ultrasound report came in and my Dr. recommended me for a biopsy/FNA. The report says my right thyroid lobe looks normal and measures 3.3x 1.7x 1.3 cm. The report says my left thyroid lobe is abnormal. It measures 7.1x 3.2 x 5.6 cm. It says my left lobe is replaced by either a very large heterogenous mass or innumerable smaller heterogenous masses. Some of the components were cystic but most solid. The etiology is indeterminate. The impression is that I have an enlarged complex nodular appearance of the left lobe which may represent a single very large heterogeneous nodule, or a conglomeration of multiple heterogeneous nodules. At the end of the report it says that it is amenable for a ultrasound guided fine needle aspiration if desired. Not sure what that last bit means...if desired. But my Dr. said that someone is supposed to call me to set up an appointment to get a biopsy.

Update: I have a biopsy scheduled for Monday morning, but the receptionist didn't seem too concerned about it. At first she wasn't going to schedule me until the 28th! I finally talked her into getting me in on Monday. She said that the ENT is going to do a physical exam and see if I even need a biopsy first and if he determines I need one he'd try to do a FNA. I told her you can practically see my thyroid from across the room so it shouldn't be too hard to find haha. Hopefully they'll be able to do a FNA on Monday or else they're going to have to reschedule me for an ultrasound assisted one. I would think though that with the size of my thyroid that it would be more cause for concern...I mean from what I've been reading 7cm is pretty substantial! I just am really worried because most of what I've been seeing on ultrasound reports is that both lobes are enlarged with only a cm or two difference in size, not one lobe twice the other size. I just wonder what it could possibly be! Anyway, thank you Andros for all your support, I will post an update when I find out results from my FNA!


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## Airmid (Apr 24, 2013)

Honestly, don't put too much stock into people who answer the phones. They aren't your doctor, they don't know your medical history in most cases and it was good of you to get this taken care of sooner rather then later. I hope everything went well today and that the results will be back shortly. hugs1


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## Cahlin (Jan 7, 2014)

Thanks Airmid! The appointment went pretty well today. I didn't actually get a FNA done, but the doctor I saw is an ENT and surgeon specializing in the thyroid. I immediately felt comfortable with him, and he definitely knew what he was talking about. He said my left lobe is absolutely monstrous and needs to be taken out. It turns out that it's so big, it's actually grown into the middle of my neck, what I thought was my isthmus, but it looks like an adam's apple at the bottom of my neck! He wants to save my right lobe if possible because I'm so young, but he said that he thinks he may have to take out the whole thing. He suspects that I have Hashimoto's based on my symptoms but wants to do an ultrasound guided FNA before the surgery anyway because it could be a chance that it's cancer based on the growth in the past couple months. That is scheduled for Friday, and his office is supposed to call either by the end of today or tomorrow morning to schedule my surgery. He said that he will call me after he gets the results of my FNA so we can discuss the surgery further based on what is found. He also said that he will have my thyroid biopsied right there in the operating room to check for cancer. It's all kind of been a whirlwind today that it all hasn't really sunk in, but I do feel relieved at least that I know I'm in good hands and that my health concerns have been heard and are being taken care of pretty quickly.


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## Airmid (Apr 24, 2013)

I'm glad it went so well! It's ironic, sometimes the offices with the rudest staff have the most compassionate doctors.

Well, even with large thyroids the surgery is still the same and the incision will be small. They had to open mine a bit more during my hyperparathyroid surgery when they found the enlarged left nodule and cancer, but that was only to two inches to allow them to work better. My aunt has developed a truly monstrous goiter that has wandered into her chest next to her aorta (how could this have been missed with ultrasounds!) and her incision the trauma surgeon tells her will only be around 2.5 inches. So keep that in mind, that no matter how big that thing is, you should have a small incision and if anyone wants to open up your neck run, don't walk in the other direction.

That being said, it's interesting he didn't just do the FNA on the other side while he had you there. Though it is good that he's checking and will do biopsy's during surgery. Just keep in mind it makes for a longer surgery. Mine went from being a 40 minute procedure to over three hours due to parathyroid and thyroid complications,and then trying to get clean edges. BUT I still recovered just fine at the same rate, and you'll be going in with a much better idea then my poor surgeon. He wasn't anticipating the mess that was my neck, instead trusting my Endo at the time.

Honestly if it's just Hashi's, not cancer, I would start considering now what your preferences are for having it left in. I regret having that small part left, though my surgeon was just doing what the specialist said was a good idea with my age (I was in my 20's at the time). If it is Hashi's you'll still have to be on thyroid hormones and I may be biased but it seems to entail more up and downs then just having it out. Plus Hashi's is being linked to cancer to begin with, especially in people with certain gene mutations. This is something I would definitely discuss with your surgeon. To me it seems silly to leave something in that your body is determined to kill but again, biased. 

I'm very glad you are getting somewhere. Keep pushing for fast appointments. Obviously something is wrong and the sooner it's fixed the sooner you are going to feel a whole lot better. I know at times it can be intimidating if office staff is not helpful but I think all of us are our own best advocates. You'll be in my prayers. hugs1

Edit: I wanted to add, in defense of my surgeon, he was very skilled in parathyroid surgeries and pretty much the only person in my area that could do it. My left lobe of my thyroid came back cold during a parathyroid scan and he mentioned it felt hard. I made him promise he would look at my thyroid during surgery and he more then kept that promise. I hold no ill will towards him for leaving it in, I do hold ill will towards that Endo who basically said "She's young. Leave that malfunctioning piece of thyroid in." And yes it was pretty beat up at that time with Hashi's.


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## joplin1975 (Jul 21, 2011)

I have to agree. I would recommend really pushing for that total. If you have Hashi's, trying to regulate the meds post-op gets tricky when you still have a target for the antibodies.


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## jenny v (May 6, 2012)

I agree with joplin and Airmid, definitely find out if you have Hashi's ahead of the surgery. That could potentially make getting your medication dialed in correctly a little tricky.

I had my thyroid out in October due to years of uncontrollable Hashi's and while the surgeon was in there, it turned out my right lobe had grown backwards into my throat and pushed my esophagus to the side. Plus, the whole thing was so damaged from years of my immune system attacking it, the surgeon had trouble wrestling it out of my neck and the 90 minute surgery turned into a 3.5 hour surgery. And no ultrasound ever picked up on it! But, my scar is a little over 2 inches and my recovery was just fine (after the anesthesia left my system).

It sounds like you've got a good ENT who is moving things along and doing the right things. The FNA should be able to tell if you've got Hashi's, too, so that's good.


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## Andros (Aug 26, 2009)

What good fortune to have been able to see this ENT. Everything he has told you is right on and hopefully you feel very confident. He was most thorough in explaining the procedure to you. Very thorough.

Let us know when the surgery is lined up!

How are you feeling? You will be glad to have that lump from across the room OUT!!!

Many hugs,


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## Cahlin (Jan 7, 2014)

Thanks everyone for your responses and advice! I am officially scheduled for surgery on the 27th. I explained the situation about my very pregnant sister and how I'd have no one else to look after me, and the doctor and staff were very accommodating and fit me in as soon as possible since they said it was going to take two surgeons to do the surgery. I have my ultrasound guided FNA rescheduled for the 22nd because my sister can't be there to drive me home on Friday, and the rest of our family is going out of town for the weekend...figures! I still have to schedule a pre-op chest X-ray as well.

I am definitely feeling a little more nervous today since my surgery date is so near, but I'm also a lot more relieved in knowing that this is all going to be taken care of soon! The doctor said that he will do everything he can to make the scar as least visible as possible. I'm allergic to certain dissolvable stitches (they completely pulled my wound apart from my ACL reconstruction and I have a nasty scar on my knee as I'm prone to keloids as well) that he wants to make sure I don't have the same problem happen. I feel that no matter what, even if it's cancer, that my ENT will make the best decision for me and my well-being...and that's so important!

It's actually kind of weird being the "sick" one in the family right now. I'm not so used to people worried about me because I'm usually the one taking care of others. I think I ignored the symptoms for a long time because of my nature and the fact I thought a lot of it was psychosomatic. It's a huge relief to know that there is a reason for me not ever feeling well most days, and that I'm not a hypochondriac. This past year was tough because my sister was sick from a molar pregnancy for months, that my subtle symptoms were easily overlooked on my part as depression or anxiety. I guess looking back now I don't know how I didn't notice the giant growth on my throat/neck area, but I think I chalked it up to I thought that's just how my anatomy was and I got used to feeling the pressure on my throat. Crazy to think what we can overlook if we're not aware!

Anyway sorry for the long post, I think everything is still trying to sink in. Thanks again everyone for your advice and concern, I really appreciate it and it definitely helps knowing that there are others out there who have gone through similar experiences!! I'm really glad to see there are advocates out there for people who are looking for answers that doctors can't always answer or know. I will keep you all updated, and let you know what comes of the FNA! Thanks again 

BTW Jenny v, that's crazy about your thyroid! I have a feeling that mine will be tricky too...now that I'm aware of it I can feel how constricting it is!


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## Airmid (Apr 24, 2013)

I'm so glad to hear that things are being taken care of so soon! As long as they know what you're allergic to you should be golden. I would always remind them, just make sure but that's just me. 

As for the scar, most people can't tell I had neck surgery unless they are looking for the scar or I'm flushed (seems to bring out the scar tissue more). Otherwise, nope, no one knows. Hopefully it will be the same for you.

Thyroid problems are insidious, they creep slowly and some symptoms can play with the mind. Sadly, I've seen story after story of women being written off as depressed, or anxious or having "womanly issues" only for them to later find out (sometimes years later) that they are having issues with their thyroid. So I am very happy that you found a doctor that listened and that they also didn't just dismiss the growth as "just a goiter" as they did with my aunt.

There are many of us here that have had this surgery and will be happy to help you out or just listen if you have fears. :hugs:


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## jenny v (May 6, 2012)

Best of luck, Cahlin! You'll soon be a member of the thyroid surgery club--we should get jackets, lol!

I honestly never felt any issues with my thyroid displacing my esophagus until the last few months before my surgery. That's when I started randomly choking on food and I couldn't lie on my back or my left side because it felt harder to breath. Those were actually secondary reasons for my thyroidectomy, the primary reason was 10 years of struggling to keep my levels under control. My Hashi's ran rampant and I would swing back and forth between hypo and hyper with no warning. It was exhausting.

Post-surgery I'm doing well, although we're still trying to find my "magic" dose of replacement meds. I was on Synthroid and Cytomel before surgery and they just weren't working well after surgery, so I just recently switched to Armour and I'm starting over on the titration journey. But now I'm just plain old hypo, not hypo then hyper then hypo then hyper. I can handle this!


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## Cahlin (Jan 7, 2014)

Thanks guys for your continued support! I can't wait to get this lump out of me now! Last night it was just throbbing with sharp stabbing pains that radiated up to my jaw and weirdly enough, made me feel like my tongue and salivary glands were swollen. Not sure if this is something related to Hashi's or something entirely different, but I was pretty miserable for a while. I feel a lot better today though .

I'm not that nervous about the surgery because I'm more anxious about getting my life back! But I did have a few questions if you guys would be kind enough to answer. How long should I expect to really be down for? I'm a photographer, I was used to getting up before dawn to do sunrise shoots, or driving 18 hours straight to do a 10 hour shoot immediately after and I have had trouble just getting out of bed most days these past few months! I'm hoping to be able to get back into that sort of activity by spring. I'm expecting to be taking it easy for at least a week, but realistically, how long should I expect to recover just from the surgery (not talking about getting meds)?

Also is there anything I should be aware of to prepare myself beforehand? Like is there anything you guys wish someone had told you before going in for surgery? And is there anything I should do to prepare for my recovery, like supplies I'll need or anything? I know my sister will take amazing care of me, but she's fully pregnant so I want to make myself a least amount of a burden on her as possible. Thank you guys so much for all your support and advice, I really really appreciate it!


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## joplin1975 (Jul 21, 2011)

The surgery is kinda weird, in that -- for me -- I wasn't really "down" that much. I mean, the day after I was all out of sorts and groggy, but there was no real pain. I took Advil and only used a narcotic in the hospital. By day two, I was working from home, answering emails and making phone calls. By day eleven, I was re-roofing the house.

But...the whole hormonal fluctuation thing was just weird. Some times I'd feel fine and then other times I'd feel like I was run over by a bus. When I woke up from surgery, I was a jittery, sweaty mess and couldn't sleep for a minute (hormone dumping during surgery...I didn't know it at the time). I couldn't sleep at home during the day after until about 7:00pm and then I absolutely crashed and slept for 15 hours (something I never do).

My surgeon said some people fly through the surgery with no problems (this was me) and others have more pain and issues with calcium, etc. So he insisted I take two weeks off, which I did. But I was one of those who really didn't need it.

Beyond that, the big question is how quickly the doctors can hone in on the right medication and dose you'll need. For some, they nail it on the first try. And, for others, it can take a while. So, the biggest advice I would give is ask hard questions about replacement meds (what do they suggest as a starting point and why), get hard copies of all your lab reports, and keep a spreadsheet of your dose and your symptoms so you can have as much information as possible.

Oh, and I couldn't stand to have anything touch my incision, so I was grateful for zip-up/button up/v neck shirts. Also, swallowing can be a little tough at first. I loved having insulated cups with a straw for the first week.


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## jenny v (May 6, 2012)

I had surgery on a Thursday and went back to work a week later (although I worked from home for 2 days). However, the first 3 days after surgery weren't great for me--I had a bad reaction to the anesthesia and then it turned out I was allergic to the steri strips closing the incision. Once the anesthesia was out of my system and the surgeon removed the strips early, I felt 100% better.

But like joplin, I didn't want anything touching or even near my neck for weeks. I went back to driving about 8 days after surgery, but I still couldn't fully turn my head, so that was a little scary.

I would suggest having lots of cold, soft foods and drinks, v-neck shirts, a bunch of pillows to sleep on (I slept propped up and surrounded by pillows so I wouldn't turn my neck too far in my sleep), and throat numbing spray to help with the sore throat from the breathing tube they use during surgery.


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## Airmid (Apr 24, 2013)

Just so you know, I have random pain in my thyroid from time to time. In fact it serves as a good reminder at times to call my Endo when I'm due for an appointment and labs (he draws every three months). 

The biggest thing I wish I had known before surgery was that I had cancer and Hashimoto's. Even if it had just been Hashimoto's my thyroid was a mess and I would have authorized my surgeon to remove it all instead of him having to rely on my not to great Endo who didn't even sense these problems. It's no fun having a malfunctioning, not willing to be suppressed thyroid and facing a second surgery with a surgeon who may or may not be as skilled as my first.

After surgery I did have problems with laying down. I couldn't believe how many muscles in your neck you actually use to lay down! Though keep in mind I had to have a parathyroid tumor removed that was complicated by where it was at, along with the mess of my thyroid so your mileage may vary.

Outside of this, it didn't really keep me down all that much. I kept my neck movement to a minimum, but I was on a job site 24 hours later with minimal pain medicine. I can't take NSAIDS (like Advil) due to the whole vomiting of blood thing, so they gave me a special ice pack that I could position hands free on my neck to control swelling that worked really well. I probably did have a higher level of pain then some just because I couldn't take anti-inflammatory medication but out of the three surgeries I have had (neck, pelvic lap for ovarian mass and emergency gall bladder removal due to infection) the neck was by far the easiest to heal from.

One big thing, I did manage to catch pneumonia that was diagnosed about 6 days later. It wasn't terrible or severe but if you don't feel good check your temp and tell your doctor as it is a more common complication. It wasn't terrible and I do tend to be more prone to it so keep that in mind. Depending on your surgery they may give you a device to breath into every couple of hours. Use it! It will help prevent this complication and I used it with my emergency gallbladder removal a year later with good results.

I hope this helps and to be honest, I'm actually more worried about the removal of the rest of my thyroid as it is a "hot mess" as Joplin would say - swollen, scarred and with suspicious nodules. I worry about losing the rest of my parathyroids on top of it. My own experience is why I strongly encourage you to really think about what you would like to do in the event of it being "just" Hashi's and not cancer. I wouldn't want anyone to be in my situation.

Best of luck to you and I hope your sister has a beautiful healthy baby. hugs1

Feel free to ask any other questions or to just voice your worries. That's what we're here for.


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## Madison Marie (Sep 3, 2013)

It is wonderful that your doctors have taken such swift action. I am hoping things will start moving quickly for me as well. If I read correctly, it appears you are less than a week from having that monster out of your neck. I wish you the best of luck, though it does appear you are in good hands. Here is to you getting well enough to help your sister with her new baby


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## Cahlin (Jan 7, 2014)

Thanks everyone for your kind words and encouragement! I am supposed to go in at 12:30 for my surgery at 2:30 tomorrow afternoon. I am actually really nervous which I suppose is normal for the day before surgery. I had my FNA on Wednesday and that definitely wasn't the most pleasant experience out there!! I still haven't gotten my results back yet, hopefully my surgeon will get them before my actual surgery or I really have no idea what to expect. I guess it just unsettles me not knowing until I wake up what it is exactly they're removing! I still have to prepare by going out and getting those extra little supplies like throat spray and ice packs etc because my sister is feeling too sick to help me out today, hopefully she'll feel better tomorrow!


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## Andros (Aug 26, 2009)

Will be keeping you in thoughts and prayers for tomorrow! You are going to do great and boy, will you be glad to have this behind you!

Many healing hugs,


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## Cahlin (Jan 7, 2014)

Hi everyone! Well I'm in my hospital room for the night. Right before the surgery my surgeon came in to talk to us and he said the pathologist called my doctor late on Friday because my FNA showed cancer, the papillary kind. So crazy!! I Kind of had a feeling but at the same time it's so rare I was thinking it was a growth from Hashimoto's. The tumor he removed from my neck was the size of an orange. The doctor was Said it was so big it basically was crushing my trachea to the point that it's still flattened down now! I asked how long he thought I had it growing and he said just a matter of months! I was a lot of pain first waking up, but I'm feeling a lot better now except for swallowing and moving my head. Surprisingly with the amount of complications from the surgery I actually have a strong voice right now. He did say that one of my parathyroids was overtaken by the cancer and the other on that side he said was purple from being horribly bruised. They're gonna draw labs before I'm discharged to check my hormone and calcium levels to make sure my other two parathyroids are working properly. He also said I'll probably have that radioactive iodine treatment in about 3 weeks. I may hold off though until my nephew is born!! Anyway thank you all so much for your support through this...it's definitely helped me feel like an advocate for myself in terms of finding the right healthcare!


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## joplin1975 (Jul 21, 2011)

I'm glad you are doing well! The first couple days are the hardest - I'm sure you'll feel much better.

Will you be doing RAI?


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## Andros (Aug 26, 2009)

I am so so glad you saw the ENT; this has been truly a life-saving moment. You just take it easy now; you deserve it.

Follow doctor's orders to a T. That was a huge huge growth. Yikes!

Did they use staples, stitches or steri-strips? How does it look and as of this writing, how is your calcium?

Sending gentle hugs,


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## jenny v (May 6, 2012)

So glad you got it out! Take care of yourself and take it easy for a while, like joplin said, the first few days are the hardest and then you'll bounce back in no time.


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## Cahlin (Jan 7, 2014)

Hi again everyone! I was able to go home yesterday morning, my blood was drawn early yesterday morning to check my calcium and hormone levels and they both came back good! My surgeon is seriously one of the best and most caring doctors I've ever had! My sister said he seemed a little concerned because of the size of the tumor I had and the fact I'm pretty young and petite, I think it unsettled him I had cancer. He actually told me before my surgery that he was really surprised when the pathologist told him he was looking at my cancerous slides. He said I'm a great patient because I've done my research so it was easy to be on the same page. He also literally stayed with me in the recovery room until I woke up so he could answer any questions I had and then spent a half hour in the waiting room talking to my family, he checked on me late that night before he went home, and he checked on me early the next morning and was super patient and let me ask whatever I wanted with no sense of being rushed or anything.

Now that I'm home I actually feel okay! Really just soreness from swallowing, talking, laughing etc. My surgeon put me on Cytomel for up until my nephew is born, he really works with his patients because originally he wanted me to got my RAI treatment in 3 weeks but he wants me to be able to be there for the birth. That'd be so horrible if I had to be in isolation at that time! He said its policy for the hospital here to do a full-body scan before I get my RAI treatment, but I'm sure we'll talk more about the next steps at my follow up.

It's still a trip thinking about the fact I had an orange sized tumor that definitely was cancerous in my neck. Even still throughout this whole ordeal I haven't really freaked out so to say, my family seems to be more concerned! My sister told me she almost broke down when they wheeled me to my room because she realized that it was a close call for me (I didn't realize how close). She actually scolded me because I didn't really tell her any of my health concerns until about a month or two ago. She had so much on her plate regarding health issues I didn't want to bother her, but she is right...obviously this was pretty serious! I'm just glad it was caught in time before even worse complications started to arise!! Anywho thanks again everyone for your support, it really helps knowing there are other people who have gone through similar ordeals!


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