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Scared.. Thyroidectomy scheduled for tomorrow..

BrockB
Posts: 8
Joined: Apr 2014

Hello,

I am a 27 year old male.

About a month ago, I was diagnosed with Thyroid cancer, from a large nodule being on my left side neck. I do not remember which type of cancer they said it was, as I was just distrought, but the appointment is tomorrow. They said it did go to my lymphnodes, and all they've told me is I will get it removed via a 5 hour surgery tomorrow, then a 2 hour wait in the recovery room, then get put into a regular room for overnight stay. I am very scared of surgery. I have never had one other then my wisdom teeth. I woke up 3 times during that surgery even though I was supposed to be "put to sleep." I am afraid of needles, I am afraid of being put to sleep again. I am afraid of all the 'if the cancer spread to your vocal cords, you could have permenant horse voice.' Etc.

Also, they say that I will be given a pill one a day for the rest of my life, which is 'just as good as having a thyroid.' But from everything I have read on this forum.... It seems like a bad idea to even go through with this.. I have already had bouts of depression, anxienty, weight gain (and trouble keeping it at 250lbs), exhaustion compared to people my age (I'm just always so tired so easy), etc. Now, I see people having these things that didn't before their surgery.. So, I'm thinking all of mine are just going to completely worsen. I have tried to find positivity, but it seems there's so much downfalls, so many side effects, and so much wrong.. It's hard to look at this positive. My girlfriend tries really hard to keep my positive, but it's hard seeing all of what can come after tomorrow.. I'm very scared. I don't want my life to really end tomorrow. At this point, I wonder if I should even go through with the surgery or not..

Any words of wisdom would be greatly appreciated..

Thank you,

B

Baldy's picture
Baldy
Posts: 239
Joined: Mar 2011

Hi Brock,

I went through almost exactly the same things you're going through now.  No prior surgery, fear of needles, were both things I was dealing with.  My cancer was diagnosed almost exactly the same way, a lymph node in my neck, right side for me.  I was in the OR for over four hours, I had a neck disection too and from their 5 hour estimate, it sounds like you'll be having one too.  I was also in the hospital over night and was home less than 24 hours after they wheeled me out of surgery.

It sounds like they told you Papillary?  If you had any of the other less common types which are also not as easily treated, they probably would have made a bigger deal than it sounds like they did.

Don't worry about what might go wrong, they have to tell you about that to satisfy the lawyers.  You probably will lose your voice for a few days or so after the surgery since they're going to have a breathing tube down your throat, I know I did, it was weeks before my voice was back to normal.  So don't freak out when you wake up after the surgery and can barely whisper, that's the way I was.

I doubt that you'll wake up during the surgery, the anastesia they'll give will be stronger than what the dentist gave you.  BUT, I think you should tell the anastesiologist before he/she puts you out about waking up during your wisdom teeth extraction.  That way they'll watch closely and they may give you a little stronger dose to make sure.

Don't judge what to expect by what you read here on this web site.  People who aren't having problems almost never bother to look for a support web site like this one.  And, from what I've read, most people don't have any problems with this surgery and don't have any problems with the thyroid medicine.

Try not to worry, I know easier, said than done, I still worry sometimes even though my doctors tell me everything is OK so far.  This is scary stuff and it's normal to freak thinking about it.

Good luck tomorrow!

Alan

BrockB
Posts: 8
Joined: Apr 2014

Thank you, Alan.

I appreciate the response. And you make a lot of valid points. Thank you for helping me put my mind at ease a bit.

I will do as you said.

How did your neck heal up? How long were you in bed for? Or before you were able to at least get up and cook and stuff? What am I looking for in terms of being able to go back to work? I work at a call center, so I use my voice all day.. I know every one heals at their own rate and all, but I'm just wondering what times you had for healing up.. I apologize for the 21 questions, haha.

I'm hoping to go into this thinking positively, and hoping that a lot of the issues I had already might even get better.

Thanks for the good luck,

Brock

Baldy's picture
Baldy
Posts: 239
Joined: Mar 2011

Hi Brock,

Sorry to be late with this reply, you should be in bed now resting up.  {I guess you might be out west, so maybe you're still up.}

Immeadiately following the surgery, I was too wound up to sleep much that night in the hospital.  Maybe the stuff they gave me to wake me after the surgery kept me up, don't really know.  So early the next afternoon, I hit the wall as I was checking out of the hospital and took about a four hour nap when I got home.  After that I was OK a little tired but able to function mostly normally.  I went to see the surgeon after a week {might have been 10 days, I can't remember for sure} and he was happy with me so I started doing anything I wanted after that.  I was glued together after the surgery, so there were no stitches to remove.  They did put a couple of drains in my neck that I had to take care of which the surgeon took out when I saw him, a little gross but not too bad and I've been known to almost pass out from scraping my hand.

It was a little while before my voice was completely back.  I was whispering for I guess 2 or 3 days, after that I could talk fairly normally but would lose my voice again if I talked too much.  That gradually got better until my voice was completely back after ... maybe a month or six weeks ... I can't remember exactly.  I had a stiff neck for a little while too, gradually got better after maybe a couple of weeks or so.  They gave me post-op PT exersizes to do that helped a lot with that.  They were concerned because my right shoulder had dropped an inch or two after the surgery and the PT was mainly for that.  It didn't take too long for the PT to fix that.

I'm retired, so I didn't have to go to back to work.  But if I had been working, I guess I could have gone back after a few days. I was a computer systems administrator so I wouldn't have had to talk or do anything physical.

You're probably going to have some nerve issues with your neck. It depends on the person, maybe nothing at all to some major issues.  BUT, the major problems aren't very common, only a few of the posters here have talked about having major post surgery nerve problems.  For me, short episodes {30 seconds once or twice a day in the beginning to maybe once a month now} of deep itching that can't be scratched but has to be rubbed vigorously.  Short, sharp little pains {like a single hair getting pulled} that happened maybe once a day and got less frequent until they went away after a year or so.  A loss of fine feeling in the area of the dissection, I can't feel temperature there anymore and light touches are muted or completely missed.  But if I push moderately firmly in the area, that's normal.  There were also some wierd nerve related things that lasted a few months, every so often it felt like someone was tugging on my right ear lobe.  Strangely, some areas now seem more sensitive than they were before the surgery, the top of my right shoulder in particular.  When I move my head, I feel a slight tugging in my right neck, I guess there's some scarring and it isn't as flexible as skin.  I think this has gotten better than what it was at first but I doubt it will ever go away. I would describe all these as minor, annoying at most, but nothing debilitating in any way.  From what I've read, most people don't have this much.

I'm 54 now and did all this when I was 51, you should have any easier time than I did just because you're so much younger.

Alan

PS Caitlin's right, tell the nurses about your needle phobia, they should be very understanding and help you as much as they can.  I remember that the nurse in the admission area put my IV in the wrong arm.  When the anestesiologist came in and saw that she started to put another in, but saw my reaction, smiled and said, "Don't worry, I'll get you under with the first IV and put the second IV in then."  What a relief!

amorriso
Posts: 186
Joined: Oct 2010

The more questions you ask the better you will feel. We have all been there. I know it's a lot to cope with, and the thought of having to take pills everyday can be depressing. i used to get down, and angry, until a friend of mine's child developed diabetes. Over night their world was ruled by needles and diet. And so many potential risks.  At that point I kind of thought to myself..hmmm, ok...I can deal with a pill, scans now and then and a fairly normal life.

I don't like IV's...my veins in my hands are incredibly hard to find. I learned this after surgery 1, and for all the rest i get them to put me under first, then they start the IV's. It's much easier for all of us! I got to know my surgical team well so we can discuss what works best for me. 

I too had my incisions either glued or held together with dissolvable sutures. I could shower after day 2/3 as long as I made sure the area was dry. I used a hair dryer on low heat ...works great. I able to drive after about a week...carefully though because I couldnt shoulder check well! 

Treat yourself well before and after the surgery. Let yourself heal. Once you get started on your meds you will get used to it. It will take time to adjust, but there is no reason not to think you can't go on to have a great life.

flygirlc
Posts: 31
Joined: Mar 2009

The previous poster said almost everything I was going to say. And said it well :-) I went through pretty much the same thing also. I HATE HATE HATE needles (pass out having blood drawn etc). I checked in a little early because I was absolutely terrified of the IV. Talked to the nurse, asked if they could give me anything, they dismissed my fears. Was crying when the anesthesiologist came in and he was upset with the nurse, gave me some liquid valium or something similar. 5 minutes later I didn't care about anything :-) And I don't remember anything until I was in my own room that night, not the recovery room or anything. So please, in addition to telling them about waking up while having your wisdom teeth out, ask for something. I also now take lorazepam prior to lab work and cat scans etc. Now that I know there's an easy way, I refuse to do it the hard way any more. That also means I'm 38 years old and have to have my Mommy drive me to the dr a couple times a year but I'm ok with that.

Also, I'm not a doctor. But what you posted, especially that it has spread to lymph nodes, points to the need for a thyroidectomy. They have to tell you all the bad legal stuff, but very few people have permanent changes in their voice. Also thyroid cancer is very treatable and has a very high cure rate. I know, cancer is scary. But thyroid cancer is not one of the really bad ones. You can do this. I'm the biggest sissy in the world and if I can do it, you can do it.

As far as long term effects, every one is different. Some people have a harder time finding an ideal dose of thyroid hormone than others. Keep working with your doctor until they get it right. If you are having unpleasant side effects, talk to your doctor, there are different options as far as mediaction and you might have to try on a couple before you find the right one. I did. I'm on the right one now and doing well. Other than gaining about 10 lbs. But I'm okay with that. I am actually a happier person than before my cancer. Not "I had cancer now I really appreciate life" kind of happy but I have some memory issues now. I had to do 7 weeks of radiation (very uncommon and not used much any more.) And now I have a shorter attention span and less short term memory. However, I used to stress about little tiny things for days. Now I don't remember where I went to dinner last week. I still remember the important stuff but not the little stuff. It's kind of inconvenient on ocassion but overall I am much happier in my daily life now. Sounds weird and everyone is different, but not all side effects are negative. Some of the things you posted could be caused by being hypo or hyper thyroid. Weight changes, tiredness etc. Maybe once you get your t3 and t4 levels straightened out those issues might improve.

Sorry I know I rambled on a lot about my own experiences but hopefully it helps you feel a little better about what's ahead. Let us know how it goes. I'll be sending good thoughts your way tomorrow. Good luck Brock and I hope everything goes great for you. Sincerely, Caitlin

Also, www.thyca.org has a lot of really great helpful information.

BrockB
Posts: 8
Joined: Apr 2014

I appreciate the responses.

The surgery went well. This is day 3 of me just recovering at home. Lots of pain, but lots of vikodin and tylonole as well, haha.

I have 2 large gash's from the dissection.. Looks gross, and tightens from time to time, but it's ok so far. I have been very emotional, the girlfriend says. And also, my smiles have been away for the most part. I try and explain it's just the change and the pain, but it will take time, I suppose.

Nothing huge to report, I see my endo and my surgeon again a week from today to get the sutures out and talk about post op stuff. I'm guessing the RIA(?) where I will take a tablet to kill off the rest of the stuff in me for 3 days will happen. Awaiting that info, but for now, just trying to heal so I can go back to work.. I'm going to not even have money to pay the bills, from having to miss this week or two.. Blah. /life

Thanks again for the info and wishes, guys,

Brock

amorriso
Posts: 186
Joined: Oct 2010

Glad things went well and you are at home. Nothing like your own place to help feel better. Yes you will experience a roller coaster of emotions...that's very normal considering what you have been through. The pain should subside in the next few days. Some people find that using one of those neck travel pilows helps with sleeping or even just resting. 

Have you been given your replacement thyroid meds? make sure you take it correctly. any problems with calcium levels? 

Once you get the pathology report you will be ready to move on to the next step in getting well. Write us any time. 

take care

flygirlc
Posts: 31
Joined: Mar 2009

Sorry I didn't see this before now, crazy couple weeks at work. Glad you are home recovering. The first couple weeks were the hardest, for me anyway, after that I recovered quickly. Sounds like you should be close to that yourself. If you have to do the Low Iodine Diet before RAI check out thyca.org, they have a very helpful cookbook and lots of easy to understand guidelines. I have to do it again in a couple weeks, it sucks but it's do-able.

And you are allowed to be emotional, you've just been through major surgery, are probably experiencing a lot of hormone changesand dealt with cancer! It would be surprising if you weren't a little emotional. She's probably scared for you and working through her own feelings about it. I think there is a pretty active caregiver community on here that she might find helpful.

As far as your scar tightening, I tried Mederma, but it was too itchy for me. I had good luck with vitamin e capsules though. And just plain old lotion, which I still try to apply every few days.

Good luck and hope you continue to recover quickly, also hope you get back to work soon. Ask your doctor/hospital it they have someone who can help you find assistance with financial stuff. Sometimes there is help available with some things, my hospital had one person just for that, I didn't use any of the programs they had (my parents helped me out some) but there were several available. Keep in touch! Caitlin

kiki81
Posts: 2
Joined: Jun 2014

Hi Brock,

 

I recently had a TT (infact it was 6 weeks ago). Feeling tired after surgery is normal as well as feeling down. It will soon change. Listen to your body and dont over do anything. If you need to rest - rest! If you have energy to go for a walk do that too. Try not to be around anyone that has a cold etc as your immune system will be weak at the moment.

I'm due to have my RAI in a few weeks and incredibly nervous but I'm hoping it goes well and I kick this cancers ass!

Stay Well :)

BrockB
Posts: 8
Joined: Apr 2014

So.. It's been about 9 months since my TT.

I'm not feeling the same as I did before, even still.

I am more irritable than ever. I am depressed. I am negative. I don't smile as much. I don't feel as well because I'm more tired and fatigued than ever. I just don't have energy. I get tired very quickly. I usually have to nap around 5-6pm now, because I'm just exhausted, whether I'm doing things that day or not. I've gained 40+ pounds (lbs). My memory gets worse every single day (I've always had bad memory, but it's just getting worse everyday - I don't know if this pertains to this or not). My testosterone is now low, and I will need to start giving myself bi-weekly injections of testosterone.. Etc.

All in all, the cancer removal seemed to be a success... But losing my thyroids seems to be causing so much to me - It makes it hard to actually call it a success.

*EDIT*

My levels have been checked multiple times and I am told I am "correct" being on 175 mcg. I'm currently taking synthroid, but will probably have to take generic soon, as I no longer have medical insurance to help pay for it.

 

Baldy's picture
Baldy
Posts: 239
Joined: Mar 2011

Hi Brock,

Good to hear from you again.

It sounds to me like you're hypothyroid, that is, you need a higher dose.  Do you also have trouble keeping warm in the cold weather?  If the answer is yes, I would say you have most of the gross symptoms.  How much do you weigh now?  Usually your synthroid dose is close to your weight, I'm about 170# now and my dose is 150mcg which is probably a little low for me, but 175mcg (where I was a year ago) is probably a little high too.  I say this not because of my weight but because of perceived body temp, at 150mcg I have trouble staying warm and at 175mcg I sweat easy when I was active.  Also I'm slowly gaining weight even though my life style is pretty much the same as it was when I was on 175mcg.  The next time you see your doctor, insist that he address your symptoms and not focus only on the lab results.

Try to be more active if you can, dropping some weight should probably help lessen your symptoms including the depression, it does for me.  Your depression is normal, you were diagnosed with cancer, that fact is probably going to change your outlook from here on.  I think realizing that being depressed is normal helps you fight the depression, accept what's happening and lead as normal a life as possible.

Alan

BrockB
Posts: 8
Joined: Apr 2014

I don't have too much trouble with the keeping warm in cold weather. I get pretty warm easily, but it goes from warm to cold quickly. I sweat a lot, but I've always been overweight and have always sweat when active. I was 240 at the time of my surgery, and now I am ~285 and going up daily, it seems.

My endo seems to know what he's talking about.. And I was the one who talked him into going from 150 up to the 175, because of all of my symptoms, but he assures me it's more than fine here, and does not need to go higher..

Baldy's picture
Baldy
Posts: 239
Joined: Mar 2011

Anyone who no longer has a thyroid will have some trouble with both keeping warm when inactive and sweating when active.  We no longer have an active thyroid regulating our bodies apparent temp and instead have a constant dosage of thyroid hormones no matter what our bodies are doing.  This is true of every other aspect that the thyroid hormones control or affect to some degree.  For me, since I've decreased dosage, I have more of a problem staying warm and less of a problem getting sweaty, which is to be expected.

I'm no doctor, but given your weight it seems to me your dosage is low.  Do you have the results of your blood work?  If so you can look up the ranges the various indicators should be falling in.  Actually, the normal ranges should be on the lab reports.  I suggest you also see what he's testing to determine what your dosage should be.  There are a number of different things to test and he may not be looking at all of them.  From what I've read on here, some doctors seem to rely mostly on TSH and not on T4 & T3.  TSH is Thyroid Stimulating Hormone and is used by your pituitary to tell your thyroid (if you had one) to make the thyroid hormones which are T4 & T3 and control the various body functions that could be causing your symptoms.  Measuring TSH is an indirect way of determining if your getting enough T4 & T3 (and will be inaccurate if your pituitary isn't working correctly and possibly for other reasons as well), whereas measuring T4 & T3 is obviously the most direct way of determining if your getting enough T4 & T3.  The Synthroid (or Levothyroxin) pill you take is T4, most people are able to make T3 from T4.  If there is anything wrong with your dosage or your ability to make T4 into T3, measuring TSH may or may not show it.  As I said, I'm no doctor and probably everything your endo is telling you is correct, but you do need to be your own advocate, no one else will.

Again, I think you need to stress to your endo that he needs to address your symptoms and not rely solely on your lab work.  If this is a problem for him, try a second opinion or maybe even find a replacement for him.

Alan

bdenny1954's picture
bdenny1954
Posts: 6
Joined: Sep 2014

hi brockb. i was on 175 mcg levothyroxine and couldn't sleep,gained weight,felt terrible.i talked my endo into letting me go DOWN to 150 mcg and i feel a little better now.at least i sleep most of the night but still tired and achy.i'm guessing i'll have to live with this the rest of my life.my endo won't let me go any lower than 150 mcg because my tsh is a little higher than she wants it.well anyway like the food lion says thats just my 2 cents worth.take care

BrockB
Posts: 8
Joined: Apr 2014
Component Your Value Standard Range Units
TSH, External 1.710 0.300 - 4.820

That was done 12/9. And it seems to be a different test than the previous two he had done:

 

Component Your Value Standard Range Units
TSH 1.15 0.45 - 5.10 uIU/mL

 

That was done 9/9. First test since raising dosage from 150mcg to 175mcg.

 

Component Your Value Standard Range Units
TSH 5.27 0.45 - 5.10 uIU/mL

 

That was done 7/7. This was the last test on 150mcg of the medication, before moving to 175mcg.

 

And this is what he (my endo) thinks the cause of everything is, my testosterone levels:

 

Component Your Value Standard Range Units
Testosterone, Total (Males) 238 348 - 1197  
Free:                                 8.8                    (9.3-26.5)

 

So, yeah. Stuck in an endless cycle, right now. He wants me to start taking testosterone shots bi-weekly to see if that helps any of my issues; because, as he's stated, my thyroid level is 'fine.'

BrockB
Posts: 8
Joined: Apr 2014
Report Result Ref. Range Units   Status Lab
TRIIODOTHYRONINE,FREE,SERUM 3.5 2.0-4.4 PG/ML   Final 01
RESULT NOTE FASTING NO

 

Report Result Ref. Range Units   Status Lab
TSH 1.710 0.300-4.820 UIU/ML   Final 01
T4,FREE(DIRECT) 1.13 0.77-1.61 NG/DL   Final 01
RESULT NOTE FASTING NO

 

Forgot these ones.. These were also taken 12/3/14.

 

 

 

 

 

Baldy's picture
Baldy
Posts: 239
Joined: Mar 2011

TRIIODOTHYRONINE,FREE,SERUM is T3, so, yes, the labs do look fine.

There are also two other levels my endo tests for but I'm pretty sure he uses these to see if there is any evidence of recurrance, not to see if my dosage is correct.  Thyroglobulin and Thyroglobulin AB (Autoantibody), you want both to be very small.

The testosterone level may be a cause, I don't know what all low testosterone will do to you.  It's good to see he's looking around for causes to your symptoms and not just telling you "labs are OK, bye."

If nothing else is working, you may want to ask him about natural thyroid replacement hormone.  This was used before the synthetic drug we use now was developed.  I've read about it on the internet and there are people who swear by it, saying the synthetic drug never worked but the natural does.  You can find it in wiki under the article "Desiccated thyroid extract".  Read the article and if you think it's worth while, ask your endo about it and see what he says.

Alan

 

     
 

 

BrockB
Posts: 8
Joined: Apr 2014

Thanks for the replies to both of you. I'm glad my levels look fine, so my endo is looking at the correct things..

I will do my research.

 

Appreciate the replies :)

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