It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Thyroid Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 09-24-2007, 05:47 PM   #1
Junior Member
(female)
 
Join Date: Sep 2007
Location: Texas USA
Posts: 29
scoobagirl HB User
Upcoming TT surgery - papillary cancer - questions

I was dx with papillary thyroid cancer two weeks ago. Will have my pre-op consult on Wednesday with the oncology surgeon; he has already told us he will remove the thyroid and the tumor. Surgery is on 10/4 and we were told to expect the surgery to last 4 to 6 hours due to the size of the tumor. I've had sono-guided FNA and core biopsies, CT scan, and MRI. The tumor is quite large, appx. 2.5"-3".

So the point of this post is that I was explaining all this to a co-worker. I was telling her they would remove the thyroid and tumor, and then I'd be taking synthetic thyroid medication from now on, and that after the surgery the doctor would possibly order a radioactive iodine treatment and scan to see if there was any cancer left. I told her I'd probably be out a couple of months, since this cancer responds to treatment so well.

It threw me for a loop when she told me I was being too optimistic. She was determined to "make me wake up and smell the coffee" and proceeded to start asking how I knew that everything was going to be just fine, and listing all the things that I should "think about".

So, what should I realistically expect following this surgery? Is it that difficult to regulate the thyroid hormone medication? How long should I expect the pain and difficulty swallowing to last following surgery? Will my hair fall out? How long will I be off work? Is the follow up treatment and adjustment time miserable and uncomfortable?

I'm usually a positive, upbeat person and have a good attitude about getting through things. But now (maybe I'm having nerves) I'm starting to wonder if I'm not being realistic about it.

I really want some straight advice about this - anyone? I'm going to ask these questions on Wednesday but I may need some help getting to sleep tonight...

Jeri in Texas

 
Sponsors Lightbulb
   
Old 09-24-2007, 07:32 PM   #2
Senior Veteran
(female)
 
Join Date: May 2005
Location: NY
Posts: 3,719
Reece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB User
Re: Upcoming TT surgery - papillary cancer - questions

Sometimes, pp. can say stupid things without meaning to.

Is your friend a thyroid cancer expert? Has your friend had thyroid cancer? If the answer is no, then just forget your conversation with the co-worker, and block it out of your mind.

I feel great, I did starting 6 months after my surgery. My nodule was 2.5cm, and it spread into the muscle in front of it.

The surgery in my case was a breeze. I was working out of the house at the time, and started about 3 days after surgery, went to a party for a little while the on day 2. I really just had a sore throat, no pain, and I was tired from the anesthesia in the beginning. I had a great attitude, and my results were also great.

If you don't go hypo for too long, and get cytomel after surgery, you could probably work up until a week or two before rai. If you don't get cytomel, you might stop a week or two before that. Also, keep in mind, you could put off the rai for the summer, or some time better for your schedule if you want.

In thyroid cancer, you regulate meds. more quickly because you need to be kept a bit hyper, to supress TSH, so you won't get hypo.

I did have hypo symptoms before my RAI because I didn't have cytomel, and was hypo for too long, and I had hair loss, it came back, I was lethargic, that ended, it is much much easier than other cancers, where you must endure chemo and radiation. This is so nothing compared to that. This is also a cancer that doesn't really kill pp., so that helps too.

But that was just my experience, and it's similar to most that have come and gone thru. this board----this is scary, but you should do great---I wish you as much success as I had!

Last edited by Reece; 09-24-2007 at 07:34 PM.

 
Old 09-24-2007, 08:29 PM   #3
Junior Member
(female)
 
Join Date: Sep 2007
Location: Texas USA
Posts: 29
scoobagirl HB User
Re: Upcoming TT surgery - papillary cancer - questions

Reece, thank God you answered my post. I have no idea why my friend was being so... discouraging... for lack of a better word. Of course she doesn't have any first hand knowledge of thyroid cancer; she didn't even believe that wouldn't be doing conventional chemotherapy.

I've had other surgeries in the past 4 years - carpal tunnel was a piece of cake, but my knee scope was worse than I expected. So I'm mentally prepared for pain and post-anesthesia "brain fog".

I haven't been really "worried" about this, since the doctor was so straightforward with us about the surgery and possible post-surgery treatment. After reading about the problems other people have with calcium levels, hypo- and hyper- symptoms while regulating their dosages of synthetic thyroid, and the mood swings, I wondered if I should be expecting any of those things post-surgery. It sounds like some of the other thyroid diseases are so much more difficult to treat.

All of my thyroid bloodwork was in the "normal" range (I know the bloodwork doesn't show the presence of cancer) but I've wondered if I was slightly hypo- for several years - fatigue, dry skin, thinning hair, weight gain - though I'm also in early menopause due to hysterectomy so those symptoms could be due to the lower estrogen as well (even though I'm on hormone therapy). I just don't have the cold-nature of hypo-thyroid... I have perpetual hot flashes instead!

My mother had thyroid disease - was probably hyper - she had some kind of surgery and was on synthroid. This was when she was in her late 20's (50+ years ago) and after the surgery she was finally able to conceive, according to my uncle. He thinks whatever the thyroid situation was connected to her ability to get pregnant. I wish I had asked about that before she passed away.

Thanks for listening to me fret about this tonight. Will post more after the pre-op consultation on Wednesday.

Jeri in Texas

 
Old 09-25-2007, 12:29 PM   #4
Senior Veteran
(female)
 
Join Date: Sep 2006
Location: Northern VA
Posts: 951
ChristineVA HB UserChristineVA HB UserChristineVA HB User
Re: Upcoming TT surgery - papillary cancer - questions

Jeri,

Your co-worker is a bonehead!!!

I had my thyroid removed in 1995 due to papillary thyroid cancer. I had a 1 cm tumor plus multifocal papillary throughout the gland.

What I will admit to you is that is hasn't been the "breeze" for me as my doctor said.

You will or "should" have follow up RAI with a tumor that size. I ended up having to have 3 treatments over the course of 3 years to fully ablate my gland (the remnants the surgeon leaves behind). I was not prepared for this and, emotionally, it really took a toll on me.

I also can't say that I feel myself since it all happened but much of that is emotional I believe. It was just really hard on me--all those RAI treatments and stints of getting severely hypo.

But, believe me, it is nothing like the picture your co-worker is painting!

Keep us posted!

 
Old 09-25-2007, 05:09 PM   #5
Veteran
(female)
 
Join Date: Jun 2007
Location: Wyoming
Posts: 322
Lori123 HB User
Re: Upcoming TT surgery - papillary cancer - questions

Quote:
Originally Posted by scoobagirl View Post
I was dx with papillary thyroid cancer two weeks ago. Will have my pre-op consult on Wednesday with the oncology surgeon; he has already told us he will remove the thyroid and the tumor. Surgery is on 10/4 and we were told to expect the surgery to last 4 to 6 hours due to the size of the tumor. I've had sono-guided FNA and core biopsies, CT scan, and MRI. The tumor is quite large, appx. 2.5"-3".

So the point of this post is that I was explaining all this to a co-worker. I was telling her they would remove the thyroid and tumor, and then I'd be taking synthetic thyroid medication from now on, and that after the surgery the doctor would possibly order a radioactive iodine treatment and scan to see if there was any cancer left. I told her I'd probably be out a couple of months, since this cancer responds to treatment so well.

It threw me for a loop when she told me I was being too optimistic. She was determined to "make me wake up and smell the coffee" and proceeded to start asking how I knew that everything was going to be just fine, and listing all the things that I should "think about".

So, what should I realistically expect following this surgery? Is it that difficult to regulate the thyroid hormone medication? How long should I expect the pain and difficulty swallowing to last following surgery? Will my hair fall out? How long will I be off work? Is the follow up treatment and adjustment time miserable and uncomfortable?

I'm usually a positive, upbeat person and have a good attitude about getting through things. But now (maybe I'm having nerves) I'm starting to wonder if I'm not being realistic about it.

I really want some straight advice about this - anyone? I'm going to ask these questions on Wednesday but I may need some help getting to sleep tonight...

Jeri in Texas
Hi Jeri,
I just had surgery on Aug.24th and honestly, it wasn't bad at all. I was one of those with the calcium issue, though. I had to stay an extra day and get IV calcium. So what? I was glad to have the thing OUT. I did not need any pain med at all after the surgery. I think I can safely tell you that the word "uncomfortable" may describe the swelling etc. NO BIG DEAL. I was put on Cytomel for 2 weeks after surgery and felt fine. I am off the Cytomel for 2 weeks tomorrow and am just starting to get a "little" tired. I thought it would be much worse, although Reece had said on here to me that it probably would not be too bad, as the Cytomel helps get through it. I don't really know what to expect the next 8 days before I see the endo, but I can let you know as it comes, I am happy to be 1/2 way through it, though!! You seriously can only take it one day at a time, or I found it to be overwhelming..I am a detail oriented person...want to know everything and now, but you have to let go, and enjoy TODAY. That is my best advice, one day at a time. No One wants to go down this path, but seriously, do we have a choice? So, you know you have to, and you will get through it, as I plan to!! I do know how you feel though. I was at a soccer game and everyone has been so caring and thoughtful, dinners and goodies brought to my family almost everyday, etc. Help with transportation for my kids, even friends offering to bring LID meals, in addition to my families meals,etc., BUT..ONE person burst my little bubble and told me her old college room mate died of thyroid cancer.....Hey, thanks a lot, needed to know that right now, so I looked her in the eye and told her that their are 4 kinds of thyroid cancer and she must have had the more virulent one, and that I was going to be fine and that mine is CURABLE, and I feel BLESSED to have a curable cancer. WOW..took the wind right out of my sails...anyway, my point being, avoid her, like I am going to do, and focus on the POSITIVE. My surgeon who is an "oncology only" surgeon told me flat out PEOPLE DO NOT DIE FROM THIS CANCER. He knows a heck of a lot more than soccer moms, and/or co workers. They have no right to interject on something they don't know anything about. The docs say it will be fine, then go with that...it will be fine. The best of luck to you, and if I can help, I will try, its new to me, too, but so far, so good.
Take care,
Lori

 
Old 09-25-2007, 10:01 PM   #6
Newbie
(female)
 
Join Date: Sep 2007
Location: Highlands Ranch, Colorado, USA
Posts: 1
amac11049 HB User
Re: Upcoming TT surgery - papillary cancer - questions

Hi Jeri,

I am 26 days post surgery, was diagnosed with follicular cancer 2 weeks ago yesterday. As far as the surgery, I feel good. Here is my story...I went into the hospital on Thursday and was supposed to come home Saturday but had severe calcium issues. I was rushed to ICU and wasn't released until the next Wednesday. Come to find out, 3 of my parathyroids were taken out in the surgery and the 4th still isn't working. So, if you have any locking of your hands and fingers make sure you tell your nurses and let them know what is going. I was extremely low and it could have gone bad had I not gotten the correct calcium, citrical + vitamin D was the magic pill for me. Honestly I felt pretty good besides that, you just have to read and be your own advocate through each process. I was up walking around the next day and exercising the next week. I still have my tape over my scar and it comes off tomorrow. I am still a bit numb there but the surgery was so much less...less everything than I expected. Swallowing is actually so much better. My tumor was 5cm, so I guess it was getting in the way and I got used to it.

So my treatment is a bit different from some of the other posts. I am on synthroid right now and have been since surgery. I am trying to get regulated. I am extremely vocal about how I feel. I am and have always been active and my doctors know that. My levels have been low and they have had to bump my synthroid up 2x. I went in today because my last test showed an increase in my TSH so they bumped me up. I always get copies of my blood tests, I watch them and will probably forever. In 3 weeks I will start a low iodine diet and then in 5 weeks I will do thyrogen vs. deprivation. It makes you go hypo quickly and then you can do the radioiodine and then the scan a week later. Much less painful than going through 6 weeks of hypo, however there is about a 10% less chance of spotting cancer if in the body. Although this cancer is curable, I must say, through all of this I am tired of hearing "oh well you have a good cancer" ???? I really would prefer none. I too am an extremly positive person and I will make it through this. I will feel better however after my scan and it is a little frightening to have to look over your shoulder for the rest of your life. Bottom line, just do your research...good reference buy the book - Thyroid Cancer a guide for patients. Tells you about all of the procedures and a good reference. It's not something to take lightly, some days are better than others but overall I am still able to do my workouts, work, and play with my 3 kids. Somedays I feel like I have only gotten 4 hours of sleep but I have never been a napper and the truth of the matter life just doesn't stop around you. Hopefully you have a doctor that will take your word along with your numbers and not just the numbers and they are someone that you feel comfortable with...you will be seeing them a lot! I hope this helps, I was scared, I cried alot and have my moments about the cancer because it just stinks to have to do all of this but I will get through it as you will. Let me know if I can help in any other way.

AM

 
Old 09-26-2007, 06:30 AM   #7
Junior Member
(female)
 
Join Date: Sep 2007
Location: Texas USA
Posts: 29
scoobagirl HB User
Re: Upcoming TT surgery - papillary cancer - questions

Thanks for the replies AM, Lori, and Christine - it really has helped me a lot to hear about your experiences. I'm not so scared as I was earlier. Today is the day we find out the treatment plan; the pre-op consult is at 11:00 this morning.

I've made a list of questions to ask about the surgery and post-op treatment plan. I'm glad someone mentioned the parathyroids and the calcium - I will definitely ask about that. I'm concerned that since the tumor is pretty big, there will be a higher risk for complications.

I'll be sure to post as soon as we get home from the dr. appointment today. Thank you so very much! ((hugs))

Jeri

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
AGUS/AGC pap results - questions about ECC & endometrial biopsy angel4747 Cancer: Cervical & Ovarian 38 04-11-2012 12:21 PM
Need help...just got diagnosed with papillary thyroid cancer nymomtot Cancer: Thyroid 10 01-22-2009 10:02 PM
Surgery info update! cardshark Thyroid Disorders 16 07-16-2008 11:21 AM
?'s re: Papillary Cancer 2DogsSAC Thyroid Disorders 9 09-18-2007 06:00 PM
FNB said cancer but no surgery sch'd yet justmetoo Thyroid Disorders 9 04-26-2007 08:14 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:58 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!