Please Help! - removal of nodule on thyroid

[jeblondon]

Hi there, please please can anyone out there help me by answering my questions. I am a woman of  47 and I live in the UK.  Most of the people I read about on here seem to be so well informed about their conditions and I feel so ill-informed or prepared for what is about to happen to me.
Here in the UK we seem to be at the mercy of our Doctors and Specialists and time with them is so limited that you just cannot think about what you want to say or have time to digest what they are saying and ask questions. My husband and family are great and so supportive but I am worrying myself sick about my forthcoming surgery and what the implications are.  I do not have a very sympathetic Doctor and it is hard at this stage to change.
Here is my story.
I found a lump on my neck, just by my windpipe right before Christmas and went staight to my Doctor.  I was referred to an Endocrinologist who scanned the lump and then performed a needle biopsy, (FNAC). The lump, or nodule as he called it is on the left hand side of my thyroid and is approx 2.5 x1.5 cms and growing!  The biopsy results showed  'benign epithelial cells with no evidence of colloid'. He said that although this was reassring but that to be absolutely sure there was no cancer I would need to have the lump removed.
I was then referred to the surgeon who will do the op' who told me he would be removing the entire side of the Thyroid that the lump is on PLUS the Isthmus!!!!  This was a bit of a shock as I just thought the lump was going to be removed!  He tells me that 'hopefully' the remainder of the thyroid will continue to work ok and that I will not have any further problems.  If so - I will have to go onto Thyroxin. I am in a bit of shock about this and am very scared.  My surgery is scheduled for end of April as I have a holiday booked 1st 2 weeks of April.  The surgeon told me not to cancel my holiday as it was not too urgent to remove this nodule.  I am sleepless with worry and my heart palpitations have come back.  I am snapping at my husband and bursting into tears all the time.  I hate the way I am behaing and feel like a selfish creature when there are people and children out ther with much worse things happening to them than me. I am so scared it is not going to be good news when they take it out and that I may have cancer as both my parents and 2 of my grandparents had cancer - my father dying at the age of 59.
My questions are
1 - what made that lump grow in the first place? Is it something I did, or ate or whatever?? Is it hormone related or to do with my lifestyle.  I flew as long-haul cabin crew for 25 years but I lead a healthy lifestyle, eat healthily, drink very little alcohol. I am normal weight but I am Coleliac, just diagnosed last year. I took beta blockers for 3 years until last year to deal with heart palpitations. I still get them but try to ignore them. I suffer from frequent headaches and get terrible mood swings.  I have not had menopause yet but am sure I am perimenopausal.

2 - The results of my thyroid level checks they said were 'fine' but apparently I am showing 'positive thyroid antibodies' whatever that means?!!  My Mother has an 'underactive' thyroid and takes thyroxin daily.  Does this mean that I do not stand a very good chance of the rest of my thyroid coping?  And what are the signs if it is not?  Will I be tested to see if it is working?

3 - Could this nodule be affecting the way my thyroid is working now?  I feel I am getting all sorts of weird symptoms and I am trying to convince myself that it is just stress and worry about going through the op' but I am not sure. I have terrible headaches and feel so edgy all the time.  I am so tired I am in bed at the same time as the children each night and have problems dragging myself up in the morning.

4 - Please do you have any tips about the actual surgery and recovery?  I have read several people saying that the scar is not too bad but is there anything I can do to help my recovery? Will I be very sore? Will it affect my voice? How long before I will feel ok after the op'  How much should I rest, (Should I get the chance having 3 kids!).  What painkillers should I take?  I cannot take Codeine/Morphine.

5 - I am so FRIGHTENED about this op' and I am so ashamed to admit it to anyone.  I am trying to be very strong for my family and make light of it but I am so scared of what will happen to me in the future.  Is there anyone out there who has had the same op?  Did your thyroid, (or what was left of it) compensate or did it pack up?!  Did you have to have the rest of it removed too?

6 - Should I have cancelled my holiday and got this op' done.  The lump is growing - does that mean a bigger scar?  It is now quite visible. If it is cancerous am I taking a risk by hanging on until after my holiday?  

6 - My biggest fear - could it be cancer?  Why could they not tell definitely by the biopsy?  They said almost certainly it is not but they cannot guarantee and now I that is all I can think about.  WHAT IF............ My head is bursting with worries about my family if the news is not good. What would happen then? I have read that it is one of the more 'curable' cancers but it is still that terrifying word.

Thank you so much for reading this and I really hope someone out there could give me a few popinters to calm me down.  I am usually a pretty upbeat girl but this has really floored me!

[utahmomma]

Hey, not a problem.  Enjoy your vacation for us, okay?

Hugs and waves from the U.S.

[jeblondon]

THANK YOU SO MUCH!!!!!!!!
I wasn't really sure if I would get any response and I just cannot thank you enough for your kind words and the reassuring information. It is now evening here in the UK and I am a bit calmer tonight.  I am still worried but have it under control now.  Not sure how I will be though nearer surgery time!  But now I know I can back here and get some words of encouragement. HUGE WAVE AND HUGS FROM ENGLAND!!! xxx

[a_rodriguez_04]

Utahmomma always has the best advice.  I too have had the hemithyroidectomy due to the size of a growth that was non-cancerous.  I understand your concerns and worries, it is totally normal.  I am a 21 year old female that has had no previous health problems and this was my very first surgery. the surgery was over after about 2 hours and I went home that same night.  I was off of work on recovery leave for the rest of the week and all of the following week.  I just had my operation on the 27th of February.  It was not too bad I guess.  I still am having troubles with my voice going back to normal but it is no big deal, I can talk I just sound a tad bit different.  The entire right side of my thyroid was removed but it is too soon to tell if the left side will pick up the "slack".  PLEASE, do yourself a favor and have a GREAT time on your holiday.  You will be fine waiting til the end of April.  My nodule was partially cystic and partially solid and measured over 3cm.  It was first discovered in October via an ultrasound.  I had the FNA done in December and just had the surgery 2 weeks ago to the date.  I have a follow up scheduled on April 14th to check the hormone levels to see how the left side is compensating.  If you have any questions feel free to ask me...ENJOY YOUR HOLIDAY!!!  :)

[hazelhurst]

Utahmomma has great advice, as always. What you are going through is so familiar to me, since my story unfolded just the way yours did. No one knows exactly why nodules grow in the first place, and apparently it's next to impossible to remove only the nodule (though I did meet an Italian man who had an operation like that years ago, and it seems to have worked for him).  I had many nodules, and they removed the whole thyroid. I was lucky it turned out benign. It sounds like your doctors are giving you sound advice. Keep reading this forum and you will find many reassuring stories. Best of luck.

[utahmomma]

Hello and welcome.   I'll try to do my best on your answers

1-  nothing you did caused the nodule.  It is estimated that 30% of 30 year olds have thyroid nodules; 40% of 40 year olds, etc.   It just happens.

2-  Having normal thyroid levels is very common with a thyroid nodule.  The antibodies just mean that you may have a subclinical autoimmune thyroid condition.

3-  Your nodule could be affecting you.  Mine did and my labs were just normal.

4-  I had the surgery twice - easiest surgeries I ever had.  Five people in my family also had the same surgery with the same results.  The soreness isn't too bad - usually the biggest complaint is the sore throat from being intubated.  Some people have their voices affected although most find it is just temporary.  The thyroid wraps around all kinds of nerves - that's why it's important to find a surgeon who has lots of experience with thyroid surgeries.  You should rest as much as possible after the surgery but with both of mine I had my surgeries on Thursdays and was back to work the following Monday.

5-  Being frightened about this surgery is very typical.  I think all of us who have had the surgery were frightened - I know I was both times.  Whether or not the other half of your thyroid kicks in you will probably have to be on thyroid replacement hormones the rest of your life.  It's no big deal - just a tiny pill once a day.  After your surgery, and for the rest of your life, your thyroid labs will be monitored every 3-6 months to ensure that you are getting the correct amount of thyroid replacement.

6-  *DON'T* cancel your holiday.   Enjoy yourself!   Remember, worrying will just stress you out - it won't change whatever is growing in your thyroid.   Just be happy that you are taking the correct steps to get healthy.  Enjoy your holiday with your family.

6-  The fear that it could be cancer is a valid fear.  I'm not sure of what your ultrasound results may have said but your nodule is a bit more concerning because: A) it is a solitary nodule, B) you are over 40, C) it is not a functional ("hot") nodule (meaning it isn't over producing hormones).   I didn't even know what the thyroid did until my first surgery then I woke up in recovery looking at my mom's face and I just knew that they had found cancer.  What I realized is that you aren't going to be able to change whatever it is - just make sure you are going to get it checked.   There are no guarantees going into this surgery.  Some on here who were just sure they had cancer ended up with "benign" results.  Others of us who everyone just thought were overreacting ended up with cancer.  Whatever the result - you'll deal with it and we'll help you through with it.

Here's a web site that really helped me understand the thyroid and nodules (it also gave me some great things to discuss with my doctors):  http://www.endocrineweb.com/thyroid.html

I understand how this may be flooring you.  That's why you have US - we're here for you.

Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and possibly '08
three sisters with papillary carcinoma (all diagnosed in '04)