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Thyroid Disorders Community
This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, pituitary gland, cancers, thyroiditis, and thyroid Stimulating Hormone (TSH).
London calling again! News not what I expected - please help.
by jeblondon, Apr 19, 2008 10:52AM
Hi there, I posted from here in England a few weeks back and the forum was so incredibly supportive and helpful - I thanked all at the time but wanted to say it again and just give you an update on what has happened.
I went on my holiday, like I was advised, and had a wonderful time with all my family around. The op' took place on the 10th and they removed the left thyroid lobe, the lump and the isthmus. The recovery was not quite what I expected as I was in more pain and completely whacked out for a week after the GA. I had my follow up with the consultant yesterday and the good news is that the nodule was benign BUT they found 'micro-pappiliary carcinoma' in the left thyroid lobe itself! I was so shocked and upset - you know I had CONVINCED myself that it was all going to be fine - and now this. I thought the 'probem' was only going to be the actual nodule that had grown to 3cm x 1.5 but turns out they found something else which he said was 'incidental' to what they were actually looking for. My doctor is lovely and was so patient with me as I tried to get my head round what this means. He says that as far as he is concerned I am 'cured'. And as this is so small (3mm), that we were just incredibly lucky that the nodule grew and they found it by chance when they did the biopsies. However, to be on the safe side I am meeting with him and an Oncologist and an Endocronoligist in 2 weeks to discuss removing the remaining entire right lobe of the thyroid and whether or not to treat me further. He mentioned something about 'radio iodine' (?). I am so. so scared and in total shock.
Only my husband knows at the moment and he is devastated - his first wife died from cancer and I am step-mum to his three, plus our 12 year old. We are a close and loving family and I am the linchpin who holds it all together. They need me. I cannot tell the older ones about this - they lost their Mum already and I do not want to scare them. I am not telling the rest of the family or any friends anything until I get a clearer picture of where this is going. I don't know what to expect yet and I don't know what the doctors are looking for.
Will they scan me? What are the chances of my having more in the right hand side? If there is none' should I have it removed anyway? (because - hey - it grew on the left so why not the right?). Could it have spread already? Could it be a 'secondary' cancer from something else?? I mean I am so confused and dazed my mind is out of control. And lastly - I still feel so awful after the surgery, I didn't know it would be like this. My neck hurts badly, it's very lumpy although the scar is fairly neat. I am still not sleeping without painkillers and now this. I just feel exhausted and generally unwell and wonder if my thyroid levels have gone haywire since the op?. (Prior to the op they were entirely normal). My heart is having terribly palpitations and is beating very fast - even before I got the news yesterday - it has been keeping me awake by 'thudding' for hours. Oh dear - I sound like such a moaner!! So, so sorry, but you people out there were so kind before and I just do not have anyone to ask or talk to. The English health service are notoriously bad at communication!! Is there anyone else in the UK reading this or on the site that you know of? Please contact me.
I just am so scared and worried and am reading the forum to try to find out what I need to know right now. Any thoughts you may have on questions I need to ask would be very greatly appreciated. Sorry if the typing is bad but I am a bit tearful as I am typing this while the kids are out and Paul is not around. I am going to post a general one on the main forum too and hopefull might get some response to my questions - it worked last time.
thank you so much for taking the time to read this.
I went on my holiday, like I was advised, and had a wonderful time with all my family around. The op' took place on the 10th and they removed the left thyroid lobe, the lump and the isthmus. The recovery was not quite what I expected as I was in more pain and completely whacked out for a week after the GA. I had my follow up with the consultant yesterday and the good news is that the nodule was benign BUT they found 'micro-pappiliary carcinoma' in the left thyroid lobe itself! I was so shocked and upset - you know I had CONVINCED myself that it was all going to be fine - and now this. I thought the 'probem' was only going to be the actual nodule that had grown to 3cm x 1.5 but turns out they found something else which he said was 'incidental' to what they were actually looking for. My doctor is lovely and was so patient with me as I tried to get my head round what this means. He says that as far as he is concerned I am 'cured'. And as this is so small (3mm), that we were just incredibly lucky that the nodule grew and they found it by chance when they did the biopsies. However, to be on the safe side I am meeting with him and an Oncologist and an Endocronoligist in 2 weeks to discuss removing the remaining entire right lobe of the thyroid and whether or not to treat me further. He mentioned something about 'radio iodine' (?). I am so. so scared and in total shock.
Only my husband knows at the moment and he is devastated - his first wife died from cancer and I am step-mum to his three, plus our 12 year old. We are a close and loving family and I am the linchpin who holds it all together. They need me. I cannot tell the older ones about this - they lost their Mum already and I do not want to scare them. I am not telling the rest of the family or any friends anything until I get a clearer picture of where this is going. I don't know what to expect yet and I don't know what the doctors are looking for.
Will they scan me? What are the chances of my having more in the right hand side? If there is none' should I have it removed anyway? (because - hey - it grew on the left so why not the right?). Could it have spread already? Could it be a 'secondary' cancer from something else?? I mean I am so confused and dazed my mind is out of control. And lastly - I still feel so awful after the surgery, I didn't know it would be like this. My neck hurts badly, it's very lumpy although the scar is fairly neat. I am still not sleeping without painkillers and now this. I just feel exhausted and generally unwell and wonder if my thyroid levels have gone haywire since the op?. (Prior to the op they were entirely normal). My heart is having terribly palpitations and is beating very fast - even before I got the news yesterday - it has been keeping me awake by 'thudding' for hours. Oh dear - I sound like such a moaner!! So, so sorry, but you people out there were so kind before and I just do not have anyone to ask or talk to. The English health service are notoriously bad at communication!! Is there anyone else in the UK reading this or on the site that you know of? Please contact me.
I just am so scared and worried and am reading the forum to try to find out what I need to know right now. Any thoughts you may have on questions I need to ask would be very greatly appreciated. Sorry if the typing is bad but I am a bit tearful as I am typing this while the kids are out and Paul is not around. I am going to post a general one on the main forum too and hopefull might get some response to my questions - it worked last time.
thank you so much for taking the time to read this.
If you're having heart palpitations, you are probably hyper right now. Are you on meds right now?
I am not minimizing at all ........... I just cannot post too long cause kids need me at the moment ... do a search for ChitChatNine using keywords and also Utahmomma ... she, too, has micro's....................
I was told on the table all a-ok and then slam dunked like you and it emotionally took a toll on me but it is ok ............ WE ARE HERE FOR YOU!!!!!!!!!!!!!
Cheryl
Please tell you husband you are going to be ok and I hope it doesn't stir hard memories for him from the past ..............counseling is always something to consider ... free in the States through Cancer organizations .... this is scary stuff ...but not going to be life threatening most likely. (of course I'm not a Dr.)
Cheryl
worriedinmd -
No, I am not on any meds at the moment. I was not on any prior to the op as my levels were fine but they are testing my bloods in 10 days. BUT I forgot to say the doctor also told me there was 'thyroidistis' or something?? And he thought I would definitely have to go onto a drug called thyroxin (?). xxx
chitchatnine -
thanks for your reassurance - yes I feel like like I have been hit by a truck and am walking in a daze at the moment! Go sort out those kids!! Mine are out at the moment hence I am on here! xxx
Oh 20% of the time the other half doesn't work .. that was me :0 .... figured that one out with symptoms of hypo + bloodwork @ 2 week mark ..... also Synthroid for life for cancer supresion .. goal TSH <1.0 for me.
C~
What is Synthroid? Is it like thyroxin we get given here in the uk for low thyroid levels?
Is it an attempt to suppress cancers? And, sorry, what is TSH? (Gosh I need to get myself informed here really!!)
You are right on the button with the reaction of my husband - he is scared I think and very bad memories are surfacing. I caught him crying last night and he is a big toughie so I feel bad that I am making him feel like this. That is why I am not telling the kids anything yet.
http://www.medhelp.org/health_pages/Thyroid-Disorders/Common-Thyroid-Disorder-Drugs--Medications--Treatments/show/115?cid=62
And TSH is name for bloodwork test to measure amt of thyroid stimulating hormone being made by what is left of your thyroid (I think that is the name ??).
Those close to us react with fear generally ............but YOU MUST ACCEPT THIS yourself first before others ....... or it will kick you later ok ?
Off again ...........didn't want to leave you though,
C~