Hi Christine, Thanks for sharing your experience. It's good to hear what others have been through and how they deal with it. I believe the reason I need to be away that long is because my children are so young and also because I will be having a high dose due to the size of the tumour I had and the extent of lymph nodes involved. I'm sure the nuclear medicine specialists will confirm everything regarding that the day I go in for treatment. I already have my appointment with the Endo booked for 30th Oct so I should get the ct scan results then. Very grateful I won't have to wait too long. I do believe the waiting part is the hardest throughout this whole experience and I have been very lucky I haven't had to wait long in between appointments etc. so the three of us fall into the differentiated category (the good end of thyroid cancer spectrum) which is papillary, follicular and hurthle cell. The side you don't want to be in I guess is Medullary and Anaplastic. Especially Anaplastic. Any of the 'good' ones can turn nasty I guess but there are various factors involved. I'm happy to hear Christine that so far you got the all clear and I hope you stay that way 🙂 Good on you Ann for having a massage, I've yet to get one as I can't really afford to spoil myself, I do have a. Dry supportive network both with family and friends and work colleagues so that makes up for it :) Hope you both have a great weekend. Christyanne ... View more

Being hungry and eating more shouldn't cause any change to the cancer. If you are concerned about that, certainly ask your doctor. I would say, if you are hungry, then eat as much as you want! Just try to eat a healthy diet, something that will make you feel better. Less processed and packaged foods are the way to go. If anything, you need energy to get you through the day and look after yourself and your children. Let the doctors worry about getting rid of your cancer. You just do whatever else you feel you need to at the moment. I'm sure you will feel better after the radiation and you can get your medication levels to a 'normal' dose and it will help you feel a lot better. Try and take it a day at a time. That's all you can do. But please speak to your doctor with any concerns you may have and I'm sure you will feel a little better afterwards. ... View more

Being hungry and eating more shouldn't cause any change to the cancer. If you are concerned about that, certainly ask your doctor. I would say, if you are hungry, then eat as much as you want! Just try to eat a healthy diet, something that will make you feel better. Less processed and packaged foods are the way to go. If anything, you need energy to get you through the day and look after yourself and your children. Let the doctors worry about getting rid of your cancer. You just do whatever else you feel you need to at the moment. I'm sure you will feel better after the radiation and you can get your medication levels to a 'normal' dose and it will help you feel a lot better. Try and take it a day at a time. That's all you can do. But please speak to your doctor with any concerns you may have and I'm sure you will feel a little better afterwards. ... View more

Hi Ann, I am 36 with two young children as well. I guess it's hard enough for men to deal with us women and our 'emotions' on a good day let alone try and grasp the concept of what we are dealing with here. A man I feel will never truly understand. And of course you are tired. Just because you don't 'work' doesn't mean you aren't working hard enough at home as it is. I live outside of Sydney. They have to stop Thyroxine 6 weeks before radiation as it takes 4 weeks to completely be out of your system. I was given Cytomel (think thats how you spell it) which is a T3 supplement and will stop that in less than a week as it takes two weeks to leave the system. I was given this to help with the side effects of being hypothyroid. So for two weeks before radiation I will be on NOTHING. Will be in a complete Hypothyroid state. And while I don't like it, I will do anything to give the radiation the best possible chance of doing what it needs to do. I was also given a calcium supplement (I only lost one parathyroid gland though so no issues there, it's just to be on the safe side). My doctor did explain about the injection but i can't remember why that wasn't really an option. I think it may be expensive and going off the meds is the best way to ensure best possible uptake. And yes, two weeks before I need to start a low iodine diet. No bread, milk chocolate, seafood or soy products. Limit dairy (milk for coffee is ok) and limit processed foods as they are high in salt. I try and eat as much fresh or raw food at the moment (helps make you feel better) and of course is better for you. Now I'm far from being a doctor, but from what I've gathered (and please confirm this with your own doctor) the reason for being off medication is that Thyroxine suppresses your hormone levels (and can help suppress the growth of cancer). Cancer cells thrive on high amounts of hormone....The thyroid gland is the only gland in the body that uptakes iodine. Hence the reason why they usually only administer Iodine Radiation. (even for recurrence) The low iodine diet is so that your body will be starving of iodine and when they give you the iodine radiation, your thyroid will soak up as much as it can of it. The radiation will then kill off any thyroid tissue left and hopefully spread to any other cancer cells lurking around (such as in lymph nodes). It takes about 6 months for it to do its thing. Then they will do a Tg blood test which can be a great marker for cancer cells still hanging around. Tg is produced by the thyroid. If the thyroid is completely killed off with radiation then it shouldn't produce any Tg. if you have a blood test and it comes back at 0 then that's a great sign there is no other cancer cells still hanging around. If that level goes up, it should alert your doctors to do further tests (which they will most likely still do at 6 month intervals until you are all clear after a couple of years and then they will become annual check ups). I understand this can be a scary time for you, especially without a great support network. I encourage you to speak with your doctor. and feel free to call the numbers provided through this website. (or just speak to us!) Don't think that you are just passing the days by slowly doing nothing. You have two beautiful children who need you. So you need to look after yourself so you can continue to be their mum 🙂 ... View more

I should also probably add that's its only been just 3 weeks from your surgery. It's been 5 weeks for me and I'm still feeling very strange. Very tight, sometimes a little sore. my voice is strange (and worse if I'm tired or stressed or upset). The hardest part after surgery for me was the claustrophobic feeling of being strangled. Scar tissue will form and feel tight - you are probably feeling this now and the pain in your shoulder could be a symptom of the surgery (they may have hit a nerve?) but most symptoms are temporary. A lot of them can take up to 6 months even a year to feel 'normal'. I am still a little swollen under my chin and numb still which again is normal. It might be a small scar and a small gland, but your neck is a major thoroughfare and does a pretty important job, I never realised how exhausting it is to hold your head up all day! As Christine suggested, take paracetomal as needed, enjoy soaking in some Radox baths, go for massages (if you can) and rest as much as possible. I returned to work a week and a half after my surgery and in hindsight probably should have taken another week off. I crashed on the 4th and 5th days after surgery, was at an all time low and cried on and off all day, but I got better. Now I probably only do that once a week, when it all just gets too much and I need a release. Best thing to do - GO WITH IT. Let it out. It's ok. Will make you feel better afterwards. You are in limbo land. I hate waiting and I hate surprises and the unknown. You will need to get used to that! I think that's the hardest part of all of this. The waiting. Especially after we have radiation and need to wait 6-9 months to see if it worked!! Just put it to the back of your mind and do your best. That's all you can do. Life goes on and tomorrow is a new day. If you are having a bad day today, it's ok 🙂 You are allowed. Blame the thyroid you no longer have 🙂 ... View more

Hi Christine 🙂 Having a good day today 🙂 Waiting for Radiation. That will be interesting, the hardest part being away from my family for 14 days. Hopefully I don't suffer any of the side effects I've read others have experienced but will deal with it as it happens, at least I know what is happening if it does. How are you travelling? Christyanne ... View more

Hi Christine 🙂 Having a good day today 🙂 Waiting for Radiation. That will be interesting, the hardest part being away from my family for 14 days. Hopefully I don't suffer any of the side effects I've read others have experienced but will deal with it as it happens, at least I know what is happening if it does. How are you travelling? Christyanne ... View more

Christine is correct and was nice enough to reply to me when I first came onto this site. (Thank you Christine). You are not alone. ... View more

Good morning Ann, Firstly, sorry you have had to even join this site in the first place, but it's great to be in contact with you. I had my surgery on the 19th August. A total thyroidectomy and central paratrachael node dissection. I had a singular solid nodule 4cm. They removed 8 lymph nodes and all contained metastatic cancer (which apparently now puts me at a higher risk of recurrence). Because of the size of my tumour and the total ratio of lymph nodes affected I am due for radiation beginning the 16th October. I have been advised I will be in isolation at hospital for 3-4 days then I will have a CT scan the day I leave to see where (if at all) and how far it has spread. I am then to live somewhere other than my own home for another 10 after this as I have 2 children under 3.5 years old at home and I cannot be in close proximity or have physical contact with them over the 14 days. I was started on Thyroxine (150 mcg) the day after surgery and this stopped 3.5 weeks ago in preparation for radiation. the hardest days I have experienced of being Hypothyroid is when I have gotten my period. still a few weeks to go though and I have been told it is completely normal to feel like I have chronic fatigue and be sad (more emotional than anything). I get body aches and get quite cold when others are warm (but then will have a hot flash). I have an increased appetite and am struggling to maintain my weight (due to the metabolism slowing down). I just take it one day at a time. I'm also very honest about how I feel and try and explain to my family how I am feeling. it is hard for them to understand because it is not 'physically obvious' and so hard for them to help if I'm having a 'bad day'. I also work full time and travel over an hour to get to and from work each day. I find I am at my lowest at the end of the day, but I believe if you can be in tune with what's happening to your body and recognise that these are symptoms of the change in body (no thyroid, no medication) then it is a lot easier to deal with and separate from day to day concerns. I will admit it is hard not to be a bit of a hypochondriac! and think that every little lump or tenderness is related to having cancer and I would suggest writing down the date and time and your symptom and keep a track of it to discuss with your specialist. I have an Oncologist and an Endocronologist on my 'team' now. Soon to have a Nuclear Radiologist added to that in due course! My initial FNAB came back as Hurthle Cell Carcinoma or a Variant of PTC (Papillary Thyroid Carcinoma) however final histology showed your good old garden variety of Papillary (I have learnt they really can't determine Hurthle Cell via FNAB) and will confirm this for you after your surgery. I went through a period of thinking that everyone makes out like it's no big deal "a good cancer to have" (really, who says that?!) but I get what they mean. Still doesn't mean that it's ok and it's not a big deal. Might not be to them, but it is to me. 3 months ago I was just a mum and wife and work colleague, and now I'm Christyanne, with Thyroid Cancer. It's always there, it will always be with me. I will have to declare it at all future doctors appointments or if I get asked what the scar is about on my neck (although mine is pretty awesome if I do say so myself, hardly recognisable). So you have had your surgery already and I'm assuming you are currently on no medication. Hence the reason you are having some symptoms. This is completely normal. And while the doctor says it won't cause any symptoms, unless he has had to go through the same thing, then I don't understand how he can say that. Most of it I find (and from reading other people's forums and blogs) is that anxiety plays a large part of this. Try to not look at it as 'cancer' as that word has terrible associations. I try and look at mine as more of a chronic illness. Stress will definitely not help you although it is hard to not worry. From all of the case studies and medical journals that I've read, I've learnt that this will not be life threatening (depending on your age and some other factors). All the doctors will talk about how treatable it is and it will have no impact on your life however the second part of that statement is untrue. The first part of that statement is correct. Surgery and Radiation can continue to treat what you have. It is your quality of life that will be affected, however you, and only you can make the choice on how you wish to live the rest of your life. You can look at this and deal with it as it comes, one hurdle at a time or you can look at it and believe it will be the end of you. And if you continue to live your life without being positive then chances are it will eat you up. Do not be afraid to ask your doctors as many questions you can think of, even if you think they are stupid. (write them down as you think of them so you don't forget). You need to remember that this is their job and they deal with it on a daily basis. it is not good for them to become emotionally attached to your journey otherwise they might not be able to do the best thing for you. But you are paying them a lot of money and therefore they should guide you through this. I have found the nicer they are to you, the more concerned I feel. ask them to be honest with you. It is good and I think very important for you to know what is happening with your body. It is hard for them to tell you 'what if's (which is very frustrating for us, and especially me who looks to be prepared for all scenarios). At the end of the day, you aren't alone and there are people going through the same thing as us every day. And I guess I try and look at it this way "it could be worse". I'm alive, I haven't been given a timeframe of when I should expect to die and I am relatively healthy and will continue to deal with this, as it happens. Sorry for the long reply, I just hope that you can relate to some of this (or anyone else reading it for that matter). Happy to talk to you anytime Ann! 🙂 ... View more

Hi Christine, I am a new member. Just wanted to ask you, were you diagnosed with Hurthle Cell in an initial FNAB or was that diagnosed after your initial surgery? I have recently had a FNAB and it came back suspicios for Hurthle Cell (oncocytic neoplasm) or a variant of papillary thyroid carcinoma. My oncologist isn't concerned at the 'type' and says it's more important to confirm what it is exactly after surgery. I am booked in for surgery next week (19th August). I haven't seen anyone else mention Hurthle Cell yet on this site was wondering what your experience has been. I appreciate hearing from you. Christyanne ... View more