Well today I got a reality check for myself and it is only just sinking in. I had a lump in my neck which took over 6 months to diagnose to finally have it operated on the 5th feb removing my left thyroid. Turns out its cancer so have to have the other side removed on the 5th march as well but its ok as thyroid cancer is the best type to have as the prognosis in 10 years where others are about 5. Turn out I have a rare form of cancer - hurthle cell - and it is an invasive cancer that likes to travel through the blood stream and sight see and take residence in other parts of your body. Prognosis is no longer the happy 10 years but considerably less. OMG I have cancer. It hit home today and while I have made this blog humorous, the reality has sunk in as I have to have further treatment. Radio-iodine treatment does not actually kill the hurthle cell cancer but then it cant hurt to have this treatment as also I will have a full body scan which will hopefully show up if those little suckers have taken a holiday somewhere else in my body. So.. I would love to hear from anyone else who may have heard or know about hurthle cell cancer. Cheers Christine
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I'm sorry you have this cancer, Christine . I don't know anything about it but do know that others here have had it . The shock of having a rare cancer is one thing I know and I'm here 4 years later with no sign of cancer at this time . Others with the same cancer as me have not been so lucky and then others have lived for many years . I hope you too are one of the lucky ones .
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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
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Hi Christyanne, When finally I saw the surgeon to talk about my options for my 'lump' there had been no talk of any cancer as the biopsy I had had showed up nothing. As the lump had grown in the 8 weeks that this whole process had taken place my DR sent me to the surgeon who recommended I may as well get it removed now because if I wait another 3 months for another biopsy I would still be in the same place. I had the surgery on the left thyroid as that was where the lump was. The pathology would take about a week after the operation to get any results .... what happened was they got a preliminary result which showed up as a cancer which they thought could be a capillary or papillary or something they were not sure it had to be reviewed by a specialist in Sydney BUT it did mean I had to go back and have the other half removed because it was cancer. So 4 weeks later I was scheduled back in to have the right side removed. When I saw the surgeon the week before the operation for test results and operation prep...this was when I found out that the cancer was not the capillary or papillary whatever but actually a hurthle cell carcinoma. Of Course it is a rare form of thyroid cancer only 3% world wide. After the 2nd surgery I was sent to an endocrinologist who would be taking over my care and I had to have radioactive iodine treatment and now it is regular monitoring. All the best for surgery. Cheers Christine
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Hi Christyanne, When finally I saw the surgeon to talk about my options for my 'lump' there had been no talk of any cancer as the biopsy I had had showed up nothing. As the lump had grown in the 8 weeks that this whole process had taken place my DR sent me to the surgeon who recommended I may as well get it removed now because if I wait another 3 months for another biopsy I would still be in the same place. I had the surgery on the left thyroid as that was where the lump was. The pathology would take about a week after the operation to get any results .... what happened was they got a preliminary result which showed up as a cancer which they thought could be a capillary or papillary or something they were not sure it had to be reviewed by a specialist in Sydney BUT it did mean I had to go back and have the other half removed because it was cancer. So 4 weeks later I was scheduled back in to have the right side removed. When I saw the surgeon the week before the operation for test results and operation prep...this was when I found out that the cancer was not the capillary or papillary whatever but actually a hurthle cell carcinoma. Of Course it is a rare form of thyroid cancer only 3% world wide. After the 2nd surgery I was sent to an endocrinologist who would be taking over my care and I had to have radioactive iodine treatment and now it is regular monitoring. All the best for surgery. Cheers Christine
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Hi Christyanne, When finally I saw the surgeon to talk about my options for my 'lump' there had been no talk of any cancer as the biopsy I had had showed up nothing. As the lump had grown in the 8 weeks that this whole process had taken place my DR sent me to the surgeon who recommended I may as well get it removed now because if I wait another 3 months for another biopsy I would still be in the same place. I had the surgery on the left thyroid as that was where the lump was. The pathology would take about a week after the operation to get any results .... what happened was they got a preliminary result which showed up as a cancer which they thought could be a capillary or papillary or something they were not sure it had to be reviewed by a specialist in Sydney BUT it did mean I had to go back and have the other half removed because it was cancer. So 4 weeks later I was scheduled back in to have the right side removed. When I saw the surgeon the week before the operation for test results and operation prep...this was when I found out that the cancer was not the capillary or papillary whatever but actually a hurthle cell carcinoma. Of Course it is a rare form of thyroid cancer only 3% world wide. After the 2nd surgery I was sent to an endocrinologist who would be taking over my care and I had to have radioactive iodine treatment and now it is regular monitoring. All the best for surgery. Cheers Christine
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Hi christyyanne I am new diagnosed with thyroid cancer too and have surgery 3 September, still waiting for the radioactive iodine treatment, the doctor said it take about 6 to 8 weeks to go , so anxious to take so long to wait, in my FNA show papillary and folicurey with facial hurdle cell change, I don't know what it means, I don't even want to ask the doctor what it really is after the surgery because I am so scared to hear that. What is your size of nodule. My one is 25mm and have 11 out of 16 lymph node are involved . I am so sick at the moment my doctor always said I am worry too much, but i don't think so, my inside body feel like burning, my shoulder is pain,etc.. Sudden with hot flash. I just wondering if u have any symtom as the doctor said thyroid cancer won't cause any symtom at all. Have u go through treatment yet? I am very down and always cry went I feel sick!
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I am sorry to hear that you are so unwell with your cancer. Mine was 49mm and was not in the lymph nodes. You do have to wait about 6 - 8 weeks after final surgery before having the radioactive iodine treatment. May I ask your age? Did you have all your thyroid removed or only one side? Are you now on medication? It is only natural to worry...especially when you don't know anything. I drink plenty of camomile tea and I have a supportive family. It is scary but worrying does not help and can add to your symptoms. I am happy to talk anytime. I know for me talking helps a lot. Don't every feel silly asking questions. At the end of the day YOU are important and your state of mind is important NOT how you come across to others. Take care. One day at a time. Focus on the positives. Treat the symptoms - Panadol, nurafin, hot shower/baths for muscle pain and if you are a believer...prayer. I hope this has encouraged you. Try and have a great day. Christine 🙂
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I am sorry to hear that you are so unwell with your cancer. Mine was 49mm and was not in the lymph nodes. You do have to wait about 6 - 8 weeks after final surgery before having the radioactive iodine treatment. May I ask your age? Did you have all your thyroid removed or only one side? Are you now on medication? It is only natural to worry...especially when you don't know anything. I drink plenty of camomile tea and I have a supportive family. It is scary but worrying does not help and can add to your symptoms. I am happy to talk anytime. I know for me talking helps a lot. Don't every feel silly asking questions. At the end of the day YOU are important and your state of mind is important NOT how you come across to others. Take care. One day at a time. Focus on the positives. Treat the symptoms - Panadol, nurafin, hot shower/baths for muscle pain and if you are a believer...prayer. I hope this has encouraged you. Try and have a great day. Christine 🙂
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Hi Christyanne, I hope all went well for you. How are you travelling now? Cheers Christine
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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! 🙂
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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.
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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
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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
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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 🙂
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Hi this is ann , thank you for taking with me , I am 39 years old with 2 children , my own family is not here, my husband is the Person not talking much so I don't feel support from him. I am so tired I don't work. I spend my time everyday for nothing , the time go so slow. After surgery I am on throxin ? And calcium. By the way , where do u live? I live in melbourne. I just wondering why they have to stop the medicine before treatment as I know that there are other option by injection , and do u have to go on the low iodine diet ?
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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 🙂
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Thanhs for the information, I too increase appetite which is good for me, I 've been losing weight , I really want to put on some more before go on treatment, but I worry about the cancer may grow faster if I keep eating a lot , so confuse! Hopefully I don't need to stop the medicine I just can't imagine how to go through it. I weight only 49kg I don't think I have enough energy to do it, so.... Sad and scared:(
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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.
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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.
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Christanne, I just been to head and foot massage, tell u the guy said my neck is very stiff , he press in it very hard, I jump up said NO on my neck( not because pain, worry my lymph node on my neck being touch). Much more better, feeling relax, but after that go back to the cruel facts that can't be avoid. 😞 every minutes living with anxiety except sleeping, I rather sleep through the night which is the best moment for me.
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Hi Ann & Christyanne, Wonderfull about the massage. You need to have little treats whenever you can. I know I was terrified of my throat being touched and even just yesterday (almost 6 months after the operation) I accidentally hit myself in the neck when my hand slipped and still have a very uncomfortable feeling in my throat. So I thought I would update you both. In april I had the radioactive iodine treatment. Unlike either of you I did get the injections, 2 each day before the treatment. It is not a matter of money as it is all through medicare. I would suggest that you re ask your drs as to why they have not suggested this because as you have both said, the withdrawels of medication before this treatment is horrendous. The treatment itself, I found ok. There were no real side effects for me just very tired. I am surprised that they are suggesting 2 weeks isolation from your children because this is really overkill (i had read extensively on this). You are in hospital only 3 days. I went in on the Wednesday had the blood test to make sure all levels were ok to go ahead with the treatment. Then I was given the capsule at 2pm, in isolation till the Friday morning when they sent me for the body scan. I was out the door 12pm that Friday. For the next 2 days after coming home it is recommended you don't have physical contact with babies or pregnant women. After the 4 days from the initial taking of the capsule, really everything is ok as far as contact. Of course you take care because it is in your system for up to 6 months. Apparently we can set off the radioactive sensors at international airports...lol... I was very relieved when the radiologist at the hospital told me that my body scans showed the all clear because otherwise I would have had to wait another 2 months for results from the endocrinologist appointment. It was a relief to say the least. However, as I had moved to Tasmania, I had difficulty getting into an endocrinologist in tassie to take over my care and when I finally got an appointment and therefore cancelled further treatment in Sydney, they had cancelled my appointment and made it a month later. MAJOR STRESS as I wanted to know what sort of care would happen now. Things are supposed to happen every six months and it was getting closer and I wanted answers of course. I finally got into the endocrinologist late august. This specialist was very informative and certainly knew a lot. Apparently in Tasmania they are very used to thyroid cancers as it is very common there and she was also very experienced with the Hurthle cell and it is not the worst form of thyroid cancer there is one worse (don't ask me which on cause I was so relieved I did not hear the name). So today my medication has been increased because the boost received before the radioactive treatment lasts 2 months in your system and I was so excited as I was loosing weight (I am quite heavy) and then the last 5 weeks I started putting on weight again even though I had not been eating any differently and when I went to the appointment she said my levels were lower and this was why I was gaining weight. SO hopefully I will be on a better level (takes time to change in your system) and I will be able to loose weight again. Family can be a tricky thing. If you are positive they think you are casual about it and if you worry and are concerned they tell you you stress too much. Men don't really understand as they don't do 'sick' very well (or other people either like a mental illness if you don't look sick then you're ok). Children will find it easier to understand "mummy is just tired today" and "please help mummy because...". Of course if your children are under the age of 3 that's different. Because I ended up having 2 operations and the treatment all in 3 months, I was and still am very emotional at times (oversensitive) and find I get exhausted easily. I am not able to go for the walks I used to and I get physically tired easily. I have started a new job in july but just 2 days a week as a school chaplain. While I love this, I did not realise that walking and talking would be so exhausting. I do try and stay positive all the time but I do have some down times. These I don't really share, its usually on my own at night as my husband does not understand (I look well therefore I'm ok). Hearing from the 2 of you has been such an encouragement as I am truly blessed with good health. One day at a time :) Hope to keep hearing from you both. Cheers Christine
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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
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Hi Christine, great to hear u all CLEAR, hope u stay that way. and christyanne is on her way to get better, poor me I am the one come last. Very scary to know about the scan, I just don't want to know even though I have to face the facts! I just wondering about the heathy food, can We eat beef or lamb because I think red meat is not good got your health. And I also heard caffeine is not good as well, do we have to avoid it , I love coffee a lot don't want to give up. I need meat to put on weight but I know meat not good for cancer. I always a skinny one hardly gain weight maybe u think t am lucky, once I went the the doctor ask him to help me put on weight, he said I am crazy, 🙂 I am 163 cm only 49kg . Too skinny. Before that I was 53 kg which perfect , I seens then I lost 4 kg, I mention to my surgeon but he said not related to this cancer, I still nervous if any wrong in my body other than this:(
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I finally got an appointment next week to discuss the treatment I am going to have. So nervous for the treatment as I have bone pain in my shoulder quite a while. I 'Ve been waiting for 2 weeks with no phone call I end up headed straight forward to the newclear medicine department in the hospital and talk to them. So they gave me an appointment. I just can't imagine why they don't take it series
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Ann be encouraged ... one day at a time ... look for a positive in each day 🙂 I assure you they do take it seriously but unfortunately we are not the only ones and whereas it is the only thing on our minds ... they probably have hundreds of patients thinking the same. I am so glad that finally you are getting the appointment you want. One thing I did learn though is that you do need to ring them. DO NOT WAIT FOR A PHONE CALL. When my specialist said that they would contact me to make an appointment that was not true -they were waiting for me to ring them so therefore...RING ... Not sure about the pain in your shoulder - what does your general doctor say? You can only treat the symptoms so plenty of Panadol :) Try and have a good day. I look forward to hearing how you go. Cheers Christine 🙂
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I have had a ct scan 3 months ago , I am worry the radioactive iodine not work effectively. And I also concern why the doctor not check for my bone pain or whole body check up before go on treatment , so they know how far the decease have gone.
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Hi Ann, I'm a little confused. I thought you only just had the surgery this September and was waiting to have the radioactive iodine treatment. Keep taking the Panadol for your pain even if its every 4 hours for a few days. How old are your children? I hope they bring you joy :) Cheers Christine
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Hi Christine, I have 2 children age 10 and 19. The ct scan I done 3 months ago before I was diagnosed with thyroid cancer. Since I felt very unwell I know sometime wrong, I keep looking through my body, I had ct for my abdominal and pelvis, couple of chest X-ray , ECG done . I finally required my GP to have my upper spine MRI, that 's where they found the nodule in my thyroid . But I have had my left shoulder bone pain already 3 months ago, my Gp always said this is muscle pain due to I go to gym I hurt my muscle.
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Hi Ann, I believe they can't check how far it is spread until you have had your radiation treatment. (they can do one earlier, but they would have to give you a small dose of iodine radiation and doing so may further delay the proper treatment you need). I'm sorry to hear you are in pain, as Christine suggested, try and take some paracetamol to help you with this. Doctors do take it very seriously, however you may need to start trusting your doctors. I'm sure if it was something life threatening then it would be actioned asap. You need to ask them all of your questions and let them know how you feel and believe them when they tell you that you will be ok. Every day you worry, you may be wasting when you could be enjoying your beautiful family. Again, take every day as it comes. Enjoy what you have and try not to worry about 'what ifs' and think the worst because it may really be all ok, and you will be in the clear like Christine! And even if it isn't all clear, then your doctors will do their best to treat you and fix whatever they need to so you can continue to live a long and happy life.
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Hi christyanne Thank you for your encourage, this is very helpful for me since I am a quite anxious person, I still not quite stable with my mood , add up pain in my body, i so sad and angry and cry everyday, I like you said "a day at a time". I try to do it but it is hard isn't it. You are nearly on your way for treatment, how is your low iodine diet, I just don't know what to eat without tasty:(
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To be honest at first I was worried all the time, but doing lots of research and asking my doctors questions when I had them, has settled my own fears a lot. I was never concerned with the surgery and having the tumour or thyroid removed. I am not really concerned over the fact that I need to take medication every day for the rest of my life. It is a pain in the butt but I have to remember that it could be a lot worse. I also worry about recurrence as all the lymph nodes removed (not just some) were cancerous. And I have learnt that this puts me in a higher category for recurrence. I am also worried about having too much radiation for fear of developing a different kind of cancer. I hate the thought of having to wait so long to find out if the treatment works. I also am anxious about it all Ann, but I have also learnt some very important things such as: 1) this is physically beyond your control (you can't control what the cancer does or how it spreads) 2) The doctors also can not tell you what they think could possibly happen because if they say something and it does or doesn't happen then this can cause you to be even more upset about it all. 3) if a doctor doesn't seem to concerned about things, then you should either take it that a) the doctor may not know enough and you should seek a second opinion and b) if they aren't too concerned, then neither should you be. 4) While you can never escape what you are now having to suffer from, life goes on. Tomorrow is a new day and you should make the most of it. Life is too short to worry about things that you cannot control. 5) Worry about what you need to at the time and don't worry about things that may or may not happen. 6) the mood and all the other emotional stuff is completely normal. It is normal to be anxious about being told you have cancer. You are not on any medication and don't have a thyroid so therefore these are side effects, but it is only temporary. Hopefully you wont stay like this forever. So think of it is a short term inconvenience. I have a friend whose 6 year old son had a brain tumour (discovered after a few weeks of headaches). it is her only son and they have been told he will not live beyond 2 - 5 years. Can you imagine that? I also have a friend whose brother has liver cancer and has been told that he can't have any more treatment because he is going to die soon after only the week before being told that he was doing well. Can you imagine that? I have read other people's concerns on this website and some people are enduring some horrific circumstances. Now I am not saying that you or me or any less entitled to be upset and anxious and stressed about what we are going through, but it certainly reminds me that it could be a lot worse. Our doctors are telling us we can be treated. Unfortunately this all takes time. It is a process. Also, it is not nice to have to go off your medication and endure the diet and feel all these emotions in the meantime. But if its what you need to do to get better, then so be it. the statistics on death with thyroid cancer are quite low, so we should focus on that. We are in the better end of the thyroid cancer spectrum. No death sentences just yet. And chances are we will most likely die from something else before thyroid cancer becomes the reason (hopefully). There are lots of things to focus on, hope for and try and think positive about. Just need to do it a day at a time. it's good to cry and get it out of your system, but don't let it take over your life. It's not worth it. You will probably think back in a few years and think, what was I so worried about! it sucks we have to wait that long to be able to think like that, but what other choice do we have? My treatment starts in 2 weeks. The hardest part for me will be away from my boys. It is hard to get used to the diet, and worrying about what I can and cannot eat but any time I start to be upset or angry about it, I remind myself, it's only for 2 weeks and that's it. And doing this will give me the best opportunity to get rid of this so it is all worth it. A small amount of time of being a pain in the butt compared to being able to live a long happy life. it's ok with me. Trust me, I hate not being able to eat just whatever I want. I am putting on weight, and it makes me feel uncomfortable and a little sad, but it's only temporary. It's not forever and it will all be worth it 🙂 It's just harder for us because most of us don't have a choice but to do it and also we have to learn what we can or can't eat as well as go without some of our favourite things. If anything I am probably being forced to eat the best foods right now, something I should have been doing for a long time! if you type in 'low iodine cookbook' you should be able to find some nice tasty recipes that are good for your whole family. I hope you get to have a good weekend Ann, hope the weather in Melbourne is as nice and sunny as it has been in Sydney this week. It has been beautiful! Good luck at your appointment as well and write down all of your questions before you get there.
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OMG I just been to my doctor fr check up today , I have a small lymph node on the other side of my neck which I notice long time ago but i didn't mention to the doctor before surgery. Now he ask me to do FNA again for that if something comes up , I need a second operation to remove those lmyh nodes out. Oh my god. That means I have to postpone my treatment . But the problem is he is going away for 3 weeks time. I just don't know if I seek another doctor to follow me up. Such as bad day:(((
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Hi Ann, It's a bummer you didn't mention that to the doctor prior to having your surgery, That's why it is very important to tell them everything even if you think you are being silly. In the meantime, it's good that you have done something about it. Have the FNAB done. Try and be positive - it may be nothing so I would not go and cancel your radiation treatment until you get the results of that. And if it does turn out to be something, then just deal with it as it happens. It's much better to find out now and deal with it rather than have to wait 6 months after treatment. it might mean delaying your radiation but the sooner you get it out of your body, the better. When you arrange to have your FNAB tell them that it needs to be made a priority as you are due to have radiation therapy which may be subject to change pending the results. So it's important you can find out as soon as possible. in the meantime, as if there is another GP that can be updated on your history that can deal with your case while yours is away. I'm sure someone can surely organise referral letters etc as it's not the GP that actually deals with and does the surgery. They really are more of a messenger. I'm sure this doesn't mean everything will need to be on hold. Think of this as a good thing. it may be a minor setback but the sooner it is dealt with the better. Saves you having to do it later on. Please try not to get upset about it. Think of it as a process. it's just another inconvenience. You also need to keep in mind that it may come back again, but it's not going to kill you. You are not going anywhere anytime soon ok. it's just a pesky little thing that needs to be gone. You are lucky that your children are a little older and can somewhat look after themselves (mine are 3 and a half and almost 2) You just need to ask more questions and find out who is going to look after you while your GP is away. It will be ok. I'm sure you will be. I hope you don't think Im being harsh with you. I'm a very honest and upfront person and hate to see people worrying about something that may turn out to be nothing. or if not nothing, nothing too major to worry about. ok. x
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I don't care about GP, they are nothing help. I just want to change my surgeon because he is not taking seriously , I mean he should check my neck first before go on surgery, not only we tell him where The problem is . I totally lost confident with him, I just rang up other surgeon to see if they can take me over.
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That's good that you did that. You are more than entitled to a second opinion. My surgeon did check my neck but also said that it's not good to go 'fishing' for bad lymph nodes (there are something like 200 - 300 in your neck alone apparently) and all of your crucial veins and nerves etc are running through your neck so it is not worth having surgery for just one lymph node. You can end up with more damage than the affected node. I have looked into this and believe him. Have a look up some head and neck oncologists in your area and see if there are any reviews. You want a surgeon who does this type of operation a lot as it carries some risks. You don't want someone who only does it now and then.
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Just went to ultrasound, they found out 2 more lymph nodes in the right neck. Having FNAB done tomorrow. I am absolutely lost don't know what to do while my surgeon going away for 3 weeks , he ask me to wait for him to come back. No way, hopefully I can look up other surgeon who are able to take me over. (Sometime they don't want to because they are not your first surgeon). Why everything happened to me so badly. I am exhausted I keep crying a lot . I angry , upset , I think I nearly go mental illness somehow. Maybe I need counciling or take antidepressant pill to help me calm down.
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Have book for radiative iodine treatment on the 10 Nov. I need to stop the pill for three weeks, because the doctor said injection is only used for patient with no lmph nodes involved. Low iodine diet for 3 weeks more:(. But my Tg quite high4000 something( don't understand ). The radiologist said wait for the neck scan before treatment if show more activity in the neck. Need more operation:(try to stay positive now while we can not change everything . Just keep telling me what ever will be will be.
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Hi Ann, Sorry to hear of your news. I think you need to call the Cancer Council helpline 13 11 20. There may be someone that will be able to listen to you or talk to you because I don't think you sound good at all. I don't think there is anything I could say that would make you feel any better. The helpline have lots of people who speak to people in the same situation as you every day. I believe your tg will be high until after the radiation has done it's thing as you would still have some thyroid tissue and lymph node involvement. After the radiation has worked your tg should be 0. So don't worry about this too much ok? Like I mentioned to you before, it's good to find out all of this now and not later, that way the sooner it can be dealt with the sooner you can have the right treatment and start to get back to normal. The doctors cannot see into the future and can only deal with what they know and find. You have done all the right things until now. Please try not to get too upset or depressed about it. You will be ok. The doctors are very good at treating this sort of thing, unfortunately it takes longer than we would like. I understand how you are feeling. It's not nice and it's not fair, but it could be worse and you need to remember that. In the meantime, please call the helpline and speak to someone who is experienced in these matters and hopefully you will feel a little better afterwards. xx
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Yep I agree! You need to speak with someone. Writing on this site is nice but not immediate. Know that I am praying for you and for your peace of mind. I know this is the hardest thing to relax and have faith you are being looked after. It helps to have something else to focus on. Take care xox
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I always tell my husband I feel lonely and feel that I am the exceptional when I see people around me, I feel very unfair while everyone are healthy ( we are still young). I also ashamed for my scar when people stare at me . I even don't want to let my friends know by not seeing them or picking up the phone call. I think they may discriminate me... ( some friends are not that nice). My mother live in other country I don't let her know yet , she is old and I don't want her to be sad . I want to look for supporting group which we can meet each other in the same situation so I don't feel I am the exceptional. Do u have the same feeling?
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Good morning Ann, I understand you feeling lonely. It is hard for others to truly understand what you are going through, even when you are entirely unsure yourself. I'm sure you are still healthy - remember this may only be temporary. There is nothing to say you will be unhealthy for the rest of your life. If you're friends discriminate against you because of what you are going through, then that tells me they are not very good friends in the first place so you need to find one that is supportive and understanding of what you are going through, even if they don't understand you just need to explain to them that you just need someone to talk or vent to. As for being ashamed at your scar, I thought about covering mine up as well...but you should be proud of it. Scars tell a story, and while you don't like your story at the moment, one day you can tell a story how you are a cancer survivor! Also, it can show your children how strong you are and that wounds can heal and life goes on. And you can come up with some funny stories if people are staring at your scar - tell them you got into a bar fight, or maybe you had a voice box transplant or some other scary or funny story. Ask your children to come up with some ideas. It's up to you if you want to be honest but you should be proud of your scar. At least you are still here and alive to be able to explain what it is and how you got it 🙂 Some people have scars and don't get to live to tell their story. I understand you don't want to burden your mother, that is up to you. But she might be the best support you can get. And if you are worried then she will be worried. But if you can show her you have made it this far and that you will continue to fight whatever is happening then I'm sure she would be very proud of you. Imagine if this was happening to your children, would you want to know? Would you be upset if they didn't tell you and you couldn't be there for them when they need you the most? You are a mum too and that's what mums do 🙂 Yes I did look for a support group - on this website, and I get to speak to you and Christine and that has been a good support for me. As I am going through similar things so I like to hear about how other people are experiencing this. I may appear to be handling things ok Ann, but I have my moments as well! I was angry about everything on Sunday and on Monday I cried about everything. Yesterday I complained about the diet. See, I'm normal too and just like you BUT I don't like to let it ruin my day. Life is too short and I also don't like to upset the people around me. So I have my moment and get it over with and remember that I need to get past it and get over the next hurdle so I can be here a long time! I still suggest you call the helpline on here (131120) and they may be able to suggest support groups that you can attend in person and meet someone who feels the same as you do. I really think that would be good for you.
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Hi Christine, How are you? I just wanted to say sorry, I feel like we've hijacked your blog!! Christyanne
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Hey all good guys...otherwise I would not have had anyone to chat with :) Love you both. Keep Encouraged. Today is a new day 🙂
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Hi christyanne and Christine I am looking for the non iodine salt , but I can't find any. Any suggestion?
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Hi Ann, Sorry for the late reply. Non-Iodised salt is considered 'Table Salt' so look for the SAXA range with the RED writing. the one with the Green writing is iodised so you don't want that one. This is available at Woolworths or Coles or local supermarkets. This should make cooking a little easier for you! Hope you are having a better day today. 🙂 Christyanne
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Thank you christyanne . You and Christine are very helpful and encourage. Hopefully we are all doing well. Christyanne you are nearly on your way to treatment now . Are you feeling all right without medicine . Hope u cope well and all the best got your treatment . Wish u and Christine have another great weekend. Time going so fast as close to my treatment , I am nevous don't know what to expect, don'T want to think about it!
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You are welcome Ann, You are sounding a little better at the moment 🙂 I Haven't heard you say too much about being sad etc. I'm happy we can be here for you. I am doing ok without the medicine...very tired but I have an almost 2 year old and my eldest will be 4 at the end of January next year, so they keep me very busy when I'm not at work. Also looking after the house etc. Who isn't tired after all of that on a normal day?! Yes, treatment starts on Thursday. I'm not too worried about it. More a little anxious about leaving my family for 2 weeks but I know it's for the best. Lots of video calls and updates 🙂 I try not to think about it...happy it's almost here and I will be happy when it's over and done with and I can start to get back to 'normal' 🙂 I hope you both have a great week 🙂 Will let you know how I do after the treatment. Christyanne
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