Group still active ??: Hello. I've... - Thyroid Cancer Su...

Thyroid Cancer Support

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Group still active ??

Sleepy101 profile image
32 Replies

Hello. I've joined this group recently. Is it still running?? People have posted with no responses or support. I am waiting to hear if I have cancer and will need some online support, shall I find another group? One where people reply?

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Sleepy101 profile image
Sleepy101
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32 Replies
Sleepy101 profile image
Sleepy101

Maybe the group should be deleted if no one is moderating it. Its worse to post and have no one reply :(

Sleepy101 profile image
Sleepy101

Thank you for your reply and also sharing what you have been through.

I get my results on 8th Dec, I was supposed to be seen 24th November but I was cancelled by accident and the earliest I could be squeezed in was 8th December. They insisted I have to be seen F2F for results even though I asked to be told over phone. If I get cancer diagnosis I will definitely want to know more about different opinions/experiences on treatment. The person I have been booked in with to get my results is a surgeon but he has very good feedback from what I can see online. X

Sleepy101 profile image
Sleepy101

Thank you so much ☺

Thyop57 profile image
Thyop57

Hello - I've posted here before but thought it might be a good idea to share my experience as you have. It might be a longish post so I'm going to make notes and then come back on later and hope it helps Sleepy101 too. X

DizzyD profile image
DizzyD

Scrumbler what a wonderful and informative story which certainly opened up my memory re: my early days of thyroid cancer back in 1992. As for you sleepy101, I aware you are very worried waiting for results of needle biopsy results so hang on in there lovely you are not alone. You are in a good place really because whatever the outcome of your test sounds to me like you will get proper medical care.

I was not so lucky.

Like you scrambler an Adams apple appeared in my throat, but on the outside. Went to GP he examined me and said, "Don't worry it's not cancer"! I looked him in the eye and asked, "How do you know"? Of course it was cancer.

Long story, so will condense it. The doctor doing the needle aspiration biopsy test had a real struggle getting fluid out of my Adams apple...not sure if he extracted anything. Heard nothing from the hospital so I assumed everything was ok concerning the biopsy. had the occasional TFT test. Two years after the so called biopsy of Adams apple, I received a appointment for admission to hospital for total thyroidectomy which really surprised me. As far as I was concerned I was fine and there was no way I was going to let them take my thyroid away. I ignored the the letter and did not turn up at hospital. Surprise, surprise an doctor actually phoned me asking why I had not turned up for pre op stuff etc. Told him I did not want surgery, I was fine.....then he dropped the bombshell...you have thyroid cancer!!!

After surgery I was told they could not remove all the cancer cells which had spread to lymph nodes in my neck.

In my mind, the cancer cells had spread to my lymph nodes because I should have had thyroidectomy two years earlier when biopsy was done. Why did it take The NHS two years to decide I needed a thyroidectomy? I strongly believe NHS made a mistake in my case.

So Sleepy101 I am not out to alarm you in any way. This is part of my story. Sounds to me that NHS are on the ball concerning your investigations which is great. No point in me telling you not to worry but rest assured you will get help and support along the way via sites like this and thyroid uk. Be strong.

Scrumbler I will be using this site. So appreciate your post on thyroid uk. Thyroid cancer is a much needed community along with thyroid uk community.

Thyop57 profile image
Thyop57

This was my experience and hope it helps anyone who is having similar issues. In Feb 2019 I noticed a lump in my throat near my Adams apple. It really only appeared when I swallowed and I'd had a few bouts of laryngitis the previous year and lost my voice (I now know this was connected)so just thought it was a swollen gland due to another infection. My GP sent me for a scan and also had a fluid biopsy in April 2019 but by the end of may I'd heard nothing so assumed I'd get a standard follow up as all was fine. Then got a call from my consultant asking why I'd not turned up for my appt and asked me to come over immediately! At my visit he then confirmed it was thyroid cancer (eventually diagnosed as follicular hurthle cell variant) and on June 10th I had half my thyroid removed. In Sept I was told I needed the other half removed although it didn't appear to have spread to my lymph glands but a ct scan showed a small spot on my lung. I had RAI in Nov2019 and the low iodine diet was ok although the hospital stay for a couple of days was a bit lonely and isolating as no-one can enter your room (I was warned that there was a camera so I could be checked on). Covid had of course altered my follow ups but I've had another lung CT recently and regular blood tests and have an appt with my oncologist on 14th December so fingers crossed all is ok. I'm on 125mg of levothyroxine daily and although my stamina levels have dropped some and I've had headaches regularly I ve not been too bad. My main issue had been finding other sufferers of this cancer to chat to as it is one of the less common ones.

susanmhall62 profile image
susanmhall62

I had a full thyroidectomy due to papillary thyroid cancer in July 2004. I did well on natural desiccated thyroid hormone until recently in March 2020 when NP Thyroid was recalled. I'm currently on a Tirosint/Cytomel combination. I think it's possible to live a fairly normal life once you get the thyroid dosing optimal which often takes time.

Thyop57 profile image
Thyop57 in reply to susanmhall62

It's always good to hear a positive story so thanks. I'm only 18 MTHS in so still waiting on the all clear hopefully. Keeping a symptom diary is helping me to discuss my thyroxine dosage with consultant but still not sure it's exactly right - just need to keep at it as long as the cancer has all gone x

Sleepy101 profile image
Sleepy101 in reply to susanmhall62

Hello. Thank you for your reply. Did you feel ill from thyroid cancer or have symptoms? Do you have hashimotos too? I hope your medication issues gets better soon.

susanmhall62 profile image
susanmhall62 in reply to Sleepy101

I didn't have any symptoms. I went to the doctor because my mom kept nagging me about it because she thought my thyroid was enlarged. A needle biopsy confirmed that it was cancer. As it turns out mom's are usually right :) I don't have hashimotos.

Sleepy101 profile image
Sleepy101 in reply to susanmhall62

Aww im glad that your mum spotted it and nagged x

Sleepy101 profile image
Sleepy101 in reply to susanmhall62

Thank you 😊 its good to hear

Sdfoxy profile image
Sdfoxy

Hi. I will add my story. My GP discovered a lump on my thyroid in 2011. I had a scan and other tests which showed a multinodular goiter and was sent to an endocrinologist. She tracked and biopsied the nodules regularly and they were always benign but I did have one fairly large one. You could see it in my neck and I felt like I couldn’t swallow properly and I didn’t like to lay on my back. I think I had a total of 11 nodules on both sides. It was always my choice to decide whether or not I wanted this removed because my thyroid tests were normal or slightly hyper. I was on propranolol for this, in case I had a thyroid storm. This year I decided that I wanted it out. I felt like it was choking me and I had just learned to live with it. What was most disturbing was the stories of people who couldn’t get their medications regulated. I was sent to an excellent surgeon. He asked me did I want the large side out or the whole thing. I could probably avoid meds if I left one lobe. But both lobes had the nodules. He said they would do a frozen dissection while I was under and if it was clear they would leave one side. Something told me. Take it all. As soon as I woke after surgery even tho I was swollen and had tubes in my neck I could tell that I could swallow easy and it was all gone. The surgeon told me the right side was as big as my fist. Almost five inches across. And a normal thyroid weighed between 12-14Grams. Mine weighed 38 grams. The

Pain from surgery was tolerable without anything but Ibuprophen. Ans I only felt bad because it takes me a week to shake general anesthesia. The results came back in about a week and I had papillary micro carcinomas. Two very small cancer. The right side which was huge had none. So if I had went with keeping half I would have kept the cancer. A fine needle biopsy can only hit so many spots. I had no hoarseness. No calcium problems and no problems getting regulated on my brand name synthroid. It has been exactly three months today and I feel

Totally normal on 120 mcg dosage. I will not have to have rai unless my thyroglobulin test start to rise which would mean my extra tissue left behind is growing. If I have to it will not be a big deal but I hope I don’t. If you have any other questions just ask. :)

Sleepy101 profile image
Sleepy101 in reply to Sdfoxy

Thank you for replying. So you didn't have your thyroid out for a bit but did because it was getting in the way but then it was discovered to be cancer? So it seems like best way to ensure its not cancer is to have the op as it can be missed otherwise? I felt it was odd having to have an operation when I dont know if I have cancer or not but my surgeon said that because of my thyroiditis its very hard to tell using FNA so best to check with surgery. I think your story highlights this too as you were told benign when in fact it was cancer.I hope that you do not have to have RAI but I guess its better to be safe.

Sleepy101 profile image
Sleepy101

Thank you very much for sharing your story. It made me laugh that people saw you on your pants :) I had a similar issue when I had a sleep study.Its helpful to hear other peoples experiences and it also highlights the similarities but also how peoples illness/experience can vary. Its good to see and learn from where peoples experiences could have been better so I can( and others) can try to be as informed as possible. Its because of this site (Thyroiduk) that I went to a private endocrinologist and my Thyroid lump was noticed. If it wasn't for forums like this I wouldn't be in the situation of having these checks done so I am so glad for the support Thank you for getting this support group active again.

I was told today that I thyroiditis by endocrine surgeon. They couldn't tell if biopsy was cancer or not and he said hard to assess with thyroiditis on ultrascan. Lump is 5.5.4, biopsy result THY3F so will have an operation in Jan and high risk of voice damage due to my inflammation apparently ( he wanted to warn me). My BMI is high so I am trying to eat better and lose some before operation. Im still in limbo as to if its cancer but I am grateful that im having it looked into. I saw in a picture from a year ago a slight lump on my neck so I've had this at least a year. So thyroiditis is hashimotos? I've been diagnosed with that now. Need to consider how to manage that better. Im low on T4 too. He said he might consider giving me some medication. He said that NHS has an outdated system for managing thyroid and im ok by NHS but am actually low in T4. Many thanks again

Sdfoxy profile image
Sdfoxy

To be honest if it hadn’t been so large it would have stayed. I’m assuming that if the cancer would have started growing a fna would have caught it at some point. Most Papillary cancer grows very slowly and I was told I might have lived the rest of my life and never had any problems with it. But with your condition if they can’t do fna then I guess it’s a whole lot harder to watch what’s going on. I was tired of all the biopsies , appts and expense. The endocrinologist made me come every 8 to 12’weeks. That’s a lot of appts. And I already have some other health issues going on that pushed me over the edge. And the strange thing was I was overweight and couldn’t lose anything even tho it was on the hyper side. I was always starving. Since the surgery and getting my medicine correct I’ve already lost 15 pounds eating more than before. So I have to assume that the thyroid wasn’t working properly in some way. I asked the surgeon to take a picture and he did. That thing was hideous lol. Keep me updated on. your appt. I will say a prayer. My name is Shawn. And I am in the U S

Sleepy101 profile image
Sleepy101 in reply to Sdfoxy

Hi Shawn. Im cha :) That is a lot of appointments! I wouldn't want to keep going all that time. Maybe its a blessing in disguise that my Hashimotos mean I can have constant FNA. Luckily mine didn't hurt but even just getting time off work is a pain.Interesting that you lost weight, I hope that happens to me. Im hoping I feel bit better after some meds and op. I know getting right meds isn't an easy process though. I will thank you.

Sleepy101 profile image
Sleepy101

Thank you. Yes feels like its moving forward.I will post to other site too x

Nanaedake profile image
Nanaedake

Sorry about the surveillance cameras, being in hospital is so undignified. I had no idea why I was supposed to get totally naked in hospital gown when surgery was on my neck. I left my knickers on for modesty!

Sleepy101 profile image
Sleepy101 in reply to Nanaedake

Oh nooo do I have to be naked. I was already planning what would be the most flattering pants to hold everything in lol

Nanaedake profile image
Nanaedake in reply to Sleepy101

Just make sure your knickers /pants have no metal on them and you might get away with keeping them on! I'm guessing it's due to if someone's heart stops during surgery (extremely unlikely with thyroid surgery I should imagine) then maybe the device to revive them could react with metals? That's just a guess.

Sleepy101 profile image
Sleepy101 in reply to Nanaedake

Ooh ok. I do have some pants that have some metal on so avoid those 😆

Sdfoxy profile image
Sdfoxy

What did your surgeon say at the appt. did you have a fna there. If so when will your results be back. Hope all went well. :)

Sleepy101 profile image
Sleepy101 in reply to Sdfoxy

The FNA was inconclusive apparently due to the inflammation the only way to find out 100 % is the op. Op in jan sometime not sure when yet

Sdfoxy profile image
Sdfoxy

Well if you have any questions at all I would be glad to answer them for you. Can you post pictures on here I wonder. I could show you my scar it’s been three months. Have a nice Christmas

Sleepy101 profile image
Sleepy101 in reply to Sdfoxy

Thank you. Im not sure if can post pictures would be interesting to see for sure. I know its still early days as you have only had op 3 months ago but do you feel like you have more energy or has it not made much difference? I guess that not having that pressure in your throat feels much better. I did feel my throat felt different since having a lump but I was confused as to why until he explained its pushing on windpipe. I noticed when I exercise and i raised my arms i felt strangled. Thank you:) Have a lovely Christmas 🎄 😊

Sdfoxy profile image
Sdfoxy

I wasn’t hypo so I was never exactly fatigued. I work al day on my feet so I’m always what I call regular tired at the end of the day. I need a knee replacement etc so it takes a toll by the end of a 40 hour week. But as far as being on the medicine I feel completely normal, have plenty of energy. Now that’s since she changed me from generic levothyroxine to name brand synthroid. She said it seems to make a huge difference. It’s costs a little more but it’s something you have to take forever to make your body run so I think it’s worth it. :)

Sleepy101 profile image
Sleepy101

Hey. Oh yes I'm sorry I forget that hyper doesn't have the same issue with the fatigue but a 40 hour week will defo equal tired like you say, I work full time and if I can afford it will drop hours a little. We shall see. Ahh ok so levo is the cheapest one, I will have to fight maybe for a different one go private and then get them to write a letter to GP saying why its better, already planning lol! ;) I thought it was Levo most people were prescribed because its the most effective but its starting to make sense now why so many people have battle to get different meds!

LAHs profile image
LAHs

Very happy to hear that T3 only is being given post thyroidectomy op. in UK now. I was very lucky that the one thing that my first Endo did right was to prescribe T3 only after my Thyroidectomy. I too felt great for 4-6 weeks (can't remember exactly how many weeks), then she said, "We will soon be putting you on the "good stuff" and you can stop taking this T3!). I told her that I felt marvelously well on the T3 but that was the beginning down the slippery slope of Levothyroxine + an Endo that only looked at TSH. That was 15 years ago now and I soon realized that something was seriously "off" in the Endo department. It caused me to go manic on educating myself on all things thyroid - and I believed I saved my own life or at very least the rest of my life in a hypothyroid state.

Nanaedake profile image
Nanaedake

Oh, sounds horrible but better than nowt I suppose.

Sleepy101 profile image
Sleepy101

Ah ok. Is it right that with hashis people can go between hypo and hyper symptoms?

Sleepy101 profile image
Sleepy101

HelloI was told the same so that is reassuring :)

I've been prescribed levothyroxine now also which is good.

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