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Geri is the thyroid cancer specialist nurse on the Macmillan Support Line.
She checks this group and responds to medical or factual questions where members could benefit from an expert answer. You can also post questions specifically for her - she'll aim to reply within three working days.
Hi all, 7 months after various tests and a partial thyroidectomy for diagnosis I was told 3 weeks ago that I had follicular thyroid cancer but that it was contained within the part of the thyroid that had been removed. I was scheduled for surgery to remove the remaining thyroid tissue, with the possibility of radioactive iodine treatment which I was told was standard treatment for follicular thyroid cancer. During the MDT meeting it was decided that these treatments were not needed. Everyone I told thought that it was great news so why do I not feel this? I'm more anxious that they are not doing it than I was about the upcoming treatments. After being really positive all through the last 7 months I find that I am struggling to sleep and I'm very tearful. Though I have shared these feelings with my husband, I'm unsure who else I can talk to as surely I shouldn't feel this way! Anyone else had similar experiences?
Hi Nemadine, welcome to the world of thyroid cancer.
It sounds as if you are still adjusting to finding that you have had cancer. From what you say it also sounds as if your team are happy that they have removed all of the cancerous cells and therefore see no point in treating you with radioactive iodine - which is really positive news. They will keep monitoring you with blood tests which look for thyroglobulin (a protein marker produced by all thyroid cells) and, presuming none is found, you can quite happily say ' I've had thyroid cancer'.
I hope sharing your experiences on this forum will help you as much as it helped me when I was diagnosed with papillary and follicular thyroid cancer. Ask anything you like and I'm sure you will get lots of help and advice.
All the best,
Hello j4 and thanks for your response, my main worry is that I still have half my thyroid and therefore think that this surely makes the risk of more problems occurring greater and if I still have those cells in my body, how can it be monitored? Will I spend the next few months/years constantly checking the left side of my neck just waiting for a lump to appear? I know that I will have these fears for years to come and obviously I have some questions that need answering at my next appointment but due to the fact that I don't yet know when that will be I thought it a good idea to put my worries out there and hear of other peoples experiences.
We have discovered through this forum that different doctors and hospitals have rather different treatment methods. Personally I'd request a second opinion, especially considering it's cancer (no matter how good this cancer is compared with other types, it still has a 'C'). We are all entitled to have a second opinion, whether through the NHS route or private medical care. For the peace of mind, it is worth it. Also for follow-up monitoring and management, I guess it's easier if we don't have thyroid at all. I read that some people don't have RAI but from my memory it seems that people with thyroid cancer generally have their thyroid totally removed (mind you, I'm sure I haven't read all the cases so pls don't let me mislead you here). Please keep well and feel free to ask any questions here.
Could you ask for a meeting with your oncologist? I'm sure they wouldn't want you to be feeling this way and they should be happy to explain why they think your case does not call for further treatment.
In my case, I wasn't all that worried when I found I had thyroid cancer (foll var of pap) because my sister had it 25 yrs ago and, with no more than a hemi-thyroidectomy, she's been fine since. So I was a bit peeved when they insisted on taking out the other half of my thyroid, and I initially resisted RAI. I found it very useful to speak to my oncologist (who is also my sister's oncologist) who explained why I needed a different treatment approach to my sister; hers was a very small single cancer in a young person, mine was large, multifocal and I was middle-aged. It sounds like you haven't been given enough information to feel happy with their decisions. Is there a throid nurse at the hospital? Maybe you'd feel happier talking to her in the first instance.
I understand compltely I had papillary cancer in Oct 09 and didn't have radioactive iodine and at the time everyone said "great you must be ok" but it left me feeling well, if you gave it me you would blast the rest of the thyroid so that it wouldn't come back again. My Thyroglobin levels have been ok since then but my last test came back 7.7 it should be around 2 I think so I've got to go and have a scan now and then go from there. I really want the iodine now for peace of mind if nothing else!!!. I just keep thinking it's only a matter of time before I have cancer again but I guess I'm just being silly really. I'm 35, never smoked and it's not been in the family before. At my last appointment I was asked to take part in a study at Oxford Uni on my DNA to see where Thyroid cancer comes from. I won't find out any results but it might help others in the future.
I do understand but we all have good days and bad but you can always use this site to write about it, it helps me loads. Keep us up to date.
Hi Forest, Agnes and Jo. Thank you so much for your replies, it makes me realise I'm not alone.
I am unsure about asking for a second opinion as my doctor and all the people I have dealt with over the last few months have been brilliant and I don't doubt that they are doing what is best. I genuinely feel that my doctor thought the news he gave me this week would make me feel loads better, which I know it should but I feel that I had this huge bombshell dropped on me a couple of weeks ago, I was scheduled for surgery and it was going to be my decision about the radioactive iodine treatment. I was taken to one side with a specialist nurse to talk it over, given a thyroid cancer pack and contact details for any concerns I might have about my diagnosis, I felt like at least it was being dealt with. Only to be told 2 weeks later that nothing needed to be done and I kind of feel like I've been abandoned and if there's nothing to worry about I shouldn't be bothering the doctors/nurses. This is the way I feel and not the way they made me feel, if there's a difference! As for talking to my oncologist, I don't have one, I have only every seen my GP and the ENT doctor who recommended and performed my surgery. I am awaiting an appointment with an endocrinologist to discuss suppression treatment.
Already I feel better just by putting my thoughts out there and I'm sure I'm not the only person to worry.
Thanks again for your replies,
Hello Nemadine, I'm Oliver(TT foll/pap cancer/RAI). If you have cancer you are entitled to an oncologist; insist on being under care of consultant oncologist.
I don't know your medical set - up, but it sounds a bit sparse despite having a CNS. I am cared for by a group of specialists working in cooperation at a London PCT, and I know I get some of the best medical attention in the countrywide NHS. How is your set up ? You can of course choose where you get hospital treatment, and there are people here who have switched hospitals.
I would find it odd to have no oncologist treating me, and to have a follicular tumour removed without routine follow-up RAI.
Let us know how you get on. Yours Oliver.
Hi Oliver, today I have received a letter for an appointment at a cancer hospital in 6 weeks time so I assume that I will be seen by an oncologist there and I will certainly question why the doctors at the MDT changed my treatment plan and decided not do further surgery like I was originally told I would need and the anxious feelings it left me with.
I will keep everyone updated and thanks for your response.
I can understand how you feel Nemadine - in some ways I was lucky that the lump I had was so big that it HAD to go, regardless of what it was and once I knew it was cancer I wanted the other half out and the radiation blasted.
I'm guessing yours was quite a small lump or they wouldn't be treading so gently. It's tempting to want everything done and dusted but there's a lot to be said for still having half a thyroid. If anything does change, it will do so very slowly and so long as your docs are on the ball, you should be fine.
But as everyone else said before me, do tell the docs that you don't understand their change of decision and that you'd like them to explain it to you in words that you (and your Mac buddies) can understand.
hi iam new on here i have had thyroid cancer for the passed 11years i frist had my thyroid 1/2 my removed then 4wks later they removed the rest i had radio , then 5years later i had it again i had a nother op by this time i was deprest so i went on tablets which i must say do help a lot . Then two years ago i needed a nother op i had a very bad sholder for about a year and was off work for 10 months .i just got my self back on track then wham its back again ;-(( . I had another op but this time i felf different afterwards i felf good for a change and hey all my levals are falling i still go to the royal marsden every 2months for check up but at the moment all is well , but i still get very tearful they said its hard when you are living with cancer
Hi Tobyjoe and welcome to Mac. You've really been through the mill haven't you and it's great to hear that after 11 years you're finally feeling good for a change. Let's hope it's an indication for a good future to balance a pretty rotten past 11 years.
Hi all, I thought I would just keep you all updated after my appointment at the cancer hospital a few days ago.
The doctor I saw was very helpful and explained everything to me, they had again discussed me in detail at a meeting and decided that they thought it best to start me on thyroid suppression treatment which involves taking high dose thyroxine tablets to stop the half of my thyroid I have left from working instead of doing further major surgery. I am now under the care of specialists at the cancer hospital who will do regular examinations and blood tests which will help catch anything early should it starts to grow again.
I feel so relieved knowing that they will be monitoring me and doing regular check ups for the rest of my life. I can now see how stressed and withdrawn I had become and it feels good that my family & friends have also noticed a change in me, for the better, since the appointment.
Thank you to you all for your replies,
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