Got Papillary Thyroid Cancer and I'm terrified

Hi DM,

I can’t offer you any advice but wanted to just say I’m in almost the same situation as you at the moment. I had a total thyroidectomy and left side neck dissection early December, papillary thyroid cancer was confirmed and also cancer in 2 of the lymph nodes removed. My head has been all over the place since then, I don’t know anyone else that’s had cancer and it’s difficult being isolated in lockdown too. Being practical it’s good you have a diagnosis, the specialists know what they’re dealing with, there is more treatment that can be done and levels that can be monotones to keep an eye on things. Have a good read of the posts on here, I found that helpful especially the discussions about RAI as I’m a bit daunted by that too. Hopefully your oncologist will be able to answer all your questions and give you a clearer picture.

Take care

Hi DM

Understand where you are. I went through two biopsies and a partial thyroidectomy being told that very unlikely to be cancer and then got the diagnosis that it was, I had my remaining thyroid removed in August and had RAI in October. Happier doing something about it and would admit that I was more concerned about RAI than previous surgery. Seems to be each oncology centre has slightly different approach but my concerns were groundless. Initially Butterfly Trust gave really good input about process in general and when I went for treatment it was fine. Advice would be to ensure you follow the low iodine diet ahead of the RAI, when in hospital drink as much as is comfortable, pee often and shower twice each day. Science is that most of radioiodine leaves your body in your urine so if you can flush it out you can ensure your hospital stay is as short as possible. Good to hear that your parathyroid is recovering and I hope you find that after your RAI you keep getting better and better 

Hi DM

I am sorry to hear of your recent diagnosis and problems during your operation with your parathyroid glands but pleased they are getting better.

I just wanted to let you know that my brother was diagnosed with PTC 32 years ago when he was 30, he had a neck dissection as well and that was all followed by RAI treatment, he has been on thyroxine ever since but has enjoyed good health otherwise.

In February 2020 I was also diagnosed with PTC, I am 65, they also did a central neck dissection and took out 13 lymph nodes of which 3 were positive. I had my total thyroidectomy in March just before the first lockdown, my RAI was postponed but luckily I had it done at the end of July, I was very concerned about that but it was ok, take an ipad in and watch netflix or stuff as its a bit boring. I am having another 1-123 scan in a couple of weeks. The hospital has been amazing and the nuclear medical team are really good and reassuring.

I have tried my best to be positive throughout this year, eat healthily, walk and cycle as much as I can and try not to dwell too much on the big ‘C’ word.

Give yourself time to come to terms with your diagnosis and what you have been through, especially with all the anxiety surrounding the covid situation.

Remember there is always someone on this forum who will understand how you are feeling so never be afraid to reach out for help and comfort.

Good luck with your RAI treatment, let us know how you get on.

best wishes and stay strong x

Hi DM,

Just wanted to share my story with you - I was diagnosed at 23, had a painless lump on my neck which was previously scanned and deemed non-malignant, then mentioned it to a new doctor and had a scan and FNA and was diagnosed 14 months after finding the lump. Initially told would just be a hemi-thyroidectomy as only in half the thyroid so could be cured with surgery, then told on the day of surgery that they planned to do a total thyroidectomy and remove some local lymph nodes, which were later found to be cancerous. I had surgery in March 2020, and RAI August 2020. 

I completely understand what you are going through, being young and healthy made it challenging to come to terms with, and the stress of thinking surgery would be curative and then needing RAI. Dealing with this during COVID is an additional challenge, I was fortunate to have my surgery 1 week before lockdown and I can't imagine what it was like going through that when hospitals are so limited on visitors - you are amazingly strong to have gone through that! I think it is important to remember that PTC has a really good prognosis, and to try as hard as possible to stay positive. Speak to whoever you regard as a your support network - they can help you get through this. I initially felt guilty with what I saw was 'burdening' people with my cancer, but soon discovered that my friends and family just wanted to be there for me in whatever way they could, including being a listening ear. 

The hospital and support staff were great with my RAI. Just take plenty of things to keep you entertained and shower and hydrate loads to try and get it out your system quicker. The hardest part for me was having to stay away from my partner, but the few days we had to stay apart quickly passed. I didn't get any side effects at all - the whole thing was actually pretty underwhelming!

Finally - don't be too hard on yourself! Give yourself time to come to terms with and acknowledge what you have been through. I wanted everything to continue as 'normal' as possible and put a lot of pressure on myself to not step away from my studies (I was doing an MSc at the time), and carry on as normal. In hindsight, I should have taken more time to myself to acknowledge what had happened and recognise what I was going through. Take as much time as you need to fully recover both mentally and physically.

I also want to add - after recovering from the initial surgery and once my levothyroxine dose was correctly adjusted I feel pretty much the same as I did before my surgery and RAI. Can honestly say the biggest annoyance is having to wait 30 minutes before eating after taking my levothyroxine in the morning, as I am often running late for work!

Best of luck with everything - remember there are always people on here who understand and can offer support.

M 

Hi Jan. Im nearly 61 and just diagnosed with 12mm papillary thyroid carcinoma. Surgeon says no lymph node involvement on scan but Im scared there might be at surgery. Had hypothyroidism for 2o years so no issues taking thyroxin and ok with decision on total thyroidectomy on 8 Feb. Just so incredibly scared of the c word. Do you have any words of reassurance of total recovery and very little chance of recurrence please? I know youre not a doctor but need some words of comfort at the moment. I live alone and its especially hard during Covid. Thank you so much.

Hi Bubble22

I am sorry for not replying sooner to your post but have had four days of hospital treatment this week so its first chance of catching up on the forum. This time last year i started my thyroid cancer journey, a lot has happened in one year medically and also with the covid lockdowns and all the anxiety that brings. I had a brilliant surgeon who managed to do my thyroidectomy just as we were going into the first lockdown. My recovery was good, I rested as much as i could but also walked and cycled once I had recovered from the operation. It was not as painful as i thought, my voice was a bit hoarse but not for long. The team decided that I should have Radioactive iodine treatment but that it would be delayed due to pandemic, hopefully not longer than 4 months but it was ok if it took longer so please do not worry about that, in the end, my operation was in March and the RAI was at the end of July. Again the thought of that was worse than it was. I was a bit tired but no other symptoms. I have just had some follow up treatment, thyrogen injections, 1-123 injection and a body scan. In between all of this i also had my gall bladder taken out so its been a busy year.

I try not to think too much about the cancer itself and the word. My way of dealing with the whole thing has been to deal with whatever the specialists tell me and go from there. I found the Macmillan thyroid cancer booklet very helpful, also the British thyroid association has lots of information and also the Butterfly trust.

This forum is so helpful as well, you can type anything you want to search for and get to view other people in the same situation as you and see how they have coped with their diagnosis.

I keep busy by knitting, jigsaws and walking my dogs. The thyroid cancer statistics are pretty good even for our age and its good your consultant has said he does not think it has gone to your lymph nodes.

Good luck for your operation on the 8th, let us know how you get on. Take care and put your trust in the experts, you will soon be back home recovering.

best wishes

Jan

Hi. I went through this 21 years ago aged 30. Two operations and RAI. I still have an annual check but it’s always been fine. As cancers go this is one of the better ones to get. It’s very treatable. I found the RAI difficult - it didn’t hurt but it was boring in the days of no Internet and four channels of TV, but things were very different back then and things will be better now. I found the aftermath more difficult emotionally but again there is better support available now. The best advice I can offer is try not to cope on your own. Your experience will be very different from what your peers are experiencing in their lives at the moment so try to do what you are doing - contact people who can relate to what you are going through and lean on friends and family. Also please ask about getting both T3 and T4 once it’s all over. It made a big difference to how I felt. Wishing you all the best.