Hello! Follicular Carcinoma, RAI delay, Low calcium, Lumps and bumps.

Hi Tricol

Sadly I am in a similar situation. 

I do however have an email address for my endo nurse who is normally quite good at chasing things up   Not sure what the structure is in your area  but in my area once the surgeon have completed your surgery then you are referred to the endocrine team here. 

My case is slightly different but in short I was told I would get repeat scans and one was requested. That was in July   When I asked a month ago I was told it was requested but a date had not been given. Line you I have since developed more nodes and even though the nurse does respond I have still not been given any dates. 

For me this has been a little frustrating not knowing what is happening so I can only imagine your own worry. Do you have any other appointments at the hospital? If you do maybe you could pop in to nuclear medicine to see if they have any update. Otherwise it would literally be trying to call them to see if you can get some answers. 

Hope you get it all sorted soon   

Hello Rosegirl,

Thank you so much for reading my post and taking the time to reply. I appreciate you sharing your experiences with me, and I hope you all the best in your journey. 

It's great you have been given a key nurse you can contact I can imagine it's reassuring to know they are just an email away. Hopefully, a scan date will come through for you soon; I have my fingers crossed for you. It's confusing how different areas allocate thyroid cancer care to different departments. I think I will be with nuclear medicine long-term and a referral to endo only if needed. What input do you receive from the endocrinologist? 

Last week the nuclear medicine consultant returned my call about a date for the treatment, but the delay is out of their hands. It just feels like my care is on hold until RAI is completed. The surgeon said my calcium would be reviewed once RAI is done, but that feels so far away. Have you had any issues with your calcium or thyroid levels? My TSH has been slow to come down.

There is so much anxiety linked to each and every lump. Since having a TT and being on levothyroxine I have not felt myself. So I don't know if my emotions are from genuine worry or if they just feel so intense because of the effects of hormone suppression on my emotions. How have you managed the rollercoaster of emotions that have come with your diagnosis?

Thanks again for getting back to me.

Hi.

I've had my diagnosis on 1st of March. Total thyroidectomy on 23rd of April and RAI on 23rd of June (I'm in Merseyside).

Had one scan when send by my GP due to lump on left side of neck. Second was when I had biopsy. 

As RAI is still doing it's job (6 months) there is no scans in that time. In December I will have thyrogen injections and then second PET scan to check for any remaining thyroid/cancer tissue in the body. Should be only in thyroid bed just as straight after RAI and fingers crossed.

I find it hard. Harder than at the beginning of my journey. I always thought that time will help me get back to myself. But it seems the longer after the treatment the worst I feel mentally with all this. I am really strong person and it was really hard to get me down before the diagnosis. I always thought there is a way from hard situation but when it comes to cancer and me not having any control over it I feel miserable. Any new sensation in my body and I am straight away wondering if that's cancer once again. 

When I was diagnosed I didn't for a minute think it will be cancer. I am 37 years old and no health issues. But it was very low chance it will be and it was actually cancer so I am wondering that maybe it can happen once again somewhere else in my body. It would be unfortunate I know. But nothing is impossible anymore (in my head).

I also had a new lump in my neck just last month. I have my cancer nurse number and usually can phone and ask for advice. Told me to wait 2 weeks and if still concerned to phone back. But I cannot feel it anymore so might be just some lymph nodes swelling due to infection. 

I am really not surprised you are going through anxiety. My care was really good and all happened fast and still I am scared they overseen something. 

There is a UK thyroid cancer group on Facebook. Members went through the same experiences as us and some of them years ago so have loads of experience and helped me immensely many times when I had questions and asked for advice. I would suggest joining it ,they are all so helpful.

Fingers crossed you will get sorted sooner rather than later. Thyroid cancer is really slow growing but we all just want to have the treatment and get back to normal without delay.

Take care xx

I agree @IsabellFell I joined the group on Facebook and found it very helpful too.

Hi @Tricol, I am sorry to hear about your worries regarding your RAI, I was also getting concerned, first because after 6 weeks post op I hadn't received a follow up appointment, so chased it up and did have it a couple of weeks ago.  I had my operation in Nottingham, but initial diagnosis was in Lincoln and my follow up treatment (RAI) is being carried out in Lincoln.  My operation was on 26th July, and my appointment regarding RAI isn't until 3rd November so the treatment is going to be a while after that I guess.  I am concerned too as some people seem to have had their RAI treatment about a month maybe 2 months after their operation.  I had TT plus central and rh side neck dissection and the cancer has metastised to my lung but I have been told it is very tiny so hopefully the treatment will blast them too.  I am also having problems speaking and have another appointment with the Voice Clinic back in Nottingham on the 8th Nov.  This year seems to have gone so quickly from finding the lump in my neck to where we are today, but the waiting at the same time can get you down.  I haven't actually contacted the MacMillan's nurse who was at the appointment where they first told me it was cancer, she gave me lots of information and her card with telephone number, which was nice, and information regarding this site and then I found some Facebook groups mentioned by someone else in this thread, so never actually rang her.  I am sure I will meet her again or one of her colleagues when I go back to Lincoln.

Hello IsabellFel,

Thank you for your reply. I'm really sorry to hear about your diagnosis. I share your feelings of not feeling myself and the fear of cancer.  

My lumps have been checked out now. They have no suspicious features and no known reason for them being there! It's such a relief to hear that, but I'm exhausted from the worry in the run-up to hearing this.  

I'm not very active on social media, but I will have a look at the Facebook group; thank you for suggesting it.  

I have my fingers crossed for your next scan, and it would be great to hear how you get on. 

Keeping you in my thoughts x

Hello Petal66,

Thank you for your reply. Sorry to hear about your diagnosis and that you are having problems with your voice. I'm glad you're having appointments to help you with this.

My RAI is now booked in for mid-December, which is great to know it's finally going to happen. The time between TT and this treatment has also concerned me, but the consultant assures me it's not an issue. I hope your date for RAI isn't too far away and is successful. 

Let me know how your initial RAI appointment goes.

I will be thinking of you around your appointment dates. 

Thank you @Tricol and I hope your RAI is uneventful and everything goes well.  Out of the way before Christmas which is good too.  All the best and let me know how you go on.

Hi Tricol

please to hear you have a date now for rai. I to have received my date for my scan which is in November (six months post rai). 

Also great new that the lymph nodes are nothing to worry about   Now you can focus some of your energy on preparing for rai which I have to say is a breeze and nothing to worry about. I have done it three times at high doses (200 mci)   Use the time to relax read something  and heal. Good luck for Dec and keep in touch