Hi

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Was confirmed I had a suspicious growth after finding a lump on my throat. I had difficulty swallowing and had a few choking experiences. I was sent for a scan to ENT along with a biopsy. It was confirmed I had two nodules one small at Centre front of my Thyroid. The other was 5cm on my right as you look at my throat and was called suspicious from scan. 

I attended my surgeon in Sept of this year and found a team of Nurses (4). I was told this was my team and found myself at a loss as the meeting only stated it was a suspicious lump. The Doctor who did the scan and biops stated it was large and it looked certain I would go through surgery. This meeting confirmed I would need total Thyroidectomy as though it affected only one side the size meant it would be best to take it all out in one op. So it would be in regions of two weeks I would be contacted to attend my local hospital. When I left I was handed some booklets concerning op and my team contacts. When landing at it it stated Oncology Navigator Service inside it said your point of contact throughout your cancer journey. The first time it was mentioned I had or could have cancer. 

On 27 sept I had my surgery I awoke in ICU later the next day transferred to a surgical ward. I went in on the Thursday and after some issues was released on Saturday. I was given a bag of drugs and later to find out not all my dispatch notes. 

I awaited my pathologist report, my surgeon called 9 Oct and informed me I had a aggresive Papillary cancer T3. It had grew another 10mm from the scan and was 60mm. The protrusion or leak occurred in three places and the team would need to meet to discuss way forward. It met on 15th and I was called on the 17Oct. I was moving to a new team at Gartnavel General Hospital and be under the care of a Prof Reed, who had dealt with my older brother Thyroid Cancer. I will meet with the new team on 22 Oct to discuss my Radio Active Iodine treatment and when it would occur. 

My present journey has been quick and sudden and other times delayed waiting for results. I am fortunate I know what my brother journey with cancer traversed and he went through same iodine treatment more than once. Before he succumbed to cancer that traveled to other parts.

  • I am very sorry to hear the speed at which everything has happened to you and about your brother.  Everything sounds like you are being cared for swiftly which is welcome news.  It’s all a lot to come to terms with and I know exactly how  you must be feeling.  I hope your next appointment finds a positive way forward and am sending you the very best of wishes and strength to you xx

  • Welcome to this forum, although sorry you find yourself here. It's good you can draw on your brother's experience but sad to hear he ultimately succumbed to the cancer. This must be particularly hard for you after that.

    If you feel you might benefit from further support, Macmillan do some free counselling sessions. I used a Maggie's centre near me when I felt overwhelmed by it all. They are very good, even if you just want to offload to someone who's not in your family. You're probably already aware of that though from your brother's experience.

    I hope your RAI treatment is arranged swiftly. If you need any help ongoing, just message on here, there's usually someone who can relate and advise. Best wishes x

    Medullary Thyroid cancer dx May 2023

  • Thanks for the reply. After surgery I did not recover like some I have read. I was issued three days after op with Rivaroxaban as they thought I had a blood clot. I went to hospital for a blood test but it proved I was all clear. I suffered headaches continually before and after the op. I collapsed in my ward two days after op and became unresponsive. I felt it was my calcium as I was taken meds Adcal D3 & Alcidol. I also had blood thinning jags after the op but stopped when I left hospital. My unresponsive was also complicated as I was given Cocodamol though I react badly to Morphine and now have been red marked for Opoids. So since release from hospital I have not felt good with headaches, sore limbs, breathless and bad cough. I did have pain from shoulder and neck pain which did take a week to solve itself. I only really got better in last two days as my Calcium pill's were stopped. My headaches, stomach cramps and muscle ache  stopped then so I assume it was related to Calcium. Did give blood for full testing on Thursday so still await results.

    I am nearly 64 Male and have been drama dress most of life until I hit late 40’s. I have always we do not preferential treatment as we are governed by nature and genes we were given. I always like to determine my life’s trials and believe in knowledge be it through literature or asking questions. Medically up to op I was not given clarity I was suffering suspicious nodule, that means what and though My Thyroid was removed fully and no damage to any other part the pathology found more through microscope which was disappointing. So now I am down another path with some more knowledge gleaned and await 22nd to hear more soecifuc to my current health iissue    

  • Thanks I availed myself to talk to a nurse due to my headaches and sore muscles in my lower legs. I can walk a lot better and not suffer exaustion like I did. Did shopping round Asda today and was not knackered on my return. Being ill seems to be governed by time and patience is needed and is difficult with no definitive answers.,I prefer blunt talk and feel better being fully informed. I can see Medical staff do not want to alarmist without facts but as the person suffering or ill your in limbo waiting test or just waiting for appointment.