Hi I'm new to this group but have so many unanswered questions...
Back story... (sorry for the essay) my L5 right lymph node has been swollen since June 2022, back in November My GP sent me for a scan to rule out lymphoma... the scan confirmed there was no signs of lymphoma but during the scan a nodule was found on my left thyroid with micro and macro-calcification, the sonograph categorised a U3/U4, I was put on the 2 week rule to see the ENT consultant and have a biopsy. The first biopsy didn't penetrate the nodule so a thy1 (undiagnosed)was given. We agreed to attempt a 2nd biopsy and if still undiagnosed we would go forward with a hemithyroidectomy. I had my 2nd biopsy 3 weeks later and was ringing daily to see if the results were back after 9 days I spoke to the ENT assistant and she confirmed the biopsy were back and I would have a telephone consultation in 4 weeks( I thought it must be good news!) I spoke to a different consultant as mine was on annual leave and he expressed that the 2nd biopsy was a thy1c undiagnosed and he would put me on the list for surgery, I was shocked it wasn't more urgent but was happy to finally be referred . After 8 weeks i noticed swelling in my left L5 lymph nodes but still hadn't heard anything in regards to surgery, so I rang the booking team to see what the waiting time was... I was told I was a thy1c and there were more important and urgent people ahead of me and I would have months to wait....i also found out that my referral was general and not urgent what I felt was wrong( later found out i was categorisedas a cyst in error). I contacted my Ent assistant who told me the that I was non urgent, I expressed that both my L5 lymph nodes were now swollen and a nodule with microcalcification should be seen as urgent. She emailed my consultant with my concerns. Within 2 days I was being called by the booking team to offer me a surgery date for 2 weeks time when I expressed they made a mistake she quickly jumped and said no there was a cancellation and if I wanted to wait I was welcome to. I new they had made an error but wanted the nodule removed. I spoke to the ent assistant again and requested a total thyroidectomy and lymph nodes removal as I new it was cancer and with 4 children 3 of which are disabled I wanted to Avoid 2 surgeries. She said she would email my consultant and get her to review my notes I received a call 2 days later and the assistant informed me that the consultant saw no reason to do a full thyroidectomy as the right side showed no nodules so her professional advice would be to go with the hemithyroidectomy. She also informed me that if I wanted a full thyroidectomy I would have to wait for an alternative surgery date as the surgery booked was for a hemithyroidectomy. I decided to go with the consultants advice and stick with the surgery to remove the left half of my thyroid. I had my hemithyroidectomy on March 21st following a hematoma that required me to have an emergency 2nd surgery an infection and a seroma I am finally recovering from that surgery, on April 25th I had my consultation with my ENT specialist who confirmed the nodule showed papillary thyroid carcinoma, but it was fully removed so there was no concern to look for margins. She expressed she felt no further action was needed but she spoke with the board and THEY (not her) felt a CT was needed. When I expressed my concerns about my lymph nodes she explained lymph nodes swell.... and she's had lymph nodes swollen in her neck for years they don't mean anything(stupid and unprofessional advice in my opinion as lymph nodes are the 1st sign something isn't right.) I had my CT SCAN done on Tuesday 2nd May and am awaiting those results but I'm more concerned about my left side lymph nodes they are larger to a point you can see them on my neck my neck is stiff and achy and I don't know if this is normal as it's been getting worse the last week I also feel that the consultant should have looked into radioactive iodine treatment just to kill any cancer cells if any were left. Is it wrong to feel that I'm not being hears.
Thank you. Sorry again for the essay. I just wanted you to have all the information.
