I had a total thyroidectomy a month ago due to papillary carcinoma and Graves disease. Thus far, I have had no oncology involvement in my treatment. I do however have an oncology appointment on Monday and I was wondering what the purpose of this appointment is/what should I expect this appointment to consist of? It is an hour appointment and I really struggle to see what possible discussion may be had that is expected to last an hour.
Previously I was cared for by the endocrinology consultant as thyroid cancer was not suspect. I was told I had cancer over the phone by an endocronology consultant I had never met before in early April. I had surgery to have it removed in May. As a month after the surgery I still did not have my histology back, I had had no follow up appointment and I could not tolerate the high dose levothyroxine, I ended up just requesting my histology and reading it myself. I felt I needed to know the histology so I could know how risky it would be to drop my levothyroxine dose. As it is a pretty typical presentation of papillary carcinoma, I am really not concerned about the cancer itself.
I suspect based on my histology and my decision not to supress my TSH (because it caused mania) mean I will be recommended to have radioactive iodine. Indeed, my surgeon has already said that it is needed. I am fully aware of the risks of RAI as these have already been explained by my endocronologist previously.
Any information on what to expect would be really appreciated. Thank you in advance for your help!
I had my first oncology appointment a couple of weeks ago. It has been a protracted process for me to get to a diagnosis after being continuously reassured that the rapidly growing lump in my neck was not cancer - it was! After a couple of years of missed opportunities I was/am anxious about my prognosis and this initial appointment gave me opportunity to ask questions. I met with my consultant, medical practitioner and specialist nurse and the next stages of treatment were discussed - for me RAI. I also had bloods taken and medical history noted, I was then given my admission date (it is in a week!). I also picked up the thyrogen to store at home in the fridge. I was at the hospital for about 5 hours and certainly left feeling informed and reassured about what was going to happen and why.
I hope all goes well for you.
Hi Marg. Thank you for that. I really hope I'm not going to be at the hospital for 5 hours. I'm glad your appointment went well. It is really useful to know your experience so I can get a general idea of what to expect. Did you also have a thyroidectomy before meeting your oncology team?
I do not have many questions for the oncologist so perhaps my appointment will go much quicker. I did have a lot of questions when I was initially told I had cancer but with no one to answer them, so I ended up finding the answers myself. I come from a research background so I went straight to the peer reviewed journals for further information.
I also work in complex mental health, where I specialise in autism, so I am used to having the general content and structure of all appointments given in advance. I have learnt throughout this process that I need to change my expectations somewhat.
I similarly was told there was absolutely no way my goitre was caused by cancer. They found Graves disease so they thought that accounted for it. When my goitre continued to grow despite being euthyroid, I had an uptake scan which showed a cold nodule. Again my endocrinologist assured me it would not be cancer, partly I think because she was not given the measurements of my nodule. When it was measured for the FNA it came back as 6cm and Thy4. It was confirmed as papillary carcinoma post-operatively. Statistically it was just so unlikely that I completely understand why no one suspected cancer.
Yes I had a hemi thyroidectomy in December and completion in March. 5 hours does indeed seem a long time but we had to wait for the blood department and then pharmacy and then all the different people - it actually passed very quickly. I also didn’t explain that this was at a specialist cancer hospital and my surgeries were at my local hospital so probably a lot more form filling! I hope it all goes well on Monday for you.