Cancer diagnosis experience

Hello all, 

I was diagnosed with thyroid cancer just before new year and wanted to tell the story of how it all happened. I didn't post on here but reading other people's experiences helped me and wanted to tell the story in case it is useful for anyone else.

I was brushing my teeth one evening last July and noticed a lump in my neck when I looked in the mirror. I thought it was very strange (and why had a not noticed this before as it was pretty noticeable!) I decided I shouldn't panic as it was probably fine....just need to get a GP appointment. Alas this was not so easy - I was offered a phone appointment for four weeks time. So I changed GPs and managed to get seen.

My GP referred me to ENT and thought it would probably take 4-5 weeks (I don't live in England so thyroid lumps not covered by two week wait) So I waited and waited and didn't hear anything. Meanwhile the lump was bothering me more, mostly because I just desperately wanted to know what it was. Might sound strange but I named my lump. This did help on some level, for some reason giving it a name made it easier to live with. We had to get along somehow. Meanwhile I researched everything I could about thyroid lumps. I got really good at being able to spot which ultrasound images of thyroid nodules were benign and which suspicious for cancer. I prodded my nodule, trying to figure out whether it was a cyst, was it solid or had it grown? I knew the odds were it would probably be fine. I wanted to know everything I could so that when I finally did get an appointment I would understand any test results and not be surprised by what the next course of action would be. I didn't want anything to be a surprise so I had to know every possibility. I suppose at this time, finding out as much as I could was the only thing I could do or have any control over. 

Everyday I was coming home hoping for an appointment letter, which arrived at the end of September. I was really lucky that I had the ultrasound and fine needle aspiration biopsy done at that appointment. I was so desperate to see my ultrasound scan and the screen was positioned in such an awkward position to see. Waiting for the results of the FNA actually felt like the longest wait or all the waits. Maybe it would all be fine and that would be it? Perhaps four months of worrying and it would be over nothing. Maybe the answer wouldn't be clear and then more waiting for results. Either way I just really wanted to know.

In the end results came back as Thy 3f. This meant surgery. I was not that enthusiastic about this but keen to be rid of my suspicious neck passenger. I had never had surgery before. I had always subconsciously thought that when I needed surgery it would be because I was unwell or injured and surgery would be to fix something, but I wasn't really unwell as such and my nodule could well be benign. But then I had a grape size lump in my neck of unknown origin - it needed to go. 

I had a hemithyroidectomy and it was ok. Everyone in the hospital was lovely to me. 

My surgery was the end of November and my next appointment was end of December to get results. Although this wait also seemed quite long, it was more manageable as suspicious nodule was out of me and being carefully dissected elsewhere. It was an odd journey to the hospital that morning, knowing that other people knew my fate but I had no idea whether I would be told everything is fine and it is all done, or whether there would be more. 

I suppose now would be a good time to mention I work in an allied health profession which works very closely with ENT (but my consultant is not someone I really know) This meant that I knew the head and neck nurse a little (we had sometimes chatted in the corridor when we were both waiting to see patients) She was in the room when I went in to see the consultant. I thought initially they were just chatting but when she didn't leave I knew that that meant I had cancer. My diagnosis was minimally invasive follicular thyroid cancer 3cm. I remember telling the consultant I wasn't surprised and it was ok. The options were no more surgery or have the other half of my thyroid removed. I am still really battling with what the right answer to this conundrum is. 

I didn't really know what to do with myself after my appointment. I had gone to the appointment on my own. I was in the city centre and went and looked at home furnishings in a department store. I think staring at different coloured cushions sort of helped me process the information! My main worry was telling other people and how they would react, and then whether I should have more surgery or not. 

Telling other people has been really hard. I feel that often they often hear the prognosis is good and think you are fine and it is over and done with or on the other hand are gravely concerned. I went to work the day after I was told I had cancer and it was tough. I didn't feel I could take the day off because I wasn't unwell as such. I didn't feel like I could ask for support from charities / organisations because I had only had surgery and wasn't having any other treatment and it was a cancer with a favourable prognosis. I didn't have any questions as such (well I did, and still do,  but not ones that anyone knows the answer to) so I didn't really feel that I could talk about it with anyone. People wanted to be positive, I didn't want to complain or bring anyone else down but I was really struggling. I was also really beating myself up for not knowing whether I should have more surgery or not. 

January was awful (it usually is a pretty tough month at the best of times!) I was completely exhausted. By the end of a day at work everything physically ached. I didn't know whether I was just stressed or whether the other half of my thyroid was not working properly. I managed to get a blood test and thyroid was working ok, so I assume it was just the stress of it all. I talked about my diagnosis with a work colleague who had a diagnosis of cancer with a worse prognosis than mine a few years ago and she told me it was ok for me to be upset about it. This really helped me. 

And now...I still don't know if I should have a completion thyroidectomy. Thinking about the subject makes me feel queasy - I have been considering it for months and can argue with myself round in circles of advantages and disadvantages and I am still beating myself up for not knowing but that's another story.

But I do feel better. Not completely but better than it has been. And I suppose that it what I wanted people to know, that it does start to get better and I really hope it does for anyone else reading this too.