u/Kitchen-Company7165

Thanks to everyone that posts to this sub. I've been getting an amazing amount of real life information that you don't get from doctors or any other support groups. It's an amazing community and I felt it was time I contributed in case someone else is going through what I'm going through.

I'm only at the start of my journey but the amount of ups and downs and information is already overwhelming. This might be in too much detail below but feel the more info the better, for people possibly going through something similar.

I am a fit and healthy male in my early 50s, married with a daughter who is 11 nearly 12. I go to the gym three or four times a week, I do yoga/pilates multiple times a week and cycle regularly. I smoked many years ago but gave that up a long while back and don't really drink, maybe once or twice a year.

The first symptom I had was in late Feb/early March this year when I noticed one eye was tearing up more than the other when I was on long cycle rides. That went on for a couple of weeks but as I had been diagnosed with dry eyes last time I had reading glasses fitted I just put it down to that. Then some time early April I noticed a small lump appear right on the tear duct of that eye. I immediately went to my GP that week and he sent me to the eye and ear hospital to get it checked out, but he suspected it was a blocked tear duct (explaining the tearing up in one eye).

At the eye and ear hospital the doctor flushed my tear duct but it didn't affect the lump at all....not good. He called in a snr consultant who didn't like the look of the lump (it was very small) but it was now above and below the median line of the eye, 1st real sign of something possibly very bad. So they sent me for an urgent CT, next day I think, which showed a suspicious/cancerous mass in the orbital/sinonasal region. I went for a MRI the following day and got those results a few days later saying likely cancerous mass in the ethmoid sinus, with orbital extension through thin bone dividing sinus/orbit of the eye. Luckily there as no obvious brain/skull base breach and the eye/optic nerve still largely preserved at that stage.

But as you all know everything comes with an asterix *. You start to quickly learn doctor speak, so they aren't going to give you 100%s on anything. For example, no obvious brain/skull involvement doesn't mean that there isn't any and getting them to indicate 'management' vs 'curative intent' seems like a minor difference but it's everything. My doctors have been amazing but they have their own language that you have to learn and navigate.

I went for a biopsy that week, well it was called endoscopic sinus surgery as they wanted to get as much samples as they could, from my sinus, my eye orbit and cheek by going up through the nose.

Biopsy histology report confirmed sinonasal squamous cell carcinoma (SNSCC) p16+ and was sent for a localized CT on the orbit of the eye and a PET-CT to see how far it had spread and if it was secondary/primary etc.

The initial plan before the PET-CT was that I'd be going for chemoradation to reduce the tumor and then follow up surgery to try and remove what's left but this was prior to MDT first meeting. I could tell that they were hoping to control or manage the progress but didn't seem too confident of the long term efficacy. But at that point I was hoping I'd make it to Christmas to be able to put my affairs in order and have a little time with my family/friends to say goodbye. This type of cancer is super aggressive and the numbers aren't good.

Lots of people say that the unknown part of this can be the worst part mentally (I'm sure that's not true after reading some of the brave stories of chemo/radiation) but it sure has been scary. So far the scariest wait and meeting was the PET-CT results. Felt like that would indicate if I had a fight ahead of me or if I had a very short time before dying. I'm pretty level headed and confident person but I was spiraling the night before that meeting.

That brings me up to the present, like 6 weeks after discovering a tiny lump after having a teary eye. My PET-CT just came back and that the tumor is primary, confined to the sinonasal/orbital mass appears to be surgically resectable, there is no distant metastasis and no lymph node spread as well as no secondary detected. I feel incredibly lucky to say that, but obviously still facing a locally advanced stage IVA, highly dangerous form of cancer with a significant recurrence risk but hey you have to take the wins when you get them. So I think as of today it's classed as 'cT4aN0M0 sinonasal squamous cell carcinoma with orbital invasion'

Good news followed by the inevitable *. So the fact that it looks resectable and that it hasn't spread anywhere the MDT has changed my treatment plan 180 degrees. I'm now due for a orbital exenteration (removal of the eye/orbital contents) followed by chemoradiation. So I was preparing mentally for hard chemo & radiation for the summer, now I'm going to be losing an eye and dealing with the impact of that before starting chemo/radiation as soon as my surgery heals. Your perspective changes so much, this is what I would consider at this point, amazingly good news. If you told me that 8 weeks ago I'd have been devastated.

It's a weird journey this cancer business and this sub has been a very real and meaningful support for me which I'll sure to be leaning on while I go through this sh*tshow.

Any advice or anyone having a similar journey feel free to comment, if not, thanks for reading xx.