Sinus cancer.

Hi Alex, tell me about it, we know our bodies more than they do. I am doing ok just recovering from treatment. Finished treatment in May. I am on my 2nd bout of oral thrush due to having a dry mouth. I just had my eyes tested today and have been told they are fine so have another check up in April next year, could be sooner if I come across any problems. I was told my tumour had pierced the bone in the bridge of my nose so that’s probably what is causing that. Know how you feel with watering eyes. Mine still water all the time, been told by my consultant that there is still swelling around the area where the tumour grew. I hope you are not having any problems with your vision? 

I've had some blurred vision but I think most of that is due to the watery eye. I'm so happy that you past the eye check and you have good vision. You are doing so well. It's incredible, isn't it, how fierce the tumour is like to pierce through the bone. I am so so happy that you are doing well. 

My fingers are crossed that all goes well with you! It is incredible the strength of the tumour was able to do that. My nose has widened and I have a dent on the bridge of my nose. It’s definitely changed shape before all this happened. 

I would see if you can get an ophthalmology review done.

My imaging report was shocking in terms of the likely impact my sinus mass would have on my sight.

The primary lesion appears to arise from the right maxillary sinus where there is a destructive mass causing bone destruction of all the walls anteriorly, posteriorly, medially and superiorly,  There is invasion into the right orbit and involvement of the inferior right orbital rectal muscle.  There is right proptosis.  There is extension into the molar sockets seen in the right maxilla.

My haematologist wanted a review by ophthalmology before starting chemo and they were certain that my mass was putting pressure on the muscle, rather than having invaded it, and that my vision problems would resolve during chemotherapy.  Two weeks after I started chemo my vision was back to normal, but prior to that review I had assumed that I would lose sight in that eye at best and the eye itself at worst. 

Thankyou Lollie, they are holding a meeting this Monday, the skull surgeon and Neurosurgeon to discuss a plan for the biopsy and any surgery and or treatment.

How are you Lollie x

Hi Alex, hope ur keeping well and staying strong. I hope they can tell u the plan very soon! I found it really helpful to write down any questions and I brought them with me and a note pad and I wrote down literally everything they told me during appointments. 

I had symptoms for over a year and a half before I was finally diagnosed, I think my GP should have just rang ENT but she kept giving me nose sprays which were absolutely useless! 2 weeks after diagnosis i was in the cancer centre for TPF chemo, I was the 2nd person they'd used that type of chemo on! 

So I'd say once they have ur plan then things will move quickly and they can tell u exactly what u have! 

Hi Dee, thankyou so much for giving me advice,

I have read your messages on here and I often think about you, how strong you are and you have helped me stay positive and strong. I lost my sense of smell and taste about a year and a half ago, that was the first symptoms, just thought it was age related and it will eventually return.  Then I had a watery puffy eye, had this for a year.  I too went to the Doctor and was given, eye drops and nasal sprays, then lockdown etc. Looking back and knowing what I know now, I was having classic symptoms. It started in my Sinus and blocked them, spread to nasal and has move up and apparently gone through skull bone. Its large, 3.5 x4.4x5.5mm, I'm feeling okay, nasal pressure and tiredness.

The surgeon is having a meeting on Monday with Neurosurgeon to discuss a plan for biopsy and best way forward because it's very complex.

I'm very scared but I'm in good hands but it seems to be taking so long. I thank you again Dee for your messages to me and everyone going through this, you certainly are a Warrior. 

Awww thank u Alex, that really means a lot! We are all warriors on here, we seem to be able to dig deep and find a wealth of stamina and courage within us cos we know we're about to have the fight of our lives and we need to come out swinging! 

Yes I lost my taste and smell and had the odd nose bleed, those were my 1st symptoms, then the awful congested nose, nasal drip, watery eyes, sensitivity to light and then the big lumps between my eyes and 1 on the roof of my mouth. My tumour was 3.6 x 6.5 and it shrunk and broke in half after the 2nd round of TPF chemo. 

Do they suspect its snuc Alex?

I know it's really scary Alex, the fear of what's going to happen and how u are going to be affected, I remember feeling vulnerable, like I had no control over anything, it can be terrifying, but see once u know what's happening and have clarity from them, that will help u! There's a warrior in u too Alex! 

Awww that's lovely, yes they do suspect snuc, they do say from the way it's grown and from the MRI that it looks aggressive but I guess the biopsy is to find out if it is and or to find out the best way to treat it, I'm guessing.

I am feeling very vulnerable at  the moment, I'm over the initial shock, well not fully over it but it's sunk in.

Scary times,  Thanks Dee, like you said, once things get moving then I will be more positive, I am getting ready to fight this.

Thankyou again, wonderful person x

Hi Alex, I haven't been on here for a while but believe me I know what you're going through. The treatment will take it out of you physically but the real battle is the mental one. Being on here and reading people's stories you will see just how resilient everybody is.

It sounds to me like you have absolutely nailed the mindset and your preparing for the fight. I see Dee is in touch with you. She is an absolute legend and she helped me so much through some pretty dark times.

If there is anything I can do or you just want a chat get in touch

Chippy