Hello and thank you for your post. I am sorry to hear about your diagnosis and the need for surgery. I can appreciate your concern.

It might be a good idea to see how other people in a similar situation have coped. However, be mindful that we are all individuals and surgery can affect us all, to some degree, differently. 

It might help to read our information about maxillary sinus tumours on our website here  and the surgery to remove them here (scroll down the page) 

You may find these two UK charities also give information and support to people undergoing this type of surgery. They are Changing Faces and Head & Neck Cancer Foundation 

Also, posting in another area of Cancer Chat might mean more people see your post, you can see the list of these other areas to the left of this page.

I hope this has helped. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline 

Hi there. I, too, have cancer in my maxillary sinus (we're a very small club). I was diagnosed in February and was told I would be having some very extensive and damaging surgery. Instead, I had 3 rounds of chemo and 33 rounds of radio after my oncologist said it was incurable and surgery was off the table. I had 4 teeth removed pre-radio. This is a preventative measure for future safety.

Please feel free to contact me if you have any concerns, or on here if you so wish if that's more comfortable. I've been looking for someone in a similar position to myself as well.

Good luck,

Matt. 

Dear Matt

i am so very sorry to read your post, bless you.

it sounds as though you have been through lots of treatment already, goodness me 33 rounds of radio. You must be beside yourself and so poorly . I'm not as far as you are, I had 3 teeth removed last week and my left sinus was full of pus so they cleaned it out and took lots of biopsies which I'm waiting for the results of. 
I've  just had an appointment come through for the 4th jan to discuss a treatment plan whether it's cancer or not

Regardless of the biopsy result I was given the devasting news last week that I need an open operation to remove a tumour in my maxillary sinus that is too big to take out down my nose. There is also something in my orbital area that is eating away at my nerve, hence my pins and needles in my face.

I know it is very rare, as I've used Dr Google, which I suppose we all do.

can you have more treatment to shrink your tumour more and keep it at bay? Are you struggling with a dry mouth? And swallowing at all?

the trouble with maxillary sinus cancer is that it's often discovered by accident and can be very serious before it's even found

well I'm sending you my heartfelt wishes Matt, thank you for responding to my post, as I'm so worried and distraught 

stay strong

debs 

I'm more than happy to speak to anyone about it. I always have been and its just been my way of doing things. Mine was discovered due to an abscess along my upper left gum and a swollen lymph node under my left jaw. Doctors and dentist xrays discovered it. And like you say, it was already at stage 3 when found. The damage is irreversible. My jaw and cheek are "eggshell" in nature now apparently.

The problem I had was I told my diagnosis by a surgeon rather than oncologist. The surgeon had shocking communication skills and told me I was having an 18 hour operation to remove my eye. Devastating. It didn't happen and so far, hasn't. Or won't. Thankfully.

Regards swallowing - yes, I struggled. Dry mouth mouthwashes helped as well as spray. Just ask doctors and keep topped up. I lost 3 stone in weight during radio because of the burns and ulceration in my mouth. I didn't eat a crumb of food for 6 weeks. 

The tumour in my sinus has shown a 60% reduction in activity but not in size. You can't see it looking at me so it's not visible. My lymph node grew to quite some size which was very visible. It is now full of dead cells and scar tissue and will be removed at a later date.

Regards your surgery, I haven't seen anything online (trust me, I've not googled a single thing throughout this) but I can't imagine it being too evasive despite how it sounds. But I can understand facial scars will always cause anxieties. I remember how I felt when I was told the extent of my proposed surgery. 

You sound very similar to me in diagnosis. I'd be happy to share experiences or advice along the way. 

Kind regards

Matt

Well, I've had to read that twice with tears in my eyes. My god you have been through it Matt

the surgery is a cut along the underside of my left eye, down the nose around the bottom of the nose to the middle of the lip, so basically (sounds awful) they can fold your face back on itself to get to the tumour. I take alot of pride in my appearance, so it's getting my head around what's coming, and the scarring. 

im dreading the recovery, I'm having a dreadful dry mouth and throat/swallowing now so heaven help me after the op 

I think I'm going to be the same as you for eating even if I don't have radio, they have said it would be liquid diet via a tube, that sounds horrendous what you've gone through with ulcers and burns. 
 

like you, there is no visible sign of any growth from the outside.

60% reduction is good, can they keep giving you radio? Or is it in short spurts? The lymph node is good that it can be removed down the road , but the least of your problems at the moment

ive not seen an oncologist yet, just an ent consultant and a dental consultant. Should I be requesting to see one do you think? 
I was also wondering about a 2nd opinion? Is that something you did at all Matt

thank you

debs 

I never asked for a 2nd opinion, no. Thankfully, the oncologist took over and spoke to me properly and with a proper plan of action. The surgeon, looking back, seemed to revel in what he was going to do. I'm 36. I didn't want life changing surgery and an eye removing!! Surgery should have been the last option, not the first. I will no longer deal with said surgeon and have my thoughts clear on him with my nurse.

I didn't have a feeding tube for egotistical purposes. Big mistake. Cost me 3 stone.

Radio going forward depends on scans I guess. There are no immediate plans in place anyway. 

Well if ok with you Matt, I would like to stay in touch

i wish you all the best going forward and hope and pray that things improve for you

thank you

debs 

I'm happy to stay in touch. The more info I can gather myself the better. I'm now post-treatment I suppose as no other plans are in place. All about building my strength back up going forward. I get your point as well about pins and needles because of the nerve damage. I have no feeling in my top lip for similar reasons and my cheek is cold. I've also developed a fistula in my upper gum which is to be sorted this month. But it's a direct passage into my sinus and like you explained earlier, puss comes from it and when it's bad for me the taste and smell is very disturbing. Not to mention heat and cold being very obvious to feel. But this is me going forward now. Got to get used to it I guess. 

My god, what a dreadful disease, horrendous

my heart goes out to you at such a young age Matt

**** I can't imagine what you are going through there are no words 

Bless you

ill be in touch

debs