Nasal and sinus cancer - just been diagnosed- advice pls

Good evening Asettle, i have not personally had cancer in this area of the head and neck, mine were elsewhere. Please try not to scare yourselves too much as it could be the pressure of the tumour or just a weak blood vessel. I would urge you to phone the head and neck clinic/nurse or the consultants to either make an appointment or get advice, they are normally very accommodating when this sort of thing happens, plus it will give you both peace of mind. All sorts of things go through our minds when we get a sudden change and many a time mine have been nothing to worry about but the consultant prefers to know if something is worrying his/her patients. All the best.

                                                                                            Chris. x

Hi Chris thank you for taking the time to write .. I really do appreciate it! 
We have contacted  a nurse and someone is suppose to get back to us..

I have also read your story and I am glad to hear after everything you have been through .. you are now ok and getting on with your life. .. Its just great to have this forum to hear about everyone experiences even if it’s not the same it makes us aware of what other are going thought, while we also learning about others.

wish you all the best !  Ana

You welcome Ana, maybe you will get more replies tomorrow if someone has been through something similar, yes im ok now and only to pleased to offer my help, have a nice evening. 

                                                                         Chris x

Hi Asettle,

I was diagnosed with cancer in this area back in January 2020. The year before I was diagnosed I had a nose bleed out of nowhere, could not find where the bleed was coming from even though I mentioned the bridge of my nose was quite sensitive. I then had a blocked nostril and and lost my sense of smell. I also had headaches too. After 11 months of back and forth to GP I was diagnosed, I was then told my tumour was too big to operate. My nose was very swollen at this point. I don’t think the tumour was measured so I don’t know the size, but after seeing scans this year I could see why they couldn’t operate. I ended up having chemo and radiotherapy. I have since been told there is no sign of cancer, but my frontal sinus is being monitored as there appears to be changes which they have said is more likely the changes are from radiotherapy. I am now waiting to find out whether there is blood getting to the frontal sinus or if the bone is dying or dead. 

Tanya

Hi Tanya

sorry to hear you’ve been in this similar situation.. it must be so hard to go through this as I know it is for my husband.. having this forum is great , this way you don’t feel alone as we were made aware that what my husband has is a rare cancer… I hope that you have someone there with you that is looking after you as it would be nice to not feel alone. 
your story is some what similar only that after like 7 months of nose bleeds and waiting for referrals we have been told that they can only offer him an op as it would be better so we are waiting for the specialist in Charing cross’s to see us.. hopefully this week we will get a call.. we just worry that the longer this takes the 6cm tumour on the back of his nose is getting bigger causing the other hostile to bleed .. this is a new symptom and we worry it does not cause any stopping from having surgery. My poor husband since this does not sleep well .. and is very scared of hospitals so I have to be that big support for him. 
anyways enough about us.. I hope and prey that you will be ok.. this is not nice and hope you don’t feel alone .. if you have any questions please don’t be afraid to ask or if you just need a chat pls just say xx

hope you have better days everyday

Ana   

Hi Ana,

My husband has been a great support to me. Like your husband I was also told this type of cancer is rare. It is worrying waiting for that phone call, especially when he is suffering with a new symptom. Were you both introduced to a specialist nurse? I live in South Wales so when I was going through my treatment it was through our cancer centre here. I get seen now at the ENT dept at my local hospital. I keep in touch with the specialist nurse at the cancer centre when I can’t get hold of my specialist nurses at my local hospital. 

If I’ve learnt anything through this I am now more forceful with things when it comes to my health. I count myself lucky to be honest as the cancer was only in the nose and hadn’t spread anywhere else. The tumour growing outwards towards the eyes but I never had blurred vision but was my worry it would affect my eyesight. The cancer diagnosis was adenosquamous carcinoma of the nasal and sinus. I was told this type of cancer is rare but grows quite fast. I hope you get your answer this week to when your husband’s surgery will happen. Don’t forget there is help out there if you both need it. My specialist nurse referred me for counselling as well as putting me in touch with a welfare officer at my cancer centre, as I was worried about still paying bills as I have 2 teenage daughters. My employers were very supportive and helped me a great deal also, so I managed to keep afloat whilst going through treatment and then recovering. I have now started a phase return at work so only work 3 full days a week and one of those days in the office. I’m 16 months post treatment and even though I suffer with watering eyes, dry mouth and have to rinse my nose 3 times a day as my nose doesn’t drain the mucus, I am grateful I am still here and I have accepted these side effects as they are minor things.

I had to wait a year from noticing the changes in my nose to diagnosis as I was treated for an abcess and then a cyst. The lump came out on the side of my nose and it was really painful inside and out. I too had nose bleeds. It wasn't till my nose started collapsing and I looked like a boxer that I was sent to a dermatologist who diagnosed stage 4 nasal squamous cell cancer in Feb last year. I then had to wait for all the scan and mri results which was a very worrying time. I went to 3 different hospitals and ended up at The Christie in Manchester. They then had to find a surgeon willing to do the op as it is very rare and quite an intricate op because of all the nerves and blood vessels. The scans showed luckily it hadn't spread to lymph glands.

I had to have surgery which was a partial rhinectomy op, which was cancelled twice due to covid. I kept chasing it up as was worried it would spread. My surgery was in June last year and most of the bone, front and part of one side had to be removed. Unfortunately some of the cancer was left so had another operation in September removing most of the sides. Luckily the bridge was left so I can still wear my glasses. This appeared to have removed it all and after the slides were checked given the all clear which meant I didn't have to have chemo or radiotherapy.

Just had my face to face last month, a year later !!!, as this was also postponed due to covid. Yes I have been given the all clear and am on the waiting list for a prosthetic. Yes I look different and some ppl stare but I am just thankful to still be here.

I hope this helps your husband and if you are worried I would chase up your appointment.  When he gets his results and finds out what op he is going to have, plz get in touch if you have any concerns.

Hi Tan40

thank you for taking time to write. I am happy to hear you are getting back to your life even if  it means it’s not the same but yes what counts is that you are here with your family and that they are supportive.

at this moment we know he has nasal/sinus cancer stage T4 and we live in Poole dorset, the doc said surgery is our option but because of his stage it’s best to go to London and they have specialist there that deal with this and at very good and have more experience. 
My concern is this week his other nostril has started bleeding after the other side has stopped,  we will of course contact the cancer specialist nurse we were introduced too tomorrow as they don’t work on weekends so we have to wait but this waiting is scary no knowing what is happening now and why .. We have an apt to have a Pet scan to check if there is cancer anywhere else as they told us this cancer is slow growing cancer so they want to check that he does not have it anywhere else because they had only done an MRI and CT scan of the head only before so this time a pet scan will check the rest of the body and on Thursday we meet the specialist. we hope that because his other nostril is now bleeding here and there, that this does not delay any op dates they may offer us… we are just frightened that this horrible thing may be growing elsewhere else now.  I am trying to stay positive for my husband because he is so scared and it’s just us two so to be able to hear other stories it gives me hope that he will be ok even if it may mean life for him may not be the same.

It is great to hear everyone’s story as we learn from other and helps us understand things that are happening.

anyway… thank you for sharing your story with me and please stay strong

Ana 

hi Terracatb

thank you for sharing you story and I’m happy to hear you are ok and getting on with life even if it means life changing.

Sorry about ppl staring .. some people just don’t understand how this can affect others but I hope you find it in yourself to stay strong and ignore those that do that. 

your story sounds a little like ours, my husband is terrified of losing an eye or nose .. he is not sure how he will cope.. but we know and have been told it will be life changing so I am expecting something like this but he won’t accept it.. still talking about it makes him anxious and very emotional.

I am obviously here trying to be supportive and because I have no idea of what our life will be like after the op but I am happy to hear from other as it helps me understand what I may have to expect. As long as he is still here that is all that matters to me as I can’t bear to think about not having him around. 

It’s a shame that due to Covid some of you appointments and plans had to be postpone but do hope you will get your call soon for prosthetic… and again what matters is that you are here .. I am sure your family feel this way so stay positive and stay strong ! 

Wish you all the best Ana x

It’s good he is getting the PET scan. I may not be able to help regarding operation. I never had that option and my only option was to have chemo and radiotherapy. The aim was to shrink it at the time and maybe operate. Within a month of having my first cycle of chemo the headaches subsided. I was glad to not have them as they were pretty intense before that. 

There isn’t a lot of awareness out there. The tumour has damaged the bridge, I have asked if this could be rebuilt in time but no one can give me a definite answer at the moment. The main concern at the moment is to see if there is any blood supply getting to the frontal sinus. Hoping to get that answer on Tuesday. Just listen to your husbands concerns as he will need to air his feelings. Even if you think he’s being negative, he isn’t he’s just trying to get things of his chest and trying to compartmentalise things. Talking about it will help and sometimes speaking to someone like a counsellor does help as they are not in the bubble and you get some good advice and reduce anxiety like mindfulness. All you can do is try to understand what he’s going through and be there to support him, which you are already doing. But don’t forget about yourself too, you also need to have that support as you are also going through it too. 

Tanya