Sinus Cancer

Hi,

I was diagnosed with sinus cancer back in January 2020. This was a bit of a shock for me and my family but looking back at what I was experiencing I had all the symptoms from February 2019. I had a random nose bleed that came out of nowhere, I have never had nosebleeds prior to this, I attended A&E and they could not locate where the bleeding was coming from. At this point I had mentioned the bridge of my nose felt very tender and this was ignored. I previously collapsed and had a seizure in November 2018. From there on I made numerous trips to my GP as my nose then became blocked, especially in the one nostril. I was prescribed nasal spray, treated for a sinus infection and was also given stronger pain medication namely Naproxen for the headaches. The headaches began in May 2019 but gradually got worse from August onwards. My nose then began to change shape and become more swollen and changed my facial features. This started the end of September 2019 which led me to see another GP at my surgery again was just prescribed more nasal spray. I then went back to my GP in October 2019 and a referral was made to ENT but this was a non urgent referral at the time. During this time a lot of my colleagues were mentioning about the changes to my nose to the point I thought it could be broken, attended A&E and was turned away at triage and unable to see anyone and made to go and see my GP. Another trip to the GP and was told a urgent referral would be made. Surprise surprise no appointment from ENT. The headaches were getting worse and I had to take pain medication every four hours as they would not let up. Made another trip to my GP surgery the day after my 40th birthday just to be prescribed more nasal spray and pain medication to help with the pain. Neither worked, made the most of my 40th birthday party my husband organised for me and went away with friends for the Christmas Market which I tried to enjoy but was not myself due to the amount of pain I was in and was starting to feel tired more than ususal. I then took myself back to the GP the beginning of December 2019 where the doctor got in touch with maxilliofacial department. I had an appointment to see them in January 2020, but it all got too much so went back to GP on New Year's Eve 2019 where I was sent to A&E with a letter so this time I did not have to go through triage and was sent straight to the assessment unit at the hospital.

 

A biopsy was taken under local anaesthetic and was told they were trying to determine if I had autoimmune deficiency. I was then prescribed the steroid Prednisolone in the meantime. I also had a CT scan with an appointment for an MRI would be made in due course. I had a call back from ENT surgeon to say the biopsy came back inconclusive and an appointment was made to attend ENT clinic, which was a waste of time at that point as there was not much they could say, I also attended an appointment with maxilliofacial and when probing them they showed me my CT scan and said there was some kind of blockage and that there were changes from my previous CT scan in November 2018. I then had to have another biopsy taken under general anaesthetic during day surgery. Whilst waiting for the results from that biopsy I then had my MRI on 22 January and on 30 January I had an appointment with my ENT consultant and was told I had adenosquamous carcinoma and it was an agressive fast growing. I then had to undergo more scans in readiness for an MDT meeting that was taking place on 3 February 2020. At this appointment this is when I met my oncologist consultant, after speaking to my ENT consultant who just said there is nothing we can do surgically as the tumour was too big. After a bit of silence my oncologist informed me I would undergo chemotherapy and radiotherapy. I said to her I did not want to wait any longer to start treatment as I had been dealing with all my symptoms since last year. I then had to go home and tell my two girls I had cancer, there were tears and then came the call from my oncologist with an appointment for me to start chemo which started that same week I was diagnosed. I was meant to have 3 cycles of TPF but because of Covid I was told it was too risky to carry on, so radiotherapy was bought forward. I had 7 weeks of radiotherapy but ended up at my local cancer centre as I was struggling to eat anything due to the pain I was experiencing. Spent 3 and a half weeks without any visitors due to Covid but my consultant did let me see my husband and children a couple of times before the hospital changed things again.

 

So now that treatment is over I have recently started to struggle mentally. My husband had been off work on furlough throughout my treatment and has recently gone back. I thought I was fine with this but I have realised I heavily relied on him as I don't drive and due to Covid don't feel safe on public transport. I have also felt a bit isolated due to the fact my type of cancer there is not much support out there unlike other cancers. I am wanting to connect with anyone that has had sinus cancer or direct me where I can connect with people. I already on the Macmillan site and on the head and neck group there where I have come across people who have been diagnosed with throat cancer.

  • Hello Tanya 

     

    I am sorry for the physiological struggles you're experiencing since your treatment. 
     

    Thank you for your detailed post, it has helped me realise I am not crazy as I experiencing all the symptoms you mention except seizures.

     

    i do not have a confirmed diagnosis yet but I would love to connect through this journey.

     

     

  • Hi Lilimu,

     

    I was told the seizure was not connected to the cancer, but I feel I could have knocked my nose as I collapsed. The CT scan and MRI at the time didn't show anything.

     

    If you can afford it and don't want to wait see someone. You will find NHS doctors working privately. One of the partners at my place of work mentioned I should see someone privately, I would have if I could have afforded it but it was too close to Christmas at the time. 
     

    I am happy for us to connect during your journey

     

    Tanya

  • Hi there, I realise this post is over 4 years old, but hoping you are still on here and you are doing well. I was diagnosed with paranasal sinus cancer of the ethmoid sinus in 2019, had surgery, recovered fairly well, regular scans for almost 5 years and clear. I had an MRI in January and called in to see Drs Feb as something spotted on the scan. Yep it was back, had biopsy and removal, then back in for further surgery and a neuro surgeon to repair the hole they made, and now starting 30 rounds of radiotherapy on 11th July. It's such a rare cancer it's hard to find others who have been through similar. 

  • Hi Makisback you have replied to an old message but I'm glad because I have paranasal squamous cell carcinoma of the nasal cavity and ethhmoid sinus and would be really happy to chat as you're right, it's rare. Message me privately if you want to 

  • Hi, 

    Been struggling to find anyone who's been suffering from this sort of diagnosis. 

    Have sent you both a request to message directly. 

    Thanks

  • Hi Brepa, thanks for replying, I've had my mask fitting, I'm still throwing up gunk from my nasal cavity. How you doing?

  • Hi there, how you doing? Same cancer?

  • Waiting on biopsy results.

    Have sent you a message directly as just wanted to ask you some questions as feel so paranoid and nervous. 

  • Hi again,

    Today I started proton beam therapy in London and tomorrow is my first chemo. I'll be here seven weeks. I'm feeling optimistic at the moment, although I'm likely to lose vision in one eye as mine has grown into my eye socket and is very near my optic nerve so that's getting zapped. 

    Gunk...soooo muuuuch guuunk! I can't wait to not have a blocked nose!!!

    I've had surgery but they couldn't remove it all and it's grown back because it took longer to start treatment because of my referral. Just glad to get going at last!

  • Oh bless you, fingers crossed this works for you. I've read great things about proton beam therapy. I'm starting radiotherapy Thursday to hopefully get wider clear margins as mine came back so is aggressive. Sorry to hear about your eye, that sucks, and hope your nose cleared, it's awful when its blocked. Mine is now working overtime and as the hole they created is bigger  I have great fun throwing up the *** that goes up and down my throat. Good luck with your treatment, let me know how you get on