Terminal sinus cancer just diagnosed

Hi all

2 days ago after months of symptoms with my vision in one eye and nose bleeds I was finally diagnosed with a rare cancer called parasinal cancer which sadly has spread too much to be operable imcluding to the brain .  I am due to have chemo starting tommorow to reduce the symptoms 

at only 49 years old and in prior good health the shock of this diagnosis i am finding totally incomprehensible and impossible to deal with. All my wife and I have done is cry and cry the last 2 days and I can't fathom how anyone can possibly come to terms with this. I am a constant ball of anxiety which isn't helped by the corona virus meaning I am trapped indoors 

I just don't feel I can cope.  I want to have hope something can be done but can't see past the worst case scenario as it is not curable 

3 months ago I had a great life with my wife of 4 years and we had plans for the future.  Now everything feels horrific and getting out of bed in the morning seems pointless.  I am lost and scared and just feel unable to handle this at all

  • Stuartm

    i am so so sorry ... this is awful. Cancer is so cruel, so mean ... you are so young to have to deal with this ... any cancer diagnosis is awful but to be told it's 'inoperable' as well is just the saddest. I truly wish every cancer was operable. Hopefully the chemo will work for you though so while you're being treated there is still hope. I feel for your wife too ... my mother has been diagnosed with colon cancer at stage 4 probably also inoperable as well not sure yet but not holding out much hope as she is 72 and diabetic . We've cried a lot too and very worried and the virus is making these situations so much worse. 
    Don't  give up. I'm wishing  you Strength in these difficult times. Take care & be safe both of you.

  • Hi Stuart - your post is over a year old now so you have been on this journey for some time. I hope you are managing to live pain free and can still enjoy quality time with your loved ones... 

    I beleive my dad is on the cusp of being formally diagosed with sinus cancer. He's been experiencing symptoms for the last 8 weeks. Double vision, jaw and tooth pain, watering, bulging eye, severly blocked nose, headaches, dizziness, nose bleeds etc. Additionally, in last couple of weeks he has felt growths develop in his "other" nostral. He had an MRI last week in which they confirmed he has a "large growth" on the side he's been experiencing all the symptoms, he was then biopsied under general the next day. Today he's had a call to book a radioactive CT scan on Monday and he's due to meet the consultant again at the end of next week, presumably to discuss staging and treatment options. 

    My mum had cancer a couple of years ago so I'm fairly familiar with the way things unfold and. The events so far (and how quickly they are moving) lead me to assume he definitely has some form of sinus cancer which could be fairly aggressive / advanced given the development of symptoms over a short time period. 

    If you are well enough to reply, I would be really intersted to hear a bit about how you have found your treatment, what impact it has had physically and how you are genearlly feeling now. My hope for dad is that he maintains a reasonable qualify of life if the only option is to manage rather than treat his illness. 

    Wishing you all the best. 

    S

  • Hi S 

    really sorry to hear about your dad.  The symptoms sound very familiar to me.  Double vision then lots of nosebleeds and then tingly face and loss of all my sense of smell 

    when I was diagnosed on 27 March 2020 I was told it was incurable, inoperable and with an average lifespan of 12 months. Sinus cancer often not discovered until very late  my tumour was the size of an orange and had spread around my eye pushing it outwards and up towards my brain   I originally thought it was on my brain but subsequently found it it was just very near my brain 

    within a week I was having my first round of chemo  scary and very lonely due to COVID restrictions  I felt rough for a few days but then ok for the next 2 weeks before my next dose   I could tell immediately it was working as my nose cleared up and I was blowing out horrible stuff from my nose which must of been cancer dying  not nice but I felt it was a good sign 

    after just 1 rounds of chemo my oncologist scanned me and the results he said were remarkable  the tumour had shrunk massively so he wanted to try and get me on radiotherapy whilst the going was good

    1 more round of chemo and then I had 6 weeks of radio a total of 30 rounds   It was fine for about 3 weeks then I started to get the side affects I had been warned about   Total loss of all my sense of taste food became unbearable and I existed on nutritional supplements  my eye became very weepy and watery and i just felt extremely low and ended up on anti depressants  

    you have to wait a few months after radio before you get scanned which was a hard time as I had no idea how it had gone  then when scanned I was told it had gone really well and now there was just a little bit of tumour left  and I could have surgery

     Unfortunately there was no room to get a margin around it which meant it would just be palliative to give me longer  I had surgery on 29 December and then saw my surgeon a few weeks later 

    Then I got the unbelievably great news to the amazement of my surgeon all the samples around my tumour came back clear of cancerous cells and was told  I am currently clear of cancer !!!!

     This is from stage 4 no hope. Miracles do happen

     I have been warned it can easily come back and am now scanned regularly. I've been left with hardly any vision in my right eye and need an op to sort out a damaged tear duct. I have no sense of smell and my hearing has been damaged by the chemo and I need hearing aids for noisy places 

    overall though I'm supposed to be dead by now and I'm back cycling and living life as much as I can with covid 

    what I would say to your dad is DO NOT READ GOOGLE !!

    it scares you to death and does you no good.  Listen to your medical team and go with them and trust them 

    really hope he has the same results as me 

     

    Stu 

  • Hi Stuart - thank you so much for your reply and I am so glad to hear you doing so well! It is really reassuring to hear that things might be treatable, even at an advanced stage, without some of the horrendous looking surgeries I have seen on google (don't worry, I've told my dad not to look!). 

    My mum had chemo, radiation and massive surgery to treat her cancer (and she's now fitter than ever), but her surgry was via her back so no one can see the evidence. Really hoping drugs and radiation are the way forwards for Dad... 

    Best of luck with your continued recovery. 

    S

  • Those google videos of surgery sent me under but I actually had endoscopic surgery which goes up through the nose and I have no visible scars. It's all internal.  Everyone is different so there's no point looking online. 
     

    best of luck for your dad 

  • Hi Stu

    Wow... what great news... Miracles do happen!

  • How are you getting on stu, I also had this awful disease and lucky got all clear last month