Nasal cancer

Hi, I have only just joined, every one has been amazing, didn't have my results but don't think by the replies that matters. People.on here just want to help, support and give advice. Xx 

Hi 

Thank you for your reply.  I’m hoping to find some good advice on how to cope with the diagnosis and about what others thought when they received their results.

Thanks again Tam

Trish xx

Hi WakeyLass

I am so sorry to hear about what you’re going through. It sounds really scary. You’re right about how writing it down helps. What’s even more helpful is meeting someone who’s been where you are now and can talk about how they got through it. 

It might help you to join our head and neck cancer group. Here is a link:

https://community.macmillan.org.uk/cancer_types/head-neck-cancer/

I wish you all the very best

Hi WakeyLass, I have just come across your post.  Like you I was diagnosed with the very rare nasal cavity cancer.  I had surgery in April, my septum was removed and cartilage from my ear used to replace it.  I did not have rRadiotherapy.  I see the MaxFax consultant every couple of months. I am so glad to have found another person with the same condition, who understands what it is like.  I would love to hear how you are getting on.  

Best wishes

Lyn

Hi Camellia1 thanks for your message.  It is a rare cancer as I couldn’t find anyone when I joined.  I am happy it all went well for you.   I had my operation in March this year but I ended up having most of my nose removed.  I had some radiotherapy to get any stray cells and got the all clear thankfully on the 5th August.  I am still waiting to get my prosthetic nose, which due to this Coronavirus, is taking longer than normal.

Trish x

Hi Trish, l am so pleased to hear that you have got the all clear last month.  It is such a horrible place to get cancer,  I had never heard of it before my diagnosis.  Mine started with a blocked right nostril that was a bit runny and bled now and then.  I had it for about 6 months before l googled the symptoms and went to my GP.  I was in total shock when iI was told that l had transitional cell carcinoma of the nasal cavity, a type of squamous cell cancer.  The tumour was large and my surgeon said that  I had the wrong cancer in the wrong place whatever that means.   What type of tumour did you have and did you have the same symptoms.?  I have suffered from anxiety and depression since diagnosis although I have very recently gone back to work.  The only good thing about this horrible virus is that wearing a mask hides the surgery!  Do you have a any idea how long it will be before you get the prothetic?  Anyway, l hope that we can support each other now.  Time for bed x

Lyn x

Hi Lyn,  yes mine was squamous cell carcinoma I must have been a bit further on than you as they couldn’t fix it as they did for you. I had never heard of it either. I was same blocked right nostril a bit crusty I would say which started to bleed now and again.  I went to my Drs last October and saw a locum who gave me antibiotics and said I had sinusitis.  They did no good so I went back the following week and saw my own Dr who said he was sending me to see ENT Consultant.  Then I had biopsies and scans.  I live in Suffolk but had to go to Norwich for my surgery.  To be fair the consultant tried to take as little as possible but unfortunately he had to take more in the end. The shielding and mask wearing has been a bonus for me although i do wear a dressing over my nose area when I go out.  I have only been to the hospital and dentist since March.  My other half developed a detached retina and his surgery was on the same day at Ipswich and I was at Norwich.  So it’s been a long road. I had a letter a couple of weeks regarding my new nose but didn’t  give me a date as yet,  I was very depressed and really didn’t want to talk to people who I knew apart from family and my best friend.  The depression and anxiety are the worst and take some moving on.  I still have why me days or why couldn’t it be somewhere you couldn’t see it.  It’s great to talk to someone who can appreciate what you have gone through.  I searched all over in the beginning but couldn’t find anyone only other head, neck and tongue.  There are people worse than we are but it’s hard to think that when your going through it.  The radiotherapy wasn’t too bad.  Worse bit was the mask you have to wear.  I had no side effects till 3 days before I finished.  Anyway I am nearly writing a novel.  We can definitely support each other from now on.  I accepted your friends request.. 

Goodnight sleep well,

 .Hi Trish, l am so happy to have found someone who is on the same journey as me. My treatment at  the hospital has been great up to the until today. I have been anxious because my nose has felt blocked on the left side and has been running like  tap.  My phone calls to the hospital today were so negative, as regards my concerns and the fact that l had no future appointment letter.  Eventually l was told that because of covid they had a different system, l didn’t say anything but l was treated at the height of covid promptly.  The woman l spoke to said that l was due to be seen in November, surgeon told me October, however she said October was fully booked !  I then left a message about my concerns.  Later today a female called me , asked why l was being treated at that particular  his pital, l thought, duh! because obviously Maxillary surgery is not performed at my local hospital, Dorchester.!  She said that that my surgeon was not available until next week and that they would contact me.  Asked for her name, but she just said it was the MaxFax dept. So angry to be held in limbo,  when l want reassurance,  l am going to try to get through to somebody on Monday.  My operation must  have cost the NHS thousands and now, I am hitting a brick wall trying to get a follow up promptly because of my new symptoms.  Sorry for my rant Trish but I know that head and neck cancers, can ofen recur, and l am worried about mine.  You have probably Googled our cancer, which is sometimes associated with work environment, smoking etc but I have never, knowingly , encountered these risks. I just wonder, where the Hell it came from!  I hope that your other half’s detached retina is ok now, what a worrying time you both had to endure.  My husband had an almost detached retina a number of years ago but all is ok.  I haven’t named the hospital where l had my surgery because l don’t think that it is allowed.  Next week l am having an initial phone appointment with ‘Steps to well being’a  mental health provider on the NHS. I will give it a go but l can’t see that it will stop me worrying the rest of my life  about nasal cancer.  I know all the sensible phrases, live in the day, you can’t change the past, and you don’t the future, but that is easier said than done, it’s easier if it’s a cancer that doesn’t change your appearance.  I bet your grandchildren lift up your spirits. I will let you know if l manage to get a face to face appointment with my MaxFax surgeon.  Keep on at your hospital about your prosthetic,  l have found that friends who have been a pain to the the NHS, unlike me, tend to get to the head of the queue! 

Lyn x

ps l am on Facebook if you would like to be friends.  But l hope that anybody who has our rare cancer can find support  from you and l on the Macmillan website.

Hi Trish, l find this website very difficult to navigate and l am not sure if you received my reply to your last message. Anyway hope  that you are well.

Lyn xx 

Hi Lyn, yes I got your first message.  You must be worried sick!  Apparently only men get our cancer or anyone who has worked in a dusty job.  I worked for a firm of Roofing contractors a few years ago and there was always loads of dust from when they were cutting up the tiles.  Plus my Aunt worked for a asbestos company and I used to spend a lot of time there.  I had a phone call from my dentist Friday morning saying she is struggling to make me some dentures. When you have the op I had they leave 2  stitches in place on your face where the end of your nose joins your face, if you know what I mean, so it holds your top in place.  I have had trouble with them all along. When I contacted the consultant he said they need to stay there and then another time he said they will eventually dissolve.  They are still here  I think it stops the dentist being able to make the top denture due to these stitches. So she said she was going to contact the hospital urgently as I need these fitted before my nose job.  So consequently I have felt really unhappy as I was looking forward to getting some teeth again,  I am going to contact PAL and see if they can help me to get something going. So I have decided I will give them a week and if I don’t hear anything I will need to start shouting at people.  I just feel like staying in bed all the time which is not good. Let me know if you manage to speak to someone at the hospital.

Try not to worry so much you will make yourself ill, I know it’s easy to say that but fingers crossed it won’t be anything except a stuffy nose.

No advance on the retina front as yet.  He has to go back on the 5th October.

Take care.

Trish x