Hi Silly
Iwas diagnosed with cancer of the nose last May + in July had my nose reemoved I had 2 more operations to get clear margins around edges Iwas in hospital 9 wks Then followed 6 chemo treatments + 33 radiotherapy Since then i have had a prosthetic nose fitted Its not easy but im getting there Still learning to use this site not greatly computer literate + im a one finger typist too
It sounds like you had a different cancer to mine which is adenoid cystic carcinoma. ACC is very rare but from what I've read any nose cancer is rare. I had surgery and radiation last year. The hardest thing was and still is changed appearance .Is that true for you? I am 60 and living with looking older was enough without this. My eye bothers me more because people notice straight away and sometimes ask what's wrong with it. I don't mind them asking but I do mind that it looks weird. My nose is not the same on one side now.
How do you find your new nose? Are you coping ok?
I know that this sounds as though I am only concerned with my looks .Of course I am not.I am ever aware that although they seemed to have killed off the residual with radiation this cancer always returns ,usually metastesising in the lungs,if not recurring locally.
Also there are side effects like nasal swelling and crusting in the nasal cavity and nerve pain .I can live with those .We all have to live with whatever our cancer did to us.
I hope you get what I am trying to say .I also hope you are going ok.Despite my little whinge I am going ok most of the time.I know others are worse off than me.
I look forward to hearing from you.
Hi Silly
Thanks for your reply Sorry for the delay but i couldnt find my way back into this bit My daughter helped me
We are a similar age I am 58 + know exacly what you mean by different appearance being a challenge I look different + even though the prosthetic is good it is still hard going out in public Kids particularly stare a lot + though i try not to let it upset me it does a bit My 3 grandchildren are getting used to me now
Dear Lynette,
sounds like a difficult time-3 ops to remove the tumour.
I had one in February to remove a large "polyp" in my nose, but it turned out to be cancer.Next scans and tests and biopsies to check the spread,then the final op and radiation as the doctor couldn't get a clear margin behind eye sac .In December an MRI showed no cancer. I have my next MRI in 5 weeks.
What kind of cancer is yours?How are you coping?
I
I just found the rest of your reply. I was a retired primary teacher but before my surgery was doing relief work but didn't and still don't feel comfortable about facing young children as I don't feel that I look normal. Friends and family and the doctors say it's not that bad but even adults that I've just met have asked me about it so I know kids would,some would.
My grandchildren are 15,13, 2 and 5 months.The older 2 accepted it and the 2 year old was only one so can't remember anything different and the baby wasn't even born. I have a 6 month old grandaughter in Sydney also. I live on the Gold Coast.
I look forward to hearing from you in the future .
Hi Silly
I had a C T scan a few weeks ago on my head and it showed no cancer Then on Thur i had a P E T scan on my whole body so that will show up any nasties anywhere The main reason for scan was for plastic surgeons to get a 3 D image of my jaw as they want to reconstruct my gums + rooof of my mouth using bone from my hip I dontt think i will have it done as i wouldnt have any teeth for a year Anyway i go back to see them in July so i will worry about it then when i talk to them At the moment i have what they call an obturator which is a denture that also fits into the hole in the roof of my mouth This makes it hard to eat + i can only manage soft stuff I also have a P E G feeding tube into my stomach + do 3 or 4 feeds a day
My grandchildren are 11 8 + 6 I live in Victoria
Think about it carefully before making a decision .Talk to others who have been through this. If you like I can give you other sites to use .I have not had this but know others have.If you ask here people can tell you of their experiences .
At least you have a bit of time to think.If you have it done what are the benefits regarding eating after 12 months?
I hope you talk to family and/or friends as well.
Taik soon.I must get ready for bingo.
Hi Silly
Thanks for the advice Yes i would like to hear from people who have had this done if its not too much trouble There is a lot to think about + weigh up good + bad Hope your week is going well
Things are all ok here. Sorry I can't help you with info. Another site to try is Inspire .Make sure it's community health as there are business sites with a similar name.Please don't think I'm saying it's better. I'm just trying to give you an added help.
Let me know how you find it ,if you try it.
There is also the Rare Cancer Alliance as well.This may also apply to you .I do not know for sure.
