Nasal Cancer

Hi murphyslaw and welcome. It is a very rare tumour. Do a search in the group. Search function is at the top of the page. There are some threads there. You could post in one and maybe some of the folk are still looking in. If they are they will get a notification of your post and you’ll get a reply 

Good luck 

That is probably what my uncle had about 5 years ago.  He had a tumour located at the top of his nasal passage which impacted on his eye.  I was his primary carer, but he had multiple issues going on and the tumour in the end was the least of his problems.   I can only give you second hand information, but happy to answer questions based on what I know.

I had a search for you. The reply from ReetsV looks particularly helpful

community.macmillan.org.uk/.../1533133

Hi Murphyslaw, sorry to hear that you are waiting to hear biopsy results. If it is ONB it is a rare cancer but you will find others who have experience of this. My son was diagnosed in Jan 2017, even more rare at the age of 15. 5 years ago this week we were In Florida for him to receive proton therapy. So far so good, the treatment worked. I’m off to visit him in his uni halls today.

What I learnt on this journey with my son is that every tumour is different, even if it’s an ONB, it will be different. Treatments change and improve all the time. The NHS are amazing! Beware of Google! It has its place but the info you find can be scary until you know what you’re dealing with. Write down all your questions and ask your team. Take someone with you to your appointments and even ask if you can record them (our team suggested this) as there’s a lot to take in and understand. 

If you do Facebook there a couple of closed groups you can join: olfactory neuroblastoma support and information and Esthesioneuroblastoma (alternative name) support. Mostly the same people posting in both as it’s an elite group! These are international groups and it appears that the USA leads on research for this rare cancer. 

Professionally I am a nurse (not oncology), as well as having traveled this journey as a mum, and am more than happy to offer support and answer questions. Hopefully, I can offer a balanced view! But our experience will be different as he was only 15 (paediatric patient) and it was 5 years ago. Keep messaging through this page, it pings me updates. 

Good luck. 

ReetsV

Thanks Reets. I was hoping you might still be around to help out. The news that your son is at university made me smile and my hairs all stand up. You must be a proud mum, eh? Xx

Thank you so much for your pointers. I'm only at the start of this journey, I'm so grateful for the info.

Thank you Dani

Thank you Peter. I am only at the start of this journey, having been initially mis-diagnosed. i will most certainly pick your brains as my journey continues.

Gary

Hi Iv just joined too. I have squamous cell carcinoma in my nose. What makes them think it’s the type you have without doing biopsy yet? I’d love to know. Iv already had surgery to remove tumours la week but going back for more in the next week or so. They are taking my nose off unfortunately. I’d like to hear what your journey is like too. This has been very long for me with being wrong key dgnosed for so long

Hi Septum and welcome from me.

There are a couple of lively threads going on nasal Cancer and a few members there have had a Rhinectomy. 

You could join them there.

Nasal Cancer

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