We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Olfactory Neuroblastoma

Rubydream
Posted by

Anyone here want to talk .?

I have been searching for years to find anyone in the UK, that has had or been affected by Olfactory neuroblastoma. I thought I was the only one!!!

Look forward to hearing from anyone

Health and happiness to all

Rubydream

Margaret853
Posted by

Hi Rubydream.

I seem to remember we have a couple of people in the group who have had Olfactory neuroblastoma so hopefully someone will come along to help you soon.

I don't think we're supposed to post specific details of groups from other organisations, but hopefully it's OK for me to say that I do know a well known social media website group exists for patients of this type of cancer.  I know a chap who belongs to it but I'm not sure if he's UK based or not.

Hope you manage to connect with someone.  Best wishes.  xx

"Life might not be the party we were expecting but while we are here we should dance."

MikeO
Posted by

Pleased to see you found the other thread we have on here about this condition Rubydream; a lot of it is about eighteen months old but it has been added to recently, hope you find it helpful.

 What is a Community Champion?

Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.

http://mike-o.blogspot.co.uk/

Veebs
Posted by

Hi Rubydream

I’ve just been told today that I have olfactory neuroblastoma. I had a polyp removed a couple of weeks ago but the biopsy report turned this up instead of it all just being clear. So I’m right at the beginning of this whole ‘journey’. 

I’m pleased to find this page, there’s some scary sounding  stories, but it’s good to find a little corner of the internet with other people who’ve had a similar experience. 

Love Veebs. 

Rubydream
Posted by

Hi Veebs

Sorry to hear about your diagnosis, I know it's scary time for you and you will be in shock.  I too had several operations beforehand but never expected this so I know exactly how your feeling. However can say its it long painfull journey I'm  16yrs on and still feel the effects daily. I'm more than will to tell you my story in detail if you wish? 

Take a few days to take the news in, ask your doctors questions, ask me or this group. 

If you want to speak privately we could exchange details later.

Best wishes 

Rubydream 

northmanc2017
Posted by

Perhaps a little late for you to see this but I haven't posted on here for quite some time (too busy).

I'm in the UK (North West), and I was diagnosed with Stage 4 olfactory neuroblastoma in February 2017.

I am now 27 months post-treatment with no residual or recurrent disease (last scan in September 2019).

I am quite happy to answer any questions you may have regarding diagnosis/treatment/recovery etc., though I would also refer you to my previous posts ;)

As you are probably already aware, this is a very rare tumour (fewer than 1 case per million) so we are essentially part of a special and select club - though (and I think this partially references Groucho Marx) I would never join a club which would have me as a member - but in this case, the choice wasn't exactly mine ;)

Squeegie
Posted by

Hello Ruby dream, 

I have recently been diagnosed with Olfactory Neuroblastoma in Feb 2020. It's been a steep learning curve as the cancer diagnosis was completely unexpected. I've had a surgery to remove the tumour on the 9 Mar 2020. And now it's onto decisions about further treatment. I would be keen share experiences, especially since it is so rare it is difficult to find people who are walking the same road. 

Give me a shout if you are still up for talking. 

Recently diagnosed Olfactory Neuroblastoma 
Squeegie
Posted by

Hi Veebs,

I'm still working out how this support group works as I just joined a few days ago.

I've also been recently diagnosed with Olfactory Neuroblastoma in Feb 2020. I'd be keen to share experiences. 

Recently diagnosed Olfactory Neuroblastoma 
Rubydream
Posted by

Hi Squeegie

More than willing to talkabout my experience. 

If you want to send me a email or contact me direct.

 Take care x

Squeegie
Posted by

Hi Rubydream,

I was wondering if you would be willing to share your journey (treatment... How things have gone since, etc). 

I'm trying to gain insight to find my own way forward. 

I tried to send you an email, but I couldn't quite get it to work. I'm new to this site. Would you be able to send me an email? Perhaps it could work that way. 

Cheers-

Recently diagnosed Olfactory Neuroblastoma