Olfactory neuroblastoma - how often do you have scans

UKfriend

Hi

I am a 2 year survivor of ENB living in the UK. I haven't found anyone in the UK with this very rare tumor on any online forums, since my diagnosis, so I often check into your great site in the USA. I have found it to be really helpful and everyone is so friendly.

I wanted to check how often you are offered MRI scans post treatment. I had surgery then radiotherapy 2 years ago and now have annual scans but sometimes feel I should be having them more often. It would be interesting to hear what happens in the USA.

Many thanks

Fiona

longtermsurvivor

Hi Fiona
There are certainly people who post on this board that are in follow up for olfactory neuroblastoma. I'm not sure any of them post every day. If not, it may take a few days for them to log on and find your post. Don't get discouraged if you don't get answers right away. Just keep checking back, because eventually you will get responses from those you are trying to communicate with. Welcome to the board. I just returned from a visit to London. Really love that town, but couldn't afford to live there.....

Pat

Hen65

longtermsurvivor said:

Hi Fiona
There are certainly people who post on this board that are in follow up for olfactory neuroblastoma. I'm not sure any of them post every day. If not, it may take a few days for them to log on and find your post. Don't get discouraged if you don't get answers right away. Just keep checking back, because eventually you will get responses from those you are trying to communicate with. Welcome to the board. I just returned from a visit to London. Really love that town, but couldn't afford to live there.....

Pat

Hi Fiona
Hello,

Well I can't answer your question but I was diagnosed with ENB in November 2011. Have had FESS surgery; 6 weeks of radiotherapy and weekly chemo. And Im in the UK!!! I'm awaiting my 3 monthly post treatment MRI this month. It would be good to speak to someone who has been through the same things; its very lonely at times; being a rarity is no comfort!

Helen

UKfriend

longtermsurvivor said:

Hi Fiona
There are certainly people who post on this board that are in follow up for olfactory neuroblastoma. I'm not sure any of them post every day. If not, it may take a few days for them to log on and find your post. Don't get discouraged if you don't get answers right away. Just keep checking back, because eventually you will get responses from those you are trying to communicate with. Welcome to the board. I just returned from a visit to London. Really love that town, but couldn't afford to live there.....

Pat

Thanks for the reply Pat,
Thanks for the reply Pat, I'll keep checking and hopefully someone will read my post. London is a great city but, you are right - you need a lot of money to live there. I live in Scotland where it's much cheaper (and colder!).

Thanks again & best wishes

Fiona

UKfriend

Hen65 said:

Hi Fiona
Hello,

Well I can't answer your question but I was diagnosed with ENB in November 2011. Have had FESS surgery; 6 weeks of radiotherapy and weekly chemo. And Im in the UK!!! I'm awaiting my 3 monthly post treatment MRI this month. It would be good to speak to someone who has been through the same things; its very lonely at times; being a rarity is no comfort!

Helen

Hi Helen
Wow, I can't
Hi Helen

Wow, I can't believe I've finally found someone in the UK - and on an American cancer website of all places!! Where in the UK do you live? I'm from Scotland - just outside Glasgow.

I would love to speak to you so I've added your name to my friends list and when you accept it we can have a private chat online, if you like. It would indeed be great to speak to someone who has dealt with this very rare cancer.

Best wishes.

Fiona