Olfactory Neuroblastoma

I was diagnosed with olfactory neuroblastoma in June 2008.  I am a 21 year old female. I have recieved chemotherapy and radiotherapy treatment.  Please feel free to ask me anything you like or are unsure about, and if i can help im more than happy to reply.

Thank you very much for replying to my post as I thought I wouldn't get any replies as this type of tumour appears quite rare. 

We are off to see the consultant tomorrow and hopefully we will have a bit more information then.  Can I ask whether you had surgery as my research has said that the normal course of treatment is surgery and then radiotherapy?  Do you mind me asking what you have been told by your consultant is the long term prognosis for someone with this condition?

Again, thank you for taking the time to reply to my post - greatly appreciated!

You honestly dont have to thank me for replying, in these circumstances its good to have someone to talk to who has experiences to share and give you a patients view.

I personally got diagnosed when my tumour was extremely developed and aggresive.  I was misdiagnosed by 8 different people with allsorts of things from stress to sinusitis, and it wasnt until i started to lose my sight in my left eye it got investigated further. My tumour had grown that large by the time it was discovered, it had moved my eye socket outwards and was pressing on my brain.  I was also left with spots of tumours on my leg and spine.  My consultant told me the seriousness of the tumour, and as you can see from the statistics on this site it is an extremely rare tumour, especially in young people and females.

As your consultant will tell you tomorrow, all people are different and react to treatments differently.  My consultant said it was too dangerous to operate on my tumour because of where mine is situated and the way it has grown.  Your relative may be advised to have surgery depending on their tumour state.  So my consultant said the best way forward was to use a combination of chemotherapy and radiotherapy.  I first had 8 'cycles' of chemotherapy. Each cycle i would be hospitalised for 4/5 days then have 17 days at home.  After 2 cycles of this treatment i was told my tumour had shrunk by 70 percent.  After the 8 cycles of chemo i had radiotherapy. 

My consultant has said that my tumour will not be able to be removed, so i would not be free from my tumour, however they were happy to say that they have stopped it growing and it is in 'respite' so to say.  Basically i still have the tumour but it is currently not active and not producing cancerous cells at present. The consultant cannot predict how the tumour will react in days and years to come, so unfortunately i do not have the long term prognosis for my condition.  As for the internet research i did when i was diagnosed, there are hardly any sources of information, and the sources i found gave me the impression i was talking a walk into the unknown because there is so little knowledge or research on this condition. Im sure your consultant will be able to give you a bit more clarity on your situation tomorrow.  Hope this has been helpful, and anything else you want to know just give me a message.

Hello,  I was diagnosed with an  olfactory neuroblastoma in March 2008. You are the first person I have been able to contact with the same condition. I was wondering how you are  now? I have also had chemotherapy, radiotherapy and surgery, and am back at work now and doing quite well. However i sometimes feel isolated because i am not  sure anyone can underdstand my experience. 

Hi. Chris Marler here.  I was just diagnosed with Olfactory Neuroblastoma at, apparently, stage 2.  More MRI's are needed.  I see that your tumor was not removed, however, do you know of anyone who has had the surgery?

Apparently I am to have surgery, so I would like to know a bit more.

Thanks,

Chris

Hi Chris

I've just seen your post and thought I'd respond.  You are the first person I have seen on this site with Olfactory Neuroblastoma since I was diagnosed with it in June 2010. 

I had an operation to remove the tumour endescopically in July 2010 and spent 19 days in hospital (this was longer than anticipated as I had a couple of post operative complications).  The operation was a success and I went on to have 6 weeks of daily radiotherapy using RapidArc technology.  I have had good scan results for the last 2 years and feel really well. 

You will find that there's is not much information on this type of tumour, as it's very rare, but I am happy to talk to you and answer any questions you have.  I couldn't find anyone to talk to when I was diagnosed so I know just what you are going through.

Good luck with your MRI's, Chris.

Fiona

Hi Chris

I completely understand what you are going through.  In the last 2 years you are the first person in the UK I have found with this extremely rare tumour.  There is some great support on the American Cancer website forums at www.csn.cancer.org, however it's not the same.  I know you must be feeling completely isolated with very little information.

Where in the UK do you live?  If you would like to message me privately, then please do. 

Although most of my tumour was removed endescopically I did have an incision in the side of my nose as my tumour was very close to my eye and they had to remove some of it that way.  The surgeons also made an incision on the top of my scalp so that they could go into the lining of my brain to check that the tumour had not spread there.  They didn't actually go into the scull or remove any part of it.  The scar on my face is barely noticable and obviously the one on my head is hidden by my hair.  2 years down the line I don't even notice the scar on my face now and the one on my head just tingles ocassionally.  I also had a tracheostomy to assist with my breathing during the operation and that was removed after a week - a week with no talking - bliss for my husband!! 

Obviously all tumours are different so your treatment might vary a bit from mine.  My operation took 8 hours and I had 2 surgeons; an ENT and a brain surgeon.  I was in hospital for 19 days, which was a week longer than anticipated as I had a couple of complications - a serious infection and then a hemorrhage a week after my op when they removed the packing from my nose. The hemorrhage was a one in a million chance and not something that the medical team expected at all - just my bad luck.  I don't want to scare you at all but want to be honest. 

I could write all day but this is probably enough for you just now.  One thing I found that helped me was just to take it one stage at a time and deal with one thing at a time.  Get your scan results and all the information and options from your surgeon that you can.  Accept that you are going to have radiotherapy but don't concentrate on that until nearer the time (mine wasn't nearly as bad as I expected and we can talk about that later on in another message).

At the moment your head will be completely filled with all sorts of stuff and hundreds of questions so please feel free to ask me anything - however silly you might think it is - as I've been there myself.  I can tell you that 2 years down the line I feel great and hopefully you will too.

Best wishes

Fiona

HI Again.  Thanks for your input.  I'm hoping that my surgery will only be through my nose.  I am a bit vain. lol.  I do indeed feel very isolated, scared and overwhelmed.  Last night I started thinking about the expenses that I will have to pay.  I mean, I have health insurance, but my copays are high.  I had to pay $250 for the polyp removal alone not to mention $50 a pop for office visits.  I know theirs going to be ALOT of doctor visits.  Worries me to no end, but I came to realize that it could have been way worse.  So, I'll be counting my lucky stars for now.. LOL

I'm in the US, California.  I'm currently looking into financial assistance thru my medical plan.  As per their scale, I don't qualify but I'm hoping that I can qualify for lower copays.  Crossing my fingers.

Thanks again.

Chris