Olfactory Neuroblastoma stage 2

Hi Alex. 

This is a very rare tumour and there are few threads on it I'm afraid. You could put it into a search at the top in the hope that some of the folk are still looking in.

Good luck with the surgery

Hi Alex, im afraid im like Dani and do not know anything about this type of cancer, i think all these types of cancer are scary or sound scary, when i had jaw reconstruction it sounded so complicated with a lot of ifs and buts but once things are explained and start to take place it becomes clearer and less frightening and these surgeons are very experienced in this sort of work. I wish you all the very best in your treatment, feel free to pop in if you want a chat or reassurance. Take care .

                                                                                                   Chris 

Thankyou Beesuit

Thankyou Chris

Good luck Alex for tomorrow 

Hi Alex, sorry to hear about your diagnosis. This definitely a rare cancer. My son was diagnosed 4 years ago this month. He had chemo, surgery and proton. He was 25 at diagnosis, he will be 20 in April. Doing really well.

There were some threads on here but the layout seems to have changed. 

If you want to ask any questions please do. I will try to answer.

Good luck.

Hi Reetsv,

It is very rare, 1 in every 2 million people, so I believe.I'm so please that your son is doing well, well done!

Can I ask what stage his cancer was, mine is stage 2, how was the radiotherapy for him, I'm healing well after my operation and waiting to hear when I'll be having radiotherapy.

Thankyou 

Alex

Hi Alex, his team were very reluctant to give us a stage. However, most likely a 3-4. He had local spread to lymph glands. 
Good to hear you are doing well after surgery. Did you have a full on craniotomy or was it laparoscopic? Sam had both. He also had lymph glands removed. He made a good recovery and within 6 weeks we flew to Florida for him to get proton beam therapy. His proton started 3 weeks after arriving so around the 9-10 weeks post surgery time frame. 
Sam was NED after surgery. Proton was belt and braces to get into tumour beds. He had facial and neck beams.
Proton was tough for him. Being away from home made it worse. I can be more specific if you wish. 
30 days proton. Every week day for 6 weeks. 
But he is great now (touch wood). Very active, going to uni in Sept. 

I hope this helps?

Retts V

Hi ReetsV

Bless him, he certainly went through it at such a young age too, but he sounds so incredibly brave and strong because he did it and he is doing so well. 

I had the same, Bifrontal Craniotomy endoscopic excision and repair with pericranial graft and nasal flap. 7 hour operation and it went well but have a long healing process that I'm doing now 5 weeks post op.

It was very scary times but we somehow find our inner strength and for me determination.

I don't think I'm having Proton, I think they make a face mask and I will have 6 weeks of Radiotherapy everyday. How was the side effects for him?, I hope you don't mind me asking, it's very comforting to be in contact with someone who had this rare cancer and he is an inspiration, being away from home too. Well done!

Morning Alex, I hope you’re feeling well today? 

I don’t mind answering questions at all. As you say it’s so rare that any info is amazing.

Do you do Facebook at all? There are two groups: EsthesioneuroBlastoma (ENB) support and Olfactory Neuroblastoma support and information. Both groups have a diverse following that offer lots of advice and discussion. I do find that a number of the members are from the states though. There is an international teams conference on 27 Feb, link is on the ENB group page. Might be interesting. I’m going to try to join.

most of Sams side effects from proton were due to the beams to his neck. He struggled with saliva production, pain, eating and drinking. He also had quite bad skin burns. We were warned about all of this beforehand. With regard to the beams to his face these were less. Skin burns at the time. The monobrow he had before treatment never returned and the hair on his top lip is sparse. Soon after proton finished he had swollen eyes that lasted a few months but eventually went away and never returned. Sam was very fatigued during the proton, however, when we returned home he did go straight back to school on a part time basis. His sleep pattern is irregular but that might be due to a number of things. Being a teenager being one of them! He does need to nap during the day at times but mostly keeps up with his peers. 

Sam is 3.5 years out of proton now and we are seeing some late effects. Again some due to the radiation to his neck. He has just started thyroxine due to damage to his thyroid gland. He has also been diagnosed with cataracts in both eyes. Both very small, being watched closely. They don’t currently affect his sight. The ophthalmologists are not concerned and feel that they can be easily treated when/if the need arises.

Memory doesn’t appear to be an issue. I’ve heard it does for some. Sam delayed uni for two years as he had missed so much school. Now that he can attend regularly he is achieving well. He’s going to do a professional policing BSc in Sept which shows his level of fitness and achievement.

There was an issue with getting Sams driving licence when he turned 17. DVLA wouldn’t issue until 2 years post treatment. He should now reapply yearly, however, it doesn’t seem to be such an issue now that we have COVID around!

Im guessing that you can’t smell after your surgery? Sam can’t but it’s never really bothered him. There is a website, Fifth Sense, who give all sorts of info on working around anosmia. It’s interesting and informative.

Please bear in mind that all of the above relates to proton. I have no idea how the side effects relate to radiotherapy. Also, Sam was young and fit (sorry I don’t know your age and fitness level) and this may have had an impact on his recovery.

My advice would be to stay positive. Your family will need to massively support you in this. I made Sam keep as normal a routine as possible taking into account what was going on. We argued like crazy but I’m sure it helped! We were looking forward all the time to what he/we could do. 

Apart from the proton in Florida Sam was treated in Nottingham. I did speak to a few people on this site that were UK based and had radiotherapy. So there is some expertise in the U.K. 

Ask lots of questions. Record the answers for when you reflect on your appointments. 

I hope this helps. Good luck.