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Anyone undergoing treatment for olfactory neuroblastoma?

Posted by imatthewi @imatthewi, Sep 30 8:22pm

I was diagnosed with esthesioneuroblastoma (a/k/a olfactory neuroblastoma, "a rare neuroendocrine tumor that develops from olfactory nerve cells and smell sensing tissue high in the nasal cavity") in June 2026 following MRIs and biopsies. I had a tumor removed from my sinuses, skull base and dura (5.5+ hour surgery) on July 27, 2026. I started 6 weeks of daily (M-F) radiation on Sept. 21, 2026.

Is anyone else in the head and neck cancer support group currently undergoing treatment for olfactory neuroblastoma? Or has anyone still in the support group had surgery and radiation treatments for olfactory neuroblastoma in the past few years? At this point I’m mostly interested in discussing what to expect for radiation side effects, along with general info and support, Thanks much.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Profile picture for William Olsen, Volunteer Mentor
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Oct 1 12:10pm

Hello @imatthewi Welcome to our head and neck cancer group. We don't let just anyone in, only important folks like you.
I believe there may be a few patients who are familiar with esthesioneuroblastoma, the treatment as well. Hopefully their eyes will find this. In the meantime, the general thoughts I have would advise Proton radiation as opposed to Photon, in that Proton is precise and less damaging to surrounding tissue. The downside is that Proton facilities are not near as prevalent as Photon, and they can often cost more primarily due to the size of the machine and the space they occupy. You may have to travel to a Proton location. It certainly is worth enquiring about. Side effects will likely be fewer.
As for general information, you could check with a large cancer facility for information. The doctors at Mayo clinic are familiar with your condition. I for one would make sure that the people you are working with have experience with this because after all, it is your life in jeopardy, not theirs.

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Profile picture for lbushek6881
lbushek6881 | @lbushek6881 | Oct 4 1:15pm

Hi @imatthewi, welcome. I'll first start by saying I'm sorry you are here, but you've found a great resource in this group. While many posts are not geared towards Esthesioneuroblastoma, many experiences, symptoms, and tips can be researched here and will be similar to what you need. Definitely read through posts and do your research. Also, keep in mind during your treatment that each week may be different, what works this week, may not apply to next, and what works for someone else may not work for you. Whatever the case, do not give up and please continue to reach out if you're feeling frustrated.
Treatments may have changed by now, but I doubt by much since this is a very rare form of cancer. My husband had endoscopic surgery at NYU Perlmutter March 2024 which removed tumor and part of his skull base and also had his right-side lymph nodes dissected/removed at the same time as his had metastasized. A month later he went into 35 rounds of radiation for both areas combined with 6/7 rounds of chemo 1/wk (Cisplatin).

His first 2 weeks of radiation & chemo went great, no change in anything. The 3rd week is when he lost his sense of taste and throat and mouth began to get sore (some symptoms were from his chemo and his neck radiation) hopefully you will not experience as much if you are not treating neck/throat or getting chemo. For the sinus area, before each radiation treatment be sure to make sure the area is clean and you have put NOTHING on your face until after your radiation, you do not want any other substances being radiated on your face as it can burn more and who knows the aftereffects of those chemicals. He was given a cream (Siler Sulfadiazine and/or Mometasone Furoate) from his doctor to apply immediately after radiation, if you do not have this you can use Aquaphor, try to put it on before you leave the office. That was the main thing he did for that area. If your mouth/throat become sore, we saw a tip in this group to bring an ice pop or ice in a cooler bag and he would suck on that immediately after, I mean the minute you walk out of radiation, use it, if he tried it 30 mins afterwards it did not help at all. This was his "flow" every day for radiation and it helped tremendously. I also suggest buying a silk or satin pillowcase, it helps with the skin irritation for sleep when you get to the end of your treatments. If you do experience more soreness in your mouth or throat, make sure to find non-alcohol mouth washes, your doctor may prescribe you a magic mouthwash. I have included pics on two products the doctor's made him use. The Healios supplement was his favorite for taste and soothing his mouth/throat. He also experienced a lot of brain fog, which gets better after a while.

After his treatments, he has had to use the Neil Med Saline rinses, it is a regular thing for him at least 3x a day and he will have to do it for the rest of his life. He used this before having cancer because his sinuses have been terrible his whole life, so he was pretty used to it. I also suggest grabbing a Gua Sha facial tool (Amazon for $15) and look up how to use it for lymphedema if it becomes an issue, he uses this every day too as his face gets "full" since his lymphs do not drain effectively anymore.

Also, please speak to your doctor about no flying and no swimming/submerging into unknown water if you no longer have part of your skull base as things can get in there and your brain will have no protection. This is for a couple years as your full healing will take up to 2 yrs. He is at his 2 yr mark and we will get his next scan at the end of Oct. We have been watching an active lymph node (non-cancerous) but he has been in remission so far and he is doing we better than we all thought he would. It is a slow recovery, please be patient with yourself.

Curious if you were offered chemo, as it has been studied and it does significantly help with reoccurrence and longevity, info can be found in many medical papers, NIH and others. We didn't want him to do it but after looking at the numbers we felt it was safer for him to do it than not.

I know there's a lot here and some may not apply to you (I hope it doesn't). I'll write back if I can think of anything else. Sending good thoughts your way.
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1 reply
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | 6 days ago
In reply to @lbushek6881 "Hi @imatthewi, welcome. I'll first start by saying I'm sorry you are here, but you've found..." + (show)
Profile picture for lbushek6881 @lbushek6881

Hi @imatthewi, welcome. I'll first start by saying I'm sorry you are here, but you've found a great resource in this group. While many posts are not geared towards Esthesioneuroblastoma, many experiences, symptoms, and tips can be researched here and will be similar to what you need. Definitely read through posts and do your research. Also, keep in mind during your treatment that each week may be different, what works this week, may not apply to next, and what works for someone else may not work for you. Whatever the case, do not give up and please continue to reach out if you're feeling frustrated.
Treatments may have changed by now, but I doubt by much since this is a very rare form of cancer. My husband had endoscopic surgery at NYU Perlmutter March 2024 which removed tumor and part of his skull base and also had his right-side lymph nodes dissected/removed at the same time as his had metastasized. A month later he went into 35 rounds of radiation for both areas combined with 6/7 rounds of chemo 1/wk (Cisplatin).

His first 2 weeks of radiation & chemo went great, no change in anything. The 3rd week is when he lost his sense of taste and throat and mouth began to get sore (some symptoms were from his chemo and his neck radiation) hopefully you will not experience as much if you are not treating neck/throat or getting chemo. For the sinus area, before each radiation treatment be sure to make sure the area is clean and you have put NOTHING on your face until after your radiation, you do not want any other substances being radiated on your face as it can burn more and who knows the aftereffects of those chemicals. He was given a cream (Siler Sulfadiazine and/or Mometasone Furoate) from his doctor to apply immediately after radiation, if you do not have this you can use Aquaphor, try to put it on before you leave the office. That was the main thing he did for that area. If your mouth/throat become sore, we saw a tip in this group to bring an ice pop or ice in a cooler bag and he would suck on that immediately after, I mean the minute you walk out of radiation, use it, if he tried it 30 mins afterwards it did not help at all. This was his "flow" every day for radiation and it helped tremendously. I also suggest buying a silk or satin pillowcase, it helps with the skin irritation for sleep when you get to the end of your treatments. If you do experience more soreness in your mouth or throat, make sure to find non-alcohol mouth washes, your doctor may prescribe you a magic mouthwash. I have included pics on two products the doctor's made him use. The Healios supplement was his favorite for taste and soothing his mouth/throat. He also experienced a lot of brain fog, which gets better after a while.

After his treatments, he has had to use the Neil Med Saline rinses, it is a regular thing for him at least 3x a day and he will have to do it for the rest of his life. He used this before having cancer because his sinuses have been terrible his whole life, so he was pretty used to it. I also suggest grabbing a Gua Sha facial tool (Amazon for $15) and look up how to use it for lymphedema if it becomes an issue, he uses this every day too as his face gets "full" since his lymphs do not drain effectively anymore.

Also, please speak to your doctor about no flying and no swimming/submerging into unknown water if you no longer have part of your skull base as things can get in there and your brain will have no protection. This is for a couple years as your full healing will take up to 2 yrs. He is at his 2 yr mark and we will get his next scan at the end of Oct. We have been watching an active lymph node (non-cancerous) but he has been in remission so far and he is doing we better than we all thought he would. It is a slow recovery, please be patient with yourself.

Curious if you were offered chemo, as it has been studied and it does significantly help with reoccurrence and longevity, info can be found in many medical papers, NIH and others. We didn't want him to do it but after looking at the numbers we felt it was safer for him to do it than not.

I know there's a lot here and some may not apply to you (I hope it doesn't). I'll write back if I can think of anything else. Sending good thoughts your way.

Jump to this post

@imatthewi, I add my welcome and hope you saw the helpful post from @lbushek6881. I'm also going to bring @k1e2n3n4e5t6h7 @nathdarzac into the conversation.

See these related discussions:
- Esthesioneuroblastoma https://connect.mayoclinic.org/discussion/esthesioneuroblastoma/
- Any experience with treatment for Esthesioneuroblastoma?https://connect.mayoclinic.org/discussion/any-experience-with-treatment-for-esthesioneuroblastoma/

Matthew, how are your radiation treatments going so far? Do you have far to travel for daily treatment?

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