Olfactory Neuroblastoma Treatment

TaraKelly
TaraKelly Member Posts: 1
in Head and Neck Cancer #1

Hello,

I was diganosed with Esthesioneuroblastoma (Olfactory Neuroblastoma) on August 15, 2017.  I am still learning about it daily.  I went in for a full resection of the tumor which had eaten through my cranial wall into my brain cavity on August 31, 2017.  I will be six weeks healed and the craniel patch estabilshed this coming thursday.  I am awaiting my post operative MRI and PET scans results from last thursday, but my pathology from the surgery came back with clean margins and low agression, calling it a stage 2.  I will begin proton radioation therapy next Monday.

Here is my question, I was thrown for a loop last week when meeting with an oncologist (just in case the MRI showed hot spots) and  he suggested also doing chemo simaltaniously with radiation!!! I said no at this point but will revisit of my MRI & PET come back concerning.  Has anyone out there with this cancer had Chemo Post full resection?? All I have read was Chemo Pre Surgery or No surgery and Chemo plus Radistion.

I am curious as to how others have been traeted and your success rate.

Thank you kindly,

 

TaraSmile

Comments

  • nikolaf
    nikolaf Member Posts: 50
    edited October 2017 #2
    not the same cancer but.....

    My husband has Nasal Cavity SCC stage IV.  He had a full resection/ subtotal rhinectomy.

    He is having radiation with Cisplatain to boost the effectiveness of the radiation (IMRT 60x30).  

    I think if they are recommending it, it is likely for similar reasons.  Given this is your brain, you might want to go with what the experts say.  You can try looking into RECENT (say post 2010) peer-reviewed literature on your cancer to see if this is a typical course of action.  I did, and found it was for his cancer.  His was up against the cribriform (bone below olfactory bulb) and his doctors pointed to the proximity to his brain as the main reason.  They said even though they felt there were clear magins, it wasn't worth the risk of relapse if miscoscopic disease was left behind (that they can not see on scans, pathology, etc.).


  • susanherz
    susanherz Member Posts: 6 Member
    #3
    Olfactory Neuroblastoma Treatment

    Hi Tara,

     

    Following surgery to remove my tumor, I had 30 radiation treatments (which I completed in September of 2017). I was told that protocol for esthesioneuroblastoma is surgery to remove tumor followed by radiation. I'm not sure if that would be different depending on where the tumor was, how large, etc. I wish I had more information for you.

     

     

  • Viking18
    Viking18 Member Posts: 5
    #4
    Who says chemo?

    Which specialists and facility advocate chemotherapy?

    Most skull base surgeons say resection then healing then radiation.  Proton beam or IMRT are the main approaches.

    Curious to see if any recent papers (post 2012) say chemo is worthwhile as adjuvant therapy.

     

  • nikolaf
    nikolaf Member Posts: 50
    edited November 2017 #5
    Viking18 said:

    Who says chemo?

    Which specialists and facility advocate chemotherapy?

    Most skull base surgeons say resection then healing then radiation.  Proton beam or IMRT are the main approaches.

    Curious to see if any recent papers (post 2012) say chemo is worthwhile as adjuvant therapy.

     

    I have one but it says so far

    I have one but it says so far only evidence in SCC of various head and neck cancers not enough evidence for others.  They say the n is too low to know/ more research needs to be done.

  • nikolaf
    nikolaf Member Posts: 50
    #6
    It is from this 2015 journal

    It is from this 2015 journal article.

     

    Definitive and adjuvant radiotherapy for sinonasal squamous cell carcinomas: a single institutional experience

    Sumerya Duru Birgi, Mark Teo, Karen E. Dyker, Mehmet Sen and Robin J D Prestwich*

     

    it does address ‘other head and neck cancers’ and adjunctive Chemotherapy.

                                          

  • TDBoston
    TDBoston Member Posts: 1
    #7
    Esthesioneuroblastoma - radiation and chemotherapy

    Hi Tara,

    You have probably already made your decision, but this may help you or others.

    I was diagnosed with ENB in March 2017.  Like yours it had progresssed into the cranium (Kadish C), which required required surgical resection.  I had surgery in May 2017 where the majority of work was done endoscopically, but the repair to the cranium (bilateral removal of the cribiform plate and olfactory bulbs) required a cranial facial resection and a pericranial flap.  I had negative (good) margins.  6 weeks after surgery I started 8 weeks of proton beam therapy and did chemotheraoy simultaneously.  I had two course of of chemotherapy over two months - cisplatin/etoposide.

    Proton Beam was a no-brainer.  This appears to be standard protocol especially for more advanced tomors.

    The chemotherapy decision was based on my tumor grading (Hyams 3).  From your text, I'm assuming you had no lymph node involvement and therefore would also be a Kadish 3.  Also assuming if they noted that your tumor was non-agressive and a stage 2, that it was Hyams grade 2.  ENB Hyams grades 1 and 2 tend to be indolent (slow growing) and localized with very good prognoses.  For a Kadish 3 and Hyams 1 or 2 tumor, standard protocal, from every thing I have read, is surgical resection and radition treatment.  Radiation is just to assure margins. 

    Post surgical or post radiation swelling can also look like possible tumor growth. You just have to wait for the next MRI.

    This is not meant to be medical advice, but sharing my story and what I have learned about ENB.  Hopefully you are doing well.  I'm through my 2nd follow-up MRI and evrything looks good.

  • MissBlueEyes4Life
    MissBlueEyes4Life Member Posts: 35
    #8
    A little late to this thread

    A little late to this thread but I was diagnosed with the same in february. I had a tumor in my nose that also poked through to my frontal lobe and also the cancer spread to my lymph nodes. Mine was considered kaddish D or stage 4. I had a neck dissection then 2 weeks later they opened me ear to ear and removed the tumor. Then I had 35 rounds of radiation whilst getting 4 rounds of chemo.  Radiation helps enhance the effect of the chemo so it is definitely worth doing. Yes, the side effects of radiation are horrible but you need to give yourself the best chance to win this fight. Been a few months since you posted I hope you decided to go with it. 

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