Radiation Olfactory Neuroblastoma

I am hoping to get some information on radiation theropy.

My doctors have been very back and forth on whether or not I need radiation. I have a grade 2 tumour that was removed in April, my margins are all negative and it did not reach my brain. I have not had a PET scan, my dctors say it is not necessary. At my most recent appointment my doctor said I will be getting radiation because this type of cancer tends to come back in the lymph nodes, he said if it reaches the lymph nodes it then has access to the rest of my body. He also said if it did come back they might not be able to pick up on the cancer cells with MRIs CTs or PET scans until its too late.

On the other hand they tell me the side effects are very severe, I am 28 with a 1 year old son and am very worried about these side effects. If anyone could let me know how it went for them and some things I can expect I would really appreciate it. I am hoping to be able to care for my son while I get the radiation, also I live an hour away from the hopsital so I am hoping to be able to drive myself to and from appointments.

Thanks so much,



  • KP
    KP Member Posts: 6

    Hi Angie,

    That's great news about your margins!

    In regards to your questions -My husband is a two time survivor. For both cases he had radiation and I can tell you, from living through his experience, that you will be extremely tired at ~ week three. Depending on the location of treatment, sometimes you may or may not get radiation burns. First go around my husband got radiation burns inside his mouth making eating a challenge;however, they were also radiating his sinus area. Second go around was his neck and only surface neck burns which were not that bad.

    If you have family / friends to help during treatment, I would kindly suggest you enlist their help during this time both with helping to care for your child and driving. I think you'll need it.

    In regards to treatment and surveillance, it never hurts to get a second opinion. Most insurances pay for second opinions. When my husband and I were researching his options for second go around, we reached out to several doctors to determine the best course of action. One was at MD Anderson (unfortunately I don't remember the name), UVA Dr. Paul Levine, and University of Pitt Dr. Carl Snyderman. My husband had his surgeries (#2, #3, and #4) with Dr. Gary Gallia at Hopkins, who is awesome BTW and who we went with. Radiation at Hopkins was with an amazing group too (many thanks to Dr. Harry Quon). One of the recommendations from Dr. Quon was that in order to properly heal, you must get adequate sleep. They put him on large doses of gabapentin to help with ensuring adequate rest during his six weeks of radiation. It makes sense too because when you are sick, your response is to sleep in a lot of cases. 

    One follow-up suggestion is to make sure you go see a dentist to make sure your teeth and gums are okay prior to treatment. I vaguely remember my hubbie having to see a special dentist (endodontist maybe??) before starting radiation treatment when sinuses were radiated. Your radiation oncologist will best guide you with who to see prior to starting treatment.

    My thoughts are with you Angie. Stay strong; you can do this.





  • AngieR15
    AngieR15 Member Posts: 10


  • olivia46
    olivia46 Member Posts: 28
    Hi, Angie,

    Hi, Angie,

    I had surgery September 2011 and started radiation teatment January 2012.

    The radiation side effects seem to be varied from individuals. However, it was manageable. In the beginning, some ginger honey tea helped. Some medication will be prescribed for nausea.

    I had lots of chicken soup, rice congee, vegetable purees. Sometimes I had cooked meat and vegetables pureed together.

    You need good sleep and eat well to sustain the treatment.

    I did it and you can do it too. Good luck!




  • AngieR15
    AngieR15 Member Posts: 10

    My doctors decided to go ahead with 6 weeks of radiation to the sinuses and neck (leaving my saliva gland on the left side out of it). I am supposed to be standing at a wedding the day after my last treatment... I am wondering how you or your loved one tolerated the pain? Also how were they with hair loss? My radiologist said I will lose some hair on the top of my head and around the back near my neck.