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Olfactory Neuroblastoma - 40 yo Woman - Seeking advice/connection

Hi, 

I’m a 40 yo female with (rare) diagnosis of right nasal cavity esthesioneuroblastoma or olfactory neuroblastoma, preliminary Hyams Grade 3, presumed Kadish Stage A.  On April 9th I underwent a craniotomy by an expanded endoscopic approach for resection of tumor. Negative margins were achieved. Plan for radiation therapy to follow.

Any one have similar diagnosis of ONB? I’m looking for any general advice or support? Has anyone used proton beam therapy instead of IMRT for radiation?

Additional details: Adrenal mass noted on CT and PET. MRI of neck shows left level 1 lymph node with borderline enlargement, though PET and FDG not avid. Details below for both.

Neck biopsy: FNA conducted on left level 1 lymph node. Negative for malignancy. “Although definite cytologically malignant cells are not identified, evaluation is limited by obscuring blood clot and radiographic gel. Clinical correlation and follow-up is recommended with further evaluation as clinically indicated.”

Left adrenal adenoma: Unusual PET activity – therefore – repeat PET CT in 3-6 months. Likely benign, washout suggests benign. At least 92% benign – but feeling is much higher than that. Tumor board suggested deferring adrenal biopsy or surgery at this point and repeat imaging rather than trying for potentially difficult IR bx attempt due to location and likely benign.

This is such a scary and overwhelming time and I'd love to connect with anyone who has gone through this - any words of wisdom, reassurance and/or thoughts and prayers immensely appreciated!!!

Thank YOU!

~Ola

 

Comments

Hi Ola, I'm just checking in to see if you had any responses here and to let you know that I am a survivor of estesioneuroblastoma.  My cancer was found in January 2019 when I had a surgery to remove the tumor which was obstructing my breathing.  It was diagnosed as stage 2 Kadish B.  I went through 6 weeks of radiation treatment after a successful surgery that had negative margins.  Subsequent PET scans (2 of them) showed no cancer in any other areas.  I am still getting MRIs every 3 months (though I had to postpone my most recent one until this week due to Covid closures here in Los Angeles).  I am a 52 year old female.  If you have interest in keeping in touch and sharing information I'm always happy to have someone else to connect with regarding this cancer and the treatment as I navigate through these years of maintenance.  Hoping you are well and healthy,

Ellen

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