Adenoid Cystic Carcinoma of the left Ear Auditory Canal

[RobinH]

I was diagnosed with Adenoid Cystic Carcinoma of my left Ear Auditory Canal in December 2011. Imagine my shock, for several years being mis-disagnosed with ear infections until a very good ear specialist decided that there was something really wrong with my ear June of 2011 and said he would watch it for a few months because my ear canal was narrowing.

In October/November 2011 the pain in my ear got worse, and I was sent for an CT Scan..something showed on the test. Then an MRI... a 2 cm mass in my left ear canal. I underwent surgery - excision biopsy... in December 2011. The radiology results come back malignant. A rare form of cancer and the location where it is located in even more rare. I opted on to have the surgical resectioning because after everything I read it seemed more risky.

I was leaning towards proton radiation therapy in January 2012. After another MRI... how does every handle all of these co-payments for MRIs, CTs scans?

But when I had the MRI in January the mass that was supposed to be completely removed by Dr. Santos of MEEI was still there. How could a slow growing tumor grow back in less than 1 month if it was completely removed like they told me it would be. I decided to wait and just do nothing. Then the pain increased... so I decided to get the residual mass removed again... scheduled for surgery in June ... had another MRI in May... the mass had shrank somewhat...so my question was why not just have radiation treatment instead of surgey + radiation treatment.

I met with the Radiation Oncologist this week and the potential side effects list are alarming (e.g., brain injury, hole in my ear, second cancer, jaw tightening, damage to my face--darkened skin, hearing loss, etc.)....

Does anyone have any recommendations on proton radiation treatment and adenoid cystic carcinoma of the ear auditory canal?

[SILLY]

Sorry about your diagnosis . My tumour was in the tear duct and it had spread into my nasal cavity and eye sac, also rare places for ACC . I do not know about proton radiation as I had IMRT after surgery . That was all in 2010 . For now there is no sign of cancer in me . There are side effects from radiation but not all the possible ones . There were some I wasn't told to expect. Side effects depend on the area being treated . I know of people to have had proton radiation . I think it is one of the newer types of radiation so probably a good one for you . Maybe someone else can give you more information .

I think it is better to live with side effects as it may mean keeping ACC at bay for longer and if you are lucky for a very long time . Whatever happens ,all the best . I will be thinking of you .