Adnoid cystic carcinoma

[Vahalla]

Anyone has dealer with this type of cancer before please? 

I've just been diagnosed with Adnoid cystic carcinoma of the submandibular salivary gland. I have seen  two oncologist but they offer two different view of treatment.  One advocate radiation theray.  Other believe in second surgery to hopefully achieve a negative margin ( as the first surgery was  done based  on biopsy result that it is begnin tumour which it was not,  and pathology report show positive margin ). Because this type of cancer is rare, I' ve tried to find anyone with personal experience but have failed to. I have yet  decide the course of my treatment and time are running out.... 

Please anyone have this type of cancer and willing to share with me?  Please 

[chasjan1]

I'm so very sorry to hear about your diagnosis, be strong, I've heard of your type of rare cancer and if I can find some answers for you I will. In the meantime, trust in your medical team as I'm sure they are working very hard to treat you the best way they know how and with the best outcome..........stay positive 😘

[AliJ]

Hi, if it helps I had a similar rare Acinic cell carcinoma of the parotid gland, also a saliva gland. I had two surgeries to get clean margins and six weeks of radiotherapy as the cancer had already spread to the lymph node in my neck and the facial nerves. I am still in remission three years on. It is very scary and I found no-one else who had been through this. Happy to talk to you even though it is not the exact same thing

[Vahalla]

Hi AliJ. Im glad to hear that you are in remission now. it must have been terrifying for you. I have decided to go on with radiation therapy. can you share with me how radiation therapy affect you during the treatment please? what help most? what to look out for? 

I have an active toddler who is still learning about his strength and being gentle. there are occasions when he accidentally hit my neck wound or pinch it when he is upset.  Im worried about how im going to play with him during the treatment time 😕

[Bugz]

Hi Vahalla I was diagnosed with a form of salivary gland cancer in December 2016 mine is/was Mucoepidermoid Carcinoma (intermediate grade) clinical history submucosal tumour right oral cavity.