topic Re: Adnoid cystic carcinoma in I've just been diagnosed

Adnoid cystic carcinoma

Vahalla — Tue, 20 Dec 2016 06:09:20 GMT

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

Re: Adnoid cystic carcinoma

chasjan1 — Wed, 21 Dec 2016 09:31:58 GMT

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 😘

Re: Adnoid cystic carcinoma

AliJ — Mon, 02 Jan 2017 06:39:15 GMT

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

Re: Adnoid cystic carcinoma

Vahalla — Thu, 05 Jan 2017 12:16:37 GMT

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 😕

Re: Adnoid cystic carcinoma

Bugz — Fri, 12 Jan 2018 15:06:57 GMT

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.