adenoid cystic carcinoma

[SILLY]

Bessyh ,counselling is a great idea .I has some through the Cancer Council a few months after my radiation finished . I had asked for it before radiation but went away for a week before radiation. On my return I found that my appointment came and went . I really needed it then but didn't do anything for a while .

[SILLY]

What scans have you had since treatment finished ,Ducksnutts ? How often are you having check-ups with your ENT and with Dr P. I saw Dr P. early this month and now will see my ENT in 6 months and him 6 months later . It was originally 3 months between visits , then 4 but now will be 6 .

[ducksnutts]

Hi Silly, I had my surgery in January 2010 and 7 weeks of radiation after that. During the first year, I was having MRI's quite regularly because I had so much pain. They were concerned there was more, but nothing was found. There were microscopic patches still there after surgery, but after radiation they vanished. I actually had an MRI a couple of days ago of my head, and a CT scan of my neck, lungs and liver. First scan in 12 months, so I have everything crossed that the results are good. All of my surgery and treatment to date has been carried out at the PA Hospital under the public system. I was very fortunate that I had so many specialists there looking after me - ENT surgeon was Ben Panizza, Plastic Surgeon was Dan Rowe, and Oncologist was Sandro Porcedu. As of last week, I am now under Ben Panizza privately, won't need to see Sandro unless I need more radiation (which I have been told is very unlikely). If the cancer comes back in my face, I cannot have any more radiation, too much damage already. Incidentally, I still have permanent pain in my face due to nerve damage and removal. Am on permanent medication for that, which sometimes works and sometimes doesn't. Also, outside of the public system, I will be having scans 6 monthly instead of 12 monthly. It's just too long. Sorry it took me so long to get back to you. I have had quite a busy week Ducksnutts

[SILLY]

Will reply in a private message to you with more details . I am glad to hear from you . I was a little worried . I hope you get good results from your MRI . Mine have not shown any cancer but the last showed sinus problems . I also have nerve pain for which I take medication . My gp helps there . I am having annual MRIs and annual chest xrays . Dr P agrees with the xrays which will be arranged through my gp as well . Will send a message very soon .

[SILLY]

Ducksnutts ,you now have two messages from me . Will talk soon .

[Jeannaaf]

There is a facebook group - Adenoid Cystic Carcinoma - Australia Support - Desiree Fraser is the admin, the group currently has 17 or 18 members....hope this helps...

[SILLY]

Jeanna , I am a member of that group . Thanks for posting this as it may help others here in the future .

[Neil]

Hi, I was diagnosed with ACC back in 2009. An operation was not possible only radiation which seems to have worked for the moment. No growth since and most symptoms gone. Although I no longer have good feeling in my left cheek area, I can feel but the sensation is widespread rather than specific (if that makes sense) and is tingly. If anyone needs a good ENT or Oncologist in Sydney area feel free to contact me as I was very happy with both of my people.

[SILLY]

Thanks for your reply .

[VictoriaS]

Hi There, please help I am about to have my entire left eye removed tomorrow for this cancer! Is there another way??