topic Re: adenoid cystic carcinoma in Living with cancer

adenoid cystic carcinoma

SILLY — Sat, 26 Mar 2011 13:56:05 GMT

I was diagnosed with ACC in February ,2010.The tumour was in my nasal cavity,lacrimal duct and lacrimal sac.It was stage 3 cancer .I had surgery in April and imrt in June and July. An MRI in December showed no sign of cancer. There are surgery and radiation side effects. This cancer is rare and to have it where I did is even more rare.I know not many Australians have it but still there may be one using this site. I would be glad to talk here to anyone with this cancer.

Re: adenoid cystic carcinoma

SILLY — Sun, 10 Apr 2011 14:58:13 GMT

Still hoping the few Aussies who have ACC have found this site.

Re: adenoid cystic carcinoma

Sailor — Tue, 12 Apr 2011 08:15:22 GMT

Hi SILLY It is a rare cancer, so probably there are unlikely to be others on this site. Maybe there are and they haven't logged in recently. But there is a worthwhile group you could get in touch with. It is the Centre for the analysis of Rare cancers. Their website is https://www.cart-wheel.org/. Not only might they be able to put you in touch with someone else with this cancer, but you will have the opportunity to help someone else in the future who will present with this. Cheers Sailor I must go down to the sea again  For the call of the running tide  It's a wild call and a clear call that may not be denied. John Masefield

Re: adenoid cystic carcinoma

SILLY — Sat, 16 Apr 2011 22:19:25 GMT

Thanks,Sailor. Found it and registered.

Re: adenoid cystic carcinoma

SILLY — Wed, 20 Apr 2011 02:10:45 GMT

Dear Sailor, Discovered Cart-wheel is for research. I don't know till I next see my oncologist and my ENT if I'll be able to get the info required by CW .

Re: adenoid cystic carcinoma

Terrafirma — Wed, 10 Aug 2011 17:57:28 GMT

Hi SILLY, Here's a site worth exploring if you haven't come across it before: Adenoid Cystic Carcinoma Organization International at http://www.accoi.org and their Yahoo group at http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/ Cheers, Ed.

Re: adenoid cystic carcinoma

SILLY — Thu, 11 Aug 2011 03:30:05 GMT

Thanks Ed .I have found ACCOI through Facebook. There is also the Rare Cancer Alliance and Team Inspire Health and Wellness , all of which I use. I was hoping to find someone close where I live . Thanks again for your input.

Re: adenoid cystic carcinoma

Gabe — Fri, 12 Aug 2011 01:59:57 GMT

I think you might find this site useful. I am also a member of this forum and go under the same name. Cheers Gabriele http://oralcancerfoundation.org/facts/rare/ac/index.htm http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=133089&Searchpage=1&Main=11951&Words=adenoid&Search=true#Post133089

Re: adenoid cystic carcinoma

debstar — Mon, 05 Sep 2011 21:48:54 GMT

Hi Silly, just did some research into your particular type of cancer, its so close to what my Terry has, but also so very different, the same region of the face but different glands, he has Small cell undifferentiated carcinoma, its hard for us to find any one with this type of cancer as well as it is also a rare and very very aggressive type of cancer, maybe we are the only ones on the coast with " adenoid cystic carcinoma" and "Small cell undifferentiated carcinoma" its usually an older persons disease, the median age being 56 in our case, what the heck happened, we are 15 years ahead of schedule,, any way, its comforting to know that some one else has an understanding of the type of issues we are dealing with, We are off to Brisbane today for the "Planning Session"so fingers crossed.. hope you have a good day, its sunny and warm out so hope you have a chance to enjoy it, take care, regards Deb and T

Re: adenoid cystic carcinoma

SILLY — Tue, 06 Sep 2011 01:57:49 GMT

Doesn't oral cancer mean only mouth and throat? Mine was in nose and eye.Thaks for the info though.

Re: adenoid cystic carcinoma

SILLY — Tue, 06 Sep 2011 02:14:07 GMT

I think there would be less than 100 people in this country with ACC. After the head and neck clinic did their research they found only 15 people worldwide in the last 50 years(since records were kept) had this cancer in the same place as me. I have through various sites found some Australians with this cancer. I have also found many in other countries . In the USA they are active in fundraising for research into this disease. There is a case in Texas where chemo shrank tumours greatly.Any chemo for ACC is experimental and mostly not successful and any that helps one may not help others. When the cancer is rare there is less money availabe for research,understandably. My rad/onc is Dr Sandro Porceddu. Is he T's as well. Have a good day

Re: adenoid cystic carcinoma

debstar — Tue, 06 Sep 2011 06:39:00 GMT

Hi Silly, well what a day we have had, the planning session was good, very informative, and the specialist Dr Brian Bermeister is lovely, we talked with all the support staff, cancer nurse, physio, oral care nurse, psychologist etc., all very lovely people... we have come away full of information and full of hope that this will be the beginning of the end of our cancer battle.. its only 21 days to go before we begin day one of treatment.. the day after my birthday actually, I'm very lucky to have T around for my birthday so its going to be a good day. Hope you had a good day,

Re: adenoid cystic carcinoma

ducksnutts — Fri, 28 Sep 2012 11:39:38 GMT

Hi Silly, I also had Sandro Porceddu as my Rad/Onc for treatment after surgery. I was diagnosed with AdCC in January 2010, and was lucky enough to have a team of awesome specialists at the PA hospital looking after me. Ben Panizza was the ENT surgeon, Dan Rowe was the plastic surgeon that had the job of patching up (total of 13 and a half hours of surgery in one hit), then Sandro took over with the radiation treatment. What I would like now is a GP that I can go to that has some knowledge or experience with AdCC. I can be slightly paranoid at times over varying pains, etc and would like to be confident that a GP has enough knowledge of this cancer to give the right advice as to whether I need to worry or not. Do you know of any GP's within Brisbane (preferably south side) that you could recommend?

Re: adenoid cystic carcinoma

Sailor — Fri, 28 Sep 2012 12:01:10 GMT

Hi ducksnutts You have a fairly restrictive requirement for a GP. AdCC is a rare tumour. Finding a GP who knows about it is a big ask as very few of them know a lot about any cancer let alone yours. How about turning the thing around that this is a chance to educate a good GP and help yourself as well. See if you can find a GP who you are happy with, is interested in cancer and that is willing to learn about AdCC. Then ask someone like your friendly radiation oncologist to provide them with the material that will help them learn and benefit you. Cheers Sailor Hence a ship is said to head the sea, when her course is opposed to the setting or direction of the surges. William Falconer

Re: adenoid cystic carcinoma

SILLY — Sat, 29 Sep 2012 12:18:44 GMT

I agree with Sailor about the gp. Mine only knows what she's looked up ,I guess. The thing is that I am comfortable with her . She's the gp I saw when I knew something was wrong and she sent me for a ct . I see her for other things too,of course, and can discuss and also chat with her . After I was finally diagnosed and treated my, husband kept telling me to go back and see her .She was usually booked whenever I wanted to see a gp so I usually saw someone else . Finally I did see her ,9 months since the last time ,and it made me feel so much better as I'd been depressed . She was caring .patient and helpful so since then I nearly always see her . We probably have a lot we can talk about but I prefer to do so in the closed group here . There is also a closed group on Facebook and a new group there for Australians with this cancer . Let me know if you are interested in either .

Re: adenoid cystic carcinoma

SILLY — Sun, 30 Sep 2012 01:02:44 GMT

When I said in my original post that there are probably less than 100 people in Australia with ACC ,I should have said less than 100 newly diagnosed each year . That is purely a guess from information I've read about the statistics . Some survive a long time .others do not .It is a very unpredictable cancer .

Re: adenoid cystic carcinoma

Bessyh — Mon, 26 Nov 2012 06:21:42 GMT

Hi, I am 32 years old and have just been diaognosed with a adenoid cystic carcinoma of the Lacrimal gland. origional the tumour was thought to be benign, but after they removed it the histology came back as ACC 😞 worried sick, i have 4 Children under 6. looking for answers

Re: adenoid cystic carcinoma

Bessyh — Mon, 26 Nov 2012 06:21:53 GMT

Re: adenoid cystic carcinoma

SILLY — Wed, 28 Nov 2012 03:22:10 GMT

Bessyh, I am sorry to read your diagnosis.This cancer is so often thought to be something else and most don't know till after a biopsy . I am guessing that you may have more surgery to ensure that they got it all and radiation may also follow this . What has been told to you about possible treatment ? I will ask you to be a friend here so I can send you a private message . Then I can talk more .I have met other women in your age group ,with young children , online ,with ACC . I know it's very frightening to have this happen . I was terrified from the time I found out what it was until the surgey to remove more .That was 2 months of worry . More than 2 years later I rarely worry . I know you will find it a great help using online support .I found online support much later .

Re: adenoid cystic carcinoma

Bessyh — Wed, 28 Nov 2012 03:37:28 GMT

Thanks Silly, I called the hospital yesterday as I hadn't heard anything and they have told me I will have an appointment with the specialist and surgeon?? next Tuesday down in Melbourne. I live Semi Rural so have to travel 4hr by train or car to get to these appointments.I would love to hear about your experiences. I made an appointment yesterday to see my GP and get a referral to see a counsellor. I'm not handling this very well at all :'(