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| | Joined: Nov 2009 Posts: 2 Member | | Member
Joined: Nov 2009 Posts: 2 | Hi - I was diagnosed with Adenoid Cystic Carcinoma of the right nasal septum in mid 2005, after an op to remove what I thought was a polyp....
Since then, it has recurred three times - the most recent in November 2009 - I have just been told that there are three more nodules visible, so I am just about to face my 8th operation....
To date, surgery (resection) has been the only form of treatment and I wonder if more radical treatment should now be put in place. So far I have been lucky, as it has been slow growing and no obvious outward signs, but from what little research and knowledge there is on this (particularly here in Australia) I am concerned at the long term prognosis.
Would love any information at all - and if you know anyone or anywhere in Australia that I could get info, that would be very much appreciated.
Meri
I was diagnosed with ACC of the nasal septum in 2005, after an op to remove what I thought was a polyp.
It has recurred three times - I have just been told that there are three more nodules visible, so facing my 8th operation.
Any advice would be much appreciated.
| | | | | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Hello Meri I am sorry to read of your recurrences. I can't help with your type of cancer but wondered if you had tried the Cancer Council. They have an oral cancer forum. Someone there may have had similar experiences in Australia. That is very tough, having an eighth operation. I gather from your post that you haven't had chemo or radiation treatment. Are the doctors you are seeing cancer specialists? Please let us know how you are getting on. You have found a wonderful site where members understand what you are going through and will offer support and knowledge. The main OCF site here gives 2 pages of hits for your cancer type using the site search engine: http://oralcancerfoundation.org/Best wishes and love from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Hi Meri,
Sorry to say I can't give you any advice either other than what Helen has suggested by way of the cancer council. I'm also in Australia and have found information on SCC to be very limited as well but the cancer council were able to send me some information. But by far I've found this site to be the best help of all. Best wishes as well and I hope everything works out ok for you.
Wendy
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
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