"OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Sorry I wish I could help. I do wish you much luck and hopefully as rare as it is its easily treatable. My other point is that the treatment of your cancer - despite the fact that it is rare - may be similar to what other head and neck cancers receive so there is still likely a lot of pertinent information here. As it is, your first treatment - partial mandiblectomy and gum surgery - is something that a few of our members have gone through. They may have pointers on post op care and pain management. I look at cancer as an individual thing... Just because certain cancers are similar and supposedly behave a certain way - it doesn't meant the outlook, or behavior of the cancer is going to be text book. So stats and such depend on many things - the individual, diet, environment, lifestyle, family history etc. so while your cancer may have a different name there may still be a lot of support and information to be had from our group. Hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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