#91568 03-10-2009 07:36 PM | Joined: Oct 2006 Posts: 8 Member | OP  Member
Joined: Oct 2006 Posts: 8 | just finished watching Oprah. Grant Achatz, the young chef from Chicago who had tongue cancer was on there. His story was featured in several high profile publications a year or two ago. The show itself was about medical mistakes. He talked about how the lesion on his tongue went misdiagnosed for years before a visit to an oral surgeon finally gave him his diagnosis. I know this is the case with A LOT of people on this board. So frustrating. He also talked about his search for an alternate protocol than the usual for stage IV that includes surgery. I believe he did radiation and chemo at University of Chicago (I am not sure if they did anything else). He said he was 1.5 years out and still clear. I wish him the best. He did not mention how horrific radiation is (my husband only had radiation I am sure chemo adds another layer of misery) but it is easy to see he has been through the wringer. He is very thin but does look good.
Wife/CG to husband SCC BOT Stage 1 N0M0. Finished treatment (IMRT x 35) 12/26/06. Doing great now!
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | The New Yorker: A Man of Taste - May 12, 2008 Long but interesting article. Includes thoughts on the evolution of taste.
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | From what I have read about Grant, he didn't go thru very much like a lot of us did.He was very lucky they caught it when they did. Lucky guy there to have the diagnosis before major damage occured.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I better add, that noone diagnosed with OC is any kind of lucky.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | I wanted to watch that show and missed it! I will look him up, I have heard he did NOT want surgery and opted for radiation and chemo only....I wish him the best!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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