| | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP  "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | My brother, who has had his 2 year post treatment ENT clearance, is still not back at work. He was told he had to be off for 2 years to reduce the risk of sudden catastrophe due to brain metastasis to less than 1% (he's an airline pilot). Now that the 2 year mark is up the goal posts have been moved by the company medical department, and he believes they are angling for him to have regular pet scans, which his ENT (and the NCCN guidelines for memory)advise against. We're staggered by this, although hugely gratified that he is now 2 years past treatment and well. He's been off work for 2 and half years. He doesn't want a scan and feels this should be his line in the sand - the company medical GPs shouldn't be overuling his own treating doctors. Can anyone point me in the direction of the treatment guidelines? I've managed to find them before, but no luck at the moment. Sorry to rant, and I know we have much to be thankful for.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Right.. Since I'm not a pilot and not American I'm not going to give any advice, except to say if he's having problems with the airline maybe he should open his own charter business ? Other than that I would collect a whole bunch of notes from his drs. One of the reasons it's suggested after a certain amount of time clear having those scans is exposing him to more cancer causing radiation...  best of luck..
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
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | OP "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Many thanks, guys. The ENT is shaking her head, and has given him her personal mobile number to give to the avmed doctors. A big problem is they have never accepted the ENT as being competent to judge his risk of metastasis, and continue to insist on medical oncology reports. The medical and radio onologists were co-ordinated by the ENT, who does all my brother's checks. The AVmed people are GPs who think cancer = oncology. They have scans on disc, written 3 monthly scope reports etc etc etc, but I also think they want to be told that the risk of a recurrance is 0%!! Dealing with his work medical department has been hugely stressful. If someone can post the link to the treatment guidelines that would be great.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Do you mean the treatment guidelines prepared by the National Comprehensive Cancer Network? OCF has them on the main part of the website, here. Note that these are from 2011. I don't know whether physicians in Australia follow these guidelines or have their own, but they may provide some guidance as you deal with the company doctors.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | OP "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Thanks Leslie, that's exactly what I'm after. Cheers
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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