| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Today I participated in my RO's 3nd Annual Colloquium on H & N Cancers at Moffitt. We have done this for the last 2 years. I can't believe this is our 3rd year. He and a teaching doctor from Moffitt give their presentations and then I get up and spend the next 2 hours giving the patient's perspective which is followed by a Q & A segment. This is done at Moffitt and the attendance is required of the med students so the turnout is a packed auditorium. Last year this presentation format received a student rating of 4.8 out of 5 and I'm sure this years went as well. I really enjoy the opportunity to shape future doctors into my way of thinking. lol Anyway I was busy taking notes during the docs' speeches and here are a few things that I thought we would find interesting. These are not listed in any order: 1. My Ro is currently writing the research plan to compare the effects of limiting treatment on HPV+ patients. He's not sure what will be limited, i.e. less radiation or less chemo or less of both, etc but he wants to do the trial. All he will need is willing patients. lol 2. A node larger than 1.5 cm is assumed to be pathologic; 3. 95% of all H & N cancers are SCC; 4. There are over 2 million users of Betel nuts with the overwhelming majority coming from SE Asia and the majority of H & N cancers from India are associated with Betel Nut use. A student reported that you can buy a solution of tobacco and Betel nut juices in Tampa; 5. Cancers of the Oropharyngeal region (BOT and Tonsils) represented only 18% of H & N cancers in 1970; in 2005 that increased to 32% and today Trotti estimates it's over 50% due principally to HPV; 6.The first H & N cancer patient was treated with radiation in 1902 and he was an attorney. Trotti confessed that doctors even then made mistakes. lol;
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | David,
You never cease to amaze me with all that you do for "our cause".
You are truly one of my heroes.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 |
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | David,
You are making a wonderful contribution. This should be done in all the medical schools. I have discussed it with my doctors and they agre that it is a great idea but are under terrible time constraints and have not been able to carve out time for such a program.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Malka,
This is a required attendance at Moffitt so I don't know how they fit that into everyone's schedule and we only do it once a year. The attendees really do enjoy it and even after our time is up many many come down and continue to ask Trotti and I questions. Yesterday we were even asked to leave so the next class could start. You know me, I would still be there talking if they would let me. Don't know if it's me but they sure look really young to be med students and doctors!!!
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | David,
Your perspective as a patient/survivor is so valuable--here and at Moffit. I love that medical students get to learn about OC from your experience. No one can tell the story better than one who has been through it. Good going!
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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