| | 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 | Chris, It may not change the treatment but it has proven to change the outlook as HPV+ SCC responds better to the treatment and (therefore) has a less chance of reoccurrence so in my mind it's worth knowing. I, for one, wanted to know what why trying to kill me so that maybe I would know what not to do in the future. In HPV's case there's nothing I can do to prevent it so I just have to hope the early recent studies stand up for years to come.
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 | Chris,
The "why me" syndrome is normal. We have all been through it.
Although it seems unlikely to you at this time, you will find that this wondering will go away and I predict that you will become a strong advocate for early detection and public awareness of oral cancer.
OCF is in the process of getting groups of survivors together in different areas of the world for this purpose and if you stick around here, you will see future postings about this. We could use your help.
Jerry
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: Aug 2008 Posts: 6 Member | | OP Member
Joined: Aug 2008 Posts: 6 | Jerry,
It sounds like our stories are quite similar, I hope for as wonderful an outcome as you have enjoyed. Having been around head/neck CA patients all my nursing career, it is a disease that truly needs a spokesperson and advocate. I have administered chemo to some very advanced stage head/neck and it is much more prevalent than most realize. We were just talking at work, just prior to my diagnosis, how many patients that have been coming in recently with head/neck ca. I am excited to surround myself in a forum, and that we are"all in this together". This diagnosis is nothing I could have ever imagined for myself(breast ca much more understandable). I have no personal relationship with anyone that has gone through this but I have watched the strength and faith of my patients and pray I can exhibit even 1/2 the strength that some of them have. Thank you for including me and I look forward to giving my insight and knowledge in any way I can.
42yo female,diagnosed with tongue cancer 7/08, T1N0Mx, s/p partial glossectomy,partial left neck node dissection in 8/08. I am also an Oncology RN by trade,finding an even bigger connection and empathy for those I care for.
| | | | | Joined: Jul 2008 Posts: 56 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2008 Posts: 56 | Just out of curiousity, how accurate do you guys think the SEER's database is? It seems to cover some of the counties in Georgia. Looks like they cover a large percentage of minorities, and 26% of the entire U.S. population. | | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | The SEER data base is not an absolute by any means, but it is the only mechanism we have in the US to track incidence and outcomes. There is no practical way to track 100% of the American population and this database's collection points have been selected to represent the entire country though only collected from a portion of the country.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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