| | Joined: Jun 2013 Posts: 5 Member | OP  Member
Joined: Jun 2013 Posts: 5 | Hello, all, I cannot tell you the courage that everyone's posts have given me. Last week my ENT confirmed what I already knew from my readings here, though still in shock anyway, that I have stage 4 lingual cancer (more pronounced in right than left, 3-4 cm long), still waiting on pathology to confirm HPV (I pray), metastasized in two lymph nodes, one near my jaw, the other along my aorta. Both are about 2cm long the aorta one a little longer. (I am not smoker or drinker). I am seeing a radiation oncologist at one cancer center today (I have great fortune to live in NYC) and going for a second opinion at another on Wednesday. How do I decide between the two? The first is renowned for throat cancer and urged by my ENT and internist, and the second, urged by friends and family, is a world class cancer center and hospital. E.g., the doctor or the hospital? Practically, also, the first is easy to get to. Thoughts? Thank you! Rebecca
Rebecca
Age 60 at dx, SCC 5/23/2013
Stage IV, BOT, 2 nodes
Non-smoker, casual drinker, active.
| | | | | 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 | Are either of them Comprehensive Cancer Centers? You have a high % chance of testing positive for HPV, appx 70% so let's hope it is. Won't change your treatment much but will/should improve your mental outlook. IMO I would want to be treated by a CCC that see's and treats 1000's of patients like you. Don't get to caught up with personalities. Results are much more important. After seeing 4 different cancer docs I went and stayed with Moffitt. Not only because they are a CCC but they also did not suggest any surgery and gave me the highest survival % of all of them.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2013 Posts: 5 Member | | OP Member
Joined: Jun 2013 Posts: 5 | Both are, though one isn't on the OCF list, one (not on list) is Continuum- St. Luke -Beth Israel, and other is Sloan Kettering. I am lucky.
Rebecca
Age 60 at dx, SCC 5/23/2013
Stage IV, BOT, 2 nodes
Non-smoker, casual drinker, active.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | You will have a much better feel after your visits. Do make up your mind asap. Post after your visits and maybe we can provide some meaningful feedback. When do you hope to get the HPV findings back? I would want anyone treating me to know that result BEFORE a Tx plan was suggested (and especially agreed to) even though I said it probably won't make that much of a difference.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2013 Posts: 5 Member | | OP Member
Joined: Jun 2013 Posts: 5 | Thank you, I will post and let you know, thank you!!!. My ENT said there were indications in the pathology report after the needle biopsy of HPV but when I got report itself I saw nothing mentioning HPV. ENT missed the tumor in the surgery for the biopsy (cancer must be somewhere in the fold of the lingual tonsils) but hoping tissues will still be able to confirm HPV. But pandoscopy at showed it is nowhere else. Results should be back today or tomorrow. And thank you again. Any questions you think useful to ask?
Rebecca
Age 60 at dx, SCC 5/23/2013
Stage IV, BOT, 2 nodes
Non-smoker, casual drinker, active.
| | | | | 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 | Have many patients like you do they treat?
Obviously, what treatment do they propose?
We will be with you throughout this bump in the road so do use us often.
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: Jun 2013 Posts: 5 Member | | OP Member
Joined: Jun 2013 Posts: 5 | Thank you!!!!!! Will let you know, and thank you!!!
Rebecca
Age 60 at dx, SCC 5/23/2013
Stage IV, BOT, 2 nodes
Non-smoker, casual drinker, active.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Welcome Rebecca,
I went to Mt. Sinai, and now I'm with Beth Israel. Dr Harrison is my RO, who also is an ENT specializing in HNC, and can't say enough about him. He used to head the radiation dept at MSKCC, and the whole ENT dept is from there or Mt. Sinai, and took the best if the best when starting their cancer dept and ENT program. Dr. Jacobson is my ENT, also from Mt. Sinai. Someone on this board recently went to MSKCC, Andew, and seen Dr. Lee, RO. I still dislike cause they wouldn't even consult with me lol. Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jun 2013 Posts: 5 Member | | OP Member
Joined: Jun 2013 Posts: 5 | Wow, I am seeing Dr. Harrison today. Thank you thank you!
Thank you, this is a great boost and nice confirmation, thank you!!!!
Rebecca
Age 60 at dx, SCC 5/23/2013
Stage IV, BOT, 2 nodes
Non-smoker, casual drinker, active.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Every RO knows who Dr Harrison is, and others I consulted with said I was in good hands. That's probably why MSKCC did not want to see me. Tell Dr Harrison Paul B. said hello. I just saw him last Monday.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
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