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"OCF Canuck"
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"OCF Canuck"
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I agree... the gold standard - is a standard... because it works.. (most of the time) as for the robotics. I had surgery followed by rads and chemo. Overkill? maybe... but I've seen the outcome turn bad when people second guess their drs, or go for a lesser treatment.

We are all individuals. We all respond differently. Some people have a cancer that no matter what they do will kill them. But for the most part, the best results I've seen have come from hitting it between the eyes with everything they offer.

hugs.


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
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Cheryl, did you say that you first had robotics surgery and then radiation and chemo?


DX in 12/2010. Stage 4 SCC HPV+ BOT swollen lymph. I've spent the past 3 years away from medical treatments. Instead I've focused on good nutrition, active exercise, singing, laughing, oral exercises and such. I've had neither pain nor discomfort. But I haven't been able to kill the cancer. So, I'm now considering robotic surgery and/or radiation.
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Don, you say that one "must trust the doctors" But my problem is that the last two docs have advised different treatments. So, I have now a consultation with a third doc at a third institution. I'm just trying to "zero in" on the best path for me. Thanks for your input.


DX in 12/2010. Stage 4 SCC HPV+ BOT swollen lymph. I've spent the past 3 years away from medical treatments. Instead I've focused on good nutrition, active exercise, singing, laughing, oral exercises and such. I've had neither pain nor discomfort. But I haven't been able to kill the cancer. So, I'm now considering robotic surgery and/or radiation.
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As mentioned, if you go to a CCC or several, the tumor board will come up with the best plan of action, maybe not all agreeing, but majority will. There are as many doctor opinions out there as there are laymens opinions on here, so they will be different to some extent with surgery, radiation, chemo, induction chemo, Chemoradiation, etc. due to their education, training, technology, experience, clininical trials, professional guidlines. 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






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Like Paul, trust and their opinions are different traits. Cancer is not cookie cutter. Give 3 qualified doctors the same fact sheet and they can easily have 3 different rationales and recommendations.

Generally, they follow the standard of care as defined by NCCI guidelines. But these therapies fall pretty broad umbrellas. Each patient has unique characteristics that once factored in produce the variability so often found in the recommendations.

Tumor board and second opinions validate your case. Even though they may have different finding, it is reasonable you trust all the providers, individual and facilities.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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"OCF Canuck"
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"OCF Canuck"
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Bill. I had regular surgery (by the top guy in Toronto - who is also the head of the head and neck oncology departmant - at the TOP cancer center in Canada. However. I would NOT have had surgery if it had been HPV related cancer - which is what yours is. The first line of defense for your type of cancer (because it responds really well to chemo and rads) is actually chemo radiation.

I had a follow up of chemo and rads as a secondary treatment because my cancer wasn't HPV related. And despite my surgeon's certainty he got it all - he wanted to play it safe and throw the works at me (because I am not a smoker/or drinker and was fairly young) I trusted his expertise in the matter as this is ALL HE DOES for a living. (amazingly complicated head and neck cancers) He consulted with the rads and chemo team and told me his recommendation, and the radiation dr. said the same - so I when for it.

and so far so good.

hugs.


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
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Cheryl, that's interesting about the not having surgery part of your hypothetical. I've read many instances here on the forum of people being treated only with chemo and rads for essentially the same kind of cancer as mine. But at the time of my diagnosis - exactly 5 years ago, maybe even this week (!) - there was never a question of them not operating.

Now of course I didn't know anything about OCF at the time and was as we all are more or less numbed by the news. Also didn't have anyone else to help me out, i.e. partner or knowledgeable friend. So I went with the docs' recommendations (RO, MO and ENT) and have always trusted them and have never second guessed them. At the time, and today, I consider myself fortunate to have been able to avoid chemo.

But I wonder if had I been better educated I might have tried to push for avoiding surgery. Or is it just that in the last 5 years the trend for HPV+ SCC has been moving away from the neck dissection. Interesting points, and of course for me now moot.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Bill,

I had TORS followed by 6 weeks chemo/radiation. I was treated at Johns Hopkins, the #1 for H&N cancer. That being said, I too had a different recommendation prior. I'm here and thus far cancer free so that's testament to the docs at JH.

Positive thoughts and prayers

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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