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Administrator, Director of Patient Support Services
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Very good! Thank you!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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"OCF Down Under, Kiwi"
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Have you read "The median is not the message". A lovely essay and all about stats but also about survival.

http://cancerguide.org/median_not_msg.html


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Thank you.

Last edited by Ron Silver; 09-16-2014 01:33 PM.

Tonsil Stage 4
7 weeks chemo/rad
4 months peg
NED Pet 9/13
Joined: Jul 2012
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I'm a bit like you. I probably read just about every stat I could find. I want to know the good, the bad and the ugly. It is difficult to get an exact figure, as you probably know better then me, due to many different factors like stage, even if stage 4, then is a,b,c, then the TNM, and they don't account for tumor thickness, nodes, ECE, PNI, LVI, and some are outdated figures, etc. etc, but you're on the right tract in the 40% range, non HPV, HPV positive changed everything. I even read 38% for oropharyngeal cancer 5 year rate at one time. I think I stopped researching, rather looking into, when I was down to the low teens, even 9%, figuring I could go no lower. I couldn't keep tract with all my different recurrences, treatments, and one of my surgeons said, I'm out of the medical books now.

Even though I knew some of the numbers, I never asked my doctors what my odds were, and they never said either. I guess they have no cystal ball. I don't know why, maybe since I don't ask many wether I can do something or not. I just do it, and figured if they were doing curative treatments my odds were still high. Only twice was I really given stats without asking, that was before and after. My ENT gave me informed consent to the risk of surgery, pre-op, which turned out to be 20-25% lower than my own findings, so was relieved about that lol. Then my RO gave me the risk of death having more radiation, 17% vs 70% of cancer returning by not doing anything. I told him more like 100% and then dying anyway with my background, and can probably figure which I chose.

The other thing with stats I look at is the positivity too. All our treatments, surgery, radiation and chemo are based on stats, and we follow them. I guess the ones which worked out best. It's a double edged sword.

I don't think I have any stats on file per say, but their out there. SEERS doesn't account for HPV, maybe only recently, and they are only from 9 different U.S. locations, but looked at them too, different abstracts, studies, and come up with all sorts of numbers. They include them anyway.

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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Thank you.


Tonsil Stage 4
7 weeks chemo/rad
4 months peg
NED Pet 9/13
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"OCF Canuck"
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Hi here - I can't remember where I read the stat but it was a valid one. It had to do with O2 intake and exercise during treatment and overall survival rates of smokers.

Sadly our vices are what can kill us.. And in this case even moderation can be deadly.

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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Patient Advocate (old timer, 2000 posts)
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Here is a recent article regarding smoking, head and neck cancer.

http://www.independent.ie/irish-new...sk-of-head-and-neck-cancer-30527668.html


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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[quote=Ron Silver]Thanks for the replies, but I am very interested in the correct survival stats. Specifically, the survival stats adjusted for HPV negative status, being a locally advanced stage 4 (enough lymph node involvement to be classified as stage 4), and smoking history (30+ pack years.) I found the "Seer" stats.

http://seer.cancer.gov/

Overall, a 67% (if I remember correctly) 5 year survival. But again, not adjusted for the "negative" factors cited above.

Nothing wrong with researching this issue or being informed as to the correct survival statistics for one's disease. Nothing negative about it. I endured the chemo/radiation/peg tube wondrous experience. I want to know the correct survival stats on my disease. Knowing the stats is not "putting much store by stats." I know what stats are-I have nearly 20 years of education and have taken college and graduate level statistical analysis courses. Maybe I need to take a course in how to get a straight answer from my oncologist!

What I found very interesting in my "journey" was finding how much the 5 year survival rate jumped up-by I believe over 20%. But reading between the lines, it appears the increased survival rate was directly due to the HPV involvement. I'm "old school" as I smoked and dranked my way to my demise. [/quote]

Does the recognition that cancer survival statistics are highly misleading, because of inherent biases, make your quest to know "the correct survival stats" largely irrelevant?

Despite that these statistics are very deceptive the American Cancer Society and other cancer charities have been hoodwinking the public with the use of these misleading statistics and the obfuscation of crucial cancer information for decades

Few people, including doctors, understand that survival statistic are not related to mortality data in any significant manner - perhaps that's why your oncologist can't give you "a straight answer"?

Last edited by ChristineB; 09-16-2014 10:18 PM. Reason: removed link
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"OCF Down Under"
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Wanting to know "our chances" is a very normal reaction. My research quickly brought me to the view that the data for things like 5 year survival rate are by definition historical. They don't reflect your chances "today", with the advances in imaging, diagnosis and treatment techniques we have available to us now. There are also less tangible variables that will impact your case against the statistical group you are comparing with.

I became pragmatic about the numbers. 80% cure rate I was given. That sounds high, but if that was your survival chances going to work you wouldn't go in on Friday!

There is not much point knowing that 15% of 747s crash after you're on board. What we really want to know is will THIS 747 crash! No one has the crystal ball to tell you that, its all a best guess on not just the historical stats but your staging, your age, smoking history etc. Its an educated guess, but a guess all the same.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Here in New Zealand none of the Oncologists/ medical personnel make any money from any of the chemo drugs.
Firstly, all health care is free.
Secondly all medication /chemo drugs are provided free.
Treatment methods/drugs used are chosen according to treatment protocols. All evidence based.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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