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#185171 09-15-2014 10:25 AM
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I have been searching and reading for many many months. I was looking for the survival stats on Oropharyngeal cancer. Specifically, locally advanced (stage 4-lymph node involvement but not metastasized to other organs-stays above the neck). HPV negative and 30+ pack years.

My oncologist says 70% 5-year survival rate. My research shows only about a 40% (less than 50%) 3-year survival rate and a worse 5-year rate.

http://www.oralcancerfoundation.org/HPV/pdf/NEJM_Gillison.pdf

Overall, not figuring in HPV status, pack years and the fact of it is locally advanced stage 4 (lymph node involvement on one side of neck, my doctor is correct (really lying by ommission because I asked him "what about......" and he did not respond.

Am I on track with this. Just what to know the true stats on my disease. Thank you.

Last edited by Ron Silver; 09-15-2014 10:26 AM.

Tonsil Stage 4
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4 months peg
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Ron, Im sorry but off the top of my head I dont know all the stats about survival rates. Im not one to put much faith in the numbers as I shouldnt be here but I still am. One of our members who has since passed away used to answer questions like yours with..."you will either make it or you wont., stop worry about statistics and go out and live your life. Ive seen all kinds of scenarios here over the years. Some Stage I patients who seem to have an easy time wont get thru it while others who were Stage IV and even have had recurrences have survived.

You may try checking out the NCI guidelines or cancer.org for more info about specific percentages.


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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Ron, stats are just that -- numbers. They do not tell us where we will land, among the 30% or the 70%. When John was completing his radiation, his oncologist told me that roughly 2 out of every 10 people make have swallowing difficulty -- meaning to encourage me not to worry. Ironically, John is among the 2. It has taught me not to put too much store by stats.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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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.


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Hopefully you've stopped the smoking and drinking. smile here's another stat for you - people who continued to smoke through treatment - 95% mortality rate at the 5 year mark. 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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The night before I started treatment. Nothing since. However, I have been looking for the statistic you cited (really one that says I can resume my vices without risk of harm) but haven't found it. Where did you read that?

Ya know, you mention smoking and drinking like it is a bad thing. I do miss both very very much. But not nearly enough to risk the sheer delight of another round of chemo/radiation.


Tonsil Stage 4
7 weeks chemo/rad
4 months peg
NED Pet 9/13
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Ron, when you first posted I sent you a private message (PM). There is an important link in the PM. It will give you detailed instructions on how to add a signature. Its very important to have one to help us better understand your situation and offer input. Please add a signature as soon as you can.

Thanks!



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
Joined: Mar 2011
Posts: 1,024
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The trouble with statistics is that we dont fall neatly into the groups they define us by.
Kris was HPV positive. He was supposed to be cured by the rads and chemo. In fact our ENT said that to him, " congratulations. You are cured" . 6 months later he had a recurrence .
The stats all scared the shite out of me. I now know that they do not apply to us. I now take absolutely no notice of them.
As Charm used to say, " you're either a survivor, or you're not".
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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I can understand not wanting to know the stats etc. Me, I want to learn as much about it as I can. I just recently found out that the oncologists purchase the chemo drugs and sell them to the patients/clinics at a large profit. Interesting:

"Unlike other drugs, chemotherapeutics are bought and sold in the doctor's office � a practice that originated 40 years ago, when only oncologists would handle such toxic substances and the drugs were relatively cheap. A business model evolved in which oncologists bought low and sold high to support their practice and maximize financial margins."

"Oncologists buy drugs from wholesalers, mark them up, and sell them to patients (or insurers) in the office. Since medical oncology is a cognitive specialty lacking associated procedures, without drug sales, oncologists' salaries would be lower than geriatricians'. In recent decades, oncology-drug prices have skyrocketed, and today more than half the revenue of an oncology office may come from chemotherapy sales, which boost oncologists' salaries and support expanding hospital cancer centers."

http://www.nejm.org/doi/full/10.1056/NEJMp1109772

http://www.medscape.com/viewarticle/752801

Last edited by Ron Silver; 09-16-2014 06:40 AM.

Tonsil Stage 4
7 weeks chemo/rad
4 months peg
NED Pet 9/13
Joined: Nov 2013
Posts: 21
Member
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Joined: Nov 2013
Posts: 21
[quote=ChristineB]Ron, when you first posted I sent you a private message (PM). There is an important link in the PM. It will give you detailed instructions on how to add a signature. Its very important to have one to help us better understand your situation and offer input. Please add a signature as soon as you can.

Thanks!

[/quote]

Signature ok??


Tonsil Stage 4
7 weeks chemo/rad
4 months peg
NED Pet 9/13
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