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.

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.

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.

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.

Hopefully you've stopped the smoking and drinking. here's another stat for you - people who continued to smoke through treatment - 95% mortality rate at the 5 year mark. Hugs

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.

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!

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

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

[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??