%age of clear slate

ratface said:

My Oncoman
My Oncoman who I talked to a month ago said the new benchmark is two years cancer free to reach that 95% survival probability rate. Seems things have gotten a little better. This is from an Oncoman at on eof the premier Universities in The US.

What I want to know is when can you start counting? Post treatment? Post scan? Initial diagnosis?

From the last day of treatment.
If I could just get a nickel for every time I check myself for swollen Lymph nodes in my neck I would be happy!!

soccerfreaks said:

Congratulations!
And Merry Christmas .

Take care.

Joe

No way
Definitely from end of treatment. Half of us may have been walking around with cancer for some time before diagnosis. Diagnosis date is too random to use that as a start point. Besides, the treatments probably don't get rid of the cancer completely until very late in the proceedures. That is why there is such a horrible failure rate for the people who quit early or have a long break in treatments. Once you start, you want to finish in one shot if possible.

Last day of treatment is when you start counting.

KENT-CASS, Don't know if you had any Lymph nodes removed in your neck, but the scar tissue is stressful in itself! Feels thick and tough under the skin and drives you crazy thinking it is possibly a swollen Lymph node. Every ache or pain you get in your neck is cause for panic. Cant imagine if I get a sinus infection and have a lymph node actually swell up in my neck!

When I am not worried about that, I am worried about every breath I take. Unfortunetly, new lung cancer is common in patients treated for SCCHN. The new tumor might be a second Primary which is actually better for prognosis than if it is a recurrance of the original Squamous. But, even if it is a recurrance (locally or distally) the longer it is between original diagnosis and recurrance effects outcome prognosis and/or success. You want to put as much time as possible between finishing treatment and any new cancer. Not to mention any dental problems. And you want to catch it early! Unfortunetly, you can't control any of it so you just have to hope you make it a couple years at least and feel good about that.

Then you have the fact that the radiation itself can sometimes induce a new sarcoma of the head and neck. And that any person who has had SCCHN is 20 times more likely to have a second cancer diagnosis period.

I know this is a bunch of scary info, but I think it is important to know as much as you can about what you are facing, what you are looking for and what your options are if it happens. Knowledge is power as they say. I know others who have gone through our same treatments who NEVER search online and never did throughout the whole process. They are far less worried than I am and I am jealous somewhat. I am sure the doctors prefer their attitudes too. But, that is not my personality type. Most of the people who are actually on these boards WANT as much information as possible! If they didn't, they would be out living there lives instead of searching for any answers they can find... good or bad.

I am very glad to have this board. It has helped me the entire way. Although sometimes I wish I just believed the ENT doctor when he says "you are cured" and put it all behind me forever!

JGE said:

No way
Definitely from end of treatment. Half of us may have been walking around with cancer for some time before diagnosis. Diagnosis date is too random to use that as a start point. Besides, the treatments probably don't get rid of the cancer completely until very late in the proceedures. That is why there is such a horrible failure rate for the people who quit early or have a long break in treatments. Once you start, you want to finish in one shot if possible.

Last day of treatment is when you start counting.

KENT-CASS, Don't know if you had any Lymph nodes removed in your neck, but the scar tissue is stressful in itself! Feels thick and tough under the skin and drives you crazy thinking it is possibly a swollen Lymph node. Every ache or pain you get in your neck is cause for panic. Cant imagine if I get a sinus infection and have a lymph node actually swell up in my neck!

When I am not worried about that, I am worried about every breath I take. Unfortunetly, new lung cancer is common in patients treated for SCCHN. The new tumor might be a second Primary which is actually better for prognosis than if it is a recurrance of the original Squamous. But, even if it is a recurrance (locally or distally) the longer it is between original diagnosis and recurrance effects outcome prognosis and/or success. You want to put as much time as possible between finishing treatment and any new cancer. Not to mention any dental problems. And you want to catch it early! Unfortunetly, you can't control any of it so you just have to hope you make it a couple years at least and feel good about that.

Then you have the fact that the radiation itself can sometimes induce a new sarcoma of the head and neck. And that any person who has had SCCHN is 20 times more likely to have a second cancer diagnosis period.

I know this is a bunch of scary info, but I think it is important to know as much as you can about what you are facing, what you are looking for and what your options are if it happens. Knowledge is power as they say. I know others who have gone through our same treatments who NEVER search online and never did throughout the whole process. They are far less worried than I am and I am jealous somewhat. I am sure the doctors prefer their attitudes too. But, that is not my personality type. Most of the people who are actually on these boards WANT as much information as possible! If they didn't, they would be out living there lives instead of searching for any answers they can find... good or bad.

I am very glad to have this board. It has helped me the entire way. Although sometimes I wish I just believed the ENT doctor when he says "you are cured" and put it all behind me forever!

Lymph nodes
No, they didn't remove either of my tumors- only cut me and took a sample of the upper-tumor. Rad and chemo shrank them both. Did ask the ENT about removal, and he said he could, but it was his opinion the better option was the treatment. Just coming off the second COLD, post-treatment (Cephalexin). It was just a hyper-mental thing, thinking the tumor(s) was back. I had read about the likelihood of radiation causing tumors to develop, also, and that is very problematic. And, it is one of the reasons I figure where I'm at, now, just might be the time between rounds in this fight. Then again, I do believe I can win this fight, so, maybe...

kcass

soccerfreaks said:

No way?
I would submit that virtually ALL of us were walking around with cancer prior to diagnosis. I cannot imagine the luck of someone (other than a lottery winner) walking into such a situation that he was diagnosed with cancer on the very day it began to exist.

This is precisely why I would consider the diagnosis date the so-called 'start point', to use your phrase. It is precisely then that one begins an active pursuit of ridding oneself of the disease.

End of treatment, I would agree, is another good candidate, although you argue yourself that at any point during treatment you might be 'cured', so to speak. Beyond that, treatment does not end exactly when you might think it does. Radiation, especially, does not end when you receive your last treatment: it continues to cook. So, then, when is your last day of treatment?

It is not worth the argument, really, although it is probably worth pursuing as a point of interest.

Beyond all of that, I am curious about your exclamation that any person who has had squamous cell carcinoma is '20 times more likely to have a second diagnosis period."

I have not heard that before and would appreciate access to your source, so that I can read it myself and evaluate its authenticity. What I find so intriguing about such a 'statistic' is that it seems not to take into account the location of the cancer, the stage of the cancer, nor the treatment provided for the cancer, to say nothing of the time of diagnosis that you seem to casually dismiss.

It happens that I am an SCC survivor, having had half of my tongue replaced along with a radical neck dissection to remove malignant lymph nodes from said neck. It happens that a couple of years later SCC was discovered in my lung. To date, it seems to have been another primary (and that, of course, is my wish: I am now NED for a couple of years, depending on what time you choose to start counting).

But no one I have dealt with ever told me that I was 20 times more likely to have a second diagnosis. No one ever told me that my treatments (and the scans you fail to mention if your intent is to really scare the crap out of people) would cause, or might cause, further cancer.

Those were, I guess, givens. I knew that.

When you speak of those who do not want information, I am not sure who you are referring to, but please do not insinuate that of me, if that was your intent. The problem, frankly, with internet information, and even information that you get on this site, is that not all of that information is correct.

I have been wrong in the past, and may even be wrong in this instance with respect to the 'start point'. But I do my very best to have facts to back up my assertions, via either personal experience or the expertise of others. I do not make up statistics, I do not go out of my way to alarm people, and I also do not sugar-coat the facts as I know them to be.

No way.

Take care,

Joe

Sorry Joe
Well I have to say I was a little hesitant to reply as I did because what I was saying wasn't nearly as rosy as the 95% success you were touting. But I didn't say anything that I haven't either been told, experienced or found for myself in books or on the internet from sources I consider at least moderately reliable. I am a little over one year out from treatment myself. Am I scared... H-LL yes I am scared! It consumes me at times. I am a very active person with lots of hobbies, a wonderful family and many other things that provide distraction from thoughts of the proverbial sword waiting to drop.

I was in no way attacking you. If you re-read my post you might see that. Only providing another outlook from another former patient. Everyones experience is similar, but different in many ways. I have read many of your posts and have gotten much hope from you. If you read my past posts on different subjects you will see that I regularly include excerpts and or links to articles regarding SCCHN advancements and statistics that I feel others may benefit from. I have had the whole gammet of emotions from total fear of death to complete joy in simply being here to watch my 5 year old daughter play... just one more time.

If all you want is people to write in with the "good" numbers and the light most favorable to success then the site moderators should create some rules for posting. As for me, I LOVE the good news I read. But I can't ignore the less than desireable side effects and statistics that are coming out every day along with the good. Hopefully the advancements will keep up with anything I will face in the future and give me options if I become one of the unlucky few that don't have completely disease free success from the horrific treatments most of us have endured.

As far as the "20 times more likely" Here is the paragraph it came from. I have also included the link to the whole article AND if you search around the site you will find very good information and discussion (in my opinion)

...The death rate associated with this cancer is particularly high not because it is hard to discover or diagnose, but due to the cancer being routinely discovered late in its development. Often it is only discovered when the cancer has metastasized to another location, most likely the lymph nodes of the neck. Prognosis at this stage of discovery is significantly worse than when it is caught in a localized intra oral area. Besides the metastasis, at these later stages, the primary tumor has had time to invade deep into local structures. Oral cancer is particularly dangerous because in its early stages it may not be noticed by the patient, as it can frequently prosper without producing pain or symptoms they might readily recognize, and because it has a high risk of producing second, primary tumors. This means that patients who survive a first encounter with the disease, have up to a 20 times higher risk of developing a second cancer. This heightened risk factor can last for 5 to 10 years after the first occurrence. There are several types of oral cancers, but around 90% are squamous cell carcinomas.

http://www.oralcancerfoundation.org/facts/


P.S. - I really wasn't trying to be mean OR arguementative. If it makes everyone happy, I will just go back to lurking.

ratface said:

Survival rates and recurrence
Initial survival rates for head and neck cancers are grouped together by statisticians because there are so few cases. Remember we only represent 3-4 percent of all cancers. Yet there are multiple sites for head and neck cancer to originate and they all have individual variables. Some variables are size of primary tumor, thickness of primary tumor, stage of primary, metastisis to nodes, and distant sites, age, physical and emotional states, race, and HPV status. The most comprehensive study used is outdated information from a 1987 study that always states that we fall somewhere into the 50/50 category for five year survivability. The same stats are used to determine recurrence.

I went back this morning and reread what Brian Hill posted on his site at OCF about the 20 times more likely for this cancer to re-occur for the first two years. I would hate to disagree with Brian. The man has been nothing but a strong advocate for awareness of this awful disease and could certainly produce documentation. He goes on to state that we fall to 13% after the 2 year mark. Between 3-5 years appears to be the sweet zone. According to Brian as a function of statistics that begins to rise after five years since the more time for something to occur gives it more probability of occuring.

I have personally been told by one oncologist that my chances of cure was 80%. His collegue within the same office told me that recurrence is around the 20% mark. I personally believe my chance of survival is around 60% based on reading, applying my known variables and asking oncologist questions.

I recently had a neck disection. I read prior to the operation that my chances of not making it out of the operating room alive were 14%. Yet this statistic did not know my age or physical condition or other medical issues or medications I was taking. I personally think stats are a starting point and only you can plug in the variables and arrive at a guess.

We are all looking for an answer that dosen't exist. If you look at the thousands of individual studies done across the world's hospitals they all report in categories such if this person had these variables we estimate this percentage to be his/her chances. So your individual chances are really a formula which accounts for all your variables and treatments which would then spit out a number. Perhaps someday someone will come up with one, something like a mortgage calculator.

MD Anderson Study
A nurse gave me an article which I no longer have but I remember reasonably well. A few years ago they did a study to determine the merit of induction chemo for head and neck. Survival rates were not a primary goal but were monitored. The two year post-treatment milestone was significant in that later recurrence was minimal. Happy Holidays, Rich