Long Term Survivor Rates
Larry (Cajun) was asking for a reference on long term survivor rates. The National Cancer Institute has a publication from 2001. NCI SEER (Survelliance, Epidemology, and End Results program). Easily found if you google the title. Chalpter 2 is on Head and Neck and has a lot of statistics, based on sex, race, age, where the cancer is, etc. They base their findings on relative survival which is "When 5-year relative survival is 100%, a patient has the same chance to live 5 years as a demographically similar cancer-free person." For instance for tonsil survivor rate is about 45% at 10 years.
I agree with John (Skiffen) who said a lot of this doesn't matter. It depends on each of us individually, but I'm a numbers geek, so I found this interesting. Also the survivor rates have gone up with new treatments, etc. and this was completed in 2001.
I'm actually looking at these numbers from a positive viewpoint. Many of you probably have already found this book and I don't mean for this thread to be a negative thing if anyone doesn't like seeing these types of numbers.
With that I'd like to reference another article by Stephen Jay Gould. He was a professor at Harvard in paleontology, considered at the top of the scientific community. At 42 he found out he had a stomach cancer that the median length of time for surviving was 8 months. He studied his condition and was excited becuse he knew how to interpret statistics. He wrote a short article on it "The Median Isn't The Message". Google that title and you'll find it. Very interesting perspective on having a positive outlook. BTW he lived to be 60.
Positive thoughts going out to everyone!
Greg
Comments
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Studies & Percentages
Greg, I have seen those articles all of which tend to be rather old and out dated. I haven't really seen a lot with newer updated statistics to include the newer chemo cocktails (or combinations of) nor the newer type of IMRT (although that might just be more precise on what gets zapped).... Another factor to throw in the mix is the HPV+ variable.
I would tend to think historically that the 2001 statistics were of an older subject range and one that was more than likely tobacco related.
I know this has spurred debates and conversations before (HPV+ - Tobacco), and I totally don't want to get started on that.
It is what it is, some of us have dervived cancer through many forms and more than likely not just one specific variable, but a combination of many.
Lance Armstrong (BTW the Tour De' France starts July 3rd) is a prime example. His attitude and philosphy is that if he even has 1% of a chance of survival, that's better than nothing and he'll shoot for it....
My comments earlier were coming from the fact that no one can really know when it's your time to go. You could only last a few months post treatment, you could go somewhere down the road from a secondary intitated from current treatment, or you could get run over by a car an hour from now....Shoot for the long haul, and deal with whatever comes up within your control short term.
God Bless,
John0 -
survival stats...a very sensitive subject
New England Journal of Medicine ran an article in early June 2010 comparing HPV and non-HPV three year survival rates for oropharygenal(sp?)cancer based on a 58 month study. Sorry I don't have an exact date but it's available free on the web.
Not recommending it, just saying it's out there. Sometimes I don't want numbers, sometimes I do.
I sent a copy to one of my docs (I don't swim in these waters alone) and will see her next week to ask, "How, if at all, does this apply to me?" (right tonsil SCC w/mets to lymph node). Now is one of those times I'm ready to hear numbers, ever reminding my self, "it's just numbers." This is a sensitive area. I try to be real careful and protective for Vince's sake.
Vince0 -
I don't do numbers.friend of Bill said:survival stats...a very sensitive subject
New England Journal of Medicine ran an article in early June 2010 comparing HPV and non-HPV three year survival rates for oropharygenal(sp?)cancer based on a 58 month study. Sorry I don't have an exact date but it's available free on the web.
Not recommending it, just saying it's out there. Sometimes I don't want numbers, sometimes I do.
I sent a copy to one of my docs (I don't swim in these waters alone) and will see her next week to ask, "How, if at all, does this apply to me?" (right tonsil SCC w/mets to lymph node). Now is one of those times I'm ready to hear numbers, ever reminding my self, "it's just numbers." This is a sensitive area. I try to be real careful and protective for Vince's sake.
Vince
I don't do numbers: I don't weigh myself, I don't count calories, I move with traffic, not necessarily the speed limit, I trust my paycheck is right, I am not up on everyone's birthday, and I let the computer balance my check book.
When Mark was first diagnosed and I reserched his diagnosis on line I was alarmed by the statistics. Once we met with a H&N specialist and started learning the details of Mark's case, those numbers changed dramtically. Mark has been given, across the board, by all docs (surgeon, radiologist, and oncologist) an 85-90% cure rate. If after 2 years of scans nothing shows, he is considered cured. (2 years not 5). I find those statistics on the net and in those research articles to be GENERAL, and not SPECIFIC to Mark: young, healthy, positive attitude, non-smoker, HPV-16+, excellent surgeon, excellent radiologist, excellent facility, and, need I mention, excellent support.
I don't do numbers. I do Mark.0 -
Great Post KimbaKimba1505 said:I don't do numbers.
I don't do numbers: I don't weigh myself, I don't count calories, I move with traffic, not necessarily the speed limit, I trust my paycheck is right, I am not up on everyone's birthday, and I let the computer balance my check book.
When Mark was first diagnosed and I reserched his diagnosis on line I was alarmed by the statistics. Once we met with a H&N specialist and started learning the details of Mark's case, those numbers changed dramtically. Mark has been given, across the board, by all docs (surgeon, radiologist, and oncologist) an 85-90% cure rate. If after 2 years of scans nothing shows, he is considered cured. (2 years not 5). I find those statistics on the net and in those research articles to be GENERAL, and not SPECIFIC to Mark: young, healthy, positive attitude, non-smoker, HPV-16+, excellent surgeon, excellent radiologist, excellent facility, and, need I mention, excellent support.
I don't do numbers. I do Mark.
Kimba, I love your post and ditto for me.....except the part about doing Mark:)
My doctor won't give me my own personal cure rate number, he just says that my prognosis is good. When I have asked him for numbers he has told me that the general prognosis is bad but my age, HPV factor, and staging are all favorable.0 -
I feel the same wayJoel4 said:Great Post Kimba
Kimba, I love your post and ditto for me.....except the part about doing Mark:)
My doctor won't give me my own personal cure rate number, he just says that my prognosis is good. When I have asked him for numbers he has told me that the general prognosis is bad but my age, HPV factor, and staging are all favorable.
The doctors told Glenn he has 80%-89% chance of NED after 2 years. That they've treated this before, just like he has it and that the overall statistics include patients with more "advanced" disease. They told us most of the data is retrospective and includes all Head & Neck and many different modalities of treatment. They don't have great prospective data and certainly don't have it drilled down to who got what, how much, exactly where etc. with regards to radiation.
I was disappointed to hear that because I have a love of research data, having been on the nursing research council at my hospital for many years.
I can see now, all that data doesn't mean much. I've been reading a lot of people's stories and the only thing I'm certain of now is how capricious cancer really is.
Glenn tells me he doesn't even consider the possibility of his cancer recurring. That's how he's going to live his life and I think that's fantastic.0 -
Great ThreadJoel4 said:Great Post Kimba
Kimba, I love your post and ditto for me.....except the part about doing Mark:)
My doctor won't give me my own personal cure rate number, he just says that my prognosis is good. When I have asked him for numbers he has told me that the general prognosis is bad but my age, HPV factor, and staging are all favorable.
Thanks Greg for the articles, and I really like reading others opinions on the "numbers" of longevity. But I guess I am a numbers type of guy. Actually, I'm a very competitive sort. The numbers are useful for me because I want to prove that I can beat the percentages/odds in this game called living. I do this all the time in my daily routine now. One more chest press....one more mile on the treadmill....one less stroke on 18 holes...one more something new to try and eat.....knock down one more pin in Bowling than before.....ect. Numbers provide me a goal to reach that's more or less never attainable, but keeps me progressing instead of sitting around thinking about what could have happened, and through the use of numbers, I beat that devil. Keeping a log on my weight, caloric intake, blood pressure, and excercise programing give me a measuring stick to keep up the fight. You folks are wonderful.
Larry0 -
Good Thread
Greg,
Good thread, this topic has popped up before and I am pretty sure, when we first heard the words, cancer. We got on the computer and started our education of the topic, and survival rates. Put ourselves into a depression and found boards like this and had people tell us not to look at the numbers.
I have mentioned before, when I first learned I had Base of Tongue cancer,I looked at the numbers. A neighbor heard what I had, stopped by to talk to me. I usually just waved to him when he drove by. Here, he had tonsil cancer 7 years prior to him talking with me. He still rides by and waves, on occassions, stops and we chat. He is now a 13 year tonsil cancer survivor.
As stated above, we really don't know what is going to be our demise. As mentioned, we can have cancer, but get hit by a bus. If I have learned anything from all of this, is that I now take each day as it comes to me. I am thankful for each sunny, rainy, foggy, cold, or hot day. I can wiggle my fingers and toes, and scratch my nose.
Enjoy your 4th of July weekend.
My Best to You and Everyone Here0 -
Survivor Rates
When I got the diagnosis I looked up the survivor rates also. It scared the hell out of me. When I brought it up to the doctor he told me that everyone is different. He told me that my age (46) and my good health (yea, right) were all positive factors. I get reevulated in 3 weeks. Until they tell me otherwise I am going to believe the tumor is gone and I will go back to work in September. Keep positive.0 -
Larry and all, I have veryCajunEagle said:Great Thread
Thanks Greg for the articles, and I really like reading others opinions on the "numbers" of longevity. But I guess I am a numbers type of guy. Actually, I'm a very competitive sort. The numbers are useful for me because I want to prove that I can beat the percentages/odds in this game called living. I do this all the time in my daily routine now. One more chest press....one more mile on the treadmill....one less stroke on 18 holes...one more something new to try and eat.....knock down one more pin in Bowling than before.....ect. Numbers provide me a goal to reach that's more or less never attainable, but keeps me progressing instead of sitting around thinking about what could have happened, and through the use of numbers, I beat that devil. Keeping a log on my weight, caloric intake, blood pressure, and excercise programing give me a measuring stick to keep up the fight. You folks are wonderful.
Larry
Larry and all, I have very much enjoyed all these posts. I'm more like Kimba, I don't do numbers well so I choose to ignore them...lol. Thanks for posting.
God bless you ALL,
debbie0 -
MarineE5, that was a greatMarineE5 said:Good Thread
Greg,
Good thread, this topic has popped up before and I am pretty sure, when we first heard the words, cancer. We got on the computer and started our education of the topic, and survival rates. Put ourselves into a depression and found boards like this and had people tell us not to look at the numbers.
I have mentioned before, when I first learned I had Base of Tongue cancer,I looked at the numbers. A neighbor heard what I had, stopped by to talk to me. I usually just waved to him when he drove by. Here, he had tonsil cancer 7 years prior to him talking with me. He still rides by and waves, on occassions, stops and we chat. He is now a 13 year tonsil cancer survivor.
As stated above, we really don't know what is going to be our demise. As mentioned, we can have cancer, but get hit by a bus. If I have learned anything from all of this, is that I now take each day as it comes to me. I am thankful for each sunny, rainy, foggy, cold, or hot day. I can wiggle my fingers and toes, and scratch my nose.
Enjoy your 4th of July weekend.
My Best to You and Everyone Here
MarineE5, that was a great post, it actually made me laugh out loud. I agree with you as I'm sure most, if not all, on here would. This site helps me so much and I pray that it helps others as well. I have gained so many friends coming here. Thank you all for taking time to post and especially for the ocassional laugh.
God bless you all,
debbie0 -
I like this threadJUDYV5 said:Survivor Rates
When I got the diagnosis I looked up the survivor rates also. It scared the hell out of me. When I brought it up to the doctor he told me that everyone is different. He told me that my age (46) and my good health (yea, right) were all positive factors. I get reevulated in 3 weeks. Until they tell me otherwise I am going to believe the tumor is gone and I will go back to work in September. Keep positive.
It gets us all to think out loud about things alongside people who know what it is like to allow these kinds of thoughts into your head. I am also 46, am in good health (for what THAT is worth!)and have mixed feelings about these kinds of statistics. The only time my doctor and I discussed my prognosis in these terms was the day I got my initial diagnosis. I asked him to tell me truthfully, since he was the expert, if I should plan on being around for many more years. He answered "yes!" in a very confident way. I decided to put total trust in this man and his training and experience. Since then I honestly never have considered that I might die due to this cancer. Well, a couple of times during chemo/radiation I thought I might, but he was right there to tell me I would make it and things would get better. They have.
The side effects of treatment still suck in a major way, and I DO think about what life might be like if some of these side effects don't get better.
So for now I'll just keep on going in for my monthly "scope down the nose" visits and trying to figure out this neuropathy business.
But for today, I don't think this cancer is going to kill me.0 -
Numbersdavidgskinner said:I like this thread
It gets us all to think out loud about things alongside people who know what it is like to allow these kinds of thoughts into your head. I am also 46, am in good health (for what THAT is worth!)and have mixed feelings about these kinds of statistics. The only time my doctor and I discussed my prognosis in these terms was the day I got my initial diagnosis. I asked him to tell me truthfully, since he was the expert, if I should plan on being around for many more years. He answered "yes!" in a very confident way. I decided to put total trust in this man and his training and experience. Since then I honestly never have considered that I might die due to this cancer. Well, a couple of times during chemo/radiation I thought I might, but he was right there to tell me I would make it and things would get better. They have.
The side effects of treatment still suck in a major way, and I DO think about what life might be like if some of these side effects don't get better.
So for now I'll just keep on going in for my monthly "scope down the nose" visits and trying to figure out this neuropathy business.
But for today, I don't think this cancer is going to kill me.
I never did look at numbers either. The worst for the wear was my wife though. When we met with the docs, the radiologist said approx 90 - 95 % cure rate. The U of Chicago also uses the 2 year not 5 time table. I just have a PMA(positive mental attitude) about the whole thing. I am done and cured, right now I beat the (fill in the blank) and if there is a reccurence we(my wife & I) will cross that bridge it it happens.
David, I dont think about the side effects getting better/worse. If they dont get any better as been said before " the new normal" and life goes on. I still have very linited taste and saliva is slowly making a comeback. I am now 7 months out.
David sounds like you have some doubts? Please clear them out and and considered things gone done and over except for all our follow ups LOLs Prayers for everyone
Dave0 -
Hey Greg. I'm kind of aFire34 said:Numbers
I never did look at numbers either. The worst for the wear was my wife though. When we met with the docs, the radiologist said approx 90 - 95 % cure rate. The U of Chicago also uses the 2 year not 5 time table. I just have a PMA(positive mental attitude) about the whole thing. I am done and cured, right now I beat the (fill in the blank) and if there is a reccurence we(my wife & I) will cross that bridge it it happens.
David, I dont think about the side effects getting better/worse. If they dont get any better as been said before " the new normal" and life goes on. I still have very linited taste and saliva is slowly making a comeback. I am now 7 months out.
David sounds like you have some doubts? Please clear them out and and considered things gone done and over except for all our follow ups LOLs Prayers for everyone
Dave
Hey Greg. I'm kind of a numbers guy too. (I like to know what I have to beat!) As someone said above, the only time my Doctor used numbers was the first visit. He told me that 95% of his patients that have what I had are alive today. He also told me he sees 10 people a year with what I had. At my visit last month he said that he thought that I would have a very positive outcome from this. After my last PET my oncologist even used the word cured. Totally shocked me. I tend to be a little more grounded and take what they say with a grain of salt. I felt very upbeat and optimistic the first 90 days or so after my treatment but find I have been letting some doubt and anxiety creep in now that I am out almost 9 months. Every little abnormality or anything that happens to me I am really tuned into and have to tell myself not to get too worked up. I still see ENT every 4 weeks so it is not long between appointments if I have a question. Today the lymph node where the cancer metastisized to is a little swollen and tender. Not sure why. ENT this Friday. I'll see what he says. Take care.
Mike0 -
Same Here MikeLandranger25 said:Hey Greg. I'm kind of a
Hey Greg. I'm kind of a numbers guy too. (I like to know what I have to beat!) As someone said above, the only time my Doctor used numbers was the first visit. He told me that 95% of his patients that have what I had are alive today. He also told me he sees 10 people a year with what I had. At my visit last month he said that he thought that I would have a very positive outcome from this. After my last PET my oncologist even used the word cured. Totally shocked me. I tend to be a little more grounded and take what they say with a grain of salt. I felt very upbeat and optimistic the first 90 days or so after my treatment but find I have been letting some doubt and anxiety creep in now that I am out almost 9 months. Every little abnormality or anything that happens to me I am really tuned into and have to tell myself not to get too worked up. I still see ENT every 4 weeks so it is not long between appointments if I have a question. Today the lymph node where the cancer metastisized to is a little swollen and tender. Not sure why. ENT this Friday. I'll see what he says. Take care.
Mike
Mike, I'm a year out and go through the same anxiety that you do. Actually I've had a hard time these last few weeks as my visits are a litle further between now.
I have another ENT visit Aug 4th and my first annual PET mid August.
I'm not sure if it's mental or what, but I keep feeling soreness, swelling and stiffness in the areas that were treated. Seems more so than usual, but it's easy to talk yourself into paranoia.
I do notice that the longer between checkups, the more doubt that I have and I seem to think something is going on. I'm not sure how long it takes to get over this.
Anyways, best to you and hope all goes well.
John0 -
Thanks John. Almost startedSkiffin16 said:Same Here Mike
Mike, I'm a year out and go through the same anxiety that you do. Actually I've had a hard time these last few weeks as my visits are a litle further between now.
I have another ENT visit Aug 4th and my first annual PET mid August.
I'm not sure if it's mental or what, but I keep feeling soreness, swelling and stiffness in the areas that were treated. Seems more so than usual, but it's easy to talk yourself into paranoia.
I do notice that the longer between checkups, the more doubt that I have and I seem to think something is going on. I'm not sure how long it takes to get over this.
Anyways, best to you and hope all goes well.
John
Thanks John. Almost started a separate thread to see what kind of symptoms those of us that at this stage are experiencing. Don't think I am letting this get into my head but just trying to keep myself as normal feeling as possible. I think the biggest thing is second guessing whether I should have had the radical neck disection done. ENT said that with or without it he felt the result would be the same. Seemed like a no-brainer to avoid the surgery then but now that the lymph seems to swell and then return to normal I sometimes think that I should have just gotton a bunch of them out as insurance. Best to you as well. Take care.
Mike0 -
Neck DissectionLandranger25 said:Thanks John. Almost started
Thanks John. Almost started a separate thread to see what kind of symptoms those of us that at this stage are experiencing. Don't think I am letting this get into my head but just trying to keep myself as normal feeling as possible. I think the biggest thing is second guessing whether I should have had the radical neck disection done. ENT said that with or without it he felt the result would be the same. Seemed like a no-brainer to avoid the surgery then but now that the lymph seems to swell and then return to normal I sometimes think that I should have just gotton a bunch of them out as insurance. Best to you as well. Take care.
Mike
I didn't have one although it was/is an option. For me there was nothing showing after the fact to warrant one. But that also depends on how it remains after this upcoming PET I suppose. I guess we'll see once I have the upcoming PET. Godd thing on the PET, if it's all clear, I get the port out in February....
JG0 -
All I know is.....Skiffin16 said:Neck Dissection
I didn't have one although it was/is an option. For me there was nothing showing after the fact to warrant one. But that also depends on how it remains after this upcoming PET I suppose. I guess we'll see once I have the upcoming PET. Godd thing on the PET, if it's all clear, I get the port out in February....
JG
today it took me 47 minutes to eat two hot dogs. I will not qualify for next years Nathan's Hot Dog eating contest. Oh well.0 -
Hot DogginCajunEagle said:All I know is.....
today it took me 47 minutes to eat two hot dogs. I will not qualify for next years Nathan's Hot Dog eating contest. Oh well.
CajunEagle,
Sorry, but your 47 minute hot dog feast made me feel good. Misery loves company - I recently went on a family vacation with my aunt and cousins, and found myself feeling bummed at almost every meal, because it took me a very long time to eat less than half of what the others could eat, and they'd finish, then be hemming and hawing, antsy for me to hurry up and give up.
I had a hot dog last week (nitrate-free, nitrite free and corn syrup free - mmm) - and had to laugh, because I had to eat it on a tortilla (no buns for me YET), but, like you, I ATE IT.0 -
I'm second-guessing, tooLandranger25 said:Thanks John. Almost started
Thanks John. Almost started a separate thread to see what kind of symptoms those of us that at this stage are experiencing. Don't think I am letting this get into my head but just trying to keep myself as normal feeling as possible. I think the biggest thing is second guessing whether I should have had the radical neck disection done. ENT said that with or without it he felt the result would be the same. Seemed like a no-brainer to avoid the surgery then but now that the lymph seems to swell and then return to normal I sometimes think that I should have just gotton a bunch of them out as insurance. Best to you as well. Take care.
Mike
Mike,
Just got my 3 month check - of the two lymph nodes previously affected, I only showed activity for one (was an SVU of 9 before, now 2). My doc recommended not going to the surgeon at this time for the dissection, but adopting a "wait and watch" attitude. I go back and forth on what would be best. I tell myself that it was thanks to a swollen lymph node that my cancer was detected when it was (stage IV, but not metastasized to other locations).
Do well0 -
neck dissectionLandranger25 said:Thanks John. Almost started
Thanks John. Almost started a separate thread to see what kind of symptoms those of us that at this stage are experiencing. Don't think I am letting this get into my head but just trying to keep myself as normal feeling as possible. I think the biggest thing is second guessing whether I should have had the radical neck disection done. ENT said that with or without it he felt the result would be the same. Seemed like a no-brainer to avoid the surgery then but now that the lymph seems to swell and then return to normal I sometimes think that I should have just gotton a bunch of them out as insurance. Best to you as well. Take care.
Mike
I am learning to trust those who treat this daily. This is an especially difficult task since I have been dealing with the healing process from the dissection for the past 3 weeks. My ENT said these things needed to go! I followed with out disregard. I have had complications with my dissection. Part of my dissection was insurance, good thing since better than 30% were metastasized! I wish you well!
By the way, the hot dog eating? I assume the problems stem from the rad.The dissection creates loss of facial movement as well. At least in my case. Your lower lip is in the path of the dog and your teeth!
This is such a great place to gather info.Also a good laugh! Thanks.0
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