• Is the survival rate really as dismal as I keep seeing written, mostly on official sites.

    Asked by emmett11 on Sunday, April 21, 2013

    Is the survival rate really as dismal as I keep seeing written, mostly on official sites.

    High percentage of non-survivors after 5 years, 5 years seems to be the bench mark?
    I don't know where I fit in or how to calculate how to fit in except that it can't be good now with brain mets from my lung cancer.
    My Onc's comment was "it's not good", he didn't elaborate and I didn't push, so maybe a bit of ignorance has kept my spirits up until very recently when I started looking a little closer at the data.
    I'll see how it looks or feels really, after my first few chemo infusuions, now I am getting the feeling that I am almost afraid not to ask, as I feel as though they are relieved when I don't ask for a prognosis.
    Any one care to comment that has been where I am now and has gotten by this stage?
    Dx'ed 12/08/12 Aden stage IV.

    11 Answers from the Community

    11 answers
    • Kathy's Avatar

      Hi! I don't know the specifics regarding your cancer but I can say that the percentages are only a number and I've seen on here that I think the statistics can be up to five years old before they are published. When I was first diagnosed mine had a 90 percent chance of NOT coming back but it did. For me that statistic gave me a false sense of hope. I guess someone had to fell into the 10 percent and that was me! Meanwhile I've been working had with a social worker and a group so that I can enjoy a good quality of life despite any prognosis. A lot of people will say stay positive, which is good - but I've only been able to be in that spot by getting professional help. Take care. I do wish you the best.

      over 3 years ago
    • emmett11's Avatar

      Kathy, thank you for sharing, glad to hear you are moving forward and looking positvely ahead.
      I do have alot of close family support and an extended circle of friends, a 2 sided sword though, thank the Lord for such blessings, however, they take me on as a liability to be cared for in a way I am not accustomed to, uncomfortable in a way to succeed my status as figurehead, the go to guy.
      While comforting to know I am loved and cared for it is also disconcerting to understand that I am not the arbiter of my future plans, rather ceded that to fate now.
      I am lucky to be sure to have this close circle but also doubly depressesed by the fact that I am terminal and may become a burden on these wonderful people and complicate their lives beyond what they may anticipate.
      Venting here I guess, I am not freely able to have this discussion among the "circle" or even my blessed wife, I am encouraged to banish the thoughts.
      Thanks for the input, I'll keep on looking up those statistics and double check the notes.
      God be with you in all you do.

      over 3 years ago
    • carm's Avatar

      Hello, I am an oncology nurse, and on this site survival rates continue to be a topic of hot debate. I can tell you that as a nurse who has worked in research, I take no stock in survival rates. I do not depend on them nor do I use them to gauge a patients overall prognosis. I don't know your age, but I am over the speed limit (55) so I can tell you a bit about these predictions. Before Nixon was in office, no one really talked or knew much about cancer. It was a disease not spoken of and rarely researched the way that it is now. When Nixon started the "War on Cancer" it really came out among the medical community. Before that war, if a man at the age of 67 came in to see his doctor complaining of stomach pain. Then, there were no CT scans, no MRIs, etc., so the doc felt around and probably found a mass the size of a league baseball that the guy probably had for years, gave the patient maybe 24 months at best and thus his 5 year survival was 0%. The guy succumbs at 70. Now today with colonoscopies, virtual colonoscopies and the scans, that same guy gets his annual exam and colonoscopy at 60 years old, and the doc finds a tumor the size of a pea. They biopsy and diagnose as cancer. He starts treatment and lives to the same 70 year age. Now his survival rate is 200%. However, the mortality rate stays the same. He is just aware of his disease 7 years earlier. What matters is not the survival rate, but the mortality rate. If that gets better, then survival rate is verified. I suppose if you needed to know, statistically you could find out where you are in the big picture. However, cancer is a personal individualized disease and your cancer is specific to you. It stems from a mutation in your DNA, and unless you have an identical twin, only you have that DNA; so how can anyone know how long your DNA will survive? No two malignancies are the same, and anyone giving you a survival rate is giving you an estimate based on general information and not on your specific disease. Lung cancer is the number one cancer among men and women in the US and because of it, there are more studies out there than for other cancers. At a time when chemotherapy first came about, Nitrogen or Mustard gas based chemos were the gold standard but now, these days we are moving away from chemotherapy and more toward "Targeted Therapy." During my career, I have worked in and still work in End of Life care. If there is one thing that I have learned there it is that people die when they are ready, and not because of a statistic. At some point in their life, their will to live becomes a will to leave and they just move on. At one time in research, that survival rate was used as a prognosis tool...now it is used more to sell drug. Just live your life until you don't want to anymore, until you get tired of the medications or the day to day ritual that accompanies anyone living with a chronic disease. No one knows you, like YOU!!! Stop looking at numbers and look at the sunrise and the beauty of the world. When it is time to take flight, you will know it by the feel, and not by a percentage. Good luck to you, Carm RN.

      over 3 years ago
    • Ydnar2xer's Avatar

      Carm stated it soooo well, as did Kathy. I am like Kathy--my cancer was never supposed to come back--not according to statistics! I had b/c the first time in 2003; did EVERYTHING my onc suggested--lumpectomy, 35X radiations, 5 years of Tamoxifen--yet I beat the odds and got a different type of b/c in the same breast last August. So much for statistics! My onc was dumbfounded that he'd be treating me again...so I wouldn't put much faith into statistics. What I'm doing is to make use of the time I feel good--to say those things I have always meant to say to loved ones.

      Cancer has given me a whole new outlook. I am no longer willing to overextend or prolong a one-sided friendship, for example. I need to get support and attention from my friends, just as I support and am attentive to them. If I am the one who is constantly emailing, calling or setting up lunch dates with a "friend"--well, I draw the line on that, now. I want to make the best use of the time I have right now.

      Good luck to you and you have my best wishes for living your life the way you really want to---and living it long enough---so that you can leave this world, satisfied with its closure. Isn't that all what anybody wants to do? Take care.

      over 3 years ago
    • GregP_WN's Avatar

      I will add add to what others have said so well. I was diagnosed with squamous cell carcinoma in a tonsil in 08. I looked up on the internet anything I could find on it. I had never heard of it. I read all the information where 5 year survival rates were low, chances of survival if it returns was lower yet. All of the information is basically gloom and doom. I had to wait 2 months before I could get in to see my Surgical Oncologist about having it taken out. I dumped all this information on him I had been reading and he asked me, You have been on the internet haven't you? Then he told me to stay off the internet, it was information that was not personalized to me.

      I am doing fine after 4 years, was diagnosed stage 3, and according to what I read, I shouldn't be here.

      Stay positive, stay strong and keep fighting until your number is up. That's the only number that matters.

      over 3 years ago
    • Peroll's Avatar

      emmett, I have personally hit the 5% end of the probability 5 times in a row so the way I look at it is that someone has to be in that 5% (o4r what ever the number is) that makes it so it migh as well be me. As others have noted the probabilities are at least 5 years old as it take that long to ge survival stastics since they define survival as 5 years and a lot has changed in that time so the odds are better than ehat ever you are told or read in the internet. In any case they are averages and as such do not represent any single case so unless you turn out to be that really odd 100% typical person they don't really apply to you. 8 1/2 years ago they probably would not have predicted I wold be alive but I am still here bring a pain in my Drs rears. You can do it too!!!! Good Luckl

      over 3 years ago
    • BoiseB's Avatar

      emmett11 You are very lucky that your oncologist is a little vague. The first words my oncologist (I call him Dr. Doom) is quoting grim stats. To me that is very discouraging, it would be much better if he had said. The prognosis is not good but here are some of the things we can try to make those numbers better. Try to think of it this way. You might have to do some research on your own. Thanks to the advice from folks here I have embarked on research project to find out what is being done for my particular cancer.

      over 3 years ago
    • CherylS@StF's Avatar

      While I'm not a cancer patient, I do have a take on the percentages that are given out for various cancer patients and their lifetime survival. I think almost all of us in life pay attention to the high number of almost anything. We seem to always believe that that number is the most important number. We hear critques on food/movies/designers/brand and yet it all really comes down to our own personal want/like/beliefs. There is another number when percentages are given out and though that number may not be the high number it is a number that exist. It is a number that someone belongs to. There is hope in that number, whether it is 3%, 16%, or 40% it is the number of those who survived 5 yrs out, the number of those who made it past a certain mile marker, a number that gives hope that you are in that low percentage. If you think about it that way then it doesn't matter what the high percentage of those who don't survive are because you in the percentage of those that did survive. Live life, everyday, for however long you are blessed to have it!

      over 3 years ago
    • shopaholic25's Avatar


      I appreciate your comments. Thanks! I never smoked & last year I was diagnosed with lung cancer, stage 4. I got so upset everytime I read about stats, so I finally stopped. I have a gene mutation, and I'm taking Tarceva. I keep praying that it will continue to work. Although I continue to be positive, there are some times when I'm bummed out about this "disease". I never expected cancer, esp. lung cancer.

      Thanks again!

      over 3 years ago
    • labrdor's Avatar

      my husband was diagnosed as non small cell adenocarcinoma stage 4....it has metasized in the brain and lymph nodes. our oncologist is not saying how long. he says it depends on the person and how the chemo works. He also said there is no cure at this point. but the chemo can pro long his life. my husband was diagnosed in february. and i feel the same as u, emmett11

      over 3 years ago
    • mistymaggie's Avatar


      I was diagnosed with small cell lung cancer about 2 months ago--I am 74--I have been through 2 sets of chemo so far and scheduled for a pet scan again before I go to radiation--I tell you one thing, there will be no player in this journey that will fight as hard as I will - Foremost for my Family---
      As I saw on a TV commercial for a cancer institute in PA a while ago --The Lady so apply put it that her DR saw no expiration date stamped on the bottom of her FOOT--

      Carm Thank you again for your SERVICE--Hugs, Wayne

      over 3 years ago

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