Life for me is busy. That is a good thing; it means I am doing well, though it leaves me little time to write about topics that are important to me and post them to this blog. Today, somehow, I found the time.
Also, fingers crossed, scan is Monday. So hard not to think about that cause it is getting closer and closer and . . .
Is Awareness and Early Detection Useless?
The controversy of awareness and early detection concerning its usefulness or uselessness in saving lives is a topic I have been thinking about for years. I have found I am having trouble committing to a firm stance on which side I am on because my knowledge is lacking and the facts are not at my finger tips since I am not a breast cancer researcher or a breast cancer specialist. But, you will see in this post that I am leaning more in one direction than the other. Please tell me where I am wrong if you care to chime in.
For years I have heard metastatic patients say that awareness and early detection are useless in saving lives because it doesn’t prevent the typically agreed upon figure of 20 to 30% of early-stage patients from becoming stage IV. But, that leaves me wondering about the other 70 to 80% who never progress.
I understand that people who say this are probably coming from a place of anger at their situation. Some might have been told: It was caught early! You have a 98% change (if stage I) that it will not return (sometimes this part is left out) in 5 years.
I, too, am that patient. An initial diagnosis of non-invasive stage 0 disease gave me the sense I would be fine. I had the “good" cancer, so to speak, because look how early it was caught. So, yes, I was angry when my stage 0 became stage I and when my disease progressed to stage IV.
Metastatic and early-stage patients desperately want more dollars for research into metastatic disease. I want that too. Their rallying cry, though, asking the public not to buy pink merchandise so dollars spent won't go to more awareness and early detection screening may not be in the best interest of those who will eventually be diagnosed with breast cancer.
(Oh, and yes I know, the pretty, positive, sexy pink party that is associated with these campaigns is a huge problem. And, I know the huge profits some companies and people are making because of this disease is another huge problem. But, I am not going to discuss any of that here.)
I can’t seem to get on the bandwagon yelling: enough with awareness; enough with early detection. It doesn’t work! Because I can’t find proof that it doesn’t work, for many.
Wide spread use of mammography for early detection became available in 1976; that is 42 years ago. Mammography has improved over this time period. (Though, it didn't catch mine.) In looking at the data, the number of new breast cancer cases appears to have increased probably due to an aging population and better screening technology. Also, there are concerns about over-diagnosis of non-life threatening conditions adding to the increased number of cases. Some knowledgeable people believe that unnecessary surgeries are occurring due to these ductal carcinoma in-situ cancers that will never be dangerous. I had a radiation oncologist once chuckle at my stage I diagnosis because he was in disbelief that I had a recurrence from stage 0. While true that some DCIS cancers are considered pre-cancer in some circles and may never become cancer, it is also true that researchers do not know exactly which of those will go on to become invasive and metastasize and which won’t. Unnecessary surgeries are a downside but when dealing with a “we just don’t know” scenario, I believe surgery, and perhaps additional types of treatment as well, is the right decision in these cases.
Some patients and advocates say that over the last 40 years breast cancer deaths have not decreased but instead are increasing or are at least remaining constant. On my recent visit to the SEER website, here, the trend in the rate of new cases and deaths per 100,000 people is declining. However, the trend in the number of actual cases and deaths is increasing. (Rate is the amount of occurrences in a certain number, 100,000 in this case. Number is the number of occurrences over an entire population.) Blanket statements saying breast cancer deaths are increasing are not providing all the information. Different variables affect the results of data: aging population, changes in the size of populations, better treatments, better technology. All of that needs to be part of this discussion.
The truth is early detection is only as important as the treatments that follow. Treatments are getting better, longer remissions are happening, and I believe lives are being saved because of better treatments. As treatments continue to improve, I think early detection will become more important. When researchers find out which cancers will metastasize and kill, earlier and earlier detection techniques will continue to be important because people would want to--need to--know if they have breast cancer and if it will threaten their life. Catching it early would certainly lead to a positive outcome once better treatments are completed. Researchers just don’t know enough yet which means early detection and the treatments that follow is the best that can be offered at this time. Hopefully it is saving someone. I want to, I need to believe this is true. With that, I think abandoning the mantra of "awareness and early detection saves lives" at this point doesn’t make sense.
Awareness I think is important as well. People tend to forget or don’t pay attention. People must continue to educate by making others aware of the disease(s) and especially aware of the deadly nature of stage IV. It is no different than smoking. If people keep hearing that smoking is not good for you and could kill you, one day they may listen and quit. Young people who don’t care to listen or have had no one they love impacted by breast cancer may at some point begin to listen and benefit personally from finally becoming aware.
While some breast cancers seem to become metastatic long before a detectable tumor is found--those are definitely in the 30% figure cited as becoming metastatic after early stage—I wonder how many more would become metastatic if nothing were done in the early stages. Of course, I can't prove this but I imagine there would be a lot. And, since a large scale statistical collection of information in a registry such as SEER has only been operating since the 70's, no one can say differently because they cannot state facts.
One thing that appears evident is that present treatments are not preventing the deaths of 99% of those early-stage patients that progressed to stage IV, but treatments are helping many have longer remissions (still in treatment with no evidence of disease). I understand lead-time bias, here, is a factor, but I also know I would not be doing well today nor would others like me if not for treatment. That is progress. Also, early detection in the metastatic setting may prove for a small percentage of patients to have the potential for cure or at least really long remissions with Cyberknife radiation and with use of some newer drug treatments. In those cases early detection is crucial. I hope oncologists will start being more concerned about early detection for metastatic disease.
Unless I can be convinced otherwise, I think the conversation about awareness and early detection should continue while also adding to the conversation more emphasis on dollars spent on researching the cellular workings of breast cancer especially in metastatic disease which is proving to behave differently than early-stage disease. Research dollars must also be directed toward better treatments. All of these things must be done together: awareness, early detection, education of the complexity of breast cancer and specifically about stage IV because it kills, and of course the need for donations. All of these are important. Without each individual piece everyone loses.
Also, fingers crossed, scan is Monday. So hard not to think about that cause it is getting closer and closer and . . .
Is Awareness and Early Detection Useless?
The controversy of awareness and early detection concerning its usefulness or uselessness in saving lives is a topic I have been thinking about for years. I have found I am having trouble committing to a firm stance on which side I am on because my knowledge is lacking and the facts are not at my finger tips since I am not a breast cancer researcher or a breast cancer specialist. But, you will see in this post that I am leaning more in one direction than the other. Please tell me where I am wrong if you care to chime in.
For years I have heard metastatic patients say that awareness and early detection are useless in saving lives because it doesn’t prevent the typically agreed upon figure of 20 to 30% of early-stage patients from becoming stage IV. But, that leaves me wondering about the other 70 to 80% who never progress.
I understand that people who say this are probably coming from a place of anger at their situation. Some might have been told: It was caught early! You have a 98% change (if stage I) that it will not return (sometimes this part is left out) in 5 years.
I, too, am that patient. An initial diagnosis of non-invasive stage 0 disease gave me the sense I would be fine. I had the “good" cancer, so to speak, because look how early it was caught. So, yes, I was angry when my stage 0 became stage I and when my disease progressed to stage IV.
Metastatic and early-stage patients desperately want more dollars for research into metastatic disease. I want that too. Their rallying cry, though, asking the public not to buy pink merchandise so dollars spent won't go to more awareness and early detection screening may not be in the best interest of those who will eventually be diagnosed with breast cancer.
(Oh, and yes I know, the pretty, positive, sexy pink party that is associated with these campaigns is a huge problem. And, I know the huge profits some companies and people are making because of this disease is another huge problem. But, I am not going to discuss any of that here.)
I can’t seem to get on the bandwagon yelling: enough with awareness; enough with early detection. It doesn’t work! Because I can’t find proof that it doesn’t work, for many.
Wide spread use of mammography for early detection became available in 1976; that is 42 years ago. Mammography has improved over this time period. (Though, it didn't catch mine.) In looking at the data, the number of new breast cancer cases appears to have increased probably due to an aging population and better screening technology. Also, there are concerns about over-diagnosis of non-life threatening conditions adding to the increased number of cases. Some knowledgeable people believe that unnecessary surgeries are occurring due to these ductal carcinoma in-situ cancers that will never be dangerous. I had a radiation oncologist once chuckle at my stage I diagnosis because he was in disbelief that I had a recurrence from stage 0. While true that some DCIS cancers are considered pre-cancer in some circles and may never become cancer, it is also true that researchers do not know exactly which of those will go on to become invasive and metastasize and which won’t. Unnecessary surgeries are a downside but when dealing with a “we just don’t know” scenario, I believe surgery, and perhaps additional types of treatment as well, is the right decision in these cases.
Some patients and advocates say that over the last 40 years breast cancer deaths have not decreased but instead are increasing or are at least remaining constant. On my recent visit to the SEER website, here, the trend in the rate of new cases and deaths per 100,000 people is declining. However, the trend in the number of actual cases and deaths is increasing. (Rate is the amount of occurrences in a certain number, 100,000 in this case. Number is the number of occurrences over an entire population.) Blanket statements saying breast cancer deaths are increasing are not providing all the information. Different variables affect the results of data: aging population, changes in the size of populations, better treatments, better technology. All of that needs to be part of this discussion.
The truth is early detection is only as important as the treatments that follow. Treatments are getting better, longer remissions are happening, and I believe lives are being saved because of better treatments. As treatments continue to improve, I think early detection will become more important. When researchers find out which cancers will metastasize and kill, earlier and earlier detection techniques will continue to be important because people would want to--need to--know if they have breast cancer and if it will threaten their life. Catching it early would certainly lead to a positive outcome once better treatments are completed. Researchers just don’t know enough yet which means early detection and the treatments that follow is the best that can be offered at this time. Hopefully it is saving someone. I want to, I need to believe this is true. With that, I think abandoning the mantra of "awareness and early detection saves lives" at this point doesn’t make sense.
Awareness I think is important as well. People tend to forget or don’t pay attention. People must continue to educate by making others aware of the disease(s) and especially aware of the deadly nature of stage IV. It is no different than smoking. If people keep hearing that smoking is not good for you and could kill you, one day they may listen and quit. Young people who don’t care to listen or have had no one they love impacted by breast cancer may at some point begin to listen and benefit personally from finally becoming aware.
While some breast cancers seem to become metastatic long before a detectable tumor is found--those are definitely in the 30% figure cited as becoming metastatic after early stage—I wonder how many more would become metastatic if nothing were done in the early stages. Of course, I can't prove this but I imagine there would be a lot. And, since a large scale statistical collection of information in a registry such as SEER has only been operating since the 70's, no one can say differently because they cannot state facts.
One thing that appears evident is that present treatments are not preventing the deaths of 99% of those early-stage patients that progressed to stage IV, but treatments are helping many have longer remissions (still in treatment with no evidence of disease). I understand lead-time bias, here, is a factor, but I also know I would not be doing well today nor would others like me if not for treatment. That is progress. Also, early detection in the metastatic setting may prove for a small percentage of patients to have the potential for cure or at least really long remissions with Cyberknife radiation and with use of some newer drug treatments. In those cases early detection is crucial. I hope oncologists will start being more concerned about early detection for metastatic disease.
Unless I can be convinced otherwise, I think the conversation about awareness and early detection should continue while also adding to the conversation more emphasis on dollars spent on researching the cellular workings of breast cancer especially in metastatic disease which is proving to behave differently than early-stage disease. Research dollars must also be directed toward better treatments. All of these things must be done together: awareness, early detection, education of the complexity of breast cancer and specifically about stage IV because it kills, and of course the need for donations. All of these are important. Without each individual piece everyone loses.
I grind my teeth when I hear "early detection saves lives." Yes, I think you are making a valid point. The problem, for me, is that I think it's misleading. When I hear it, I mutter: "and it may save yours. Or it may not. Nobody knows." I think it actually encourages a blithe disregard for the serious nature of breast cancer. I have a terrible family history in terms of cancer, which I may have related. Nonetheless, when I was diagnosed I said to my doctor - well, they've come a long way in terms of breast cancer research, so I'll be fine, right? I know that uneducated opinion was based on all of the pink nonsense, including the early detection mantra. Now that I know more, particularly about my own diagnosis, I know better. Maybe I will never progress, or maybe I will.
ReplyDeleteOf course, I am also the type of person who researches everything to death, that being how I cope. So maybe it's the bias for me of wanting to know about reality, as opposed to some who just want the pretty pink picture.
But if I could change the mantra, it might be to something more along the lines of: you have a much better chance at long-term survival if it's caught early. So go get examined regularly to improve your chances. And be aware that there are many different type of breast cancer, and some have much worse prospects.
Yes, I know, that's too many words for most people. But the feelings of betrayal that many have when they progress, after thinking they did everything right, caught it early, did the appropriate treatments and so on - I'd hate to be in that position, and I don't think it's fair to encourage a disregard for reality. That doesn't work out so well, as a general rule.
Just my thoughts, anyway.
Cathy S.
I completely agree with you. The “early detection saves lives” is causing people to misconstrue it to mean it will save all lives. This needs to change. Like you said early detection “may save yours. Or, it may not. Nobody knows”. I, like you, also wanted the truth and saw through the pink haze because of my research. If people want the truth they will find it. And if they don’t, they won’t. Those people who skip past the reality are the people who believe that this diet or that diet will save them from cancer, that not eating table sugar will stop cancer or that being positive will surely keep them from dying from it. For those people, education is crucial--if they will listen.
DeleteA better tag-line for early detection would be nice, but you are right, people latch on to short and simple.
Cathy, I always love your thoughtful comments! Thanks for this one.