Please help me understand why Cancer is so different

Parent Cafe
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<p>I don’t really know how to respond to your post. I don’t think anyone would even begin to be able to understand cancer until you have it. I have been dealing with stage 4 colon cancer since January of 2007. To say that it’s been a bumpy road would be an understatement. It has affected every part of my life in a negative way. I had a recurrence in 2009 and live with fear every day that it will come back again. I don’t expect to have a long life and don’t really think of the future very often. Most of the people in my support group that were diagnosed when I was, are gone. I live every day with terrible side effects for all of the various treatments that I have endured over the past six years. These side effects prevent me from working and from maintaining an active social life. </p>

<p>I guess I’m not sure what you’re saying.</p>

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<p>Viewer, </p>

<p>Take care. Wishing you the best.</p>

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<p>I think everybody has met somebody with cancer and fear that it could happen to them or their family. Other potentially fatal illnesses, I am aware of and still afraid of if I think about it, but it’s a lot easier to distance myself from thinking ill ever get it. I think it’s easier for people to think “oh, I’ll never get ALS, only other people get ALS” than it is cancer-- with cancer we’ve all seen it at least once or twice and know nobody is really safe. We are faced front and center with the reality that it happens to anyone.</p>

<p>My best childhood friends father died of cancer when we were in high school. I’m aware my grandmothers entire immediate family was killed by breast cancer and she was the first survivor. My aunt was the first one not to get it at all. I almost just assume I’m going to have it someday, or my spouse. I think, why would I be so lucky to escape this when it happens to so many others? I am just as sympathetic to other illnesses, but i don’t fear them as much, even if I should.</p>

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<p>Viewer, and others–sending good thoughts and wishes your way.</p>

<p>What I think the OP is talking about, though, is the class of other very, very debilitating, often fatal diseases. I’m sure any of those (like ALS, and there are many others), also feels like “you can’t imagine what this is like.” </p>

<p>I think trying to parse why cancer is “worse” than other debilitating, deadly diseases reflects really the fact that cancer is more common. As has been said, we all have lost someone we cared about to cancer, and will again. We all have a statistically significant chance of developing some form of it. Many of us will die of it. So we think about it. and worry about it.</p>

<p>Most of us do not know someone who had/has ALS, lupus and other auto-immune diseases, and many other rare diseases (possibly whatever the OP is dealing with), so I think really, that’s the answer. I think that paradoxically, we fear what we think we know about, not what we have read about but not experienced.</p>

<p>and as far as money, again, its a matter of numbers. With cancer being so, so common, there’s going to be far more money directed that way for treatment.</p>

<p>And I’ll add to that, publicity. Breast cancer, for instance, gets far more money than other, equally dangerous and common cancers, because of publicity.</p>

<p>Edit: crossposted with Ema.</p>

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<p>I think how common it is is huge. There is a lot of money pot into cancer research and state of the art treatment centers because a lot of people are invested in beating it and doing what they can to help.</p>

<p>As an example of an extreme opposite case, my brother recently got diagnosed with a genetic degenerative eye disease that leads to irreversible legal (not complete) blindness. He’s the third person I know in my extended family to get it, but it’s so rare that there are only 100 new diagnoses each year in the United States. He’s flown to Florida and California to learn about clinical trials that haven’t started yet and that he’s probably not eligible for and is hoping to get into a study in Paris because that’s the only hope for any kind of treatment. It’s just not something that benefits as many people as a cancer treatment.</p>

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<p>I think that garland (post #24) absolutely nailed it. Cancer is in the news often and “everybody” knows someone who has had cancer. My father died of lung cancer. He was a non-smoker and we know now that it was work-related and that he was exposing himself to toxic chemicals for decades. My mother died of ALS and, believe me, I often wished that she had a brain tumor instead because some cancers are curable. ALS is ALWAYS fatal. If you have no experience with ALS and have not personally witnessed an athletic, vital person waste away, not be able to swallow, speak, hold her head up, move limbs, but still have her mental faculties intact so that she knows what’s happening to herself, you really can’t understand what this does to that person and the family. At least we have some sense of what happens when someone has cancer, how the cells in the body go haywire. We have no real concrete idea of what “causes” ALS. But I understand as a practical matter why so much money is poured into cancer research. Statistically, there are so just many more cases of it.</p>

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<p>Thank you for the good wishes.</p>

<p>As a cancer patient I am jaded enough to think that so many of these cancer centers (such as Cancer Treatment Centers of America) set up to “help” cancer patients are really in the business of making money from treating cancer patients. Obviously, it is a huge business…every aspect of it.</p>

<p>As you can see from the number of cancer patients dying each year there are not a lot of clinical trials and late stage treatments that benefit too many folks.</p>

<p>Yes, of course, there’s attention given to cancer simply because of the huge number of people of all ages and all walks of life that get striken every day. One out of two men and one out of every three women will get cancer in their lifetime.</p>

<p>I am in an online support group and if you read it every day like I do you probably wouldn’t have a problem understanding why cancer is “different” and receives so much attention. Young families are affected by cancer deaths every day.</p>

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<p>Interesting perspective, OP.
I worked at Sloan Kettering for many, many years and saw things that would probably cause PTSD if I wasn’t geared the way I am. I also had a BIL who died from ALS. I have to say that his death was the most agonizing I have ever witnessed as momof3sons described. Absolutely horrible.
I think the incidence of cancer has a certain impact on the public but I think other factors are at play. For one thing, cancer is just not one disease…there are a host of malignancies that can affect any organ. But, most people perceive them all as ‘cancer’. I also think that not all cancer patients have the same psycho/social/economic/political support that you describe and that certain types of cancer patients have access to.</p>

<p>Also, there is a multitude of diseases, many genetic in origin, that are simply devastating to families. Their victims often die early and not much effort is put into research let alone support. They are the so-called orphan diseases. Again, it is a numbers game.</p>

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<p>My husband (who studies cancer) often tells people everyone will get cancer if they live long enough. And indeed students often find undiagnosed cancers when they doing dissections in the anatomy lab.</p>

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<p>SpiderPlants, it is interesting to me that you posed this question of Cancer vs. other diseases. </p>

<p>I have always noted the difference in support from Breast Cancer to other Cancers. I always feel sorry about the difference in support people with “other cancers” seem to get. You never see “The Price is Right” do a special show for survivors of cancer in general etc. I guess it is what was said up thread, the money behind it, and the PR it gets. I am glad that it is that way for Breast Cancer, but wish there was similar support etc. for other types of cancer and as the OP said, other potentially fatal diseases.</p>

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<p>I think the commonness of cancer is a big part of it. Also, because cancer manifests itself in so many ways, probably all of us have had a symptom that caused us to ask, “Could this be cancer?” We don’t really think this so much about other diseases–except, maybe, for heart disease.</p>

<p>My wife is a doctor who works in cancer research. It is an extraordinarily difficult disease to treat–partly because it is not just one disease. Tremendous progress has been made on some cancers–on others, very little–and it’s not just about the money spent.</p>

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<p>Thank you all for your responses. I’m glad some realized I wasn’t making a comparison between the cancer and other diseases, or a comparison between going through cancer treatment and treatment for other diseases. I was talking about the differences between how a patient or family is treated and educated about the disease, the ease of finding a medical team and resources.</p>

<p>I belong to a group where every member has a very ill spouse, with many different diseases (and some with multiple diseases). Those dealing with cancer have “teams” already set up, appointments already in place at the time of diagnosis, etc. One friend’s husband had tests done in the morning, had a diagnosis in the afternoon, and started treatment in the evening. The whole team was on board and they didn’t have to research to find which doctors would do what, who would treat what aspect, etc. They started out with (on top of all the negative emotions) a sense that <em>someone</em> knew what was going on, <em>someone</em> was there to talk to, <em>someone</em> had the treatment plan under control.</p>

<p>By comparison, a friend’s husband has MS. There’s no cure for MS, there’s barely any treatment for MS. And like cancer, most people know someone who knows someone with MS. It took them close to a year of going to multiple neurologists to get a diagnosis, and weeks before treatment started. The husband is very disabled, full-time in a wheelchair, going blind, etc. They had no help finding a “team”, including neurologist, physiatrist, neurosurgeon, neuro-opthamalogist, podiatrist, urologist, gastroenterologist, nutritionist, physical therapist, psychologist, durable medical supplier, wound care specialist, compounding pharmacist…and the list goes on. Each of the doctors is in their own practice, most of them don’t know each other (if they do, it’s a coincidence). Getting appointments with each one takes weeks, and that’s just to find out if this particular doctor knows anything about treating MS, and if they’re any good at it. Patients and families are left to figure this out by themselves, constantly, as the disease progresses. </p>

<p>What I’ve learned from several posts here is that the difference in how it all works probably is because there’s more money in cancer treatment than for others. I’ve never seen an “MS Treatment Center” or “ALS Treatment Center” where everything’s all in one place. I hope someday that will change, because “figuring it out” shouldn’t be so hard.</p>

<p>Thanks again to everyone for your replies. I wish health and happiness to you all.</p>

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<p>This post may be a little disjointed, as I feel I have many diverse things to say about this topic. Sorry in advance.</p>

<p>What many do not realize the the relative promise of current cancer research and the improving state in cancer. The media has put out story after story of debilitating cancers that have devastating medical and social effects. </p>

<p>The reason why “cancer” strikes an unparalleled fear in so many people is the fact that so many people have had cancer, and second-hand horror stories are reinforced by media accounts of many cancer patients. </p>

<p>The truth is that the prevalence of these “horror stories” is statistically in decline. Mortality rates for various cancers are falling ([Cancer</a> Trends Progress Report - Mortality](<a href=“http://progressreport.cancer.gov/doc_detail.asp?pid=1&did=2007&chid=76&coid=729&mid=#trends]Cancer”>http://progressreport.cancer.gov/doc_detail.asp?pid=1&did=2007&chid=76&coid=729&mid=#trends)). One can speculate on the reasons for this, but they likely include increased awareness and increased availability and effectiveness of treatment. Cancer should not strike the same fear today that it may have 10 years ago. </p>

<p>And let’s be real. The average person is scientifically illiterate. And by scientifically illiterate, I do not mean that they are simply ignorant of the intricacies of biochemical mechanisms and the complex etiologies of various diseases. I mean that the average person tends to shun statistics, numerical thinking, and also tends to be distrustful of many researchers and physicians. This illiteracy has caused many to ignore recent gains in cancer research and has thus perpetuated a fear.</p>

<p>The perpetuation of this fear is one reason why cancer is treated differently. The fear causes media attention, and it mobilizes many nonprofits and interest groups to push for more research funding and awareness. There is also a population factor in cancer’s “exceptionalism.” But I believe that the principal factors causing its exceptionalism are the profits involved and the susceptibility of the general population to hearsay and media sensationalization.</p>

<p>To those who may be diagnosed with cancer: have logical hope. There is increasing valid evidence that cancer is not an immediate death sentence. </p>

<p>To those with other less-publicized conditions: use the same tools that interest groups and media outlets involved in promoting cancer awareness/research to encourage a similar exceptionalism that may one day lead to lower severity of a particular disease/condition</p>

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<p>Spiderplant–my SIL has a severe, debilitating, life-threatening auto-immune disease which attacks many different organ systems, and I think her experience is much like what you describe. Every facet means searching out treatment independently by her and my brother.</p>

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<p>My husband was a cancer survivor long before there was this survivors-club mentality. For those who are affected by it, know that you’re not alone if you don’t want to walk or put a sticker on your car. The gift of normalcy goes a long way.</p>

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<p>There are something like 10,000 cases of MS diagnosed in the US each year. That’s less than 1% of the number of cancer diagnoses. It’s not just that there’s more money in cancer treatment–there is just a lot more demand. So there are many more people who specialize in treating the disease. My dad had MS. Sadly, there just weren’t that many treatment options.</p>

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<p>Agree!!! Even in people my age there is still a lot of mythology that surrounds a cancer diagnoses. One example is the idea that once surgery is performed, the cancer will spread. How many times have I heard that “Once they open you up, it’s over…”.
I also believe that there is an almost complete lack of understanding that cancers are different from each other. Literally different, not just in different parts of the body. My friend has a close relative with Kidney cancer. It has spread to his pancreas. Even some of his own family will tell people that he has pancreatic cancer. He doesn’t. He has kidney cancer in his pancreas. There is a big difference. Even if you explain this to people, they will dismiss what you say. The fear overpowers the logic and reason.</p>

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<p>Note also that, before PPACA is fully implemented, having had cancer automatically makes you individually unable to purchase medical insurance.</p>

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<p>^^Also, that all instances of one type of cancer are the same. You see this with discussion of breast cancer, and the “early detection is the best prevention” mantra. It’s become apparent that all kinds are not the same. Some can be cured even when found comparatively late, while others are so deadly that it’s almost impossible to get them “early.” Playing into that is the amount of women who swear early detection saved their lives, when quite possibly what’s been removed might never have threatened them.</p>

<p>Like you say, fear trumps reason, and knowledge.</p>

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<p>I suspect that cancer is also easier to diagnose than a disease like MS or ALS, which has a lot of symptoms that could mimic that of other disease and lacks a clear identifying trait like a massive tumor. </p>

<p>I agree that even patients with rare cancers don’t always benefit from a wealth of resources. I have a close friend with a rare type of brain tumor that almost always affects children (she’s in her mid twenties). Most of the resources she looked into were either for people with more common cancers (especially breast cancer) or for childhood brain tumors. She’s been doing a lot of the legwork in tracking down sources of support herself and with the help of friends and family</p>

<p>The good news is that advances in medicine mean that her chances of survival are far, far greater than they would have been even a decade ago. At that point, her diagnosis was a death sentence (as, sadly, it still is for very young children). Thanks to a new surgery, her current prognosis is very optimistic.</p>