<p>I know many here have had cancer, or have/had family members with cancer, and I have some questions. I’m afraid my questions will seem insensitive, but please believe me that I’m asking so that I can become MORE sensitive and gain more understanding. </p>
<p>Mostly I want to know why a diagnosis of cancer is so different from any other diagnosis of a really horrible disease. There are plenty of other diseases that are sometimes cured, and sometimes fatal, yet it seems to me that cancer is in its own category. I’ve dealt with some pretty horrific medical things in my family, and we’ve had to navigate the healthcare system on our own, build our own teams of physicians, do our own medical research, etc. Lots of trial and error. Lots of wasted time and money. The few people I know of with cancer have all been treated very well (at least that’s how it looks to me from the outside), by teams that are already “put together” by cancer treatment centers. I think it’s a wonderful thing!</p>
<p>Another thing I don’t understand is why cancer treatment centers include all sorts of holistic treatments such as nutritional counseling, music therapy, relaxation, guided imagery, meditation and yoga. From what I understand, these things help just about anyone’s health, so why are they so common and integrated into the care for cancer patients, but not for other types of patients? </p>
<p>What am I missing in my understanding? Please help me “get it”! Thank you.</p>
<p>I’m sorry you are going through this. Even in SE FL, we have CA centers, where care is coordinated. Many people arrange to get a second opinion in a large medical center where they have family. If someone has pancreatic Ca, for ex., they are usually referred to the local expert. In some cases, people are cared for out of state, where the expert for their CA resides.</p>
<p>I was 31 when diagnosed. I was working in a hospital at the time, and was surprised when the head of the hospital called me to say he had coordinated all my physicians, with dates of appointments (within 2 days). My boss had mentioned my situation to his wife, and this physician, who had never spoken to me, took it upon himself to be my primary. At a horrific time, this man was a godsend. Frankly, my supervisors and peers were scared. Another intern in my field had died the year before. I was the youngest patient in my oncologist’s office. I tried to be as stoic as I could, and only my oncologist ever saw me cry (1x).</p>
<p>I do believe that one’s mental state helps one get through the rough times. If therapy, a support group, yoga, mediation helps, great. Nutritional counseling is a given. Spouses and other family members benefit from therapy. I’ve known several oncologists that use therapy as a means to deal with the stresses of their work.</p>
<p>I think cancer is “so different” because it seems, sometimes, to be so random. We like to think we are in control of our destiny and our health, but cancer reminds us that we are not.</p>
<p>I wonder if it is because there are more funds to back up the comprehensive approach to treatment. </p>
<p>I have a friend who was diagnosed with ALS 12 years ago (she has, thankfully, had a remarkably slow progression of her disease). ALS is always fatal. It is just about the most devastating diagnoses that anyone can imagine. You are slowly robbed of all of you motor control, speech, and eventually breathing and lung function. Death is always preceded by months to years of infirmity, disability and inability to work or care for yourself.</p>
<p>When my friend was diagnosed, I was shocked at the lack of coordination (for lack of a better word) of her care. I thought for sure that her neurologist would assist her with mental health support, social work and family therapy, etc. It wasn’t like that at all. he went for a visit every six months to see your her disease was progressing and then was sent home. Even equipment was left for the family to figure out. The ALS Society was helpful but the family had to make contact with them and initiate all the help they got. There were support groups but they were hard to find and hard to go to for someone who is not ambulatory. I guess I thought that the medical team would gather around her family and help with all of the associated issues that came along with this devastating illness.</p>
<p>She is still fighting after 13 years. She is confined to a wheelchair, has very little ability to speak and cannot move independently at all. She has visiting home health aids around the clock but they pay a lot of that out of pocket. It’s tragic.</p>
<p>I thought the book “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee was one of the most interesting books I ever read. I developed a much healthier respect for cancer, and the story of attempts to conquer it over the years are fascinating. It does tell you something about how the current system of funding and research dollars are allocated.</p>
<p>Cancer is different from most other diseases for several reasons. Off the top of my head here are a few:</p>
<ol>
<li><p>Cancer is deadly. Cancer has been around for many thousands of years, but it’s only been within the past few decades that we’ve made much progress in successfully treating it. So the old notion of Cancer = Death is still lurking out there, deeply ingrained in our culture - still frightening people, even if it is no longer quite so relentlessly true as it once was.</p></li>
<li><p>Cancer is common. It’s not some rare disease in a far away land, like say Ebola virus. It’s all around us. Everybody knows someone who has come down with cancer and died of it. If you live long enough you will know many people who have died of cancer.</p></li>
<li><p>Cancer is mysterious. What causes cells to go south and turn into cancer cells is still only imperfectly understood. There are many different kinds of cancers and many different causes. </p></li>
<li><p>Cancer is “weird.” And by weird I mean that it’s so strange and unnatural that, rather than say being directly attacked by some invading outside microbe, in cancer your own cells one day decide to go berserk and start growing uncontrollably, eventually killing you. One part of your body goes out of control and ends up killing off the rest of it. Weird.</p></li>
<li><p>Cancer treatments are often very harsh and even life-threatening in their own right. Treating cancer is not like treating strep throat - take few pills every day and you’ll feel much better in two weeks. Not so for cancer. Some cancer treatments are very disfiguring. Most cancer treatments consist of some combination of brutal drugs or medical procedures that often work by killing off the tumor only slightly faster than they are killing off the patient - with the hope that the patient will win the “race.” Facing cancer therapy often frightens people as much or more than the disease itself does.</p></li>
</ol>
<p>Add all these up and it’s small wonder that people don’t regard cancer as they do other disease. Actually, it would more surprising if they did act like it was just any other old common ailment.</p>
<p>I think the OP is wondering why it is treated so differently than other potentially fatal or always fatal diseases. That’s what I took from the initial post.</p>
<p>This is true for a vast majority of serious illness, actually. “Prevention”–while a good idea and something to work for and try your best at–sadly isn’t 100%.</p>
<p>Take, for example, a friend’s mom who had a triple bypass in her mid fifties–thin, non (likely never) smoker, vegan/vegetarian for more than a decade, yoga instructor, no history of high blood pressure or high cholesterol, no significant family history of heart disease. It was caught, quite luckily, through sheer luck, when she mentioned a possible symptom at a doctor’s appointment for something else.</p>
<p>It’s numbers. Lots of people get cancer and so we have great motivation to fix the problem. Not many get ALS. </p>
<p>Lots of patients means lots of approaches and those can include palliative (like meditations and positive thinking) to the idiotic (like strange dietary prescriptions).</p>
<p>That’s what I took from it too. Points 2 through 5 are what distinguishes cancer from other deadly diseases. I can’t think of any disease other than cancer that has all five points apply to it in that way.</p>
<p>I think cancer has such power to inspire fear in the newly diagnosed because, even after all these years, it is so unknown. And random. And unfair. When my husband was diagnosed out of the blue with a Stage IV cancer that is normally associated with heavy smoking and drinking (he does neither), I felt so…angry. A gay friend who had lost his share of loved ones to AIDs told me: it’s not a death sentence. I remember that. It gave me hope.</p>
<p>And Lergnom – I understand your point, but I know as many people who died of ALS as those who died from cancer.</p>
<p>Thanks for asking, dstark – ok – everyone so often, a bad sore throat (fear: recurrence) makes him wake me up at 2 am. He says “make sure D has a nice wedding.”</p>
<p>So stressful, even being a cancer survivor. He has no salivary glands (so much radiation), so he always has a water bottle with him. He contested a traffic ticket once (and won) but the judge saw the bottle and thought he was a typical yuppie. He had to fight to keep it at his side.</p>
<p>I gave blood for him, twice. I’m just so glad he has been able to see our kids grow up.</p>
<p>Well, that’s the thing. ALS and some other diseases are always fatal. Cancer is not. And yes, I agree with lergnom about numbers. It makes sense that the disease that affects the most people would get the most support.</p>
<p>As far as the randomness of it, I’m not so sure. We can all think of people we know that were diagnosed with a cancer that they had no risk factors for but I’m guessing that statistics would support the opposite. it isn’t that random. There are things that we can do to prevent and detect cancers because in many cases, we know the causes of a lot of forms of cancer. We understand more and more about genetic predispositions.</p>
<p>A disease like ALS has no known cause. There is a familial variant of the disease but only 15 percent of cases are familial. The rest is sporadic.</p>
<p>Something about the word instills fear in the heart. You can definitely, have cancer to a lesser affect than a brittle diabetic. people don’t understand necessarily how varied even “regular” diseases can be. So I think its a matter of degree. Also cancer is very obvious in its treatment baldness nausea. The treatment is known for being agonizing. It has a bad reputation as it should have.</p>
<p>I think the worst thing about many cancers is that you can’t know for sure that you’ve really been cured. If the cures (surgery, radiation, chemo) don’t get every single last cell it can pop up somewhere else in your body behaving even more agressively than the first time. </p>
<p>It’s also a problem that many cancers don’t get caught until you can’t really deal with them well.</p>
<p>so far all I’ve had to deal with is skin cancers - though one was a melanoma (in situ) I was assured if they cut it out I could be confident it was gone - though of course I’m clearly more susceptible to new occurrences than others. (Unfortunately I’ve got Celtic skin and a childhood getting sunburned in Africa.)</p>
<p>I think Mathmom nailed it. You can be in remission but you are never considered cured - so you live with it over you for the rest of your life. This is different from most other diseases (even potentially fatal ones).</p>
<p>There is a large statistical difference between the number of cancer and ALS cases in the US.</p>
<p>In 2013 there are projected to be over 1.6 million new cases of cancer diagnosed in the US, and 580,000 deaths due to cancer</p>
<p>Approximately 5,600 ALS cases are diagnosed in a year in the US.</p>
<p>So this is a partial explanation of why cancer gets more research money and more clinical & hospital space allocated to it. But as someone who has worked on the business side of healthcare in the past, “cancer centers” probably would not exist if they were not also not somewhat profitable for the health care organizations that own them.</p>
<p>I think profits made by treating cancer have a LOT to do with the $$$ made available for cancer navigators. There are many conditions we have for life once diagnosed including asthma, COPD, type 1 diabetes, and much more. Many cancer treatments are very expensive, especially where multiple expensive treatments are needed consecutively or concurrently.</p>