Last week an author I follow announced on his Facebook page that a recent scan indicated that the radiation treatment he had undergone for stomach cancer has not been effective and the cancer had spread to his lymph nodes. Almost immediately people began to comment offering a wide variety of alternative medical cures this author should have done or try. It was utterly predictable. How do I know? Because I experienced the exact same thing.
In September 2009 I was diagnosed with malignant melanoma of a significant depth that increased the odds that it had metastasized to my lymph nodes so I had a 5 hour long sentinel lymph node biopsy. Three years later I was diagnosed with uterine cancer and had a hysterectomy. In both cases the cancer was detected early enough that no further treatment other than surgical removal was necessary. While my doctors , nurses and hospital staff prepared me for the realities of surgery, nothing prepared me for the harsh realities of being a cancer patient.
No one warns you that, if you get cancer, a friend and even a family member may abandon you out of fear of their own mortality or simply a selfish need to not be in close contact with someone who triggers painful memories. In the season of life when you most need support from people you would rightly assume would provide it, you discover that these few individuals have distanced themselves from you. The relationship you thought you had been building for years turned out to not able to survive your cancer crisis. The good side, at least for me, was that a few casual acquaintances stepped up and came along side of me offering encouragement and prayers, if only for a season. I still tear up in gratitude when I recall their kindnesses.
But far more prevalent are the people who, unsolicited, offer you advice on how you should be treating your cancer. First it was too much sugar, followed by exhortations to not eat “white foods” or that my body was too acidic and I needed to make it more alkaline. One Ob/Gyn doctor I saw reduced me to sobs in his office by stating emphatically that my cancer was due to my lifelong consumption of animal fats. Had I tried Kangan Water? An all raw vegetable diet? Did I know all fruit was cancer causing? I’ve had people tell me how they would have self treated my types of cancer despite the fact that surgery saved my life. The worst was the referrals to the Truth About Cancer series. Several times a year I received invitations to watch the series by friends who believed I would somehow benefit from completely disregarding my doctor’s treatment plan and learning the truth from a biased man who has no education, career or research credentials in medicine at all.
There was a dawning realization of how much victim blaming is at the core of this advice. You wouldn’t have gotten cancer is you had not eaten sugar/meat/processed foods/starchy foods/etc. You wouldn’t have gotten cancer at all if you had been drinking this special water or only organic vegetables. And if cancer comes back, it’s because chemo will kill you and you chose to get it. Everything about your cancer is your fault and while that may be true of some cancers due to exposure to asbestos or smoking, 2/3rds of cancer is genetic luck of the draw. And even if true, no one needs to hear that while struggling with a possible life-and-death crisis.
Being a fact checking person, I did research many of these suggestions but what I kept discovering just how lacking in peer reviewed science these supposed cures were. There was an emerging pattern of “experts” who had no experience what so ever in the field of cancer research, some were outright quacks and con artists. I followed research citations to their original sources only to discover fraudulent manipulation or outright lying about the data. There was a lot of fear mongering and victim blaming associated with these alternative medical treatments. No one warns you what happens when you reject people’s beliefs about the causes and cures of cancer. I’ve been asked, “How much are you being paid?,” implying I was a paid shill for Big Pharma. I rejected the conspiracy theories that the pharmaceutical industry knows the cure to cancer but is hiding it in order to make more money on chemo, radiation, etc. and that made me a stooge of the evil Big Pharma. To believe that tens of thousands of people employed in the pharmaceutical industry will die their own deaths from cancer or watch beloved family members die of cancer simply to protect the ability to make an unholy profit from toxic cancer drugs says far more about the people who believe this garbage than the alleged conspirators. But say that and someone will advise you to “get out of the Matrix”.
I am not alone in my observations. Steven Thrasher, in a recent article for The Guardian titled “Don’t tell cancer patients what they could be doing to cure themselves”, wrote that he had, “.. been hearing from friends with cancer and other serious illnesses that they are overwhelmed when concerned people lob suggestions at them for homeopathic remedies they ‘should’ be doing.” Like Steven, I no longer believe people have good intentions of trying to be helpful when they suggest these remedies. Steven considers it “an act of violence every time someone suggests a simplistic, unproven and fantastic cure for another’s cancer.” Harsh phraseology but probably accurate when one considers that encouraging people to reject their doctors’ medical expertise and treatment plan can lead to death. My oncologist once told me that if HIPAA hadn’t prevented him, he could introduce me to patients of his who eschewed conventional, proven treatment for their cancer, sought alternative medical interventions, bankrupted their families and returned to him with the cancer so advanced that it was beyond treatment. All he could offer was palliative care. My cousin Larry dismissed his doctor’s plan for his very treatable prostate cancer and instead believed his chiropractor’s use of supplements, organic vegetarian diet and spine manipulations would cure him. Larry passed away December 8, 2005.
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Late to the game. I just got back and still recovering from 10 days in the pit… my mother was in hospice and they called and said NOW. I had to take the bus both ways, ordeals there. Take being celiac on the road, not pretty. I did get there in time and was in time. On top of that I have several medical issues and even though I am under a doctor’s care, it is so far out there that a lot of what has turned me around was my own research and experimentation. In the end I got the results. You do NOT believe the quackery and quick-cures that are worthless out there. Massively incredible. I did not buy or try every thing to come along but I did learn what to do, what to eat, and how to become a healthy person again. Relatively healthy. It’s better than it was.
I always turn to: find a good doctor. One that is willing to work with you and help you. Do what you’re supposed to. There may be things that help along the way but western medicine usually does know what it’s doing. If you’ve walked the way already and know some good practical ways to cope with the treatments and side effects, those are good to pass on. Not the miracle pill or stop taking your chemo and eat this instead. Heck, when I went into diabetes (type II) I had a lot to learn by myself. A diet plan and ‘here’s how to check your blood sugar and run your meter’ isn’t what I call teaching you how to manage diabetes!!!!!
I am considered to be ‘cured’ of type II diabetes. I told my doctor very quickly HE could call it that but I consider it just in remission and waiting to pounce again. It’s just better managed. That was four hard years living it, then figuring out how to control the diet better to return the numbers. I agree with what a previous poster said… type II, you are still making some insulin and have insulin resistance. Type I, you’re not making insulin. You can make it more managed but that’s it. And yes I do eat Ceylon cinnamon with my carbs and cut way back on the same and got to target weight. Those and a more active lifestyle have helped return good numbers. It’s waiting… I know it is.
There ought to be a special level of e-hell for the proprietary diet plans, miracle pills and all that crud. And those that come up with and push the same….
Yup yup…when my mom announced on Facebook that her terminal cancer was no longer responding to chemo and she and her oncologist and husband had decided she would go on hospice she got plenty of well-wishes and prayers. One of her cousins, however, decided then to start posting videos on mom’s page about naturopathic healing, and they were probably from this Truth about Cancer deal. My mom ignored it, too tired from the pain medications to care. But I outright told this cousin to stop posting these and respect mom’s decision (she did, thankfully, but without comment).
It is infuriating not only for the patient but for close family members who have been on this journey and watched their loved one’s deterioration for someone to pop up and say “oh but you can totally cure it like THIS” and spout a bunch of BS. I commend you for doing your research and following up and correcting people, especially while you were probably going through treatment. I don’t think I would have the patience.
My patience wore thin a few times. I blocked people on Facebook who kept promoting the Truth About Cancer series.
Oh my gosh. As someone with chronic back pain, I totally understand. Everyone has an opinion on what I should or should not be doing. Essential oils are not going to work for a degenerating spine. Yes, I’ve tried tons of things. And how dare I turn to opioids for pain relief – don’t you know how dangerous those are? I know some are just trying to help – “Have you tried…?” – but it does get frustrating after a while. This is my body. I see a regular doctor and a pain clinic doctor. We are doing what we believe is best for me at this time. End of story.
I often say that if you listen to the “experts” then everything is horrible for your health.
Fruits are acidic and destroy your teeth. Vegetables might still have feces on them or be too rough and tear up your system. Bread is sugar and wheat which is bad for you. Pasta is just sugar. The air is polluted. The water may be full of lead. On and on. If you listen to people say what will kill you or destroy your body you realize you’re not allowed to consume _anything_.
When people say something is bad for you I respond, what are you talking about, everything is bad for you!!
I’m doing a genetics degree, and, I can assure you, we don’t know how to cure cancer. If we don’t, I doubt ‘big pharma’ does, since it’s a disease of mutated DNA.
I don’t understand people that can walk out of a hospital, knowing a life threatening cell mutation is happening in their body and CHOOSE to do nothing about it. Or who believe that changing what you eat will make the mutation go away – once it is there, it is there. You might stop it growing MORE (unlikely) but getting rid of it is much harder.
I will admit I have limited sympathy for people who deliberately and knowingly subject themselves to carcinogens – Cigarettes, sun beds, etc. Asbestos is a grey area because the people using it DIDN’T know. So they weren’t to blame. My FIL had asbestosis, but refused to give up smoking. When he died, he died of a systemic infection that started in his lungs. When they autopsied him, he was riddled with cancer throughout his entire thoracic region. The asbestosis I sympathised with, but it used to drive me crazy when he’d spend 30 minutes on a nebuliser to treat one of his many chronic chest infections, then immediately light up a cigarette the second he took off the mask. He brought it on himself. His death could have been years in the future but he CHOSE to continue abusing his body with cigarettes and alcohol, and was barely in his 60’s when he died. The cancer had obstructed his stomach and he was literally a walking skeleton when he died. I firmly believe the cigarettes accelerated the progress of his disease. As a result, any children LeHusband and I may eventually have will never meet their paternal grandfather.
It is my opinion that however you FEEL about a cancer victim – whether you believe it self-inflicted or not, you should never SAY it. I never told FIL how I felt. We supported him in whatever he wanted us to.
I don’t think it is WRONG to offer advice – ‘I found X food really helped relieve my chemo sickness’ or ‘You might find the chemo easier if you reduce Y food in your diet’ (chemo affects people in different ways, and these can sometimes be really valuable). Especially based on experiences. If someone else has been through the experience and found something helpful, then share it by all means, but don’t pontificate sanctimoniously about how their chosen course of treatment is WRONG, and how THIS THING will cure them. Let a person choose their own course of treatment and offer only support to their choice. If you have a valuable insight or something that might help, then offer to share it. But they should be the one to choose how or if they accept it.
There is definitely a mentality that people get cancer from doing or not doing something. My mother is a two time lung cancer survivor, followed by a bout of breast cancer. To me, she is an inspiration. She has so much support to offer others, primarily the assurance that they are not alone. However, there is a prevelant belief that anyone who has lung cancer was a smoker and therefore did this to themselves (my mother was not a smoker and in actually the majority of lung cancer cases are caused by environmental factors.) She got so tired of dealing with that attitude that she now hides that part of her past from people. When a co-worker was diagnosed with lung cancer, my mother wrestled with whether or not to share her history with the other woman. She finally did, but what a world we live in.
Just today someone told me that genetics “loads the gun” but we choose to “pull the trigger” by our lifestyle choices.
As a skeptic, it burns me to the core to hear all this BS spouted at patients. This is the hardest time(s) of someone’s life and you’re going to BLAME them?! Hell no. Not to mention if it’s not coming from a doctor or a scientist, it’s probably bullshit…and even then it’s questionable sometimes. The best (and only) advice I have is the stock reply of “Thank you for your concern” and ending the conversation before you punch them because otherwise they never shut up. The ONLY advice you should EVER give a patient is to keep up, keep going and get some rest because unless you are them or their doctor, you don’t get a vote.
Cancer is an insidious disease that has no one cure, no one treatment, and no one cause. Sadly, too few people realize this (and the same few don’t realize if “Big Pharma” had a cure, they would charge billions for it and happily cure people because the cure would be worth far more than the treatment).
There is a fairly simple reason behind all of these quack “remedy” recommendations, lifestyle changes, etc.
People simply need to believe that “bad” things don’t happen to “good” people, that it “couldn’t happen to them because they do/don’t do XY&Z”.
It “has” to be the victims fault SOMEHOW, because otherwise it could happen to anybody and how would that be fair?!
The simple truth is, really really bad stuff can happen to anyone no matter what. It’s very hard for us to accept that and do we rationalise and develop cognitive dissonance.
You see it with cancer “cures”, victim blaming of sexual assault victims, in the “Mommy wars”… breastfeeding vs bottle, feeding organic food etc. Everyone has their “talisman” which they believe will prevent bad things happening.
Your story is so inspiringand so accurate. Evidence based medicine for the win.
Stumbling on this late to the game, but I find that this happens a lot these days. I don’t have cancer, but I do have a mental illness (Generalized Anxiety Disorder) for which I take medication, and it seems like EVERYONE has an opinion on it. “You just need yoga/exercise/meditation/nature!” (Some of) Those things might help the symptoms, but they won’t fix a chemical imbalance in my brain. “It doesn’t cure you!” No, but it keeps me functional. Would you tell a Type 1 diabetic to stop taking insulin because it won’t cure the underlying disorder? “If you HAVE to take medication, you should be on Medication X, not Medication Y.” I tried Medication X and it was a horrible fit for me, the benefits were negligible and the side effects awful. I know my medication is slightly “higher risk” than Medication X, but it also has the benefit of, y’know, actually helping me instead of hurting me.
Look, I know that people have their concerns about the medical industry, and I know that some of it is cultural and based on some not-proud history of medical science. But can we at least agree to stop ramming our opinions down each other’s throats? If a patient chooses to go with chemo, or psych medication, or whatever, that’s THEIR CHOICE and people they barely know shouldn’t be trying to make it for them.