This was originally published on September 21, 2013. Due to some recent posts in CCWS, this needs to be revisited. Enjoy – again.
On August 31, 2013, my husband’s aunt passed away. On September 2, there was a visitation held at the funeral home. My husband’s aunt had cancer, and it did contribute to her passing. But at that visitation, I was hit with some of the biggest cancer myths I have ever heard. So the following day, I asked my “family” at CCWS to tell me just which myths needed to be dispelled. This blog is based on that post. Thank you so very much to Claire, Brin, Suzanne, Mary, Mardi, Tammie, Barb – you will know which “quotes” are you, and I could not have written this without you. I hope this helps.
Here is the original “question”: “Okay, my friends, I have a question. This is for everybody. After an experience last night, I need to know, if there was one MYTH about cancer or cancer treatments you could dispel, what is it? Please comment here – this is information for an upcoming blog. I was hit with about 9 myths as fact last night and it floored me, that in 2013, one person could be so generously misinformed. Thanks so much – y’all are the BEST!”
The first person to answer me had multiples – and she should know, as she is, unfortunately, a seasoned veteran of the cancer battle. “* Everyone gets skinny and dies.
* All chemo causes nausea and hair loss
* Breast cancer is almost always cured if caught early
* There is one disease called cancer (or “all cancers are the same).
I’ll stop to leave some for others.”
Okay – Myth ONE – “Everyone gets skinny and dies”. FALSE, FALSE, FALSE! First off, many, many cancer patients are given steroids to offset reactions, to reduce swelling, multiple reasons. Steroids cause WEIGHT GAIN, FLUID RETENTION, among other things. There is also a related condition, commonly known as “Roid Rage”, that happens as well. But I can tell you from personal experience, getting skinny if you are on steroids is NOT happening. Some people with certain cancers DO lose copious amounts of weight, so that is a possibility, but I believe it happens less often, rather than more. Actually this is two myths, the second being everyone dies. Well, if that were true, no one would be labeled a survivor, would they? In reality, more people die from ancillary illnesses, not the cancer, with pneumonia being a big contributor, because someone with advanced stages of cancer is typically bed ridden, and anyone who is confined to the bed for whatever reason has a higher chance of contracting pneumonia, as well as other illnesses. Each type of cancer has a different survival rate, and it would take pages to list them all here. This is something you can discuss with your doctor – but even “terminal” cancers have a survival rate.
NEXT – “All chemo causes nausea and hair loss” – FALSE! Many types of chemotherapy do cause nausea and hair loss – some rather rapidly, but just as each cancer is unique, because it directly interacts with your DNA (which is unique to you), each person’s reaction to chemotherapy is unique. They can tell you all the possible side effects – but that does not mean you will have any of them. Or you may have all of them. You may experience some of them, and the severity can vary from one round to another. If this statement were ‘All chemo CAN cause nausea and hair loss” it might come closer to the truth, but with the hundreds of different kinds of cancer, and the multitudes of drugs available, this general statement just is not something that can be accepted.
THIRD – “Breast cancer is almost always cured if caught early” Oh, how I wish this were true. There are so many variables, not the least of which is YOU. Cancer interacts with our cells. Since each one of us is unique in our DNA, each and every case of cancer is unique. Finding any cancer early is a good thing, as it usually means that it is the least involved because it hasn’t had a chance to “take over”. But there is no justification to this statement. Look at it in this simplest form – you and I both have a headache. I take two Tylenol and my headache vanishes, you take two Tylenol and 2 hours later you are still hurting. Apply this to breast cancer – the treatment that works for you, may do nothing for me, or I may be allergic to a component, or my body may simply not react well to it. There are women who were originally diagnosed with breast cancer (men too) 35 or 40 years ago, and they are okay. There are women and men who were diagnosed 3 months ago, and have already gone on. There is no set in stone for this, or any other cancer. Generalizations in this case do more harm than good.
FOURTH – “There is one disease called cancer (or all cancers are the same)”. There could not be a statement further from the truth. In my July 9, 2013 blog, “A Monumental Task”, I included a partial list of cancers. There are hundreds. They are not simply one disease that strikes different parts of the body, although there are cancers like that. But Annie’s breast cancer, and Joy’s thyroid cancer, and Jim’s prostate cancer are three totally separate illnesses – not simply one illness that attacked three different parts of the body. You tie in all the different cancers, and their “subordinate” cancers, along with accompanying illnesses, and different treatments, and you have a large library full of volumes of information. Cancer is actually the “heading”, the types of cancer are the “books”, and the variations of those types are the “chapters”. Actually, each and every cancer is different, because each and every cancer interacts with the person who develops it – so anyone who makes this statement is blissfully unaware, and in my opinion a danger.
My next contributor writes: “Thyroid cancer is the “good” cancer. WTH is ever good about cancer? Of course, mine had spread to the lymph nodes as well, so that complicates things…but living without a thyroid for the rest of your life is no fun either. They purposely keep your TSH low, in an attempt to not promote further cancer growth. Low metabolism and no energy results. However, it is true that few folks actually die from it and that part is the only “good” I can see. She pretty much answered her own post. What can possibly be good about cancer? I feel quite certain that no one has EVER left the doctor’s office after a cancer diagnosis and said, “Oh, thank the Lord, I’ve got cancer!” Or, “I’m SO HAPPY, the doctor just told me I have CANCER!” Yeah, the absurdity of those statements pretty much answers this one. No, folks, I don’t think there is a “good” cancer. Sorry to burst your bubble.
The next contribution: “Cancer has been brought on by the patients themselves. I heard this one countless times when I got diagnosed. It really broke me and I’m so thankful that my family and oncologist explained to me that cancer is horrible and it wasn’t my fault – I didn’t cause it.” I’m going to address this one first off by referring to the previous paragraph – there is no good cancer. I do not know any person who wishes for bad things. I do not know anyone who wishes to be sick, who strives to be broke, who desires starvation. Of all the horrid things to say. Yes, it is true that lung cancer can be attributed to smoking – but as a former smoker of 35 years I can tell you that I have never in my life lit a cigarette with the thought “gee, I hope THIS one gives me lung cancer”. Lifestyle can contribute to the likelihood of some cancers – but I don’t know anyone who goes through life trying to get cancer of any kind. That’s just asinine.
My next contributor brings up a great point, “……….. the thought that skin cancers aren’t all that dangerous, or common. This is the fastest growing cancer in almost all age categories. Melanoma is the most common cancer in young adults, 25-29, and second most common in ages 15-24. More people are diagnosed with skin cancer in the U.S. than any other cancer, and unlike most other cancers, the incidence is increasing (800 percent in melanoma for women & 400 percent in men from 1970 to 2009) And to dispel the worst myths about skin cancer: there is no such thing as a “safe” tan, tanning beds are lethal, and dark pigmented people can get it (Bob Marley died of metastatic melanoma at the of 36 in 1981) I’ll get off my soapbox now…” My first thought is no, don’t ever get off your soapbox. The best way I can think to illustrate this is take a piece of lunchmeat, put it on foil, spread some cooking oil on it, and place it outside on a sunny day, and watch what happens. The illustration we had in a class once was that getting a tan was the exact same “chemical reaction” in the human skin as what happens to the skin on the turkey when you roast it for Thanksgiving. If you leave the turkey in the oven too long, the skin burns. If you leave the human in the tanning bed or the sun too long, the skin burns. Same difference. If you are tanning, you are literally cooking yourself. I will let you all draw your own conclusions – but skin cancer is a virulent, dangerous form of cancer, and it can and does kill. Don’t take it lightly. More words of wisdom about skin cancer: ” …I have always tanned easily. Got dark as a native Caribbean in the summer. Burned, but never badly, and never after I had a “base tan”. I’ve had four cancerous moles removed in the past two years, with additional surgery required for all four – the most recent of which was last week. I’ll be battling this disease for the rest of my life. USE SUNSCREEN, PEOPLE! This is NOT worth a golden tan! “. Also, ” I’ve a friend ……….. she has been getting tanned at the tanning salon regularly. She is naturally very pale and I keep telling her the tan is not worth it. “
From the same person who has heard it said Cancer has been brought on by the patients themselves, more wisdom: “Oh dear! There’s so much guilt associated with this illness and it really drives me nuts sometimes with how much misinformation there is out there. I was also told I should be glad to be taking on others’ karma.. Eh? I’ve got a hard time paying for my own sins let alone others’.” This is infuriating!!!! Old Joe over there, he was a rotten, horrible excuse for a person, and you spoke to him once in 1972, so that’s why you have cancer. WHAT?????? That’s exactly what this statement says – makes no sense at all when you look at it the way I reworded it. She goes on, “Ah, I got another one here. Cancer patients deserve pity. Sigh…” REALLY?????? Pity???? Well, I guess if you look at pity as feeling sorry because a friend is sick, yeah, I pity my friends who have cancer. But lets use a dictionary this time. “Sympathetic sorrow for another’s suffering”. This is the dictionary meaning, and in that case I will say I do have sympathetic sorrow for my friends who have cancer – or any other illness. But in the worldly sense, “pity” is usually walking hand in hand with contempt (this is my experience). Contempt – “the feeling with which a person regards anything considered mean, vile, or worthless; disdain; scorn. 2. the state of being despised; dishonor; disgrace.” I know the meaning doesn’t really do it justice – but I have found that many who say they “pity” someone, do so in a scornful, or disgraced, way. I am the first to admit, by this meaning, that I hold all Cancers in contempt. They are mean, vile AND worthless. I despise them. But you understand my meaning here – don’t pity your friends with cancer – have contempt for the cancer, not the person. Let us not forget, “I was also told by my priest (of all people!) to avoid chemotherapy because it would kill me. Needless to say, I gave him a piece of my mind and never returned to that temple. I mean, if there is treatment out there, I don’t want to be a fool and choose not to listen to my doctors.” My friend has a great mindset here – choosing to listen to medical professionals instead of a priest. Not saying that all advice is bad – but believing a myth can quite possibly kill you. I’m also going to throw my own in here – “Once you let them cut open a cancer, you die” Yes, folks, I was told that – and while sitting in a funeral home, no less, paying respect to a family member who had cancer – although it is unsure if that was her cause of death.
“Some compliments can actually be double-edged swords: “You don’t look or act like you have cancer!” Seriously? Just because I have hair and I dare to laugh in the face of this damn disease? I know most people saying this mean well. It’s not them I’m referring to; it’s the “doubters” & “haters” who often insinuate that we’re not really “that” sick unless we’re bald, curled up in a bed and losing weight without speed. WOW…” All I can say to this is WOW is RIGHT! There are some cancers that have no outward symptoms. A friend has a genetic cancer – chemotherapy does not work for it – so she looks fine! When did Emily Post write “How to Act When You Are A Cancer Patient”? Cause I know a bunch of people who could use that fictitious guide (and quite a few who would rewrite it).
Next post was: “I might not be the best informed person about cancer, but I do know that every cancer cell is different and every cancer patient is too. The one myth that I heard was cancer is contagious once you have surgery for it.” That post goes along with this one: “A taxi driver once asked whether my cancer was contagious…” To this I will paraphrase some of my posts. I was told by someone that a wife had stopped treatment for melanoma, and that was why her husband developed bladder cancer. Also told that once they do surgery on you for cancer, you die. CANCER IS NOT CONTAGIOUS!!!!!! YOU CANNOT CONTRACT IT VIA CONTACT!!! IT DOES NOT TRANSFER FROM ONE PERSON TO ANOTHER EXCEPT THRU GENETICS!!! That about covers these myths. Lets move on.
“I went thru most of my life thinking I was GENETICALLLY not a candidate for cancer. WhooooHoooooo! Lets party! Which we ALL DID for many years…. Several years ago I was bit by an insect under my right breast, but the pinch ( not so much a sting, hit me) right as I stretched. I thought it was a lump. I went three weeks worried to death. I spoke to my older sis about it AND she said I shouldn’t worry as we had no cancer in our family. Turns out we did> My father. He is cancer FREE now but stillllllllllllll….. The point is My sister was WRONG and was so adamant about it and she is SO VERY intelligent. The myth IS that there is NO NEED to worry about CANCER if we don’t have it running rampant in our family. Those myths can kill ya!” Yes, the myths can kill ya! Yes, there are genetic markers for certain cancers – but that is all they are. A marker. Compare them to one of the “Deer Crossing” road signs. All those signs do is say that there is a possibility that you will see deer crossing the road at that point – since the deer can’t read, they rarely cross only at the sign. Same thing with a genetic marker for cancer – it means the components of whatever type of cancer they are testing for are there – it does not mean you are guaranteed to get cancer. Just a generation or two ago Cancer was taboo – if you had it you sure didn’t tell anyone. So finding out your family history can be difficult at times – for cancer as well as other illnesses. Be on the lookout for an ancestor who “just wasted away” – in many cases there was a cancer there. Died of an unknown affliction – possibly cancer. Part of the reason for all the “secrecy” were the myths that cancer was contagious, that only grievous sinners contracted it, or you only got cancer if you “deserved” it. All myths. All dangerous. All still around. Cancer for our ancestors was akin to leprosy. You were completely shunned. So of course, if the doctor managed to correctly diagnose you, you didn’t spread it around!
“Mine is that every person that has cancer has to go through Chemo and Radiation. I did not have it with either of the 2 times I had cancer. OR If you do not go through treatment you do not nor did not have CANCER.” That’s just like saying everyone who has teeth needs braces. It is true, Chemo and Radiation are treatments for cancer. Again, there are cancers that are confined, and are surgically removed. There are some genetic cancers that simply do not respond to any treatment but surgery. There are multiple other variables – this assumption only goes to show your ignorance, and that those of us trying to spread awareness need to try harder. Also in the generalization category are “I can’t get cancer, I’ve never smoked.” “My grandma died of cirrhosis (sp) and never drank a day in her life. that is classified as a DRINKING cancer.” “Just like lung cancer is defined in most people’s minds as one from someone who smoked – and that is not always the case. It’s the misconceptions and stereotypes that are the most destructive. Because if enough people believe them, and promote them, they seem to become believable.” “I never had chemo either. Chemo generally doesn’t work for type of cancer I had, unless it has moved to the organs. I did have radiation, but it was iodine radiation and works in a different way. Again, many people automatically expect you to have chemo and have your hair fall out. Mine did get thinner…This past surgery, I did not have the radiation. Was it because I had less risk of leftover microscopic disease? No…it was because my cells will no longer uptake the iodine radiation. There are so many variables with all of us. And even if we have a very similar cancer to another, it does not mean the same treatment will work the same way for both.”
This next part is snippets of the further conversation. I’m not going to interject any ideas here – just remove the names. It’s actually pretty self-explanatory:
Person 1: “When I lived in S.C. my oncologist said to me he didn’t want to do a bone marrow test because all I’ve been through? I’m still here because all I’ve been through! When I told him chemo wasnt in my vocabulary, he said he’d monitor me! Keep in mind he’s a cancer Doctor and out of the blue after running gene test he asked me How long have I know? A very empty and stupid question! Needless to say I didn’t go back, but after he spoke to me so ignorantly 2 masses grew and I wouldn’t let him near me! Sad we are in 2013 and this nonsense goes on by oncologists? To all my sisters here! Its amazing the things people will say & do to us that’s so wrong! We all are born with cancer cells and for different reasons they may or may not go awry! I’m glad we have each other! And great minds! Love ya all!”
Person 2: “Here’s another…. that you ALWAYS lose your hair with chemo ( palliative ) . My ex had bladder cancer. He got radiation and chemo. He did lose some of his body hair, but had ALL the hair on his head, and a full beard when he passed.”
Person 3: “I had no idea we were born with cancer cells…have they proved that ?”
Me: “The easiest way to explain it is that every part of our bodies is made up of cells, from our hair to our fingernails to our skin to all our organs. Cells don’t live forever – they are forever dividing, with the older ones “dying” – ie, the hair that falls out, the skin that peels. The best illustration of this is when a snake sheds its skin. We humans do that too – but just a little at a time, so it isn’t noticeable. When a cell does not split properly, it is considered mutated. Mutated cells are the cells that become cancer cells. So yes, we all have the ability to have cancer cells, although we will not all have cancer.”
Person 3: “Wish cancer was a myth had the worse chemo there is…2x a week and radiation 5 days Fridays 3 rods inserted a special glow in the dark…you could say….did not lose my hair either…funny thing though I am 59 and 2 gray hairs on my temple…“
Me: “I know where your gray hair is – I have it. I so wish it were a myth too. But until it is, we have to get the word out – the correct information, about how it really is – so people can stop believing the crazy stuff they spout when they simply don’t know.“
Person 3: agree so are we all born with cancer cells ?
Me: Yes and no. We are completely made up of cells. Think of it like when you buy a bag of chips, and there are some in there that aren’t perfect. Sometimes our cells do that – for whatever reason they become imperfect. An imperfect cell has the ABILITY to become a cancer cell. But it may not. That, as far as I have been able to figure out, is about as far as the scientists have gotten. They know that an imperfect cell is required for cancer – but they aren’t sure why the cell becomes imperfect in the first place – or why it can happen to you and you get cancer, but happen to me and nothing happens. Have I confused you?
Person 3: No that I can picture good chips bad chips some turn brown…and turn into flesh-eating monsters…
Me: Exactly! While some just turn brown and sit there. That’s where the mystery is.
Person 3: ohhh okay thanks Margie…have a truth or myth..does stress cause cancer..or bitterness… or maybe cause that chip to turn…
Me: Stress is a factor in everything, because it affects our bodies – and so affects our cells. Go back to the chip illustration. Stress is like dip. If you put too much dip on a chip, it breaks. If a person is under too much stress, it weakens the cells, which means they can break and become irregular. Make sense? But that doesn’t mean that stress causes cancer. Stress can cause nerve disorders, heart trouble, high blood pressure, hair loss, all sorts of disorders. But we do know stress can make you sick – but it all goes back to not knowing the why or how. Stress on an already broken cell may or may not cause cancer. But it is proven in studies that stress slows healing. But they have not proven stress causes cancer – neither have they proven it doesn’t. My best guess would be that stress plus other factors may contribute – but it all goes back to whether or not that broken cell becomes cancerous.
Person 3: ohhhhhhhhhhhhhhh now that makes perfect sense..to much dip..guessing why one day at a time…makes so much sense as well…Just this if people would just see this and stop and slow down…maybe why we know so many life is so different now…
Me: Part of it IS stress. Think about it – our great grandparents for the most part ran farms, or the little store. They grew a lot of their food – and if you have ever had a garden you know that’s a good bit of work. Plus they had cows and chickens – it wasn’t all that easy to just run to the store. A lot of the chores of daily life were just that – chores. You didn’t flip a switch to wash dishes. In a lot of cases, you went to the well or the creek, got a bucket of water, took it back to the house, poured it in a pan, boiled it, then you could wash and rinse dishes. If you were “rich” you had a pump in the kitchen. Modern convenience is great – but it has made us lazier I believe.
Person 4: But, Good Lord, if had to work as hard as they did on top of what I’ve got going on right now, Marge…I’d be six feet under right now. Talk about some tough folks! We are all wimps compared to the generations before us
Me: True. I know some people now who think I work too hard because I don’t have a dishwasher!
Person 4: NC State Basketball Coach, Jim Valvano, had a very interesting take on all of this, and I agree with him wholeheartedly. The way he explained it was that we all have cancer cells within us. But weakened immune systems, environmental issues and stress can cause those cells to go awry. He was under extreme stress with an NCAA investigation that caused him to leave the job he loved, even though it was never proven that he did anything wrong. A short time later, he was diagnosed with cancer – tumors all over his body.
Me: Also, the medical profession does not say anything unless they prove it fifteen ways and backwards. So even if they think stress causes cancer, or if they think it contributes, they won’t say anything until they have it in stone.
Person 3: I was blessed to see that in action…family farm in Missouri…my grandmother had that pump and that was in the 60s…a out house and all the cows went to the pasture pond to drink…the BEST FOOD I EVER TASTED….
Person 4: AND…it also has to do with the individuals. What affects one person one way affects another in a totally different way…
Person 3: That’s true too…
Me: Which is one of the big reasons research into cancer is so difficult – because many researchers now believe that just as no two people are the same, neither are any two cancers.
Person 3: Is that why some pull through and some don’t…when they have the same label as in cervical…I mean no two people alike
Me: That is part of it, along with how quickly it is found, how it reacts to treatment – all sorts of things go into it.
Person 3: that I knew …but never thought of it as in no 2 people are alike…interesting oh yeah DNA…brain fog..lol now that I know is not a myth (brain fog)
Me: That’s okay – we call it part timers here. But yes, DNA plays a part. Lifestyle is a factor. Environment is a factor. Other illnesses can even be a factor. That’s why it is so hard, and so complex – there are all sorts of variables that come into play with all illnesses – but even worse with cancer.
Person 3: I just really never thought of it like that…all those factors…That is truly interesting now I understand Awareness more so…
That’s pretty much the conversation from that night. I did edit a little – and since I didn’t ask their permission, I didn’t use full names for anyone. I know there are hundreds of other myths – and not just about cancer. Everything from why you have pimples to how you can (or can’t) get pregnant to how you can induce your own labor to how to cure aging. The whole key is awareness. Awareness leads to knowledge, and if you have knowledge, even just a little, you know that these myths are just that. It would be a shame if someone did not get treatment that could have eradicated their cancer because of a myth. And we have seen these myths aren’t just from people who have no reason to know – doctors, pastors, priests – all have been mentioned here as propagating myths about cancer. That is scary, and it must stop.
Thanks so much for your time reading this – please take an extra second and share, so together we can blast away the myths.