The dumbest things people have said to you/about you
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Best of luck, Picksie!
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Joyce............She will probably die.
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NativeMainer:
All good questions. I'm not sure that we will ever have an answer to all of them. I'm pretty sure my own cancer is just genetic and I think the path to preventing it with diet and lifestyle, if one even existed, was obscure and effectively beyond my control...like I would have had to avoid or perform some bizarre sequence of events to avoid it. But I'm skeptical a way to avoid it other than a prophylactic bmx actually existed as my grandmother and I had very different lifestyles and we both still got it in our 30s.
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Someone from church (I didn't know she knew).
She had Surgery 2 years ago, told me last month that she didn't do chemo even though doctors recommended it because of her Ocotype score. It was because of her age (75+); but mainly because her sister in Canada didn't survive Chemo, so in her mind she had the resistance.
I'm glad she didn't tell me when I was doing Chemo. GEEZ!
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Joyce--that would be good to know, maybe a cure for bc????
Piksie--Good luck with the surgery, and may you have a rapid recovery.
Kelly-Anne--Now THAT was a great way for that doc to respond!
WC3--someday all the answers will be known, but not in this or any near future generation will see that.
Superious--Glad she didn't say anything sooner, too!
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Sas-Scatzi- She got a call back after her mammogram, did something holistic so when she went back for ultra sound she was given the all clear.
NativeMainer- wouldn’t it be wonderful to find such an easy cure. I didn’t tell anyone I was going for a biopsy. A friend was going for a biopsy around the same time and had told people. A mutual friend brought her essential oils to use. My friend got the wonderful news that her lump was benign. When the mutual friend found out I had bc she told me I should’ve told her, she would have given me the same oils. She didn’t know my friend did nothing with the oils she was given.
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NM, I have seen my mother, grandmother, and many aunts and uncles die from cancer. Interestingly, most of them had different kinds. I had one first cousin who died from glioblastoma in his 40's and several others who are battling other types, again all different kinds of cancer, even among siblings. All of us cousins are still in our 50's but their cancers started several years ago. So, I was that person, hoping against hope that while we shared a lot of dna, maybe it was something they did that tipped the scale, to set it off, so to speak. I didn't say anything to them but to combat the terror I convinced myself that it was because they smoked, or used strong agricultural chemicals for farming, or both together, or worked in this or that industry, or some other nonsense. I never did that, so I'm safe right? That scared little voice inside tried so hard to make sense of the carnage. So, I try to understand the weird comments when I can. I'm not a bad person, and was truly sad about my relatives' illnesses, but still was looking for a shield. When I got my dx of MBC I thought "How? I ate the veggies and fruit, walked a lot, heck, I didn't even dye my hair...blah blah blah. " Out of that long list of cancer, guess who got the first breast cancer? Yep, and not found before Stage 4.
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Muddling, There isn't anything you could have done to prevent this. I know everyone wants to have the control or try to prevent cancer but you can't. It may have been genetic it might not have been. Lowering risk factors is physiologically and maybe physically good but not going to definitely prevent cancer.
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I think the only thing I could have done to prevent this was to take the girls off no later than 30, which I technically couldn't do as I would have had to pay out of pocket and did not have the money. According to the calculators and equations I can find, the cancer probably first formed when I was between 31 and 34. I was in great shape then.
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Meow, I know you're right. I was just trying to explain my former superstitious thinking and how I tried to trick myself into thinking it would pass me by. 😀
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Joyce--my experience has been that if someone believes something will cure cancer they will believe it regardless of the evidence in front of them. I try to appreciate that they mean well, and try to avoid the subject entirely when I'm with such people.
Muddling--Your family's cancer history is proof that medicine does not know what causes cancer and how it works. It's human nature to want a shield, a protection, against something as scary as cancer. And many people's weird comments come out of that fear. I do understand that and rarely actually respond to the comment when made but respond to the sentiment, the expression of caring or concern, the need for more information, the fear of the same happening to them.But the comments do bother me sometimes, so I come here to blow off that steam with others who understand.And I, too, had those thoughts before diagnosis. When I was diagnosed I was a few years into a regular exercise program, and starting to change my eating habits, but was still overweight so no one ever saw the "right" things I was doing, and they didn't seem to help me anyway! That whole thing really raised havok with depression. So I finally looked at all the research I could find and concluded that, while there may be correlations between overweight and bc, or alcohol and bc, children or no children and bc, that there is no proof that any of those CAUSE bc and I was not going to buy into the whole "people get cancer because of how they live and eat" paradigm and actively fight against that as a form of blaming the victim. All blaming the victim does is take the pressure off the medical community to find cures and preventatives. OK, I'll climb down off the soapbox now.Not sure how I ended up there this morning!
Meow--good points.
WC3--another example of how we do not give ourselves cancer with our life style choices. I was in my late 20's when I had a benign lump removed from one breast. The pathology showed it would have become cancerous at some point. I can't help but think the cancer that was found when I was 48 probably started about that time, too. I was under a lot of stress then, but not as heavy as I was at diagnosis, and definitely more active.So that didn't save me, because we do know that once it's started and gets beyond the ability of the immune system to kill off it will keep growing regardless of everything except the host dying of something else.
Forgive me, I really seem to have gotten off onto one of my rants today!
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There's a blogpost I've just read and it instantly reminded me of this topic... I'm following what's going on here every day, interesting for me, as I'm thinking of the cause for my cancer too...
anyway, I just wanted to post the link https://pinkstinks.blog/2018/08/04/the-ice-cream-a...
I think it adds nicely to the topic here... the BCO user's name is Jojobird
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NativeMainer:
Don't worry about it. We are in agreement :-) Your rant is my rant and I can rant about how I didn't cause my breast cancer endlessly. It was the subject of my first post on here. I had been trying to find some dietary advice for people with active breast cancer because I am doing neoadjuvant chemotherapy and I kept coming across ideology based health guru sites with misleading information, and a blame the victim mentality and Joseph Mercola's site was the last straw for me. His advice starts out ok but then he goes off the deep end. He had better hope he does not end up sitting next to me on an airplane...I have some things to say to him.
He will get to hear all about how I did just about everything he mentions on his website and still got cancer...including avoiding bras with underwires (didn't need one) and electric blankets (fear of catching on fire). He mentions stress as risk factor for cancer but I don't think he realizes his website can be a little stress inducing.
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While for an individual I don't think there's much to be gained from thinking about what caused it, epidemiologists should and do spend a lot of time trying to track what is associated with higher cancer rates - and we know certain things are associated with increased risk of cancer.
There are also statistics on how lifestyle choices impact recurrence and survival rates.
While I don't think it's usually appropriate for people to comment about these things to us, it's not because these factors aren't important. It's that it's not up to them to lecture or finger wag at friends, acquaintances or perfect strangers....I do wish the doctors and nurses at cancer agencies spent more time though speaking about lifestyle choices to reduce recurrence.
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NM, if you were ranting, then rant on! If anybody gives me any "blame the victim" crap I will set them down a peg or two!
Another thing, when I was first diagnosed family and friends said I "should" go to this or that big city, famous, whoop dee doo cancer clinic. At the time I was actually near death and barely able to walk to the bathroom so, yeah, not getting on planes and heading across the country, even if I could afford it which I can't. But they always knew someone who was cured and now running marathons etc etc etc but if want to stay at my dinky little clinic.... Ha ha. I try to laugh but it does get under my skin sometimes. I do the best I can with what I have on any given day and if if isn't enough for them, TDB!
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I think there are people who have reason to believe their life style choices had a role in their illnesses and then there are people who have reason to believe they didn't and they should both be represented but many health and dietary websites neglect the existence of the people who fall in to the latter category who would still like some health and dietary advice applicable to their situation.
Because most of these websites center around reducing risk, and I had a low risk life style which I was fairly vigilant about and still got cancer due to risk factors I could not mitigate such as dense breasts and family history, I found little direction on health websites for those in my situation, and many implications of blame. There really are people out there who think all cancer is 100% preventable and that if a person gets cancer, they did something irresponsible and wrong rather than it being something the person could not reasonably prevent like bad genes or a virus or they happened to be struck by a gamma ray from space at the wrong time.
I ended up seeing an oncology dietician/nutritionist at the cancer center with my health care provider, which insurance does not cover. She was very knowledgeable and I would like to see her again if I can save up the money because I do believe there is dietary advice relevant to me with active cancer in my body but I was not finding it on health websites.
My main concern right now is keeping my weight on during chemo, preventing metastasis if it hasn't happened already, and preventing targeted therapy resistance. I discovered that fatty acids may play a significant role in metastasis but different cell lines seem to respond differently to different fatty acids. Palmitic acid seems bad all around but oleic acid, which was thought to be a "good" fatty acid, causes metastasis in some cell lines and not others but I have no idea what fatty acids would cause my own cancer cells to metastasize. I don't know if I should eat things with olive oil or not. It's too bad they don't do a fatty acid spread test with the biopsied cells to give people more individualized and targeted dietary advice. This is one reason I regret doing neoadjuvant chemotherapy. If I had the mastectomy first I would not be so fixated on my diet spreading it because "the nest" would at least be gone.
I am kind of obsessed with when my cancer first developed...I want the date that bad little cell was born. I want to know if I had hyperplasia and DCIS first and if so, when that first cancerous cell broke out of the duct and stayed out but I will never have the answer to these questions. I can just estimate that it happened between 31 and 34.
I will add one more thing. Doing things the conventionally healthy way did not stop me from getting breast cancer. The tumor formed while I ate broccoli and anti oxidants and turmeric and exercised. It kept growing rapidly after I reduced my sugar even more and reduced dairy. I don't know that it would benefit me much to continue doing much of the same when it wasn't working to begin with. Maybe my diet and lifestyle slowed it a little but never enough, maybe it prevented metastasis but the jury is still out on that. I think what is conventially good for most might not be for everyone. People who change their diets often go from conventionally unhealthy to conventionally healthy but there is a lot of variation in biology and there are bound to be people out there for whome the conventionally healthy diet isn't the best diet for them. Maybe I'm one of them.
Ok I am pumped up on dexamethasone and I will stop now.
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JaBoo,
Thank you so much for the linkand affirmation of the “who knows" aspects of diet and cancer. Like So many in this thread, I have heard people tell me all kinds of things. Coffee enemas, anyone? Eat pineapple? Foot soakings?
Gah. Gag me with a freaking celery stick.
Love out to you ALL in the absurdity and weariness and courage of it.
Xoxo
Jojo
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Moth, that's a really good point you made - regarding who should be thinking about causes of cancer. Yes to epidemiologists and hope they find something better than "there seems to be a slight correlation.....". As an individual I don't know and - with the help of this thread - I am done thinking about it.
Jojobird, I love that blogpost of yours..... I have just watched a Bourne film (Matt Daemon definitelly got my hormone levels up), ate half a chocolate and did foot soaking while watching. The foot soaking really really worked! For the intended purpose at least - which was to remove some dead skin from my heels. (I didn't have an idea that was supposed to help in any other way 😀 noone recommended it to me)
As for the lifestyle choices, I think for now, I will just stick with two - exercising + BMI 19-20 (both normal for me for years). Maybe some more will come, but for anything else, the evidence is conflicting at least for me.
MuddlingThrough - that's what I experienced too - people saying oh you should go the city centre XY, that's where my aunt got cured... the centre XY is the best, aren't you going to be treated there?.... well, hell, ok, you take care of my small ones while I spend the whole day going there and back? and for the next 30+ weeks too, right?....
W3C, yes, the medical community don't have a clue about causes. there are just some risk factors. even with lung cancer and smoking, the actual cause stays hidden - how come there are happy and fit 90-year-old lifetime smokers?
Well I especially don't want to search for causes to blame MYSELF. There are always helpful people to do the blaming for me...
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JaBoo:
My maternal grandmother is one of those 90 year olds who smoked for decades, drank, ate red meat and potatoes and never got cancer, or had a stroke or heart attack...we found her on the floor a few times but Vodka had something to do with it. Her sister also smoked but didn't drink and she lead a substantially healthier lifestyle and got three different kinds of cancer...not mets and not lung cancer.
Sometimes I wonder if I should have taken up drinking.
The way things have been going with the effort I put in to my health vs. my health problems, I think maybe I did just not get a very robust set of genes.
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W3C yes, that's what crossed my mind too, more than once... Maybe if I drank more, I would worry less (about anything), got my stress level down and would be ok?
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JaBoo:
I don't know. But then we would have something socially acceptable to blame our cancer on if we still got it :-)
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W3C, exactly and people would feel safe while talking to us - they would think oh gosh she drinks, I don't drink (so much), so I can't get it, what a relief.
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I absolutely hate the blame game for getting cancer. It is NOT our fault! Who the hell knows why we get breast cancer! I’m the youngest of four girls in my family, the one with the healthiest lifestyle, but I got breast cancer and my sisters didn’t! Go figure! My peer group is like me - healthy,active, etc and some of them also got cancer. For god’s sake, children get cancer and I’m sure it’s not their lifestyle. We did not do this to ourselves! The last thing we need is to blame ourselves! And if others do well f#@( them! That’s my vent for tonight! But had a great day!0
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Hi KatyK I fully agree with you .Why I got cancer even I do not know .No genetic history. I am the oldest of my three sister .How ever one thing that particularly bugs me is that I was extremely sensitive and empathetic person .Both my sisters are happy go lucky types .They say what they want to say .They do not mind hurting others if their interests are at stakes . They live a fearless and unapologetic life . I wish I had a more carefree attitude .
I am staying away from my family members while I am undergoing treatment .I know someone by mistake is going to blurt out something stupid about how why I got cancer and ruin my day .I am keeping a low profile and it is really working out good for me
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Whenever I have a "good" check up after concerns (they were dismissed again as post radiation lumps and bumps) my husband likes to "remind" me how we are all getting older and don't feel like we did when we were 16 or 26. Um, yeah....I've had 4 surgeries, 12 rounds of chemo - 3 different kinds and rads, a hysterectomy and am on anti hormonals, cancer 2x. But hey, your're right...it's nothing to worry about just normal growing older stuff. Grrrrrrr I love him and he's usually very understanding....but I get so tired of the clueless cancerless people's remarks. Glad for them. Thankful he's healthy...but you just have no CLUE unless you've had this damn disease!
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JaBoo--thanks for the link to the article, I'm going to steal it and post it on Facebook! It says very well what I feel.
WC3--I would love to be a fly on the wall during that conversation! I hope you get your chance some day!
Moth--you are very right, epidemiological research is important.
Muddling--What so many people do not understand is that the treatment protocols used to treat all cancers are the same across the country, and very similar around the world. Even the dinkiest clinic uses the same protocols as the big centers. Most small clinics are affiliated with a larger clinic. The biggest difference between the smaller and bigger clinics is how often they treat a particular kind of cancer.Going to a big cancer center does not guarantee a cure.
WC3--I do wish there was more of a middle ground approach to diet and any other lifestyle changes regarding cancer, and more of a focus on dietary and exercise support during treatment. Cancer treatments are hard on normal cells and tissues, the body could use extra calories, extra protein, some vitamins and the like to use in healing, and fiber to help with constipation issues. Advice and guidance could be provided without being judgmental.
JaBoo, WC3-- My grandfather and father both died of gastric cancer. Neither smoked, my grandfather never drank, my dad drank occasionally. Both were healthy weights all their lives. So where did those cancers come from? I am a Hospice nurse, I've taken care of hundreds of people who died of cancer or cancer treatment who were never overweight, never drank, never smoked, some who only ate organic as adults, exercised every day, didn't use cleaning chemicals in their homes, weren't exposed to chemicals in their work, had all the recommended check-ups. There truly is no rhyme nor reason to cancer's appearance. Arrggghhhh.I just want people to stop telling me I should have known I'd get bc as I have been obese all my life.
Dhanno--I'm glad you are wise enough to realize staying away from your family is more helpful than not. I'm sorry you don't have the kind of support family can provide. I hope you have friends and others who are supporting you.
7of9--I do know that we are prey to the "normal" aches and pains of aging bodies, but not everything is from aging, and people without cancer do not understand the fear that strikes us when we get a new pain, lump, or symptom. I'm glad for them, but I wish they wouldn't downplay my fears.
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Okay, I have to jump in here! My mom died 2 years ago at the ripe old age of 104!! My dad died at 96. My mom never ever took any pills (she always said they were bad for her because she didn't know what was in them) and her only hospital stays were for 3 kids and a gall bladder. She drank a glass of Guinness Dark Amber Ale every day of her life and just faded away in her sleep. She told my sister and I she was lonely without dad, and that she was just plain tired. The day before she died, she said she thought she heard the banshee. And off she went.
My brother died 4 years ago of ILC. He tested negative for BRAC gene mutations. So where the hell did my cancer come from? My oncologist said "shit happens, Ann." Yes, that's exactly what he said. I have 2 daughters, 4 young granddaughters, a sister, and a bunch of nieces so I just had the genetics testing. I was unsure if I wanted to but I have to think of them. So if any of this crap can be prevented for them, I'm okay with it. Just hoping and praying I get negative results. There is no cancer of any kind anywhere except my brother. He served 2 tours in Vietnam when the Agent Orange was being dropped so they think that probably kicked it off or at least contributed to his cancer.
Geez, I hate this shit.
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Hi Snicker, I have no family history of cancer. I was exposed to agent orange as a child, so unsure. My father worried about it. In the early 60s the experimental forest he was working on, they used agent orange to defoliate and replant. It was right next to the house.
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Snickersmom--talk about living to a ripe old age! Dying in your sleep has to be the best way to go, no pain, no suffering, no fuss, just wake up in Heaven. Hard on the family, though. It's eerie how often people seem to know when they are nearing the end of their life. I did the BRAC testing due to being diagnosed before age 50 and the history of cancer in the family--pancreatic cancer, stomach cancer, lung cancer, but no known breast cancer. My test came back with no mutations found, so I got the bad roll of the dice. Genetic testing is helpful, if there is a known mutation then surveillance can begin early. Statistically most bc is not genetic, so chances are good your test will be negative.
Meow--Agent Orange is turning out to be quite the problem. I didn't know it had been used in the US, but I suppose that's ignorance on my part.
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Aug 15, 2018 02:13PM ksusan wrote:
I like the post hoc analysis of my treatment choices--I shouldn't have had BMX because it's faddish and unnecessary (never mind that I had no option for lumpectomies given the sites). Am I supposed to hop in my time machine and choose no surgery over BMX?
Bonus comment: "I'd never get a mastectomy because it's maiming and ugly." Thanks. Thanks very much.
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Icietla writes:
ksusan, this one is for you.
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