The Lies They Told Me

Posted on: March 28th, 2014 by
37

When I was diagnosed with breast cancer, people lied to me.

Oh, the lies came with the best intentions, sparked by genuine caring – and, of course, positive group-think.

Before I ever met my oncologist, I called a cancer hotline.

“I was just diagnosed with breast cancer, and I think I’m going to die,” I said. The person on the other end, a “survivor,” immediately reassured me “No, honey, you are not going to die. I had breast cancer, and I’m just fine.”

The woman meant well. She wanted to quell my panic.

She wanted me to live and for me to believe I was going to live.

But she did me a disservice by lying to me. I’m sure she didn’t think she was telling an untruth. I think she believed what she was telling me. Which makes it a lie fueled by ignorance. After all, she was no doctor and knew nothing about the nature of my cancer.

I was naïve at the time of the phone call, being new at this cancer stuff and all, so I clung to those words, “you are not going to die” as if they were scripture.

Now, looking back, I wonder if they were scripted.

And I have to wonder whether this organization conveyed a “think positively” vibe to every caller. Probably – fueled by the myth that breast cancer is curable.

How many other callers heard that they wouldn’t die, only to find themselves dying of metastatic breast cancer? How many people, “survivors” for the time being, have a false sense of security because of their interactions with those who tell them they aren’t going to die?

Just to make sure I covered all my bases, I called another hotline. The woman, another “survivor,” told me that I would live and to be positive.

Now, I am not against positive thinking in general. Having a positive attitude is a wonderful thing. But I loathe blatant lies that cause harm to patients – either through false hope or helping to create uplifting survivorship stories.

Telling people to think positively about their disease is harmful.

Our culture is saturated with lies about breast cancer.

Years later, after a hellish regimen of simultaneous chemotherapy and radiation treatments (which my oncologist had told me would just make me a “little tired”) and deforming lumpectomies, I was less naïve about the lies people tell.

The radiology department made a mistake. A clerk had forgotten to send my mammogram films to my surgeon before my follow-up appointment. So I called to complain and to make sure they were sent to him so he could have a look. I emphasized that I already had a history of cancer and why it was imperative he received the films:

“This is so important. I could have a recurrence, and he might never know – just because the films weren’t delivered,” I said, without thinking about the irony that a mammogram had missed my tumor in the first place.

The person on the other end of the phone said, “Aw. You won’t get a recurrence. You will be just fine.”

Was she on crack?

This time, I could read between the lies. And I blasted her: “You are in NO position to tell me this! You do not know whether I will have a recurrence,” I said. “Send those films!”

Years later, after a terrifying MRI scare and a bilateral mastectomy with DIEP flap reconstruction, I heard comments from well-meaning people about how lucky I was to have a free “tummy tuck” and “boob job.”

This is a lie. A) I wasn’t feeling lucky and B) This was not cosmetic surgery. As anyone who has had a mastectomy can attest, it is no walk in the park.

But I suppose it is more glamorous to drape the truth in a lie that I opted for the surgery to enhance my physique.

The thing is, from the very beginning, breast cancer patients are inundated with messages of positive thinking. We see all the smiling faces at walks and races. If one is lucky enough to have lived, it’s great to put on a smile and say she/he is a triumphant survivor.

Breast cancer is viewed by the public as this curable, sexy, fun sort of thing. Tell that to the 40,000 people or so who die each year from metastatic disease.

Breast cancer is the envy of people with other cancers. I wrote a post about it here. What gets lost is the real suffering of breast cancer patients.

Lost in a sea of positive-think lies.

smiley face

Have people lied to you when you were diagnosed or treated for cancer? If so, how? I want to hear your stories.


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37 Responses to The Lies They Told Me

  1. Caroline Frankovich Ronten had this to say about that:

    The world is full of lies about a cancer diagnosis. Sometimes its veiled behind a smile but sometimes you can see the concern in their eyes. On the phone, you can’t see their eyes. And all those pink ribbon events don’t do squat. Finally don’t get me started on the hotlines staffed by survivors who are told never to tell people negative things…

    • Jude had this to say about that:

      Our culture is full of lies. Hell, our culture is made of of death denial, so none of this is surprising. It’s horrifying, but not surprising. I wish it weren’t so, but I think almost every person diagnosed with breast cancer knows well what you’re saying.

      • Beth L. Gainer had this to say about that:

        Jude,

        Yes, our culture is comprised of “death denial,” as you put it. And I think this applies to other illnesses as well.

    • Beth L. Gainer had this to say about that:

      Caroline, thank you for your comment. Yes, unfortunately, too many people on hotline staffs tout the you’ll-be-fine attitude. What I would like to tell such staffers is offer support, kindness, and love, but don’t offer information beyond your area of expertise.

      Thank you for reading my post.

  2. Kate, of Kate Has Cancer had this to say about that:

    I was feeling pretty low about my stage IV diagnosis and asked for a peer counsellor who was stage IV like me. Well, she was just as perky as anyone else, claiming she didn’t even think about her cancer most days. Really?!? I was left feeling like my fears were unfounded. I never called back or went to any support group meetings. The message was ‘suck it up, buttercup.” I have received the support I need through the blogging community, thank goodness.

    • Beth L. Gainer had this to say about that:

      Kate,

      I’m so saddened to hear of the peer counselor who shockingly said she didn’t think about her cancer. I’m so sorry you felt alienated from other support communities, but am so very happy you have found comfort through the blogging community.

      Hugs,

      Beth

    • Amy had this to say about that:

      I belong to a women’s stage IV cancer support group in Boston. It is NOT into falsehood of any kind, including “don’t worry, you’ll be fine” messages. We’ve been through deaths. We go to funerals. We miss those who have gone before, but we also feel as if they’re still with us. And we laugh a lot. And we love each other. Hard to explain, but an amazing experience.

      I agree that the relentless pressure to think positively is harmful. (Read Barbara Ehrenreich’s great book Bright Sided for a thorough analysis.) But the right kind of support is invaluable. Death is our culture’s biggest taboo. No one knows how to “do” cancer, especially not terminal cancer. In our group we help one another figure it out.

      • Kate, of Kate Has Cancer had this to say about that:

        The Boston group sounds great. Traffic is the only thing not to like in Boston. That is where we had our last vacation before cancer, back when “can mommy walk that far” only referred to a blister. Cue the wistful look.

      • Beth L. Gainer had this to say about that:

        Amy, it sounds like the Boston group is terrific. That is a true support system — where everyone is there for each other.

        You’re right about death being our society’s huge taboo. There’s really no right way to “do” cancer. I loved Ehrenreich’s Bright Sided. She hit the nail on the head.

        Much love,
        Beth

  3. Cancer Curmudgeon had this to say about that:

    I was lucky in that everyone on my medical teams were always honest about the reality, and my team continues that honesty. However, most everyone else, such as members of groups and events, and friends and acquaintances, all embrace and spout the positive-speak. Nearly my entire blog documents my frustration with this perpetual ignore-the-reality culture. As time passes and I’m 3.5 years out from the start of the whole mess, my reflections of the experience are leading me to the conclusion that the constant encouragement by others to suppress my feelings caused me great harm.

    • Beth L. Gainer had this to say about that:

      Cancer Curmudgeon,

      I’m glad your medical team is honest, but it’s frustrating that so much of our society encourages us to put aside our fears and be happy instead. I’m sorry that you have had to suppress your feelings.

      That’s partly what appeals to me about blogging. I felt that I had to suppress my feelings, and now I’m letting it all out.

  4. Debby Rochon had this to say about that:

    Wow. The reality is that the majority of BC patients will survive. And that’s a good thing. Strides have been made but we’re not there yet. I’m so sorry you’re not in that group. Really would you have felt better if they had told you the truth – which is you will survive, unless you get a recurrence in which case you will die from your disease?

    • Beth L. Gainer had this to say about that:

      Debby,

      I really don’t agree with your comment. The truth is that not all recurrences lead to death. And while it’s wonderful for breast cancer patients who survive, we know that too many early-stage cancers go on to become metastatic.

      And, it turns out, I’m in that lucky group that is not metastatic. I’m not sure why you assumed I was not in that group of survivors.

    • Robin K had this to say about that:

      I have to disagree too. Five yrs ago my sister went through her second TNBC diagnosis and treatment . She’s still here :)

  5. Elizabeth J. had this to say about that:

    I have had various friends and strangers try to paint false rosy pictures, too. For the most part, they can be forgiven. People just cannot get their minds around it. One lady in church came up to me the other day saying “it is so good to see you looking so healthy again. Did you hear about S____, poor thing she is stage 4 and people just don’t get over that.” (And, no, I did not “educate” her.)
    However, the false positives within other breast cancer survivors is almost unforgivable. I refuse to go to the support group in my own town because of that false “just think positive and everything will be fine.” (I go to one in another town that includes other stage 4s.)
    I was repeatedly denied disability paperwork from my former employer because “Most people come back to work after breast cancer. You just need to think positive.” (Immediately following my umpteenth explanation of stage 4 and my ongoing treatments.)
    My oncologist is both optimistic and a realist. He does not sugarcoat or make promises, but he also says you are not a statistic and he has had others who made it 10 or more years. Basically, there is no predicting.

    • Beth L. Gainer had this to say about that:

      Elizabeth, your former employer sounds completely insensitive. By the way, I had a former employer who thought I’d be “OK during treatment.” Your oncologist is right; it is good to be a realist and an optimist. A great combination for a patient.

      It is amazing how many survivors paint that rosy picture. It boggles the mind.

      I’m glad you found a support group that is more in sync with reality.

  6. Chandra had this to say about that:

    My first oncologist lied by omission by not telling me about Oncotype DX testing. She would have sent me right on to chemo (I’d had a bilateral mastectomy, so no radiation). Once armed with a recurrence score of 4 (which is still no assurance in the end, of course), I found another oncologist and said “no” to chemo.

    • Beth L. Gainer had this to say about that:

      Chandra,

      Yes, lying by omission is still lying. It’s inexcusable when a physician withholds information — so awful. I’m glad you found a new oncologist and chose the path of treatment that was right for you.

  7. Pingback: Weekly Round Up: The No Make-Up Selfie Special | Journeying Beyond Breast Cancer

  8. EAK13 had this to say about that:

    Beth when my hair was out I went to the Canadian Cancer Society to pick out a wig…. I walked into the office in a sea of pink…. It was so over the top. The girl behind the desk with her perky smile said go back enjoy yourself. Somehow picking out fake hair never was something I did to amuse myself.
    When I was done she suggested I have a hair off coming out party…..They had all the supplies, invitations pink plates hats blowers etc and not forgetting the pink boas!! I was just begining to understand the insanity behind all this positivity BS that was being tossed on a continuous diet. smile be happy, be positive it will soon be like it never happened crap. It’s not so bad you’ll see!! like everyone else at the start I pretty much bought into the hype just stay positive but it became like an insidious monster that was growing louder mocking me This Cancer Happy crap was a lie the biggest prevarication on record, friends were dying, they stayed positive did all they were told and damn them anyway maybe they didn’t try hard enough.They tell you all the goobledy gook but not the truth. I rather know from the start what I could be facing and lets be real who doesn’t think that Breast Cancer might be fatal? That’s the first thing we think because the fear Cancer creates.. I like to believe I am a realist not living in a make believe world that if you smile be positive all the time it will cure what ails you…. Good post Beth I agree with your comment to Debby
    Love Alli…XX

    • Penny had this to say about that:

      Alli,

      I completely agree. I hate the association of breast cancer with pink fluffy junk. It is a horrible disease. Why should we feel positive about it?

      There is a huge difference between feeling (or trying to feel) optimistic and feeling positive.

      Anyone who feels positive about cancer is an idiot.

      Feeling optimistic or hopeful is quite different. There are reasons for hope. We are not all going to die, some of us are going to make it. The stats are often in favour – most of us are more likely than not to survive the next 10 years. Progress is being made in new treatments at a much faster rate than before. This is factually true.

      When I found the lump and was waiting to be seen at the clinic, I bought 2 coffee mugs one with “Keep calm and Carry on” and the other with “Now panic and freak out”.

      We are allowed to either if we want to.

      Keep it together and have courage.

      But don’t feel positive.

      • Beth L. Gainer had this to say about that:

        Penny,

        I really like the idea of your coffee mugs! Very apropos of life.

        I totally agree with your point that there is a difference between feeling positive about cancer and feeling optimistic and hopeful. I opt for the latter.

        Thank you for your response!

    • Beth L. Gainer had this to say about that:

      Oh my gosh, Alli! This is so over the top. A hair off coming out party? Ridiculous and simply glosses over your pain.

      I think society is in a huge sea of denial and wants to feel better so they undermine our fears and our physical hell. I am also a realist, but I’m also an optimist. That does not mean I buy into the “think happy” baloney our culture feeds us.

      And, like you say, the “stay positive” crap is really a lie. Few people really tell the truth about this horrific disease called breast cancer.

  9. Nancy's Point had this to say about that:

    Hi Beth,
    Well, this is an interesting discussion! I always say I’m a realist. This does not make me a negative person at all. I firmly believe that too much pressure to remain positive can be quite harmful for some. I’ll take genuine-ness (is that a word?) any day. In the end, that’s what unites and lifts us all up anyway.

    • Beth L. Gainer had this to say about that:

      Nancy, yes, it is an interesting discussion, indeed. Being realistic and being a positive person are not mutually exclusive. One can be positive and realistic.

      The thing that gets to me is the “think positive” mantra that attempts to cloak the real fear that people have. Our society tries to cloak the reality of breast cancer.

  10. Kathi had this to say about that:

    Beth, I’d have to say that the lies I heard, in all their forms, are what turned me into a blogger. The positivity gloss is bad enough, but the ones that stick in my craw the most have been the lies told by the doctors I trusted to provide thorough information so I could make well-informed decisions. Those lies are inexcusable.

    Lies, carelessness, and omissions by clinicians have no place in healthcare. xo

    • Beth L. Gainer had this to say about that:

      Kathi,

      Thanks for reading and commenting. I find it great that the lies turned you into a blogger who dispels them. Lies by doctors are inexcusable, as you say.

      It’s amazing how many medical professionals and support personnel tell those fibs.

  11. ButDoctorIHatePink had this to say about that:

    Well, Beth, you know I have metastatic breast cancer and I AM going to die, so maybe I see this a bit differently.

    I agree with about half your article – people should not tell you that breast recon is a tummy tuck or boob job, that’s ridiculous. Even the best results don’t look normal. That women who lost your file was covering her mistake, she should not have used your health to do it.

    But, while they do not know who will live or die, they do no good by telling people in distress “you are likely to die” either. That would be as much of a lie (harsh word) as saying “you will live.” The truth is, you DIDN’T die, your odds of having cancer return go down year after year (although they don’t go away ever) so is it really a lie? I think it’s playing the odds.

    To a women terrified she is dying, in that hell that is those first few weeks after diagnosis – they spun the odds in a positive manner, perhaps for her psychological safety. And I don’t see that as a lie, just as hope that somebody can hang on to when they are in extreme need. When a guy is in a car accident, hanging upside down by his seatbelt, bleeding, the rescue people don’t say, “Yeah, you might die.” They say, “Hang on, you are going to live, we’ll help you.” At that moment, it’s the same need.

    Of course, it also can be tempered with truth. Newly diagnosed women write me upset, for help, and I tell them that the odds are in their favor for living out their full natural lives, that most women do. I show those statistics. Of course since I ended up with mets I certainly cannot deny that reality, but I remind them that even if they end up metastatic like me, they will not die immediately. They have time. I think that is a fairer assessment of the situation but to a person on the phone answering a hotline, they might not be able to distinguish who needs absolute statistical truth and who just needs encouragement.

    I agree that the issue is that we are forced to be positive in Breast Cancer Land. Those of us who are metastatic are not acknowledged by any pink charity as we harm their need to show that cancer is for Survivors. We are ignored as we don’t fit into their happy pink fun races, we with our oxygen tanks, our wheelchairs and our 80 pound body weight.

    The biggest lie I’ve heard is “nobody dies of breast cancer anymore” which is directly because of these pink charities who whitewash the disease. I have had people tell me that, AFTER I’ve told them I have a terminal form of the disease. That is very entrenched in our culture now.

    I don’t think it hurts to frame your disease in a positive manner. I am dying, but I am also still living. And, enjoying life as much as I can while I have it. Who knows, I might get 2 more years, maybe 5. Maybe 6 months. But I am going to be happy as I can be while living it. Being positive won’t change the outcome of anything but it does change the internal experience for me. If you don’t have much time, you don’t want to spend it complaining, so that is where positivity can help.

    • Beth L. Gainer had this to say about that:

      Ann,

      I think it’s appalling that people with metastatic breast cancer don’t get recognized by pink charities, and a huge lie is that “nobody dies of breast cancer anymore.”

      And I’m glad that you continue to seize life and enjoy it. That’s what we all should do.

      I can understand the points you disagree with. Yes, I was lucky to live. And, trust me, I do savor life and am a really positive person. But at the same time, the fact that I lived doesn’t make what the hotline people said to be a truth. They really didn’t know. I would’ve rather heard, “You are not alone” without the “you’re going to live” mantra.

      And in fact, a second-opinion doctor told me that I would die. That was his opinion and while at the time what he said was horrifying and exceedingly painful back then, I still find the positive-thinking lies are more harmful in the long run.

      I know this is a controversial topic, and all we can each do is lend our own voice to the authentic cancer experience. I just expressed my truth.

  12. eileen@womaninthehat.com had this to say about that:

    I absolutely loathe when people tell pretty lies, even robotically to themselves. It does nothing to reassure the person in need. In fact, it creates an isolating wedge.

    • Beth L. Gainer had this to say about that:

      Eileen, yes, those pretty packaged lies don’t help anyone. I like the way you put it: “it creates an isolating wedge.” At the time I heard the reassurance, I have to admit, I felt a little better — at first.

      But then moments later, the panic started all over again, so it was not helpful. And now, years later, I look back with resentment that these things were told to me.

  13. Patty had this to say about that:

    I will not go into the issues of pink ribbons, the unthinking comments of those who have really not been “touched” (when are you ever just touched) by cancer, and the whole positive thinking rot, which throws the blame of complications, side effects, fatigue, sadness, and one’s entire sense that doom could be around the next corner). We are all familiar with these afflictions.
    Instead I want you to know about the BIG LIE that has followed since a recurrence of HER2+, hormone negative, Grade 3 (Nottingham score 9) breast cancer returned four and a half years after removal of a large tumor and an extremely long, aggressive chemotherapy. Due to insurance that has proven to be far more restrictive than it was portrayed as, I am in a new cancer center in Washington, D.C.. I expected the whole “team approach” “patient centered” that is advertised as being a place that listens to the patients, and according to their mission-statement is research oriented, committed to providing each bc patient with a tailored, aggressive treatment informed by its research. Not so. I had a few oncologist appointments after my first lumpectomy, most of which were twelve minutes long and having to wait an hour up on an exam table. This doctor hadn’t even bothered to read the pathology report from my second lumpectomy. She actually asked me when she sat down, “Now you have had another surgery since I last saw you?” When I replied yes, and that a copy for her to look at, she said she didn’t need my copy. However, when she had problems calling it up on her computer, she had to ask me for my copy. Of course, she had no clue as to what it said about the removal of microcalcifications of concern and what the path report had concluded. The time she spent acquainting herself with the report was wasted time for me. Had she remembered I had had surgery and there was available a path report would, then that bit of homework would have revealed facts that she could have processed ahead of our brief, not frequent visits. The next visit she disclosed that there were 7 new foci of concern, each of which showed a microcalcification with very active growth and nastiness that should is just about to invade healthy tissue. I found this highly disturbing news, but when questioned about these dangerous, almost invading foci, she wrote that there was nothing to worry about, my stage (still not told me), remained unchanged, and the same with my chemo. My husband and I were lead to believe the cancer was DCIS. There was no mention of invasive ductal carcinoma. Last week we had an appointment with a different, but still in-house oncologist. He gave us the startling news that I do, in fact, have invasive cancer. The first doctor outright misrepresented the truth of the cancer, lied about its seriousness.
    The bad news-relating physician, however, saw no need to up my chemotherapy treatment. When I was diagnosed back in 2010, I received 16 was of Herceptin and Taxol, followed immediately with 3 3-week infusions of Doxirubicon and Cytoxin. This was followed by surgery that showed, as had imaging, that the tumor had completely melted away. It was called a “complete histological, pathological cure.”
    With this recurrence of a high grade Her2+ invasive ductual cancer–the same as the initial diagnosis, I have been told by both oncologists I do not require a more aggressive chemo treatment. This makes sense to no one who understands the particulars of my case. Today I will complete I fusion 10 with 2 to follow. Then I will be sent to radiation oncology. Radiation was all that oncologist one thought was needed. I do not know where to turn. Neither physician wants to listen to my concerns or answer my questions. One ignores both questions and concerns; the second, rudely interrupts, even suggesting that with some cognitive issues I have had my be why I have had these “misinterpretations,” overly looking the fact my husband has attended every oncologist visit but one, has been there for every nurse practioner consultation, and attended 9 infusions, my daughter from out of town with me for the other one.
    My daughter suggests I write down my questions ahead and read those to the new oncologist. She makes it sound so easy, but when you are sitting in the chair with an interrupting, accusatory, paternalistic doctor the hostility you feel makes me ready to explode, but instead I shut down.
    Please, if you have any advice, it will be welcome. I have checked into a second opinion, but my insurance makes no promises, but rather presents that has a very difficult mountain to climb.
    Yes, doctors lie to cancer patients and emotionally harm them. Believe it. If you have an honest and truly caring oncologist committed to seeing you get the best, up to date treatment, count your blessings.

    • Beth L. Gainer had this to say about that:

      Patty,

      First of all, I’m saddened by all you’ve gone through. Many doctors are excellent and not paternalistic, but I know paternalistic medicine is a real issue and all too common.

      I’m not sure why your insurance might reject your pursuing a second opinion; most insurance companies allow for that. If you want that second opinion, you might have to be willing to fight tooth and nail for it.

      I have “fired” doctors who didn’t have my best interest at heart and were more fueled by their egos than their concern for my health.

      All I can say is that you ought to do what you feel is right to ensure the best health care possible. Good luck to you, and I hope you find the right medical team and treatments for you.

  14. MikeA had this to say about that:

    You neglected to tell about the lies Oncologists make. When my father was diagnosed with non-small cell lung cancer his Oncologist gave him the impression that chemo would cure it. This dissuaded him from seeking alternative methods.

    During his first round of chemo I asked the doctor for an update. She said she lost the scans. On a Friday, when the first round was finished, she said his cancer grew and she wanted to start him on a different form and more aggressive chemo on Monday. I told her he would need to recover at least a month or two first. Then she said the chemo was working and he must come Monday for the success to continue. I told her you just said it grew and I thought the scans were lost. Her response was she found the scans and it was better. My father confided later that he felt if he sat in that chemo chair one more time that he wouldn’t get up. The next day he was rushed to the ER. The oncologist (who didn’t have the nerve to show up herself), sent her associate who told me that the chemo was too much for him and his body shut down. When I told him his boss said the chemo was working and wanted him on a stronger dose on Monday, he just shrugged.

    When my mother was diagnosed with malignant lump in her breast. The surgeon and oncologists refused to do a full body scan to properly stage the caner. Instead, they did a chest X-ray, mamogram, and physical exam and staged it at I. The surgeon told me it would be simple operation (even tough my mother was 89) and she would be fine. After the surgery, the surgeon told me that the cancer spread to one of my mother’s lymph nodes and she wanted to take it out, but didn’t because of my mother’s age. When I asked her our options, she said aggressive radiation (everyday for 5 weeks) and chemo, or she can go in again to remove it with a simple operation. So taking it out during the first operation wasn’t an option because of my mother age, but putting my mother through a second operation only weeks later was? It was as if she left the cancer in there so there would be business left for her radiation and oncology friends.

    • Beth L. Gainer had this to say about that:

      Mike,

      Thank you for sharing your experiences. I’m sorry your parents had to deal with unsavory oncologists. I understand why you are frustrated.

      The reason I didn’t cover oncologists is that my oncologist didn’t lie to me; the post is based only on my experience.

      Take care, and once again, I’m sorry your family went through all this.

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