Dear Andrea Mitchell: Early Detection is Not a Breast Cancer Cure

Yesterday, MSNBC’s Andrea Mitchell announced she was diagnosed with breast cancer. “I had planned to be hiking in Wyoming last week, but instead discovered that I am now among the one in eight women in this country … who have had breast cancer,” Mitchell said.

EW.com reports:

Luckily, the news isn’t that bad. Mitchell’s cancer was discovered at a very early stage, and the cancer has not spread. “I’m looking at this as another of life’s lessons,” she said on the show. “For you women out there and for the men who love you, screening matters. Do it. This disease can be completely curable if you find it at the right time.”

In past years, Mitchell has participated in the Susan G. Komen Race for the Cure.

Dear Andrea,

I am sorry you have breast cancer.

Unless you had DCIS (aka Stage 0) there is no “had” with breast cancer.

Early detection is not a cure. About 20 to 30 percent of women originally diagnosed with Stage I, II or III breast cancer will go on to have a recurrence. Unfortunately many of them will be be joining me in the Stage IV ranks.

I learned I HAVE breast cancer in July 2009. I will always HAVE it.

“Completely curable” is a like a fat man wearing a hockey jersey. It covers a lot of ground. You have access to the top medical experts in the world–ask them what “cured” means in the setting of breast cancer.

Also: inflammatory breast cancer, the rare but aggressive kind that killed my mom, has NO LUMP. Screening would not necessarily help.

One caveat: Don’t rely on Dr. Nancy’s breast cancer expertise.

The day after Elizabeth Edwards died, “Today” show host Matt Lauer and Dr. Nancy Snyderman, NBC chief medical editor, recapped Edward’s cancer experience. Noting that Edwards was diagnosed with Stage 3 breast cancer in 2004, Lauer asked Snyderman about Stage 3 survival rates.

At no time, during their discussion, did Lauer or Snyderman mention that Edwards entered the metastatic ranks in 2007 and, in fact, died from metastatic breast cancer, AKA Stage IV.

Snyderman made it sound as though Edwards somehow died of Stage 3 breast cancer.

Let me tell you, Andrea, metastatic breast cancer (aka Stage IV) is one lonely place. It’s like hiking in Nebraska forever.

Many people don’t grasp that metastatic breast cancer is not a rare “kind” of breast cancer. When someone dies of breast cancer, that’s metastatic breast cancer. It might have been triple negative breast cancer, triple positive breast cancer, inflammatory breast cancer, hormone receptive breast cancer (ER/PR+) or some variation. In all cases, regardless of pathology, if the person had metastatic breast cancer, it means the cancer spread outside the breast to the bones, liver, lungs or brain.

 Metastatic breast cancer claims 45,000 lives annually in the U.S. As one of 155,000 U.S. people living with MBC, I have a vested interest in educating people about this incurable disease and urging them to support research that helps people with advanced breast cancer live longer.

National Metastatic Breast Cancer Awareness Day is Oct. 13.

I will be sharing stories of people who died from MBC–as well as those who are living with it every day of every month–not just October! I invite you to do the same.

Sincerely,

KOB

P.S. Re the Komen walk, please see  “6,000 Runners Fail To Discover Cure For Breast Cancer & Other Onion Highlights”

 

Tagged , , ,

76 thoughts on “Dear Andrea Mitchell: Early Detection is Not a Breast Cancer Cure

  1. mkmustain says:

    Thank you. I read her post on MSNBC yesterday and my first reaction was well, glad you are ok, for now but don’t have the mad writing chops like you my dear. Thank you, as always, for your way with word and getting to the heart of the matter. Information is power.
    M

  2. Brava! A teachable moment for Andrea Mitchell! How I wish she would read it and use her incredible journalistic skills to spread the true message of what breast cancer and early detection really means.
    Thank you Katherine!

  3. Being Sarah says:

    Well said Katherine. As your previous commenter says, you’ve gone absolutely straight to the heart of the matter – brilliant.

  4. I bridled at her use of the term “had” cancer. ‘Scuse me? Had? Not bloody likely.

  5. Anette says:

    I have seen other comments like yours Katherine and I guess I don’t understand. I think Andrea’s message is that early detection from screenings increases the odds of a better outcome. Is that not true? I know that mamograms don’t catch everything, but isn’t it true that if caught in an early stage – before a metastasis – that survival odds are greater?

  6. […] Yesterday, MSNBC's Andrea Mitchell announced she was diagnosed with breast cancer. “I had planned to be hiking in Wyoming last week, but instead discovered that I am now among the one in eight women in this country … who have had breast cancer,” Mitchell said. EW.com reports: Luckily, the news isn’t that bad. Mitchell’s cancer was discovered at a very early stage, and the cancer has not spread. “I’m looking at this as another of life’s lessons,” … Read More […]

  7. Joani Gudeman says:

    Thank you once again Katherine for articulating what so many of us feel. There is no cure for breast cancer, unless you include death as the “final” cure. No one is suggesting that early detection is not useful – it is just not the be all end all. Cancer can reoccur at any point, irregardless of what stage it was when it was first found. Thank you again Katherine for raising your voice!

  8. katherinembc says:

    Anette:
    I will let my friends from NBCC speak to that question:

    Truth #4: When breast cancer shows up on a mammogram, it may have been in your body for 6-10 years

    TRUE. What is early detection? We probably think of it as early enough to intervene and save a life. But there are different kinds of breast cancer. For some of them, if they are surgically removed, the breast cancer has been effectively “cured.” For others, it can be found really early, yet no known intervention will “cure” it. Complicated? Yes. But the truth about breast cancer is just that.

    NBCC embraces a philosophy of evidence-based health care, and has long raised questions about the value of mammography screening and other tests. This is important because patients need to be assured about the value of all medical interventions, and public health resources need to be used with certainty about value to the public’s health.

    NBCC believes that in order to make true progress in breast cancer we need to better understand what causes this disease, what puts individual women at risk beyond the known risk factors, how different types of breast cancer behave, and which treatments are appropriate and effective for each type of breast cancer to ensure that women receive quality care.

    http://www.breastcancerdeadline2020.org/know/31-myths-and-truths/truth-4-detected-breast-cancer-maybe-in-body-6-to-10-years.html

    • Mona Salomon says:

      Thank you for the NBCC point of view. When 1st diagnosed I joined a group called Living with Breast Cancer and that’s how I’ve approach my life in the 14 years since my diagnosis. Each day is a new day, but you never know when things can go wrong. Our priorities have to be in how to best help those diagnosed. Better acting medications and better testing to find those who might be at risk before signs appear. What we can do to prevent it. Patient services and research have to top priorties..

    • Anette says:

      Thank you. I saw that NBCC says this: We probably think of it as early enough to intervene and save a life. But there are different kinds of breast cancer. For some of them, if they are surgically removed, the breast cancer has been effectively “cured.

      If Andrea Mitchell has the kind that fits into that category, then what is wrong with what she said? That is what I don’t understand.

  9. Brilliant Katherine. I planned to do a lot of things like hiking in the wilderness, but sadly metastatic cancer has other plans for me. Although obviously I’m glad Ms Mitchell’s cancer is a blip on the radar for her, the media coverage just again feeds into the myth that breast cancer is the “good kind of cancer”; the one that you survive no problem I know we beg to differ Katherine.

  10. Great response to Andrea Mitchell’s news. I hate it when she considers herself as one who “has had cancer.” It’s easy for her to make light of it and not seem too perturbed, as she doesn’t have Stage IV….yet or maybe.

    Thank you for sharing the truth and bringing it to light.

  11. nancyspoint says:

    Katherine,
    I just want to say thank you.

  12. Joy says:

    Bravo! Bravo! Bravo! and thank you for saying what needed to be said. There is no way to prevent or detect breast cancer early. Women die from the treatment of breast cancer too. So getting diagnosed with it is not your salvation. If we could cure it, prevent it or even manage it for a long lifetime, we could experience progress.

  13. C.Munro says:

    Hooray to you Katherine. I watched my mom fight valiantly aginst breast cancer for 17 yrs. See lost her battle 18 years ago October 6. I have recently found out that i have the BRCA 2 gene passed down from my mother. I have decided to have a prophylatic bilateral mastectomy to increase my odds of not getting breast cancer. I have already had a bilateral salpingo-oophorectomy.

  14. Irene says:

    …and shame on all of those cancer charities out there collecting millions…when my Mom was in Stage IV MBC she contacted the American Cancer Society and they sent her a bunch of literature on early detection!
    Learn to see the beauty and love in every moment of every day, whether you are “cancering” or not. Ask for Divine guidance that you may feel contented and peaceful, no matter what your bodily condition.

    • Claudia Nixon Fauver says:

      Irene: I feel the same way about the American Cancer Society. When I requested info on Inflammatory Breast Cancer (IBC) when I was diagnosed with it in Aug 2007, they were of absolutely no help. They said they’d never heard of IBC and didn’t know anyone in the South Florida area who had it. Oh really? There are 3-4 Million people down here, ACS. That’s why I’m now volunteering with the Inflammatory Breast Cancer Foundation (www.eraseibc.com) and attempting to educate the general public and the medical professionals I see. When you’re diagnosed with IBC, you’re at least a Stage III. If neither you nor your doctor is familiar with the signs and symptoms of IBC, you could be a Stage IV…there is no Stage V. Since IBC doesn’t usually have a solid lump, but nesting or sheeting of tumors, it’s not usually detected by a routine mammogram. Early screening just doesn’t usually work with IBC.

  15. Katherine, thank you for that excellent and superbly written response. I would like to add that it has now been determined not only that stage 0 patients can and do metastasize, but that individuals can actually have metastatic cells prior to even having a detectable tumor. So much for early detection saving your life.

  16. Kathi Kolb says:

    Brilliant, Katherine. You’ve cogently and succinctly addressed the myths that, even after decades of ‘awareness,’ continue to persist about breast cancer and continue to be disseminated by people of all stripes who should really know better by now. I will be reposting & quoting this one, my friend.

  17. Jude New says:

    Early detection means NOTHING if your under the age of 40! My 38 year old neice was diagnosed with Stage 3 Breast Cancer in 2009, It was six weeks from the time she found the lump, was diagnosed, had a double mastectomy, till it had metasized to her bones. She passed away January 15, 2011. (Just 1 month and 3 days after her 40th birthday). In one and a half years it had gone from breast to bones to brain to lungs. Early detection means nothing, because if it did she would still be alive today to raise her 12 year old son and 8 year old daughter. Maybe the fight needs to be to lower the age that women start getting mammograms and getting screened for Breast Cancer. Cancer knows no age!

  18. Marjorie says:

    Excellent response! Thank you for speaking up about the truth regarding this beastly disease. We all wish Andrea well and hope she really is finished with her breast cancer frolic. I just wish she had done her homework.

  19. Ahimsa says:

    Totally agree. Just one nit-picky thing. When someone originally dx as stage 3 recurs with metastatic disease, they still have stage 3 cancer, that has metastasized, not stage 4. “Stage 4″ and “metastatic” are not technically interchangeable, despite their being used that way amongst the bc community. You write, “Snyderman made it sound as though Edwards somehow died of Stage 3 breast cancer.” Actually, she did. But, again, I totally agree about the early detection = cure bs. Not cool, not productive, and actually alarmingly misleading, especially coming from a news personality. I guess we all like to preach our gospel at the beginning as a way of warning others and reassuring ourselves. But the more I learn, the more I know there is no reassurance about bc.

    • katherinembc says:

      Absolutely correct Ahimsa, Staging does not change. (I presented with mets, so yes, I do tend to think always in terms of Stage IV. But you are correct, Elizabeth Edward was technically always Stage 3. What bothered me was the two TV hosts didn’t clarify what actually died from–the cancer’s spread outside of the breast to a vital organ.

      Per the American Cancer Society:

      A cancer’s stage does not change
      An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed, only information about the current extent of the cancer is added.

      For example, if a woman were first diagnosed with stage II breast cancer and after the cancer went away with treatment it came back with spread to the bones, the cancer is still a stage II breast cancer, only with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it is called a stage II breast cancer with metastasis in the bones. In either case, the original stage does not change and it is not called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it is first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current disease status.

      This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

      At some point you may hear the term “restaging.” Restaging is the term sometimes given for doing tests to find the extent of the cancer after treatment. It may be done to measure the cancer’s response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often this involves the same tests that were done when the cancer was first diagnosed: exams, imaging tests, biopsies, and possibly surgery to restage the cancer. Rarely, after these tests a new stage will be assigned, written with a lower-case “r” before the new stage to note that it is different from the stage at diagnosis. The original stage at diagnosis always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, although it is more common in clinical trials.

      • Thank you for this clarification. People often get this wrong. Cancer is always “stage IV” by the time it kills you. If you had to restage cancer when it recurs or metastasizes, then survival statistics for cancer would be something like 100 percent of Stage I, II and III patients survive. And, of course, we know that’s not the case. – Donna Trussell, stage III OvCa, dx 2001

  20. DrAttai says:

    An excellent post – very little to comment on except to congratulate you for helping to bring attention to this issue. The only point I would make is that even patients with Stage 0 / DCIS are not “safe” although we talk about DCIS as being a “curable” breast cancer. But even DCIS has the potential to recur, and if it does, approximately 50% of the time it is invasive disease. In addition, patients that have had DCIS also remain at risk for new primary breast cancers, just like women with invasive cancer. We’re all guilty of giving women the impression that they have been “cured” of early-stage breast cancer, but the reality is, cancer is sneaky and does not care if it got you once. Appropriate treatment followed by continued surveillance is necessary in everyone.

  21. Terry Arnold says:

    I don’t normally read cancer blogs, because I get too upset at all the fluff. Not here, and I love it! Thank you.

  22. Excellent post. Thank you. The word “curable” bugged me from the get-go.
    Thanks also for the additional facts about staging. I learned something new.

  23. Julie Hewett says:

    Excellent post! THANK YOU!! You are in my thoughts ….

  24. Carole Sanek says:

    I was diagnosed 18 years ago DCIS and infiltrating DCIS – Stage 1. As an RN in Oncology I became even more educated in breast cancer after my diagnosis. When I became a peer counselor for Y-Me and sat at a training center in Anaheim – one of the questions posed to all of us was this “Did I or do I have breast cancer?” I totally get it that there could be a rogue cell or 100 rogues perched on an organ or on a bone or circulating in my blood stream right now. I don’t have a clue why some people – Betty Ford for example – never have a recurrence. I have a woman in my neighborhood who is a 50 year survivor. Are they cured? I don’t know, and I suppose no one does.

    As far as Nancy Snyderman goes I have gone up against her in the past with her “know it all” attitude on breast cancer. I believe in some cases her mouth opens to the tune of who is paying her paycheck. I tune out her opinions on all diagnosis, I have no respect for her medical opinions.

    Elizabeth Edwards admittedly did not have routine mammos. Maybe she would still be fighting the battle if she had been more vigilant, who am I to say.

    I thought Andrea Mitchell’s cavalier attitude to be strange but I will give her the benefit of the doubt as maybe she needed to put on the “brave face” – it might just be her persona and we really don’t know if she cries herself to sleep at night, do we?

    Andrea is not the only well-known person who has gone public and acted like having breast cancer is no big deal.

    I have been in a situation where a Stage 2 asked me what I was diagnosed with and when I told her she had the nerve to say “oh you had nothing compared to me”. Excuse me – my doctors at Northwestern at that time were even shocked that anyone would say that because when any man or woman hears the words “you have a malignancy in your breast” it is as deeply horrifying to the same degree and none of us know who is going to make it through and who is not at that time. All we hear is you have breast cancer.

  25. feistybluegecko says:

    Oh thank you for this clarification. You have really set the record straight on this one, as the assumption that early detection guarantees cure is so widely held. Of course, if cancer is undetected and advances then prognosis is poorer but it is so hard to get the message across that the reverse is not true.

    Thank you also for your very clear explanation of staging, I hadn’t realised that.

  26. lynn markenson says:

    Thank you! Thank you! Thank you! Thank you for getting the information correct. As a newscaster, I hope she will get the news correct. Hope to see her do research on Stage 4 breast cancer and report it for the world to hear.

    Let us focus on Metastatic Breast Cancer. It is incurable. It needs funds for research so we can find a cure.

  27. Suzanne says:

    I have found over years of listening to Dr. Nancy Snyderman on NBC that you have to critically listen to what she says. Often she inserts her opinion and ignores facts that are presented to her. An example is the issue of autism. She vehemently denies that you can lessen the symptoms of autism through early intervention, despite hard evidence that you can. I think she gets stuck on one point of an issue and doesn’t see others. That sounds like what happened when she was talking about breast cancer.

  28. This was an excellent post, Katherine. I certainly agree with concerns about the issue of cure, the misrepresentation of statistics, and the limitations of thinking about breast cancer in terms of “early” detection.

    Carole also makes a good point that “Andrea is not the only well-known person who has gone public and acted like having breast cancer is no big deal.” I think this is part of the problem. Misinformation and factoids about breast cancer abound, and people who have microphones and podiums have a responsibility to be clear when they are giving an opinion versus a directive. Journalists especially cannot be considered to be ‘only lay-people’ when they use their official platforms and/or profiles to share their personal information while directing their viewers to take some action. They are representatives, and their words carry weight.

    There remains an ongoing controversy surrounding the risks, benefits, and limitations of one-size-fits-all screening protocols, yet Mitchell commands her viewers to just get screened (i.e., “do it”). Isn’t it up to individuals to work with their doctors to weigh evidence and decide for themselves?

    As did many who voiced concern about Mitchell’s message, I too wish her well. I just think we ought to expect more of journalists and others in the public domain who have such influence. Journalists ought to be responsible enough to rely on accurate information and evidence. And if they use personal examples, whether their own or someone else’s, it has to be put in context.

  29. DebbieWWGN says:

    I certainly can’t speak for Andrea Mitchell. I can only say that, when I was diagnosed with DCIS Stage 0 breast cancer in February 2009, I was beyond confused. Did I even have the right to consider myself a cancer patient, when my doctors kept using words like “lucky” and “cure.” If Andrea’s head is where mine was then, she’s just parroting what she was told, and happy to believe it. She doesn’t know yet how insidious this disease is and how it’s going to affect every aspect of her life. As Dr. Attai’s comment makes very clear, we are all at risk and never truly safe. Unfortunately for us all, we’ve had to learn this through hard experience, because there’s still a pretty pink gloss painted over this disease.

  30. Claudia Nixon Fauver says:

    One thing that no one mentioned here yet is the fact that many women are having a major problem getting a proper diagnosis, especially women who have Inflammatory Breast Cancer (IBC). When I first started volunteering with the Inflammatory Breast Cancer Foundation (www.eraseibc.com) to return phone calls that came in from scared women all over the US, the main theme was “my doctor won’t listen to me”, “my doctor says to stop spending so much time online”, “my doctor says I’m too young (or too old) to have IBC”, “my doctor says I don’t have enough symptoms to have IBC”, and so many other things. I know the time I had trying to get my IBC diagnosis back in 2007. I knew what I had, but I was forced to take 3 rounds of 10-day antibiotics even though I wasn’t pregnant, wasn’t nursing, and didn’t have a temperature. I was 65 yrs old at the time, and to this day I am still amazed at the number of doctors who know nothing about the signs and symptoms of IBC. Some don’t even know the proper treatment (like my PCP and surgeon), and way too many think they know it all (again, my surgeon) and will not listen to you or read any info you take them. If doctors had more training about some of the rarer forms of BC, maybe we could get an earlier diagnosis and a better prognosis.

  31. MJ says:

    Anette, the point is that even though Ms. Mitchell is LIKELY to have an excellent prognosis, i.e. no recurrence, even to be “cured”, she has not way of knowing it–in advance. Nor do her doctors know whether or not she is cured, unless and until she dies of an unrelated cause, and has an autopsy that shows no active metastatic disease.

    My doctor told me after my stage 2 diagnosis, You will never be cured, until you die of a skiing accident at the age of 82 without any mets. Then I will say, She was cured of BC. I still remember that, and appreciate his honesty.

    The reason this is important is that so many people have simplistic ideas about what breast cancer is and isn’t. Even physicians will misinform their patients and say stuff like, “We got it all.” Um, no. Sometimes there isn’t an “all” to get. Breast cancer is a sneaky, horrible disease, with a life-long chance of metastatic recurrence.

  32. elynjacobs says:

    Seems Andrea has a lot to learn about bc. prevention is not the same as detection, and finding cancer early is certainly no guarantee against recurrence. changing the cancer friendly environment certainly helps, but as said, even early found cancers have been developing for many years…plenty of time to plant seeds elsewhere, and cancer is sneaky. Andrea didn’t actually say that screening is prevention (altough implied) but she is completely wrong that early stage cancer is completely curable, and completely ignored the fact that many who were treated with early stage cancer die or suffer permanantly from the treatment. Thank you for this post, and maybe with any luck she and they will wisen up and start promoting the funds for research that cures cancer, not funds that line the pockets of others. and yes, no one has “had” cancer…it will forever be with us.

  33. Jackie Fox says:

    I agree with Debbie, I was also diagnosed with stage 0 DCIS and it’s a very confusing diagnosis, for many reasons. My doctors used the word “cure” and I’ve also heard other doctors describe DCIS in terms of being “cured” if you have a mastectomy like I did. From the way Ms. Mitchell described her cancer, I wondered if that wasn’t also her diagnosis. I realize she has a right to her privacy but in telling only part of the story and not sharing which stage she was diagnosed at and why doctors describe it in the terms they do, she added to the confusion.

    Like Debbie said, we’re happy to believe good news and I still feel incredibly lucky to have had mine detected by mammogram and surgically removed before it had a chance to become invasive (and based on my situation, an oncologist told me I had a 50/50 chance it would). Sure, I’m on the cancer watch list and taking preventive Tamoxifen, but my prognosis is excellent–my oncologist said I’m back to my lifetime risk and my doctor told me I’m back at baseline.

    But is that a cure? A cure would mean no one would ever get metastatic breast cancer again. That’s very different from having an excellent individual prognosis.

    Excellent post, excellent discussion.

  34. feistybluegecko says:

    One sentence from MJ’s comment really struck me as being a very clear statement of the reality of a Breast Cancer diagnosis. What a useful sentence this would be to convey one of our messages.

  35. feistybluegecko says:

    Oops – and the sentence is “Breast cancer is a sneaky, horrible disease, with a life-long chance of metastatic recurrence.”

  36. Sandra Spivey says:

    Peggy Flemming made similar statements about her breast cancer as Andrea Mitchell. When Peggy was on a local radio station in 1999, I asked her if she was still seeing her oncologist after she had been “cured” of early stage breast cancer. She said of course. I asked why she would need to do that if she felt she was cured. She said follow up is essential. Then I mentioned that if other women hear that Peggy Flemming feels like she’s cured, they may no longer seek follow up appointments and could miss recurrences. She apologized and I have not heard her throw around the “cure” word since.

  37. […] “Dear Andrea Mitchell: Early Detection is Not a Breast Cancer Cure” by Katherine O’Brien of ihatebreastcancer […]

  38. martindufresne says:

    It seems to me that to speak of people who “have had” cancer is to include in the population those who are not showing signs of it anymore, as opposed to strictly those who are. There needs to be an expression to distinguish these two groups and I don’t see how “have had” logically infers “will never have again,” as most posters here seem to suggest.
    As for the word “curable,” I guess people will define it as they wish but if it is fact that over 70% of people who have had breast cancer (katherinembc’s own statistic) do not go on to have a recurrence after treatment- and I know quite a few who haven’t -, I don’t think the word “cured” is to be outlawed or treated as a falsehood, even if one cannot, at this point in time, ever know for sure whether one is.

  39. JR says:

    MBC is a painful topic, no doubt, especially for those living with it. However, I also think it’s how you present the statistics/odds: is the glass half full or half empty? Yes there are many women who, despite their vigilance and treatment regimens, will succumb to the disease. But, putting this into perspective, remember that 7 out of 10 women who present with node-negative breast cancer at the time of diagnosis and have only surgery or surgery/radiation will not have a recurrence. And for the other 30% who stand to gain from further treatment, there is maybe an additional 50% risk reduction with adjuvant chemotherapy and hormonal therapy. So actually, you see a great many women who are OVERTREATED, but that’s because the science is still not good enough at weeding out which women will be fine with local therapy and which ones require systemic therapy. Yes OncotypeDX is a step in the right direction, but we’re not there yet. However, at the end of the day, there is maybe an 80-85% total survival rate. Not overwhelming, but still good. So there is greater reason to be hopeful than NOT hopeful when a woman does not initially present with overt metastatic disease.

  40. cwh says:

    @Annette, Andrea won’t know whether she’s got the kind that doesn’t come back until/if it does. That’s the problem with saying things similar to what she said. Too many women who have recurrent disease after an early stage diagnosis had no idea that recurrence was possible. More needs to be done to prevent bc and to fund treatment for recurrent cancers.

  41. […] on the verbage she chose and my objection to the past-tense idea that she had breast cancer. My Cancerchick blogger friends have covered it more succinctly than I could, and while I think Mitchell is a little kookoo for assuming her cancer […]

  42. […] have also bristled at the description of breast cancer as “completely curable.” On the I Hate Breast Cancer blog, Katherine wrote an open letter to Ms. Mitchell.Early detection is not a cure. About 20 to 30 […]

  43. […] bloggers have bristled at the description of breast cancer as “completely curable.” On her I Hate Breast Cancer blog, Katherine O’Brien wrote an open letter to Ms. Mitchell. Early detection is not a cure. About 20 […]

  44. Tami Boehmer says:

    Thanks for bringing this to light. I’m a stage IV breast cancer survivor who was diagnosed early and given a great progosis only to have it return five years later. I was a little shocked by her announcement, but thought it was just me. I guess we all make mistakes, and I’m glad you pointed it out.

  45. beezy says:

    thank you all for your answers and info. i was diag. in 2008, stage 3 triple neg. my right breast was removed. i was diag. w/ lupus in 2001 and had endomet.@ 18 yrs. my mother was given DES before i was born. i was wondering how many of you with breast know if you are DES daughters

  46. Robin Hacker Caito says:

    I agree, whole heartedly. I was diagnosed in 97, stage 1 ER +……chemo, radiation and 5 yrs of tamoxifen. I was talked out of a mastectomy because, I was assured, I would regret the scars later in life. WHAT??? I really, really right now. I, for, one think the pinkwashing is hurting more than helping. It’s making Breast Cancer seem fluffy and fun, A cotton candy pink sorority you all want to join. It’s no party and it steals many aspects of your life. They give you this 5 year mark and you guard lessens. My cancer came back 7 years later and is now in my lymph nodes and liver. Cancer is not a gift. It bites.

  47. […] if (titleincell == 'yes') {document.getElementById('splittitletext').style.display = '';} } Dear Andrea Mitchell: Early Detection is Not a Breast Cancer Cure#igit_rpwt_css{background:#FFF;font-size:12px;font-style:normal;color:#000 […]

  48. Jody says:

    My daughter and I both have enjoyed reading your blog! With 2 of her great aunts and her great grandmother having had breast cancer (all very close) we are always looking for blogs to share amongst family and friends! Is there any other websites you can recommend? We have stumbled upon quite a few like http://www.breastcanceranswers.com , breastcancer blog networks and websites of that nature that we want to share with family and friends!

  49. Rita says:

    I am triple positive (hormone receptor and the Her-2 gene). I am about to begin chemo and Herceptin. I am confused as to why the five year- survival rate for early-stage is only hovers between 90 and 95 percent…should it not be higher? Chemo is already considered aggressive for early-stage cancers…I am getting it b/c of being Her-2 positive, and because I am under 40. Does chemo not “get it all?” Surgeries take out the cancer…doesn’t chemo get any malignant cells that the body scan can’t find? Or do new malignant cells take over for some patients even after chemo? My oncologists have not really given me answers. Have anyone else’s oncologists discussed this issue?

  50. Patricia Walsh says:

    Very interesting blog on bc. all invasive cancers are sneaky. bc cells can become immune to chemo treatment. eventually no amount of treatment will contain it. There must be millions lf pounds or dollars raised each year to combat cancer. I know this is a cynical view, but why find a cure for cancer when there is so much money to be made (by the drug companies) in treating this f……. disease. Silly me use think that treating bc meant that it could be cured.

  51. Elizabeth says:

    Thank you for mentioning inflammatory breast cancer. You are right, it does not have a lump. In addition, it does not usually show on mammograms. I am grateful to have had a GP who recognized it right away and had the good sense to refer me to a major cancer center.
    I am already growing tired of those who had more typical breast cancers, who had lumpectomies, or even simple masectomies (no or few lymph nodes removed), but no chemo and maybe a little radiation, coming up to me and saying “I know exactly how you feel, but you will be fine real soon” or “even if they do a masectomy, they will reconstruct you before you even wake up.” I am facing at least a years worth of treatment that will include monhs of chemo, a modified radical masectomy with massive lymph node removal, radiation, and hormone treatments. Reconstruction will not even be an option until after the radiation because of the expected doses. I have a 50% 5 year survival rate, rather than their 90% of more typical breast cancer patients. With the amount of lymph node removal, plus radiation of remaining lymph nodes, I am almost guarenteed to have restrictions on the use of my right arm for life, which may end my career, something I am more concerned about than how I look.
    I intend to beat this, but the message has got to get out. Breast cancer has more forms than just a lump. And it can still be very very life changing or even deadly!

    • katherinembc says:

      Hi Elizabeth
      thanks for reading–there are a couple of groups specifically for women with IBC: http://www.ibcsupport.org/ and http://www.eraseibc.com. I believe they are both on FB, too. Hang in there.

      • Elizabeth J. says:

        Hi Katherine, thought I would drop you a note here, it’s a year and a half later. I have had chemo, surgery, and radiation. We thought I was through everything except the hormonal treatments, and then it came back in my spine. More radiation, and adding a very nasty monthly shot to the treatment plan, with plans to add a third drug as soon as I finish some dental work. (Does the pink crowd know that while you are on certain drugs that you will not be able to get things like root canals, extractions, or implants for years without risking major jaw problems?) And then there is fatigue and neuropathy and let’s not forget lymphedema. I’m still hanging in there, but even if they came up with a magic cure, I will have scars and disabilities for life from the treatments I’ve already been through.
        Some things I’ve learned: Life is a gift, but cancer sucks. Positive thinking may make you easier to be around, but it doesn’t cure anything. Hair grows back different, if you are middle-aged that means grey. God may not choose to give you the miracle you asked for, but He is with you through it all.

    • Elizabeth, if you want a great IBC support group on Facebook, befriend me (Claudia Nixon Fauver) and I’ll invite you to join the two closed groups I belong to there (no one other than members of the group can read the posts, so we can vent, cry, yell, scream, etc., all we want and not bother anyone).

      I was stage IIIB when I was dx back in 2007 and am NED right now.

  52. ruthless says:

    I am amazed how people with cancer can be insensitive to others with cancer, it’s not a competition of who has the most/worst kind-it’s a competition against the cancer itself.

    My high school friend lost her daughter at age 4 to cancer. A year or so after she was working with a client complaining about her sick kids-my friend said ‘oh, I know how you feel’ the woman told her that there was no WAY she could understand the hassle of sick kids-my friend said ‘Actually I DO know, you see my daughter recently died and she had cancer’ that pretty much shut her up. She took some time off after that, she’d pretty much had enough of dealing with people.

  53. Diane Fleming says:

    This comment hits home! A lot of my friends and family don’t seem to grasp the situation of stage 4 BC. It won’t heal or drop a grade. Thank you!

  54. Jane C.H. Garcia says:

    People are just terribly uneducated and have about zero interest in improving that. If I had a buck for every time someone claimed their friend/relative/etc. had breast cancer and now has brain cancer or bone cancer or liver cancer, I’d have myself a very nice five-star dinner out somewhere. Ummm….no, your loved one doesn’t have all of those cancers as that implies they have all of those primary cancers and while it’s possible, it’s one hell of a BAD lottery ticket to win. Your loved one has breast cancer with metastasis to another body part. That means they have breast cancer that’s spread to their other body part – which isn’t really relevant. And it’s still BREAST cancer.

  55. […] central tenets is that early detection is not a breast cancer cure. That’s been said before here, here and here and I’m sure countless other places. In my own writing, I have frequently […]

  56. Nan says:

    I’m sorry you have stage IV cancer – but you sound bitter and perhaps a bit resentful that Ms. Mitchell has reason to be extremely optimistic. You’re also engaging in some semantics here'; the majority of women with early stage 1 cancer don’t have a recurrence – and are therefore essentially ‘cured.

    • katherinembc says:

      Hi Nan
      If I am bitter it is at the “selling” of breast cancer as Noble Journey that all overcome except for a few poor and unfortunate souls, of whom it is often implied didn’t take care of themselves or were nursing home residents who had lived an enviable lifespan. Mitchell may indeed have an awesome prognosis–I certainly hope so and wish her nothing but the best.

      However, as journalist, Mitchell has an obligation to be accurate. Was she accurate? No. She is NOT 100% cured. She will never know she is cured until she dies from something else. When you stand on a world stage addressing millions of people, you have an obligation to be above reproach. Mitchell wasn’t.

      Here is an objective source that clearly spells out Mitchell’s errors:
      http://www.healthnewsreview.org/2011/09/with-best-wishes-for-andrea-mitchell-some-criticisms-of-her-message/

      It is true that the “majority” of people treated for early stage breast cancer won’t have a recurrent (metastatic or otherwise). However, 30% will go on to join me and the 150,000 other US people currently living with metastatic breast cancer. Note that very few people are like me–metastatic from their first diagnosis. That’s only the case for 6 to 10% of the people with metastatic breast cancer.

      Now, what do you suppose the remaining 90% of people with metastatic breast cancer originally started with? That’s right, early stage breast cancer. So from a semantics perspective, 90% of the people with metastatic breast cancer were originally treated for early stage breast cancer. This year (as in every year) 30,000 US people will die from metastatic breast cancer. In the aggregate, perhaps that doesn’t sound too bad. After all, 71,000 US women will die of lung cancer this year, too. But if you were to seek out those who lost their mothers, daughters, sisters, aunts, wives and grandmothers, I believe they would care not a fig for semantics. It just hurts. Ignoring us or pretending this is some kind of anomaly isn’t the answer.

      • Nan says:

        I understand where you’re coming from – and before I respond to your comments, I do want you to know that I’m aware of women with stage IV cancer who are alive and doing reasonably well fifteen, twenty, (and in one case, apparently thirty) years post that diagnosis. Most have had to go through additional (sometimes repeated) treatment, but they’re most definitely still here. Obviously, there are many women with advanced stage cancer who don’t achieve long-term survival, but I know it’s by no means a ‘hopeless’ diagnosis, especially today. There are some extremely promising genome-centered treatments on the horizon – and I truly believe that in the not too distant future, cancer (of all stages), if perhaps not curable, will at least be fully manageable – something akin to diabetes.

        I don’t think Ms. Mitchell is misleading anyone by suggesting that early stage cancers are curable. If your objection to this characterization is rooted in the theory that until a person is actually on their death bed without being re-diagnosed, we don’t know with certainly that they’ve truly been ‘cured, ‘ then using that reasoning, NO disease can truly be considered cured – because any disease can potentially reoccur before a person takes their last breath.

        Where I would agree with you is that cure (in any disease scenario) cannot be ‘assumed.’ Just as there are women with advanced cancer who live for decades, there are women with early stage cancer who don’t.

  57. Nan says:

    Also: While one can probably assume that all cancer at one time was ‘early stage, I believe your statistic (that 90% of metastatic cancer began as early stage) is misleading. I think the reality is that a large percentage of the statistical group you site did not discover their cancer in it’s earliest stage (stage 0 or 1), and many had.some lymph node involvement when first diagnosed. For women whose cancer was caught very early – with clean margins and negative nodes, the vast majority do not go on to develop metastatic cancer.

  58. katherinembc says:

    Nan–
    I understand Sweden is a lovely country. I hope you enjoy your trip there to collect your Nobel Prize. Tell the King I said hello and that you are truly AWESOME for having rewritten the annals of hematology/oncology as we presently understand them.

    I would love to meet your amazing friends. Clearly the rest of us Stage IV saps are just doing it wrong.

    Seventeen years is pretty good. I believe one doctor descried Katherine Russel Rich as an “outlier.”

    http://www.nytimes.com/2012/04/07/health/katherine-russell-rich-who-wrote-of-cancer-fight-dies-at-56.html?_r=0

    She died in April 2012.

    How would you describe your remarkable friends? Perhaps “undocumented” is the word we’re searching for? Or maybe “anecdotal”?

    Breast cancer is unfortunately different when it comes to “cured.” Lance Armstrong IS cured. Someone with breast cancer unfortunately doesn’t know.

    Does someone with diabetes get scanned every three months to see how his/her treatment is working? Tell me, with diabetes, does the treatment work for an unpredictable length of time? For some but not for all?

    The chance of surviving breast cancer depends on MANY different factors taken together. Lymph node involvement has a strong influence on prognosis. The more lymph nodes involved, the more serious the cancer. Some of the other factors that affect outcome are your general health, the size of the cancer, hormone receptor status, growth rate, tumor grade, and HER2/neu status.

    The five-year survival rate for non-metastatic breast cancer is 80%.

    So yes, it is true that the “vast majority” of women do not go on to get metastatic breast cancer. Do you why that is? Because we don’t know which cancers will spread and which won’t so we treat them ALL the same. This is kind of like using a shotgun to kill an ant…And even when an early stage woman completes her treatment she has no reassurances about reoccurrences.

    Sorry, Andrea, that’s how it is.

  59. Nan says:

    Boy – you’re a great ambassador for the cause. Your comments are hurtful and downright degrading. If you disagree with me, you can do so with a modicum of civility. Forget about cases that I’ve personally heard about. Go online and read accounts of long-term survivors:

    “Cincinnati, OHJoined: Aug 2006Posts: 8,580

    LuAnnH wrote:

    Yep, you heard me right, THIRTY YEARS WITH METS!!!!! I was at a conference for mets this past weekend and the amount of long term survivors was amazing. They first had all the 5 year survivors stand up and over half the room was standing, then they asked for 8 years, then 10 and on and on. The longest was a 30 year survivor.

    The conference in Philly’s longest survivor was 11 years. I hope the is good news for you all that we are living longer and better!”

    Maybe they’re all liars who got lost on the way to collecting their Nobel prizes. I’m not looking to mislead anyone, but there are cases that defy the odds – and while living in denial isn’t helpful for anyone dealing with cancer, zapping all hope for those who are still willing to consider that they can extend their lives for more than a few years is just as bad – maybe worse.

    I’m truly sorry that your cancer has advanced. Many years ago, I worked on a surgical oncology unit. I lost my mother to cancer as a child, and have cancer myself – so I’m not just some do-gooder lurking in the shadows, spraying fairy dust of hope on cancer websites.

    The targeted therapies are promising – and will hopefully change the way cancer is treated – and perceived. I pray it will happen in your lifetime.

  60. katherinembc says:

    Thank you for you kind words. I accept your compliments and applaud you selfless interest in the welfare of the 150,000 US people currently living with metastatic breast cancer.

    Median survival after diagnosis with metastatic breast cancer is three years. There has been no statistically significant improvement in the past twenty years.
    (American Society of Clinical Oncology [ASCO] Report – 2008)

    Despite the decrease in cancer mortality rates since 1990, the actual number of Americans losing their battle with the disease has hovered around 40,000 each year since at least the year 2000.
    (American Cancer Society statistics 2000 – 2011)

  61. Nan says:

    Maybe my recovery from a recent lumpectomy is affecting my ‘sarcasm detector’ -but I’m honestly not sure if your last response is sincere, or another swipe at my integrity.

    Of course, I understand the statistics are poor for advanced stage cancer. Even Andrea Mitchell would probably acknowledge that. Maybe I’m wrong to cite the folks who beat the odds. I certainly don’t want to confuse or give false hope to people who have come to terms with this difficult diagnosis.

    In fact, maybe you can give me some guidance. We have a family friend (under fifty) with stage IV cancer who has been in remission for a few years, but the cancer is back with a vengeance. She is currently trying to raise money to be treated by an out of state doctor who has a long list of complaints against him by angry patients who feel they were duped by his false claims. He’s also been investigated (probably multiple times). My husband thinks we should bring this information to her attention, I take the position that this information is out in plain sight and easily discoverable just by typing the doctor’s name in any search engine. There’s no way she would not have seen what we’re seeing, but apparently she still wants to pursue this treatment. Would you pass this information on in this situation, or just support her decision?

    • katherinembc says:

      I can only speak for myself…I’ve known people who pursued what I would call dubious treatments in the face of all logical evidence. In one case, after a fellow Stage IV patient of the dubious doctor died, the remaining patient rationalized it was because the dead woman hadn’t pursued the dubious treatment earlier. It is your friend’s choice–it might not be what you would do or what I would do but it’s her call.

      • Nan says:

        Thank you, Katherine. Looks like we’re both night owls.
        I feel that she probably knows the guy’s a quack, and I don’t know that it’s our place to say anything if she feels there’s at least some chance he can help her in some way.

        Does anyone understand why some people do survive long-term with stage IV cancers? Has there been research to identify consistent factors – if any, or is it just a mystery that no one understands?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 2,278 other followers

%d bloggers like this: