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Stanford Medicine


Breast cancer awareness: Beneath the pink packaging

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often chronic diseases share their unique stories. Our latest comes from a breast cancer patient from Salt Lake City.

Over the years, you may have participated in pink-themed races and donned pink shoe laces in an effort to demonstrate solidarity and support regarding breast cancer awareness.

Good intentions notwithstanding, let’s pause for a moment to consider what has truly been accomplished since National Breast Cancer Awareness Month was launched in 1985. Have fewer people gotten the disease? Have survival rates improved? The answers are disconcerting:

  • Mortality rates remain depressingly flat. In 1988 approximately 40,000 women perished annually from breast cancer; in 2013 39,620 women and 410 men will have died from the disease.
  • Today, approximately 162,000 women and men are living with metastatic breast cancer in the U.S. Some of them developed metastatic disease five, 10, 15, or even 20 or more years after their initial diagnosis. Many are relatively young – in their 20s and 30 – with growing families.
  • A diagnosis of early stage breast cancer provides no reassurance because the disease will eventually spread or “metastasize” to other organs in an astounding 30 percent of these patients.
  • Median survival after a metastatic diagnosis is only three years – with no statistically significant improvement over the past 20 years.

Imagine for a moment that you’ve been diagnosed with early stage breast cancer. You have confidence that if you follow your doctor’s recommendations, you’ll live a normal life – after all, you have been made “aware” of breast cancer! But that doesn’t always happen. Take my case: I was diagnosed with early stage breast cancer at age 39 after 4 years of misdiagnosis. I experienced a double mastectomy, six cycles of the most toxic chemotherapy available at the time, followed by five years of Tamoxifen, a hormonal therapy. I became increasingly convinced that my experience with breast cancer was safely behind me each time I underwent annual cancer checkups with normal results.

Fourteen years after my initial diagnosis, I developed a dry, persistent cough that three doctors misdiagnosed as asthma, GERD, or post-nasal drip. After four years of chronic coughing I became hoarse. Finally a doctor recognized that my vocal cord was paralyzed. He ordered a scan that revealed a tumor pressing on the laryngeal nerve, which in turn caused paralysis.

A biopsy revealed metastatic breast cancer that was hormonally receptive. By then I had developed multiple lung tumors, a liter of malignant pleural effusion and pericardial effusion. A catheter was inserted in my chest to drain the fluid until it disappeared several weeks later. Weak, ill, and terrified, I didn’t know whether I would live for another year and was determined to be as active as possible to enhance my odds of survival.

Although my oncologist recommended chemotherapy, I sought a second opinion from an oncologist who suggested hormonal treatment that has thankfully allowed me to enjoy a better quality of life. I also consult with a naturopathic oncologist regarding supplements and complementary therapies, and I’ve adjusted my diet to exclude sugar and processed foods.

My medical team is rounded out by a wonderful acupuncturist whose skills have enabled me to avoid anti-depressants. For emotional support, I exchange encouragement and information with people online who are coping with metastatic disease, and my husband has retired early so that we can enjoy time together while I am still well enough to do so.

After eight years of misdiagnosis, I’m left with little faith in the diagnostic capabilities of the medical establishment and have no illusions about living a normal life. Yet I’m one of the lucky ones: relatively old (age 60), not on chemotherapy, able to participate in daily activities, and currently pain-free. Conversely, most patients I know suffer terrible side effects from both their cancer and its treatment, such as fatigue, nausea, blistering skin, neuropathy, and excruciating bone pain.

In retrospect, I wouldn’t change any decisions regarding my disease and its treatment. But I have to realize that “early stage” breast cancer, with which I was initially diagnosed, is significantly more lethal than the media conveys – given that nearly one of three early-stage patients will eventually succumb to their disease.

It’s obvious that the battle against breast cancer, with incessant emphasis on “awareness” and early detection, has been watermarked upon the canvas of failure. Increasing awareness – especially when it’s been heavily sugarcoated – will never alter the course of this disease or reduce the victim count. Only by deriving a mechanism to irrefutably prevent breast cancer and effectively treat those who already have it will we forever close the book on stories such as mine.

Anne Loeser is a retired software project manager who was diagnosed with metastatic breast cancer 18 years after developing “early stage” disease. A passionate researcher, she continuously shares information and support on multiple forums with others who are dealing with terminal breast cancer.  Anne currently resides in Salt Lake City, Utah with her husband and parrot.

Related: Pink Think/The hitch with the breast cancer marketing pitch

52 Responses to “ Breast cancer awareness: Beneath the pink packaging ”

  1. elimar Says:

    Yet clinicians actually seem proud and cheerful when they deliver the news that the BC was “detected early.” The actual incidence of recurrence for those diagnosed early is still appalling, even with the advent of all the highly touted screening methods and treatments currently available. Technology has advanced, but the mortality from this disease is still in the dark ages.

  2. Kay Evans Says:

    As a stage IV breast cancer patient myself, I echo what Anne has said. My cancer recurred 10 years after my original stage II diagnosis. Early detection and treatment may be important, but it is not a guarantee. We need research to give us better options that will allow us to live longer with better quality of life. I too am lucky. I continue to work, parent, and live life to the fullest. So many others live with debilitating side effects and pain. It is a relentless, cruel, and horrible disease. I believe the world is now “aware.” Let’s move on and put funding into actually doing something about it!

  3. Mic Anderson Says:

    well said!

  4. Janet Pierce Says:

    My breast cancer was also misdiagnosed despite regular mammograms, so I’m certainly in agreement that all the pink pushing for awareness and much of the money spent on mammograms could be better used for more research into prevention and treatment, and possibly more accurate and less intrusive methods of detection. However, it isn’t exactly correct to say that the mortality “rate” is flat: from 1988 to 2014 the population increased from about 244 million to 317 million, so the rate (at a first approximation, not corrected for age distribution) decreased by about 23%. Considering that there are more older women now than in 1988, the decrease would be a bit greater.

    The rates are still way too high and we need to support research rather than just the current inaccurate and expensive testing procedures.

  5. Jeanie T Says:

    This is a worthy read! Thanks for publishing it.

  6. Virginia Says:

    I would like to add my support to Anne’s message and offer yet another example of where our “early detection” message misses the mark. How many of us are aware that one in ten breast cancers do not form a discernible lump? I learned this the hard way just over three years ago. As the daughter and sister of women who had breast cancer I was naggingly careful. Like Anne I developed, what appeared to be, GERD or a similar issue. What I actually had was Stage IV Metastatic Breast Cancer. Mets throughout my ribs and large bones. Even after diagnosis it took a needle-guided MRI half an hour to find my “lump.” I will never have a cure.

    Early Detection was my mantra. While I do believe that it is an important message I’m not sure how much more aware we can become. Now we need to find a cure to stop this disease dorm taking 40,000 a year. We also need to continue finding ways to turn metastatic disease into a chronic illness.

    My two daughters who are in their twenties are very aware. Will they have to have profolactic mastectomies as their only hope of prevention?!

  7. Terri T Says:

    Absolutely correct. I’ve been stage IV from the start almost 5 years ago with inflammatory bc plus spinal bone mets.

    Please be aware of where you contribute funds to. Research needs to be funded to change these statistics, to prevent women from metastasizing and to stop metastatic cancer from progressing. is one organization where 100% of funds go into research. is another organization that provides funds for research.
    People are well aware of breast cancer today, we do not need funds going into awareness or to pay CEO’s $650,000 yearly to organize a walk.

  8. Stagefree Says:

    Having been diagnosed with MBC, 20 years after my Hodgkin Lenfoma experience, I am focused more on QOL rather than agressive treatment, as there is no definite cure yet. So, early diagnosis helps beat the cancer cells.. But the gamble continues till last breath.. The pink ribbon is for small children to accessorize their hair.. Please let’s all wake up to the reality that the cure is needed, not the current toxic chemo, rads and hormones which just delay the doomsday for MBC patients.. Considering their side effects on the daily quality of life, MBC patients pay so much more than the current medical resources offer. Not being unthankful to our treatment, but pink is way too Disney for this experience.. We would prefer less pink talk and more funds for research for the cure.

  9. Exbrnxgrl Says:

    Well thought and well stated. Thank you for lifting the pink veil.

  10. Denise Neish Says:

    Great article! Awareness and early detection messages are not enough. That message isn’t helping those of us who did not catch it early. Let’s insist that more research dollars are spent on finding a cure for metastatic breast cancer rather than just telling everyone to get diagnosed earlier!

  11. Beth Cioffoletti Says:

    Thank you for telling the real story about breast cancer awareness, Anne, and in a way that is clear and easy to understand. When my hip fractured in 2 places, metastatic Breast Cancer was the last thing I suspected. Five years earlier I had been treated from Stage 1, tiny, “low risk” breast cancer. They told me I was “cured” and did not need chemo. I’m now dealing with cancer that has metastasized to my bones and my brain.

  12. sturdyc Says:

    I so appreciate this article. “Raising awareness” – it’s important but has become distracting from the overwhelming need for more research and effective treatments, buried by pink ribbons. And it’s hard for anyone post Stage 1 or 2 successful treatment to even contemplate the cancer coming back. But it does, for too many, and that’s where the focus should be. For those of us who belong to the Inspire MBC community, Anne have been a font of information, support and caring.

  13. Kelly P Says:

    I had a clear mammogram in September and because I was lucky enough to be in a high risk program I had an MRI in Dec. It showed a large mass which turned out to be lobular breast cancer with a 10cm. tumor. Within weeks we discovered mets to the ribs, spine, hips,pelvis, sternum and skull. I had mammos every year diligently to make sure that I would detect it early….so much for that! Early detection for most is still very important but I agree prevention and treatment options should be the focus.

  14. Monica Says:

    Thanks for this piece. The focus on “early detection” and being a “survivor” seems to imply – to me, anyway – that those of us who cannot be cured are somehow failures, like if we had just gotten ourselves diagnosed earlier, we would not be in our predicament.

    I know that most are very well meaning when they participate in all the pink hoopla, but we really need to change the focus from screening only to screening AND research.

    It is also infuriating that a lot of the money that is raised from all these pink products and events just goes to the corporations who make the products, and not towards research to save lives. My kids will be much better off with me than with a bunch of pink junk.

  15. Ann dangelo Says:


  16. Maria Dragunea Says:

    Definitely research and follow-ups are mandatory for this illness.
    I was going through a similar experience and I also learned that we are never really cured of breast cancer. For that reason we need information and ways to keep updated (us and our doctors as well). Thanks for sharing this information.

  17. Trish M Says:

    Thank you for writing a great article. About 40% of my friends have had early stage breast cancer and believe that thanks to their great doctors they are completely cured. In fact, when I say my cancer is not curable they accuse me of being pessimistic. It surprises me that even women who have had breast cancer have no understanding of metastatic disease. Women are being lulled into a dangerous sense of complacency. Thank you again for writing this.

  18. Sandra Trumbower Says:

    I am in total agreement with Ann’s points and perspective. I would like to add that I find the percentage of money that is donated that goes into actual research, as opposed to administrative costs, is appalling!

  19. Clare Says:

    Very well said. Even with the raised awareness and being treated in one of the top 5 hospitals in the US my primary care misdiagnosed my recurrence of Breast cancer as 1)asthma; 2) constochondritis; and told me I did not have cancer. 6 months later a CT scan showed bc throughout my skeleton, in my lungs, liver, and eye. My recurrence was 7 years after my first diagnosis. As breast cancer patients we need to be encouraged to speak up about changes in our bodies, we need to be told to watch for bone pain and back pain and any breathing issues. I’m astounded that it was my chiropractor and not my primary care doc who said, there is really something wrong here, you have been feeling badly for too long. Too often we are encouraged to think everything will be fine if we make it to 5 years…..this just doesn’t make sense if 30% of us move on to stage IV. Thank you for writing this and for publishing.

  20. sally Says:

    great article! thank you for your efforts to increase Accurate awareness.

  21. Karen S Says:

    Thank you so much Anne for a well written article about us. I, too, was misdiagnosed for 3 years and then told by my surgeon that I am “curable”. A year and a half later I have bone mets. You explained it well why met sisters are not very fond of pink October. Thanks again for bringing attention to this terrible disease.

  22. Joanne Says:

    Your research has been so helpful to many of us that have gotten to stage 4 in different time lines. I also thought I was cured of this monster disease after bilateral mastectomy, intense chemo, radiation and Arimidex (anti hormonal drug) and had no signs of cancer for 6 years. I then started getting pains in my back which were mis diagnosed as pulled muscles or a disk problem. Finally I went to a sports doctor who insisted I have a MRI which showed cancer had returned. I had some more radiation and it just got worse to the point where I was in a wheelchair. In 6 months it was discovered in my lungs and liver so chemo for life. I live with the side effects but am bake to walk and enjoy a quality of life that is acceptable to me. Thank heavens for acupuncture as it keeps the pain bearable. Thanks to you I have questioned my treatment and am able to have my onocologist and Traditional Chinese Medicine doctor work to get the best treatments for me. Thank you for being our spokesperson.

  23. Molly Lindquist Says:

    You took the words right out of my mouth (or keyboard in this case!), Anne! Research is the only hope to make this better. And transparency to where your money actually goes! I started a med research crowdfunding site to address this as I wanted to take back some semblance of control after my “early stage” diagnosis knowing that my current NED status can change at any time. And knowing that my daughters (now 5 and 7 years old) face a higher risk of BC, and I would give anything to prevent them from walking my same path. Check out if you have a chance – would love your thoughts! Another great organization is Awareness into ACTION!! Thanks for sharing your story!

  24. Caroline Says:

    Thank you for raising awareness to this aspect of breast cancer.
    I would like to thank the researchers at Stanford for all of their efforts in finding a cure. My hope is that their anti-CD47 which will be going to phase I clinical trial this Summer or Fall can offer all stage IV cancer patients a cure. Call me optimistic, but hopeful I must remain.

  25. Ann C Says:

    Thank you for a great article. I was diagnosed at age 40 with a Stage IV metastatic disase after getting the baseline mammogram at age 35. I have developed brain mets. There seems to be more brain mets the longer we are able to live with metastatic disease.

  26. Judy Perkins Says:

    Another great article, Anne. As someone who thought I had beat cancer (because my oncologist told me that), I went from DCIS in 2003 to Stage 4 in 2013. In addition to partnering with Inspire, I would recommend that Stanford also support NBCC’s Breast Cancer Deadline 2020. We are trying to change the way research is done in order to find a CURE not just incremental improvements in treatment.

  27. Jocanuck Says:

    I never had a palpable lump just pain in my breast! Several doctors told me not to worry as breast cancer/tumours don’t hurt….So why am I dying from this disease misinformation…? Great article Anne!

  28. Lori B Says:

    As Always Anne, resonate, poignant and spot on… willing to say what many simply do not want to say.

  29. Virginia Dimpfl Says:

    Thank you for writing this.I have just been diagnosed with MBC just one year after completing my treatment for Stage IIB cancer and MBC is in need of accelerated attention, funding and awareness to get to the cure.

    My attitude will help me deal with this disease, but it will not cure it — and we need a cure — not more people cheering us on because we do what we need to.

  30. Kiane Says:

    Thanks for using your many talents to research and write on such key issues as the often neglected subject of Metastatic Breast Cancer. After many years of mammograms and ultrasounds, I found myself in agonizing bone pain. Using a cane and finally a wheelchair, subjected to many tests, I finally had a biopsy of the hip bone which revealed that I had lobular breast cancer which had metastasized to hip, spine, skull and fibula. Little did I know that lobular cancer is seldom diagnosed in Mammograms or ultasounds. I had fully bought the prevailing myth that regular mamos would find breast cancer. Today, MBC is incurable and I will be treated all my life.

  31. Pam, DESdaughter2 Says:

    Hi there…we are forgetting about DES, given to millions of mothers between 1938 to was later found out to be a cancer causing agent and those exposed mothers and daughters are more prone to breast and cervical cancers…the very same companies who are coming up with today’s cures are the very same ones who passed out DES without any clinical trials..

  32. Teresa Says:

    Thankful to hear from those who have been there. Common thread…what we are doing for the past 50 years is not working. So many lives and so much wasted time and money. Thanks for the information, lets get it out there so people can really make an informed decision.

  33. Laura B. Says:

    I’m alive today, at 67, because a routine mammogram showed a large tumor never felt in spite of second mammogram marathon of a couple of hours because of seeing not feeling, but biopsy showing the beast was there.

    I’m alive today because of annual bloodwork ten years later suddenly showing my breast cancer markers were out of range, with an immediate PET/CT showing my bones were quite full and it had started in the lungs.

    I was told five years after the first bout–including mastectomy, very harsh chemo regime, then six weeks of radiation including some organs in there–I was cured.

    If it weren’t for science I’d be dead by now for having it twice….never with any signs at all.

    But that said, I had 3-1/2 years of quality of life which included fighting my way staying inside the traditional treatment box and outside as well. In fact I’m now driving four hours across the state for twelve weeks to receive integrative low-dosing chemo only because we were gone for a month and I didn’t receive a 40-year old out-of-the-box treatment during that time allowing my markers to explode and it going into my liver.

    Research has led the way to help multiple thousands of us. But as a former business administrator for an international company I also know profit is a main motivator, even when lives are at stake. That’s the human condition and it transcends boundaries.

  34. Victoria Says:

    Excellent article. Very well said. I was Stage 2 something when I was diagnosed 2 years ago. I find myself really irritated by the Pink Think of the people around me who tell me that it was “caught in time”, I look fine, and am clearly “cured” now.

    Horse manure. My oncologist was crystal clear with me – it’s treatable she says. The word “cure” has never once passed her lips and I deeply appreciate that. Because I know women who have had recurrences 2 and 9 years later.

  35. Helen.D Says:

    I was diagnosed with early stage BC at the age of 38 in May 13. No family history or risk factors. Unfortunately my tumour was triple negative so no treatment options other than chemo. I went through 6 mths of aggressive chemo and a double mastectomy, followed by 5 weeks of radiotherapy. Unfortunately my cancer came back in my lung 4 mths after finishing chemo, it just didn’t work for me. I am 39, I have a young family, I should have my whole life ahead if me. Instead I have a prognosis in and around the 24mth mark….all of this will be under chemo. I don’t want sympathy, I don’t want no make up selfies on Facebook. I want more research, more personalised care and more options for triple negative breast cancer.

  36. Christine G. Says:

    I, too, was one of those women for whom mammography failed to detect my disease. I had a normal digital mammogram in July of 2012, and found my invasive lobular cancer myself in late January 2013. The diagnosis was confirmed in late February. Despite starting on tamoxifen right away, when I had my double mastectomy in April, I was already at Stage IIIc, with all 19 nodes they removed positive for cancer. Then followed 6 rounds of chemotherapy, and 35 radiation treatments. That was all completed right before Thanksgiving. Back on tamoxifen, with clear scans and normal blood work, I started looking for work right after the holidays. I was due to begin a new position on March 24th…in the process of getting all my doctor visits done before then, we discovered that my tumor markers were elevated, and sure enough, I had developed mets in my right shoulder, some of my thoracic vertebrae, and several ribs. So, now I’m on a different journey…one that involves being one treatment or another for the rest of my life, and the roller coaster ride of testing, scanning, and praying for good news. I currently have no pain, and have made modifications in my lifestyle to keep the best quality of life I can for as long as I can. The new job went out the window with the new diagnosis – they were not prepared to take on someone with my situation, and I didn’t want to take on the stress of working for their organization. Certainly, we all knew that my risk for developing metastatic disease was very high, as I was so far along the curve at diagnosis, but I was determined to do all that I could to try to keep it at bay. What I didn’t expect was to have so little time between diagnosis 1 and diagnosis 2.

    Much as I worked in biopharmaceutical development supporting the National Cancer Institute for some time, and believe in the value of R&D and clinical trials, what money I have to contribute goes to local, grass-roots breast cancer organizations, where I know beyond a shadow of a doubt that the money goes directly into the hands of women and men suffering from this disease.

    Thanks for this excellent post!

  37. Leonora Britneff Says:

    It is true that there is now enough awareness already. Ironically, it seems that medics are the ones that need to be more aware of this disease; how many tales of misdiagnosis have I heard already! Especially alarming are the cases in which doctors seem to not want to consider a recurrence when a patient comes with symptoms that clearly indicate that possibility! It should be the first thing considered in a patient that has had cancer!

  38. Roberta Says:

    My thanks to Anne for this excellent article and thanks to this venue for making room for us –
    My story is so similar – Stage 2 14 years ago with the doctor’s words still echoing – stop worrying you’re cured……
    Clinical trials must go on but stronger attention must be given to stopping the advancement of this dreaded disease before it moves on to the next stage – While chemo is a necessary component to our treatment to stay alive – more awareness and money has to be given to curing this at all stages. We need support to be heard – stage iv victims are largely ignored.

  39. RosePenny Says:

    The common thread is that more research needs to be done… we see hopeful clinical trials started, but not enough..not enough. My spread was found by accident.. no symptoms. The medical field keeps on saying how early detection using mammograms finds breast cancer so they can “cure it”… why aren’t women getting follow up scans after being “cured” to catch bc before it has engulfed the entire body? Beat it back as soon as possible, catching it at the beginning of the spread. Giving us a chance of a longer life with better quality of life? Isn’t a 30% risk of metastasis enough to justify a once a year scan? Money, money, money.

  40. Joannafarrer Says:

    Great article explaining just how it is to go through the MBC process. To o much money is spent on awareness. People don’t die from early stage and as so many progress from early stage to MBC more funds need to be focused on metastatic disease. When it truly becomes a “chronic” disease then we will making progress. Forget the cure just keep us alive!!! (please)
    Thanks for this excellent article.

  41. Joannafarrer Says:

    Great article telling it how it really is with Metastatic breast cancer.
    People don’t die from early stage BC UNLESS it metastasises so isn’t it logical that the majority of funding should go towards stopping that happening instead of on the awareness??? The numbers dying from MBC have hardly improved over the years despite the millions spent on awareness. We don’t need a cure if we can truly make it a chronic disorder by stopping the mets from progressing.
    Thanks for publishing the wonderful article.

  42. Joyce B Says:

    I am extremely disheartened by the statistics associated with breast cancer. If 30% of early stage breast cancers go on to Stage IV, then something is clearly not being done. While early detection is definitely preferable to having it found later, it is NOT changing the outcomes well enough for my thinking. I was diagnosed early stage in 2013 and I will forever be looking over my shoulder at this beast and wondering with every headache, every ache and every pain whether the dormant cells have reawakened and are coming back to active status in a place where they can’t “pink” it up. MBC is a horrific disease and so many women (and men) who thought they were in the clear have to hear the words “It is back” and deal with some type of treatment for the rest of their lives…however long that will be. Kudos for a very well written article calling attention to what is NOT being done!

  43. Cindi Says:

    I, too, was diagnosed with GERD, 16 years after initial BC diagnosis, even though I had never once experienced heartburn. Landed in the ER with chest pains. Then and only then I was given a CT to check my heart and voila! Tumor in my lung. Metastatic breast cancer. I’m in Grand Junction, CO. Would love to connect further with Anne for encouragement. How are your vocal chords now?

  44. Fran Tornabene Says:

    I too found my 13 year ‘survivor’ status had come to an end, via pleural effusion & company… I am more fortunate as my doctor saw that my breast cancer had indeed metastasized by noticing the difference in my clavicle bone from an ex-ray done a year prior for arthritis, and the one to confirm the fluid in my lungs. I only had to have one draining, and at the same time the full bone scan and a bone marrow biopsy were done. Bottom line, my MBC include;lungs,liver and all my once lovely bones. I am on arimidex, as chemo would offer no more benefit. I am on a mild anti depressant, and now some strong pain meds. I’m 9 months into this leg of the trip and while, the lungs and liver are not growing much, the lesions on my bones are clearly progressing. I had the benefit of being the 4th of 5 breast cancer victims from my maternal side of my family. 2 of the 3 before metastasized, so I was waiting for the other shoe to drop all along. I’m bumping into 62, I have a team of 3 doctors that are wonderful! My primary has been a great source of help and honestly for many years. My oncologist, is the same as the initial go around, and is very caring and on top of things as well. My pain doctor was new to me, but has been wonderful as well, and she includes some relaxation methods with the meds. I am now only able to take Tai Chi classes, as the bone cancer is mighty risky. These classes are so helpful, it’s amazing. I’m also fortunate to have a great son and daughter-in-law to lean on, as well as a sister and many good friends and cousins. It’s wonderful to ‘meet’ others in the same boat on these forums. And I wish the best care for all of us that we can find.

  45. Casey Says:

    Thanks for the article. Really appreciate the openness.
    Neither a mammogram NOR a Diagnostic mammogram revealed a problem for me — A self exam showed a problem. After pushing to get a biopsy, I was given an invasive breast cancer report; shortly followed by a Stage IV metastasized throughout the bones of the spine diagnosis.
    There is NO history of breast cancer in my family; and I have been (remain) athletic for the majority of my life.
    I am thankful for organizations like MD Anderson, but agree that we MUST push for more research and answers — especially for those of us in the MBC arena. Like triage; our conditions Shout for priority treatment.
    Watching and Praying.

  46. emma dickson Says:

    Thank you for such a clearly stated article.I sometimes think that there is the emperors new clothes issue when it comes to cancer detection.I jumped in at stage 4 when i was 37.They found it on the first scan that i took because i found out that i was high risk.Before i went up the doctor showed me how to do a manual check as she said the scans were flawed.She found escan found it was 5 cm .Post double mastectomy it was 10cm and had starteted in th other breast.

  47. Susan Piper Says:

    My Stage IV diagnosis came 26 years after my initial DCIS diagnosis and mastectomy. A large tumor and two small ones were found in my liver; tumors too numerous to count on the surface of one lung; and multiple mediastinal lymph nodes were positive. I am now 6 years out and have had treatment with an aromatase inhibitor only. My oncologist told me after 3 years that he didn’t expect me to live more than a year!

  48. Elaine Jesmer Says:

    Every woman I’ve met who was diagnosed with stage 4 breast cancer had been meticulous about yearly mammograms. As was I. What is not known by many women is that if your breasts are cystic (lumpy), mammography is probably not the best tool to discover cancer. It is now a law in California, that doctors must inform women with dense breasts that mammography may not be their best source of accurate diagnosis, and that they should consider ultrasound or CTs. It is unfortunate that we need a law to force doctors to give this potentially life-saving information to their patients. But with the considerable amount of money invested in mammography, it’s hardly a mystery that this is the case.

  49. Jeanie T Says:

    Well done, Ann! Fizzy is proud of you, too! This needs to be read by everyone! Absolutely everyone!

  50. Kate Says:

    One of my best friends moved half-way around the world from me years ago, and we lost touch until finally finding each other again. At one point, she mentioned she was traveling briefly to the U.S., two states west of me, and asked if there was any way I might be able to visit her. She also casually mentioned she would be seeing a doctor about a “breast cancer thing.” Since my life was so busy with work and caring for a disabled child, and, in my uneducated mind filled with pink awareness, I thought my friend would be cured since this was an early diagnosis, I failed to make immediate plans to get together. I will forever be sorry for this terrible mistake because my friend developed MBC in less than a year, suffered horribly with ineffective treatments, and died 16 months following her initial diagnosis. I have learned more than I thought was possible about the reality of an early breast cancer diagnosis, and I try to spread information whenever I can to others just as ignorant as I was. I have great difficulty understanding how medical, scientific, and, specifically, breast cancer agencies and organizations fail to present complete information to the public and to individuals diagnosed with this disease. Doing so could push regular scanning to monitor recurrence and would certainly increase awareness that funding is critical for MBC research. I pray every day and donate funds whenever possible for research to find the cure and for better, less toxic, treatments to prolong length and quality of life for that 30% of people who will develop MBC. If you ever want to get to know truly heroic women and men, read their stories and experience the strength and hope and deep caring and support with which they live their lives and help each other. Forget the “pink” filter, get down in the ditches, and do what you can to help find better treatments and, ultimately, the CURE. Many thanks to Anne for writing this excellent article and for always sharing invaluable information, and many thanks to Stanford Medicine for publishing the article.

  51. Diana Says:

    I am just so disheartened to find out that all awareness has done is really just made breast cancer seem like more women are surviving. The truth is breast cancer death in actually up by 10 to 20%. Let me explain why, DCIS or ductal carcinoma in situ. This is what is being found more often than ever because of mammograms. This is about a 30% increase in so called breast cancers, and they are all 99% curable.

    The reason is DCIS is hardly ever fatal, rarely spreads and a woman can go her whole life with it, and never die from it. Its called stage zero, and its the biggest lie in the industry. It skewed cancer survival rates, because of course you survive it. But of the true cancers the ones that can and will spread if you remove the stage zero factor of 30% DCIS from the statistics, the results are frightening. Death from breast cancer has risen in the last 2 decades.

    These organizations that tout be aware mammos save lives, they cover everything in a pink whitewash making people think that a cure is just around the corner. That catch breast cancer early and you will live. No catch DCIS and you will live. For everything else its a maybe maybe not scenario, with years down the road recurrence or METS.

    The reality is we have not cut the death rates at all. We just skewed the data with a frivolous type of cancer that really cant even be called cancer. DCIS. Yes there is a rare chance it may become invasive, but the majority it dont. What needs to be done is all this hundreds of millions of dollars being earned by the cancer awareness groups needs to go to research, not marketing a big lie.

    This much needs to change, and these organizations need to chill on the pink think, they need to be honest and remove DCIS from the statistical data of breast cancer deaths, its skewing the data.

  52. Leslie Says:

    I had stage 2 bc (4.5 cm) 5 years ago with a left breast mastectomy and chemotherapy. For the last 2 years I have had a heavy feeling in my chest and, at times, I feel breathless and have a chronic dry hacking cough. 5 months ago I had a ct chest scan that came back ok but the symptoms got worse over the winter so I went to the doctor and was told I had bronchitis and given an antibiotic but it did not help. As a matter of fact, the breathlessness and dull ache in my back is very uncomfortable. Since I had the ct chest scan 5 months ago I think that should have cleared me of any lung mets. Has anyone had an incorrect CT chest scan for breast mets to lung?


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