Dear Ms. Robach

An open letter to Good Morning America News Anchor and breast cancer “survivor,” 

Ms. Amy Robach


Dear Ms. Robach,

What a journey you have had recently. From what I read in the press, save the persistent chemobrain, you are feeling well. Congratulations! I am quite familiar with the challenges of treatment and surgery, and getting back to everyday life. It looks like nothing can hold you back!

It ends up we have quite a bit in common.

  • Like you, I was diagnosed young and on my first mammogram, when I was 35 years old.
  • Like you, I opted for bilateral mastectomy in hopes that my lobular disease might not occur in the healthy breast also. (You know, of course, that bilateral disease is most common in lobular breast cancer, which is what I have.)
  • Like you I underwent chemotherapy and tamoxifen (5 years was the standard back then).
  • Like you, chemobrain persists.

It seems we have some differences as well.


When it comes to questioning the value of mammography, the New York Daily News quotes you as saying:

“It makes steam come out of my ears, and I have a couple of different responses. First, mammograms aren’t perfect, but they’re what we’ve got, and a mammogram did save my life and if I had waited until I was 50 years old as they suggest, I don’t think I would have been around much longer. So while everyone’s cancer is different, mammograms and self-exams do save lives,”

I have felt that way myself, and we are not alone. There is an intuitive sense that waiting longer means cancer spreads further. Science, however, doesn’t bear that out. However, in April 2014, Lydia Pace, MD, MPH and Nancy Keating, MD, MPH of Brigham and Women’s Hospital in Boston co-authored a report published in JAMA in which they conclude that the benefits of mammograms are “modest,” whereas the risks are “significant.” Overall, mammograms are responsible for a reduction of  breast cancer mortality rates by about 19 percent, even lower in young women. (This journal article is behind a paywall and is not accessible to patients; my summary is based on the published abstract.) A month later a prospective Norwegian study found that in order to save one life, 368 women (ages 50-69) would have to be screened.

According to the National Cancer Institute, there are, indeed, harms inherent in breast cancer screening. Let’s take your age: 40. Per 10,000 women screened over ten years, NCI attributes 1-16 breast cancer deaths over the next 15 years averted by mammogram. Of course, we can agree that every one of those lives is critical – and touches countless more lives, to be sure. But think about the 6,130 who get false positives and the 700 who have unnecessary biopsies. Imagine their anxiety and that impact on their lives and the people who surround them.

I’m not saying mammography is bad, and as you say, it’s what we have. But let’s be thoughtful about it. We know that “catching it early” doesn’t necessarily make for a good prognosis. Many scientists believe that some cancers will spread and others will not, no matter how long they are in the breast. Many scientists also believe that if you are going to metastasize it is likely to have happened before initial treatment begins.

My thinking: Let’s reserve early mammography for those who are at a high risk. Let’s not expose ourselves to the radiation or anxiety that mammography offers any more than necessary. And let’s not delude ourselves to thinking the annual mammogram is the answer, or perpetuate that myth.



The risks of overtreatment are hardly ever discussed publicly. When we add fuel to the visceral fear that breast cancer brings, we don’t always make science-based decisions. So when we lead people to believe mammography knows all, we cultivate a sense that when there is a positive finding we must act, act immediately and act aggressively. Our animal survival instinct kicks in, and there is little we won’t endure when we believe our very life is threatened. The truth, however, is that countless people are overdiagnosed, and undergo harsh chemotherapy regimens and extensive surgeries – both with their own inherent side effects and risks – with little to no benefit on their overall survival. Imagine all you’ve been through, and then knowing it doesn’t make one bit of difference. You can, of course, see why the victory over breast cancer celebrations are necessary – we need to reassure ourselves that we suffered for a reason, even if we didn’t.

Let’s take, for example, DCIS. You can’t catch cancer any early than this “Stage 0” diagnosis, where cells have yet to even leave the milk duct where they developed. While I can’t prove it, the trend I am personally seeing is that women diagnosed with DCIS are seeking aggressive amputations of their breasts and even ovaries to avoid the possibility of future disease. It is a fact that Stage 0 patients can and do metastasize – and it’s likely some do so before their DCIS is detectable. The same is true of women who have hereditary markers for cancer (BRCA1 and BRCA2 positive) – and these women have no discernible disease; rather they have a higher risk of disease.

Each of us must make our own decision when faced with these challenges; we are the only ones who can know what’s right in our personal circumstances. However, we all make decisions in a context, and with the information we have. When much of that information comes from the media – and when that information is not based in science – we make it impossible for a woman and her doctor to make an unbiased decision about her care.



According to Avoiding the Breast Cancer ‘Warrior’ Trap by Peter Bach, MD, you recently spoke at a fundraiser for Gilda’s Club. From what Dr. Bach writes, the heart of your message was about “the fight” against breast cancer. He states,

In her (Amy Robach’s) interview in the magazine of the Federal Government’s National Institutes of Health, Robach declares that “there are nearly 2 million breast cancer survivors in this country, and we are thriving, excelling, living.” Later in the article, she promises that having breast cancer leaves you stronger. Damn near invincible, actually.

I wonder where that leaves me. What do you make of a woman, diagnosed at 35 with a husband and three-year old son, who gave up having more children in case that was to a contributing factor in recurrence, who had the same surgery you had, who likely took a more aggressive chemo than you did, who faithfully adhered to five years of miserable hormonal therapy, and who lived out loud for nine years, advocating for others, evaluating the science, training to serve on peer review panels – only to discover that all the while cancer was lurking deep in the marrow of my bones?

  • Did I not fight hard enough?
  • Am I a bad person?
  • Were my doctors, perhaps, less wise than yours?
  • Was it my failure to buy pink boxing gloves, or any other pink crap, to raise awareness?
  • Or perhaps I’m just weak, where you are strong?

It doesn’t take strength to stand on a stage and shout platitudes about mammography and fighting hard. It doesn’t take strength to delude yourself into thinking its over. It doesn’t take strength to claim we are all “thriving, excelling, living” or to imply that we are all stronger for having lived through it.

It takes strength to wake up every day knowing we have no cure. It takes strength to parent a teenager who, given the odds, you will never see graduate college, knowing it is unlikely you will dance at his wedding, or hold a grandchild. It takes strength to go through treatment after treatment, and as each one fails you, return for something harsher. It takes strength to sit on those peer review panels and read about potential therapies that are 10-20 years down the road, knowing your life expectancy of about 24 months has already been exceeded. And it takes incredible strength to perpetually shout into an all-pink crowd that they have failed to invite those most desperate for support to their pink party. I know, never fun to have a downer around, and it’s easier to shove aside those who are living proof of their greatest fears.

It would take strength to take a stand against the rosy pink masses and lend your voice to those who are routinely silenced. The “survivors” have plenty of celebrity spokespeople. The metastatic breast cancer community does not have a single one. Being that person takes strength.



Speaking of metastatic breast cancer, or MBC, do you know how little we know?

  • We don’t know how many are diagnosed because unless one is diagnosed at Stage IV, we are already in the cancer registries and don’t get updated recorded again.
  • We don’t know how many of us are living with MBC for the same reason.
  • We do know that about 30% of breast cancer patients will eventually metastasize. We know they will come from every single stage, including Stage 0, and we know that it can literally take decades from initial treatment before MBC shows up.
  • We do know that approximately 40,000 Americans will die from MBC this year, and that number hasn’t meaningfully changed in over a decade.
  • We also know what will save our lives: research.
  • We do NOT know why, when MBC accounts for 30% of patients and 100% of breast cancer deaths, our funding hovers below 5% of all breast cancer research funding.


Ms. Robach, I am thrilled that you have completed your treatments, that you appear to be feeling great and that you’re back on the job. No matter how sick we get, there is hope with each person who survives despite our disease. However, please don’t fool yourself into thinking breast cancer is in your past. It is your present from now on. You will go through scans and other tests that will raise anxiety you’ve likely never experienced before. You will have sleepless nights when you wonder if and where it is lurking. You may have side effects, like chemobrain, that stay with you for the rest of your life. And you may, like me, be one of an unknown number of women who progress to Stage IV.

I urge you, as a woman, as a survivor and as a journalist, to look deeper than the hype. You have an incredible platform with opportunities that individuals living with the disease rarely have. So, so many have, in their celebration of being “cancer free” have left us behind. Consider a different path…I would love to hear from you!



Lori Marx-Rubiner

President, METAvivor Research and Support*



*All opinions are my own and do not necessarily reflect those of METAvivor.

56 Comments (+add yours?)

  1. marcy westerling
    Aug 16, 2014 @ 21:02:51

    Thank you for finding the energy to write this!
    warmly, marcy


  2. Anonymous
    Aug 16, 2014 @ 21:11:48

    I hope she, and others like her, not only read this but take some action.
    We love you.


    • Lori
      Aug 16, 2014 @ 21:30:12

      I do hope so…there are so many missed opportunities to tell the truth about breast cancer!


      • Lori
        Aug 25, 2014 @ 14:43:39

        Thank you for writing this and continuing this conversation.

        My sweet mother-in-law was diagnosed with breast cancer in 2001 at the age of 57. She had the lump and some nodes removed, did chemo, and after sometime was considered in remission. She went back to living life as normal, which included eating the Standard American Diet and living normally. Her 5-year cancer anniversary came and went and we all celebrated. Fast forward to 2009…my MIL goes to the doctor complaining of lower back pain only to learn that she has MBC, which can be found in her spine, pelvis, leg bones, and on her liver. My MIL was devastated. She thought she was cancer free and after the 5-year anniversary didn’t have any follow-up visits because she “thought” that if you are cancer free after 5 years you are out of the woods. How naive were we all?

        My MIL took two paths in her “fight” she changed her diet completely (all organic, super clean diet, no sugar, no alcohol, no gluten) and as a result, said she had never felt better in her life – yes even with MBC, but she also took the traditional route of doing chemo and then radiation and the poison won over all the good nutrition she was doing. My MIL passed away in March 2012 , which was 2 years and 7 months to the day she diagnosed with MBC. She was 67 years young. I think our societal beliefs about breast cancer and mainstream media’s role in those societal beliefs does give women a false sense about “fighting “ breast cancer. All we ever hear about is early detection, raise awareness, but we rarely ever hear about prevention. Diet and lifestyle changes now that can potentially save you from ever getting cancer. Why is prevention not focused on more?

        I look forward to following this conversation.

      • Lori
        Aug 25, 2014 @ 14:48:01

        I am so sorry for your loss, and thank you for sharing your mother-in-law’s story. I don’t think it’s as rare an occurrence is it needs to be, and I’m sure others can learn from this. I was diagnosed with MBC 9 years after my early stage cancer treatment and I remember the years of teetering on wanting to believe that magic 5-year marker….

      • Lexie Shabel
        Aug 25, 2014 @ 17:20:25

        Great info on this new paradigm of breast cancer treatment,thank you. Breast Wishes Fund is part of this movement with Founder Lexie Shabel delivering the TedTalk, “When did Our Breasts Become an Accessory” highlighting her mixed path that has her with both breasts and the tumor site, 9 years since diagnosis.

        TedTalk link

  3. marcy westerling
    Aug 17, 2014 @ 08:11:45

    I have just had a number of friends do drastic measures in the face of their stage 0 diagnosis. I understand the urge to solve the problem but it is under informed by the reality of mbc. Get over treated and join the parade. Sigh.
    warmly, marcy


    • Lori
      Aug 18, 2014 @ 13:08:45

      It is heartbreaking, isn’t it? Especially when it’s not “only” taking apart bodies out of fear, but for young women, compromising fertility and their body image for a long time to come. I acknowledge that there are times when it is warranted – but science needs to be the guide!


      • tinygalaxy
        Aug 27, 2014 @ 12:38:06

        I don’t consider my choice to have a double mastectomy upon a high grade DCIS diagnosis at 31 ‘drastic measures’. I understood the science well, I read every study that was available, I had a lumpectomy first to keep my options open and to confirm the diagnosis, and I made an informed and reasoned choice. I fully support women who choose a different route to me too. Different people have different reactions, different lives, different diagnosis’ and different opinions. My choice made me feel more, not less able to have children. Please don’t assume that this decision is just made on ‘fear’ or at the hands of over-zealous surgeons. I’m happy with my decision.

      • Lori
        Aug 27, 2014 @ 16:05:28

        My implication was not to be critical about anyone’s choice, but rather that the media is the wrong place to gather decision-making information. I know many people who have made similar decisions, and I respect their choices, as well.

        I apologize if what I wrote sounded otherwise – that was not my intention!

      • tinygalaxy
        Aug 27, 2014 @ 12:40:53

        p.s. Thanks for writing this fantastic piece!

      • tinygalaxy
        Aug 27, 2014 @ 22:41:02

        Sorry I freaked out Lori. I realise I’m really sensitive to thinking that people suggesting I made the wrong choice. It was so hard to make.

        I agree that the media really isn’t the right place to gather information.

        What I found really scary when I was choosing was how much of the information I needed was behind pay walls. Luckily I have friends who work in the NHS in the UK, and others who work at universities, so between them they were able to get me access to all the articles I needed. But for people who are less connected, getting full access to good information to help you make a considered decision is really hard. Even the websites for women with breast cancer sometimes had inaccurate or outdated information.

        Thank you, again, for this fantastic piece of writing.

  4. Trackback: Dear Ms. Robach - Breast Cancer Consortium
  5. BlondeAmbition
    Aug 17, 2014 @ 21:42:28

    THIS IS EVERYTHING … outstanding letter, Lori! You’ve outdone yourself. xo


  6. Holly Hamlett
    Aug 18, 2014 @ 08:20:44

    Lori – you are AMAZING!!! Thank you for so eloquently putting into words my very own exact feelings and thoughts…


    • Lori
      Aug 18, 2014 @ 09:16:27

      Thank you, Holly. While I don’t speak of anyone else, I do think much of our beast cancer – and especially MBC – experience is universal. I hope you are well!


  7. nancyspoint
    Aug 18, 2014 @ 11:03:52

    Excellent article, Lori. You articulated your points so very well. It’s a must-read. Sharing all over the place. Thank you!


    • Lori
      Aug 18, 2014 @ 12:51:33

      Thank you Nancy – for both the compliment AND spreading the word! I know you appreciate how much of an uphill battle (there’s that damn warrior analogy again!) it is for MBC to garner attention. Keeping my fingers crossed that this will help!!


  8. Elizabeth J.
    Aug 18, 2014 @ 11:16:27

    Outstanding! I dread Pinktober each year. And it bothers me to hear celebrities immediately out of treatment glowing about how they are now cancerfree and cured. They are so sure they have won. Even if they were stage 0, they are all brave warriors who fought hard for their lives.
    I am grateful, very grateful, to still be here, to still have this precious gift of life. But, I have not won, I am not cured, I do not wish to take part in a pretend celebration. I have not fought less for my life than these warrior-winners. In fact, I probably fought harder than most of them, but my fight goes on and on.
    There are always scans and tests and never-ending treatments, even if you are blessed with remission for a time. Because once you are stage 4, you know the ending to your story, just not how many chapters are left in your book.


    • Lori
      Aug 18, 2014 @ 12:52:57

      As I await the results of my most recent scans, your words ring so deeply true. I love your analogy to stories and chapters – that’s it exactly! Thank you so much for sharing!


  9. Patricia Spitzler
    Aug 18, 2014 @ 12:54:26

    Dear Lori,
    My story is so similar to yours. I was diagnosed at ave 38 with a husband and 16 month old daughter. Stage IIIc invasive ductal carcinoma. Triple positive with 16 positive lymph nodes under my arm. I can tell you exactly why there are no famous, tv personality champion survivors to embrace the cause of metastatic disease. Fear. I’m terrified of you. You and the countless other stage IV people living in silence and fear.
    We on the other side of the chasm that stands between stages III & IV. It is so difficult to face the potential future that might be in store for us. We so rarely hear from the Elizabeth Edwards of the world and when we do, we tend to tune them out. Please accept my apology and understand that it is not that I don’t have sympathy. I just don’t want to identify too closely. It’s human fear. Don’t judge us too harshly. We all do the best we can with our own burdens. I am truly sorry about what you are going through.
    Very sincerely,
    Patty Spitzler


    • Lori
      Aug 18, 2014 @ 13:02:17

      Hi Patty. Thanks for sharing your thoughts! You are right – it is fear. We are feared when we walk into a “regular” breast cancer support group. We are feared when we speak out. And I don’t judge those who sit in fear of Stage IV – I sat there myself for many years until I realized what it meant for Stage IV patients to be shunned. But the only way through that, for ME, was to open the door and listen. We are 1 in 3, we represent 30% of the breast cancer story, and yet we are perpetually silenced.

      I truly don’t judge anyone for wanting to create distance. As I said, I’ve been there. However, celebrity spokespeople put themselves in the eye of the storm when they help perpetuate the myth of survivorship. Once a celebrity lends their name, steps up to the microphone, I believe it is fair to question the basis on which they speak out, and to share with them the reality of 1/3 of the breast cancer community.

      I hope you are doing well! And I hope you don’t EVER cross the line to Stage IV. Our club doesn’t want or need any more members!!


  10. Katie S Lilliston
    Aug 18, 2014 @ 13:22:26

    Lori, that was brilliant! Thank you for writing it.

    I, too, dread Pinktober Elizabeth! Yes, I love life and am so happy to still be around to live it. I was dx with Stage IIIb at the end of 2008 (HER2, ER+PR, 5cm). After the neo-adjuvant chemo followed by surgery and radiation, I was naive enough to believe, as I was told, that I was cured. 2011 I had a recurrence but smaller. More surgery, more radiation (yes, in the same area) but no chemo. By this time, I was much more educated about recurrences, MBC and the apparent lack of any real progress in preventing/curing the disease coupled with the fact that about the same number of breast cancer patients were dying each year as died 30 years ago.

    The “pinking” of America (the world) is a total whitewash and while I am the last to deny anyone their own beliefs, why oh why are so many people giving so much to these “breast cancer” corporations when only about 20% (if that) of their profits go towards anything worthwhile, such as research for prevention or cure. On top of that, of course are other companies who jump on the breast cancer wagon to increase their profits. Get me off my soapbox!

    Lori, I had to give a wry smile when I read your “reasons” for metastasis because this is how I feel about my recurrence … did I not fight hard enough, was I not positive enough, etc. I am so sorry that your cancer metastasized – my heart goes out to you.

    I am realistic enough to know that this nasty “piece of work”/cancer (a British expression) is lurking somewhere in my body and yes, I live with the sword of Damocles dangling precariously over my head and in the meantime, while living with the collateral damage (Susan Love) of two sets of treatment in three years, I love each day and try to make each a good and productive one. I am pretty sick with something on my lungs (maybe radiation induced fibrosis) and am due for a PET/CT (oh no, even more radiation).



    • Lori
      Aug 18, 2014 @ 13:32:28

      Thank you, Katie! I’m sorry you’re not feeling great, but keeping you in my prayers for clean scans. What a roller coaster ride THOSE are! And I don’t think you’re alone in silently taking the blame recurrence and/or progression – many, many of us do that. I imagine in part that is to give ourselves the illusion of control. But there is a distinction between blaming ourselves (not necessary) and latent blame by others (not appropriate). When an early stage survivor perpetuates the notion that they are strong because they “survived,” the implication is that those of us who go on to Stage IV, and certainly those who die, are by contrast weak. That I can’t sit by and watch…

      BE WELL!!!


  11. Linda
    Aug 18, 2014 @ 14:34:39

    Excellent!!! Thank you!


  12. Trackback: Dear Ms. Robach | the risky body
  13. Stacey Tinianov (@coffeemommy)
    Aug 18, 2014 @ 17:38:32

    Lori, Thank you for articulating so well the recurring downside of the pink parade and the battle nomenclature. It’s all fun and games (I say after one year of Tamoxifen, lacking both of my breasts and my peace of mind) until cancer comes back – or doesn’t really leave.
    My mother has just finished (or rather is done with, she couldn’t finish based on bad MUGA) her HER2+ targeted therapy. Currently supporting a friend who was a five year survivor of Stage 0 DCIS. Five years ago they didn’t test HER2 status in DCIS. Turns out they should have. Sucks when they find it in the bones, lungs & liver instead.

    For all we know, for all the women and men affected, there is so much we don’t know. I’d be happy to forgo the pink rally hat in favor of a few extra dollars going toward additional research, accelerating clinical trials and increasing availability of treatments across socioeconomic boundaries.

    Sending deep gratitude & positive mojo your way,


  14. Kelleigh
    Aug 18, 2014 @ 18:08:00

    Thank you for writing this eloquent response to Ms. Robach. It made me cry, because it says so beautifully everything that my heart screams every time I hear Ms. Robach speak about her “victory”. I kicked cancer’s butt once too, and then 4 years later it came back and kicked mine. I hate thinking that my children will hear speeches like Ms. Robach’s and think that their mom just didn’t fight hard enough. Thank you for speaking up for us in the 30%.


  15. Sioned
    Aug 19, 2014 @ 05:14:08

    Your words perfectly captured everything I feel on this subject! I too was diagnosed through mammography, my first, at age 40. I had the tiniest tumor, but opted for a full mastectomy, ovarian suppression and tamoxifen. I thought I was so incredibly lucky to have caught it early and so clever to have gone for that mammogram. The medical profession congratulated me on my vigilance and for 6 years I rejoiced and never looked back. However, my cancer was still firmly with me, spreading to bones and organs silently and undetected until symptoms began to manifest and by that time the spread was severe. Disbelief, shock followed by extreme anger that I had somehow been duped. Now I understand that early detection means very little. Cancer, as you say, can spread at any stage, no matter what the treatment. The general public need to understand this sad and inescapable fact about breast cancer. We need a real cure not more pink awareness. Thank you so much for your article.


    • Lori
      Aug 19, 2014 @ 09:21:01

      Thank you for your eloquent reply! I agree that there needs to be a better understanding of MBC! The pervasive need to ignore it means we don’t get funding for research or social support. “Awareness” MUST include MBC awareness!


  16. Anonymous
    Aug 19, 2014 @ 06:23:25

    That was really freaking depressing. Thanks for the hard cold facts? Makes my fight even harder now.


    • Sioned
      Aug 19, 2014 @ 07:43:23

      How does being well informed of the true facts of this disease make your fight harder? I would much rather that my doctors had told me that no matter what I did some cancers just will return and they don’t know why. Instead I was told with a less than2% chance of recurrance I had nothing to worry about. Every time I worried about recurrance I was told that I was in the “safest” category, so I stopped thinking about cancer. Maybe if I had known more about the sneakiness of the disease I would have done even more to prevent a recurrence and maybe this would have made no difference, who knows? To anyone who has early stage cancer now I say to them, don’t be depressed and afraid, be informed and take control of your own health as much as you can. If your cancer comes back your doctor will shrug his or her shoulders and say “oh dear”, but for you it will be the end of life as you know it. Hope for the best but don’t push away stage IV realities because they are uncomfortable. The reality is we are all fighting the same disease here.


      • Lori
        Aug 26, 2014 @ 21:48:57

        Isn’t it likely that one might get MBC after having multiple chemo treatments to fight initial BC diagnosis. Doesn’t Chemo caused secondary cancers? Perhaps we should consider that chemo is not an effective treatment and does more harm than good. There are stories of people healing themselves alternatively after their first diagnosis and this pathway should be explored more, in my opinion.

      • Lori
        Aug 27, 2014 @ 09:50:12

        Certainly we know that chemo, like radiation, can result in secondary cancers. And yes, many people – like me – can become metastatic despite chemo for early stage disease. And chemo is harsh, challenging and often difficult, there is no question about that either. However, I’m not convinced that can necessarily lead to the conclusion that it is ineffective, or that it does more harm than good. Right now I believe we’re seeing a building relationship between “traditional” therapies and “more natural co”complementary” therapies emerging. I think some of the taboos about natural remedies are being laid to rest, thanks in some degree to the increasingly widespread use of medical marijuana and the NCI’s CAM program, which is looking scientifically at complementary and alternative therapies. I believe balance of perspective and science-based evidence will serve us all well.

    • Lori
      Aug 19, 2014 @ 09:23:23

      It was certainly not my intention to upset any if my readers! Living with MBC, I experience that sense of needing to “fight even harder” every single day – and always will. I wish you the very best!


  17. Trackback: Why Amy Robach Didn’t Get Things Quite Right @ Nancy's Point
  18. Adrienne Conde
    Aug 20, 2014 @ 00:11:32

    It’s as if you crawled around in my head, took my thoughts, feelings, frustrations, and insults to my fight and wrote an eloquent letter respectfully addressing the missed opportunities to inform and educate on ABC. Thank you for writing this. I’m sharing it on fb with all of my friends.


    • Lori
      Aug 23, 2014 @ 17:10:18

      I’m so very glad I could capture your sentiments as well. People not living with ABC (Advance Breast Cancer, which generally includes Stages IIIb and IV) have to strive to understand why it is so different, and this is most especially true of those who step up to a microphone.


  19. Trackback: Weekly Round Up: The Other Voices Edition | Journeying Beyond Breast Cancer
  20. Anna Jones
    Aug 23, 2014 @ 16:57:48

    Outstanding! This should be submitted to all the major newspapers. Just loved it.


  21. raralee
    Aug 25, 2014 @ 13:45:34

    Another thing that bothers me is family history. People feel secure about no family history, I know I did! There is no history of any bc anywhere in my family but here I am with brca1, triple negative advanced breast cancer! I was initially diagnosed in 2000 then again in 2002 and finally with metastatic bc in 2012! 10 years later and I still wasn’t ‘cured’! If I had been older when diagnosed maybe I would have been a survivor statistic as I would have died before recurrence! I am happy for all the people who have been ‘cured’but do warn them not to become complacent about about this sneaky mean disease.


    • Lori
      Aug 25, 2014 @ 13:52:53

      I am sorry for your experience and you make an excellent point! I would only add, as reported recently about the PALB2 gene, that BRCA isn’t the only hereditary gene. With the now-available TCGA (the Cancer Genome Atlas) and the growing frequency of genomic sequencing, we will probably find more genes in the near future. As for BRCA1 and BRCA2, it is my understanding that roughly 5-10% of all breast cancer is hereditary, leaving over 90% of us to “just” get it.


  22. Anonymous
    Aug 25, 2014 @ 14:32:38

    Hello I just finished number 6 chemo. My last one hopefully. Dr says herceptin will be given. Then I need to make an appt for cancer radiation. I have had a mastectomy and 18 lymph nodes removed. 7 being cancerous. My decision to do it or not to do It. Any words of advice would be appreciated!!


    • Lori
      Aug 25, 2014 @ 14:40:09

      So sorry for what you’re going through! I know how rough it can get. As for radiation, I did 2 things: 1) I got 3 opinions, 2 from completely outside the system in which my oncologist works and 2) made my decision and waiting to see how I slept the next few nights. I slept well and opted out of radiation. I truly believe only you can make your decision and be comfortable with it. I also believe that being about to feel good about what you decide is a quality of life issue. Final thought: if you opt not to do it and you find you’re not comfortable with that in the end, go back and have it done!

      Very best of luck to you!!


    • Anonymous
      Aug 25, 2014 @ 15:34:37

      Are you HER2+?
      Is that why you are going on Herceptin? I’m not going to sugar coat my reply. If you are HER2 it’s aggressive and your onc should be telling you so. You need to do the lot but having said that I did the lot and it kept spreading. Herceptin is easy. But you will be having it for a long time. Ask lots of questions. Make up your own mind. Good luck.


  23. Musings of a Cancer Research Advocate
    Aug 25, 2014 @ 14:59:37

    Bravo, Lori! I agree with Nancy: this is an absolute must read. Thank you so much for taking the time to so beautifully, powerfully articulate the truth.

    Deb M.

    “Musings of a Cancer Research Advocate: It’s All About the Evidence”:



  24. thebreastlife
    Aug 25, 2014 @ 16:15:08

    Reblogged this on thebreastlife and commented:
    An important letter to Amy Robach, from someone living with breast cancer.


  25. Brenda
    Aug 26, 2014 @ 13:19:58

    Who do you think is luckier?

    I was diagnosed with MBC September of last year. This was after 2 remissions of early stage BC for a total of 8 years (4 years each). I had many painful surgeries along the way and recently, 3 MRIs and 4 cat-scans in a span of 10 months. I have had more than 30 chemo infusions to date. I have lost my hair 3 times.

    My friend was diagnosed with MBC in her bones 10 years ago. This was her first diagnosis, No cancer in her breast. She did not have to have surgeries, chemo or radiation. She has responded well to anti-hormonals. Recently her bone mets appeared inactive on her latest scan.

    I guess the point I am trying to make is, MBC needs individualized attention. The disease is as varied and complicated as the individual afflicted with it. An MBC patient could have 200+ deadly mutations going on at the same time, or maybe just one slow moving tumor. We don’t even have drugs to fight all the known possible mutations.

    So I agree with you that MBC is not getting the focus that it needs. I am hoping that in my lifetime, in this age of genomic science and technology, a pathway to a “cure” could be found.


    • Lori
      Aug 27, 2014 @ 16:07:10

      I agree completely! Death from breast cancer can only end when we confront the “death” part. Thanks for sharing your thoughts!


  26. Trackback: On Mammograms and Early Detection | METAthriving
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