Share with Shirley

As a Board Member and Advocacy Chair for the Metastatic Breast Cancer Network, I want the new year– 2012– to be an important milestone for the metastatic breast cancer community.  We deserve to have better outcomes in the clinic, as those with early stage breast cancer have experienced.  I am not talking about a cure.  Rather, I am talking about each of us having access to targeted, personalized treatments for our particular type of metastatic breast cancer so that we can live many years with a good quality of life.  Put another away, if we cannot be cured, then we deserve research that develops treatments which transform the disease into a truly chronic disease, like diabetes or HIV-AIDs.


One way is to articulate clear requests to those who can improve or transform our lives. 


if someone were to ask you “What are the needs of metastatic patients so that there would be a change in the outcome of metastatic breast cancer?”  Could you share 3 or 5 unmet needs that would make a big difference, if they were met?


what you would ask some or all of the following groups to do differently to change and improve the lives and futures of metastatic breast cancer patients.  Please post your response below or email to We will compile all responses and summarize. Thank you!


Your oncologist
Your local cancer center
Your family members and/or friends
Your local congressperson or senator
The President
Pharmaceutical Companies
Researchers and scientists
US Food & Drug Administration (FDA)
Breast Cancer Organizations
Early stage breast cancer survivors

14 Responses to Share with Shirley

  1. Your oncologist: When discussing new treatments be honest about potential side effects, and how these might affect quality of life. Be proactive in discussing and offering palliative care.

    Your local cancer center: Integrate mental health services as part of treatment plans.

    Your family members and/or friends: Listen, learn and advocate. Don’t be afraid to talk to us and ask questions.

    Your local congressperson or senator: Metastatic cancer of any kind kills in >90% of cases. Prioritize research spending in this area, and develop incentives for pharmaceuticals to translate research to game-changing drugs.

    The President: As above.

    Pharmaceutical Companies: People before profits please. Share research failures and successes. Set the bar high and shoot for game-changing drugs, not incremental drugs where success is measured in months rather than years.

    Researchers and scientists: Collaborate and share research failures and successes. Be bold in putting together research proposals. Present as a united front in the war on metastatic cancer.

    US Food & Drug Administration (FDA): Redefine language in clinical trials to allow for tumor prevention drugs to make it past Phase 1. Per letter from Dr Michael Fernandes:

    “One criterion for approval of anti-cancer drugs is lack of progression, and progression is based on an increase in tumor size over time. However, it is not tumor size per se that kills, but invasion and subsequent metastases, which are unrelated to tumor size.

    The tumor-reduction paradigm has not delivered, and potentially beneficial drugs continue to be rejected if they do not block tumor growth. Unless “progression” is redefined as local invasion and metastases, the problem will remain.”

    Breast Cancer Organizations: Metastatic breast cancer is the one that kills. Prioritize and direct funding to innovative research in this area as well as providing real support and advocacy. Moments of silence and faces and names memorialized on t-shirts isn’t enough. Stop erasing the suffering of those with MBC with huge public displays of jolly pink celebrations for survivors. Examine your measures of success. Does your organization affect outcomes for MBC patients? If not, why not?

    Early stage breast cancer survivors: Advocate, advocate, advocate for MBC. We can’t do it on our own given treatment and cancer side effects, and ultimate prognosis.

    Yourself: Hang in there and keep being heard on the issues that concern me.

    • alamik says:

      Breast Cancer Organizations? Yes the larger ones, and one that you described as having “displays of jolly pink celebrations “. Would that be Komen? If so, then that should be easy enough since Komen sponsors the MBCN and has sponsored their conferences in 2009 and 2010. So I would think that the board of directors here at MBCN could just go to their sponsor, Komen, and ask them all of your questions. Which are excellent by the way. Being stage IV and triple negative, BRCA1 positive, I would like to hear the answers as well.

  2. katherinembc says:

    I thought Rach was pretty thorough…

    In terms of Breast Cancer Organizations: I would like to see greater cooperation among the leading groups. What I see today is lot of bashing.

    Where is the cooperation?

    I challege the National Breast Cancer Coalition to bury the pink hatchet with Komen. Couldn’t someone extend an olive branch?

    Even if the associations are miles apart in their particular agendas, wouldn’t it be great if they you know, TALKED to each other? And LISTENED to people with MBC?

    I attended the annual MBC conference in Baltimore. Was there anyone there from Komen, NBCC or other advocacy groups? It is a great opportunity to gain insights into the challenges of people living with MBC.

    NBCC trumpets its 2012 deadline. They don’t seem to have factored in those of living with MBC.

    They did convene a mets summit last year. But how many of the participants were people with mets? Two or three?

    In a nutshell, I would like to see a lot more cooperation

    • Absolutely right on Katherine. Collaboration and cooperation across the board.

      • I agree! Instead of duplicate meetings, conventions, promotional material…..why not ONE big convention? Every year ASCO, for example, hosts ALL the different cancers in one huge cancer convention. Why can’t all the nation’s leading breast cancer organizations, academic and gov. researcherspull together for one breast cancer summit? Target say, 2015? That would be a first.

  3. Jennifer Bockey says:

    Oncologist – Discussing with me new trials and treatments on the horizen whether or not they apply to me at the time. All of us wonder, if it comes back … what is next. It is encouraging to hear what is happening for our particular type of cancer. The oncologist needs to help with other aspects of our life that cancer affects. Side effects of drugs that cause weight gain, joint problems. memory loss, sexual issues, etc. My oncologist talked about having a physician’s aides to deal with these issues as metastatic patients are living a long time with this chronic disease and need the support. (of course, this is why I love this woman)

    Local Cancer Center. Metastatic patients are getting treatments year after year. Trying to chronically fit this into your schedule is hard and taxing on work and home life. I am not asking for a 24 hour service but if I have to go get a 30 or 45 minutes infusion, I would love the option to do this at 7:30 am or 5:00 PM. I also wish cancer centers could split the centers so you have some of your really sick cancer patients in an area and the frequent fliers in another.

    Family Members/Friends – Don’t expect me to get beyond my cancer. It is chronic and will be a part of me forever. However, it is also not the center of my life. There is a fine line. How do you draw it?

    President, Congressperson or Senator – We need to focus money and attention on a cure. Stop with the awareness programs. Funding mammograms is great but when they find the cancer everything changes. We need assistance for MBC patients who year after year are hitting their out of pocket max in January. What about those who have no insurance.

    Pharm. Companies/Researchers/Scientists – We want targeted drugs that give us quality of life. Drugs that can be taken long term without destroying our other organs or causes issues that take away form having qol. We want you to look at how supplements and vitamins can work in conjunction with meds. The focus cannot solely be on pharma. drugs. Breast cancer is not one disease, we want drugs targeted specifically for our type of cancer. Look at what happened with Herceptin. It is my miracle drug. I think all of us want progressed accelerated and available to all who want to partake.

    FDA – We can’t wait years and years for red tape.

    Breast Cancer Organizations. Again, ENOUGH with awareness. Report the facts. This is not a pink girly happy disease. It is an ugly disease with no cure. It is disfiguring and you don’t just go through treatment and move on. your life is forever changed and haunted by this disease. Early detection is important but it often doesn’t change the outcome. Emphasize you are talking about 5 year survival rates .. not life time survival rates. Too many people take those five year survival rates as a cure. Dedicate research and funding to metastatic patients. these are the people dying and these are the people who are going to die from b/c. We see most of the program tarketed at awareness and early detection. MBC patients feel left behind. I know that I am not endeared to Komen.

    Early Breast Cancer Survivors. Point blank, you have not beat cancer. None of us who has it has beat it. You make have made it through treatment but you will forever need to be attentive to your body and testing.

    Yourself – Help your breast cancer sister and help those organizations that address MBC needs. Be open with your story and know that your experience may help the future. Continue to explore every avenue that aides in extending your life. Continue to learn and ask questions.

  4. Jen G says:

    Advocate to shorten the process of FDA approval for MBC and other advanced cancer patients. Make alternative end point available for clinical trials, broaden compassionate drug access, advocate international clinical trial cooperation, especially with countries where the patient population is large and underserved. Increase funding for met. cancer and cancer translational research.

  5. Pat Larsen says:

    I know it’s the thought that counts, and everyone means well . . .
    BUT if someone gives me another pink ribbon pin or scarf, I’ll scream! We need ways to live well and longer; mets are the ugly underside of pink t-shirts.

    • alamik says:

      I know exactly how you feel. When I was first diagnosed, it seemed like every one of my friends bought something for me in pink…. coffee cups (don’t drink it), hair brush, curling iron (had no hair), tooth brush, t shirts, hats, paper weights, steering wheel covers and license plate frames. Komen literally thousands from my family on a pile of pink JUNK that is sitting in my garage and will never be used. Now of course, they all know my views on the pink culture and they would never even think of bringing another pink ribbon item onto my property.
      I still have confusion on how this all works since Komen sponsors this website and the MBCN. And Komen has also sponsored the MBCN conferences in 2009 and 2010. If you look under the “about me” on the home page, and then click on sponsors, you will see that Komen does indeed sponsor the MBCN.

      I questioned Deb Tincher about it and she denied it and so did Larry Tincher. But how can they when the proof is right here on this website. Deb has helped arrange and plan the conferences and Komen has sponsored them. So I don’t understand any of it and it’s getting to be a little aggravating.

  6. Natasha says:

    “What are the needs of metastatic patients so that there would be a change in the outcome of metastatic breast cancer?”
    There are so many anecdotal and alternative treatments that are heard to have anticancer properties yet oncologists say “they are unproven”. Well, instead of telling patients not to try them, why don’t oncologists have them proved? obvious!


    Your oncologist: Advise patients about diet and life style (they don’t say a word about it or worse yet say to eat “whatever”)
    Your local cancer center: What’s a “local cancer center”?
    Your family members and/or friends: Help to encourage and research, help out with organic anti-cancer foods and supplements – these are expensive.
    Your local congressperson or senator: equally subsidize pharmaceutical and alternative treatment research, stop persecution of CAM providers.
    The President – same as congress.
    Pharmaceutical Companies – lol, Who said we, metastatic patients, are interested in making cancer a chronic disease instead of cure? Stop saying this over and over. We ARE interested in a cure.
    Researchers and scientists – collaborate in instead of ignore research and new proven treatments from other countries
    US Food & Drug Administration (FDA) – When will you get those pesticides out of our food? When will you start subsidizing vegetables and fruits instead of meets (thru corn subsidies)?
    When will those new personal care products with chemicals be screened for safe chemical content?
    Breast Cancer Organizations – allocate more funds into research of cures: vaccines, immune system, etc.
    Early stage breast cancer survivors: getting advise and research of the role of diet and exercise in the cancer recurrence, advocating for blood tests research to detect recurrence. CT scans is not available when early stage was considered cured and patients have no symptoms. In many cases patients have their mets progress deeply before symptoms show up and a CT scan is ordered and stage IV is diagnosed.

    • Natasha:
      Thank you for your comments. You asked what we meant by Local cancer center: the infusion center/hospital where you get your treatments.
      As for the argument to make mbc a chronic disease, let me elaborate. We all want a cure, but, as you know, breast cancer is really multiple diseases. There will not be just “one cure.” Her2+ disease responds differently than Hormone receptor disease or Triple Negative disease, for example. And there are many scientific subtypes within these 3 subtypes. More importantly, the estimated 155,000 of us living with stage4 now will not see a cure in our lifetime and we need to emphasize that we’re here and still living and don’t want to be forgotten. We need more treatments to extend our lives and I, for one, would be happy if there were treatments that give me not just a few more months or years, but 20 years or more, like diabetes and HIV/Aids patients have.
      thank you and take care.

  7. My oncogolist has run out of medical options in my stage IV cancer. It is in my lower spine, left groin area and now in my lymph nodes on the right side and each time they do a CT scan it has grown more. She is trying to get the Afinitor approved at out cancer center, will this help in my case. You’re right there doesn’t seem to be much they can do when it reaches the metastatic stage. I have had many different drugs, I don’t feel that bad only in the lower back where I have severve pain and I take meds. for that. Any one have any sugesstions out there please let me know and I discuss whith my oncogolist. May they soon discover a drug to help this stage.
    God Bless all of you!!!!!!

    • Karen Noble says:

      Have you tried speaking to Cancer treament centers of America? ctr in Philly’s Dr Rudolph Willis has done some miraculous stuff for terminally cancer. don’t give up.


  8. Elvira
    Sorry to hear you are struggling. You may have already discussed this with your oncologist, but I would suggest getting a 2nd opinion at a major cancer center and looking into any clinical trials for your particular type of cancer. is the comprehensive gov’t site or try which is very user friendly. You sound like you are a very positive and strong person! Take care and stay strong.

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