Dr. Susan Love Research Foundation Teams with Susan G. Komen and Young Survival Coalition to Document the Collateral Damage of Breast Cancer

YSC-Love-HOWStudy-FBPostDr. Susan Love just announced that three breast cancer organizations have joined forces to document the short- and long-term physical and emotional side effects of breast cancer treatments. The collaboration is part of the Dr. Susan Love Research Foundation’s Health of Women [HOW] Study. The goal is to collect data on the collateral damage of breast cancer treatments to share with the scientific community.

In the spirit of collaboration, the Dr. Susan Love Research Foundation reached out to Susan G. Komen and Young Survival Coalition as well as other advocacy groups to ask for their help in spreading the word. Komen and YSC agreed, and they are inviting their constituents to share their experiences about treatments and side effects and to participate in the HOW Study as a means of identifying the causes of, and prevention strategies for breast cancer.

Let this be one of many collaborations within the breast cancer community as diverse organizations, large and small, come to the table to work on fundamental pieces of the breast cancer puzzle. The time for the breast cancer paradigm to change is long overdue. Acknowledging the collateral damage of treatments is one step closer to getting real about this disease.

To Take Part In the Study

All breast cancer and cancer groups are welcome to join this collaboration, and anyone can register for the Health of Women [HOW] Study and complete the basic questionnaires on personal health and/or breast cancer diagnoses. Questions about collateral damage from breast cancer can be submitted through October to www.questionthecure.org. When the collateral damage module is complete and online, participants will be notified by email.

Dr. Susan Love will host a Facebook chat (Wednesday, October 2 at 9:00 a.m. PDT) and a Twitter chat (Wednesday, October 2 at 1:00 p.m. PDT) to speak more about the project.

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10 comments to Dr. Susan Love Research Foundation Teams with Susan G. Komen and Young Survival Coalition to Document the Collateral Damage of Breast Cancer

  • Annie Appleseed Project, a cancer advocacy nonprofit online since June 1999 has gathered information on an array of natural strategies, lifestyle changes, complementary and alternative therapies that REDUCE the toxicities, enhance the immune system, and more.

    Many are simple and can be done by absolutely everyone. Since no one can patent, no companies are interested in RCTs of natural methods. BUT Patient Advocates are and we have shown this information online, on Facebook, on Twitter @annieappleseed, and at medical/scientific and research conferences.

    We are absolutely DELIGHTED that you have formed this triad and will explore what must be done! We stand ready to help. (as a first step we circulated this information on FB and Twitter).

  • Lisa White

    I am very interested as to if there are plans to test Triple Negative Breast Cancer Pathology for Androgen Receptors since we now know there are a small percentage of us out there that may actually benefit from the targeted therapy if positive….

    Also: By testing tumor pathology, is the time comming soon that chemosensativity testing will become protocol for TNBC considering the many subtypes that are being discovered…?

  • Lisa White

    Another question: so many women including myself, are never the same in terms of that feeling of “well being..” …it’s like we are waiting for the next shoes to drop…the fear of recurrence can sometimes be consuming….talk about calateral damage….every twinge, pain, throb, that at one time before diagnosis would have been dismissed as plain old muscle ache, or common ailment….now it’s feared as “is it back”….. ????….. From many women I talk to, we have lost that feeling of ” well being” our inner peace has been robbed….time does somewhat muffle the inner anxiety of recurrence, but it seems to always be there, smoldering under the day to living…Anxiety seems to be the thief that robs our joy….this is not addressed by many of our Clinical Teams…shouldn’t they be???

  • Mary

    I am thrilled by this collaboration and was informed via email, yesterday. I am a current member of the HOW study and look forward to the questionnaire on short and long term effects of treatment. I refused some treatments because of the side effects and my family history of heart disease.
    Lisa brings up a good point about fear of recurrence and the lack of it being addressed by our clinical teams. I have just been “discharged” by my oncologist, suddenly, with no preparation and essentially no plan, that I was made aware of. I called the clinic and asked that a plan be sent not only to my Primary Care Physician but a hard copy sent to me as well. So far no response. I will be sending a letter out to my “former” oncologist with some suggestions as to how the “oncology” experience can be made better for the patient and the doctor. Oh yeah, yesterday I got a solicitation from the Oncology unit I used! It extolled the virtues of the “nurse navigator” and social services dept. I was never offered those services. It is in the trash same as me, where they are concerned.

  • I’m sorry, Mary. This sounds horrible. Definitely the fear of recurrence and other emotional issues must be included in the category of “effects.” I will pass these ideas along.

  • Casey Stab

    Whole Treatment to me is very important! It seems like, in general, there’s always a nurse to administer chemo but not enough nurses/training to administer emotional therapy. What is being done for this aspect, in your opinion?? Thanks! 🙂

  • Great to see collaboration among the breast cancer organizations! Hopefully this will become widespread since we’re all passionate about prevention it makes perfect sense to work together. Bravo!

    As a metastatic breast cancer THRIVER I know first hand that the collateral damage of breast cancer is far reaching. Whatever can be done to lessen suffering is absolutely time well spent. I too am a member of the HOW Study and look forward to participating by completing the questionaire.

    Thanks for all you do!

  • Katharina Pachmann

    I am involved in breast cancer research and mainly in investigating the cells that leave the tumor and circulate in the body and are the prerequisite for metastasis formation. I have been writing and publishing about these cells. It is frustrating to see how much effort is applied to remove the primary tumor which does not kill the patient without knowing anything about the remnant cells and their ability to form metastases which ultimately will kill the patient.
    My research clearly shows that we can monitor these cells, that we can survey how and when they start to increase in numbers most probably due to growth an indicator of the growth behavior of the tumor, how they respond to therapy and how we can try to keep them in check so that the disease will remain chronic at least for some time. It gives the patient and the physician a tool to control the effects of therapy.
    This research, however, has been restrained because, though mirroring the clinical course of disease, tends to challenge many approaches like the significance of mammography, the impact of neoadjuvant chemotherapy and the guidelines of adjuvant chemotherapy and you can not build a business on this.
    If the breast cancer community is interested, I can provide these publications where we have recently also reported on chemosensitivity testing of these cells to decide about further steps.

  • Yes, Katharina, please share your publications. — Gayle Sulik

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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"Seeing clearly through the pink haze" Toronto Sun

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Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

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NFL, Pink Ribbons Not Enough to Win over Women CNN

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Time to Debunk the Mammography Myth CNN

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Our Feel-Good War on Breast Cancer The New York Times Magazine.

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