Dr. Susan Love, Young Survival Coalition and Susan G. Komen Partner This October To Show the World We Can Work Together To Drive Meaningful Change

 

Young Survival Coalition Logo Dr. Susan Love Research Foundation Logo Susan G. Komen Logo

“October” is a loaded word for breast cancer survivors. On one hand, the crisp fall encourages a warm blanket or hot toddy with friends. On the other, the onslaught of pink is enough to make any breast cancer survivor want to hide under the covers.

My hope is that Young Survival Coalition (YSC) can offer something TO DO this October that will actually drive REAL CHANGE.

Recently, I have had the honor to work with Dr. Susan Love, a pioneer in breast cancer research and now a cancer survivor herself. As a result of my conversations with her, I have been thinking a great deal about the “cost of the cure” or, more frankly, the awful and sometimes unspeakable side effects of cancer treatments that we accept as the price of survival.

Dr. Love and I have spoken at great length of the importance of changing the way studies are conducted and the fact that we shouldn’t ignore the consequences of today’s cancer treatments. Since young breast cancer survivors have to live with the long-term effects of treatment decades longer than their post-menopausal counterparts, she stressed to me her desire to study and learn from them, which thrilled me.

As Dr. Love and I continued our discussion, the idea of collaboration bubbled to the surface. We pondered how, during the past 30 years, the larger breast cancer movement has become fragmented. I conveyed to Dr. Love my aspiration for “real collaborations” that can drive “real change” — and my personal belief that this is possible.

As I thought about Dr. Love’s groundbreaking study and its possible impact on all young women with breast cancer, I decided this initiative was the right thing for YSC to get behind. My hope is that a true partnership that will bring the breast cancer movement back together, but first, and most importantly, I needed to ensure the proper crowd sourcing, so young women’s perspectives are captured in the research.

Tell Dr. Love everything that sucks about being a young woman with breast cancer here:
http://community.youngsurvival.org/index.php?/forum/78-be-a-part-of-history-join-the-how-study/

A few days later I was ecstatic to hear Dr. Love had reached out to the national headquarters of Susan G. Komen to see if their team wanted to join us in a joint collaboration …. Komen said yes!

This partnership creates enormous opportunity for the HOW study, especially when you consider Komen’s international reach. But, in all candor, it also raised concerns for me about how a partnership with a massive organization like Komen and an organization of YSC’s size would materialize.

The possibility of joining forces for a greater impact was too strong to resist, and I agreed to do everything in my power to make it work. “Working together” is not a new concept — far from it. However, when an industry or sector becomes as segmented and spread out as breast cancer has  — working together can be complex.

I am so pleased to report that the collaboration that formed between Komen, Dr. Love’s Foundation and YSC has been transparent, equal and respectful. Each organization is making this partnership a priority, and I am proud to be blazing forward on this new found path. We are openly talking about how our collaboration might serve as the cornerstone of best practices within the whole breast cancer movement.

As cancer survivors ourselves, we believe it’s time for the cancer community to no longer accept just being “happy to be alive” and instead demand treatments that do not have such a high price. It is my belief that we can make that happen — if we all work together.

As the CEO of the largest and most influential organization that supports YOUNG women with breast cancer, I am honored to work even harder this October to show the world that breast cancer organizations can work together to drive change and accomplish great things for the broader community.

To learn more about YSC’s partnership in this important study and get involved, please visit: http://www.youngsurvival.org/HOWstudy.

 

Comments (3)

3 Responses to Dr. Susan Love, Young Survival Coalition and Susan G. Komen Partner This October To Show the World We Can Work Together To Drive Meaningful Change

  1. Stacey says:

    As a 14 year survivor who now lives with chronic pain that is quite debilitating on my quality of life, this blog post really hit home for me. I think collaboration is exactly what is needed to help improve quality of life after cancer treatment. Thank you for expressing what I’ve been feeling for years: while I’m grateful to be alive, I’d like my quality of life to be much better than what it is. This is great news!

  2. Joann Saitta Andreadis says:

    My story , my name is Joann I was diagnosed in November of 2011 with inflammatory stage 3a breast cancer on my right breast . I am forever changed from this day as I’m writing this tears are running down my face . This has changed everything . I’ve been very depressed I don’t even recognize who I am anymore . I get rib pains leg pains . I’ve gained a lot of weight and just don’t know how to go on with my new me . Fear has taken over my whole life . I don’t think this is a way to live as I am also thankful for getting through all my treatments and surgeries . But, I was 39 when I was diagonesed . I am now 41 . I’ve lost my job also due to my illness . I want able to work through this . Feel like the whole 2 years I was just seeing doctors all the time had no room to do anything else in my life . Always feeling exhausted , fatigue , and depressed . I want to get back to me again . I just don’t know how .

    • Jean Rowe says:

      Dear Joann, I am deeply sorry about the many painful changes you have experienced
      due to breast cancer. I am the Program Manager of Survivorship and
      Support for YSC, a licensed clinical social worker and an oncology
      social worker. I want you to know everything you are feeling is normal.
      Cancer is a traumatic experience even on a good day, and I would be
      surprised if you weren’t feeling anxious and depressed. Pain takes up
      so much energy, too, when treatment is socking it to your energy as
      well. It’s a double whammy. Are you currently seen by someone whose
      specialty is pain management? This professional can be an added asset
      to your team to help alleviate your symptoms. During this time, have
      you sought the help of a professional therapist? If you have not, I
      would highly recommend that you do so. You may have to shop around. If
      the first one isn’t a good fit, that’s okay. Keep looking. If you have
      access to oncology social workers who provide counseling as part of
      their work, you might try that avenue. Lastly, have you talked with
      other survivors through our community boards and/or in-person support
      meetings? Sorry for the long message, but we all want you to have the
      support you need and deserve. I hope this helps. In addition, we also
      have a great resource, our Post-Treatment Navigator. It can be
      downloaded or ordered for free.
      http://www.youngsurvival.org/programs/learn/educational-resources
      Please feel free to reach out to me!

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