A New Bond Becomes a Strong Bond

YSC Summit and SymposiumsMany young women who are diagnosed with breast cancer feel alone.  Even for those with supportive families and friends, there’s sometimes a longing to connect with women who “get it.” To help alleviate this isolation, Young Survival Coalition will host the 2015 national summit and regional symposiums to address the concerns and unique issues young women face.

Melanie was diagnosed with Triple Negative Breast Cancer in 2011 when she was 30 years old.  To her dismay, she didn’t receive a lot of support from her loved ones and no one accompanied her to chemotherapy treatments.  “I removed myself from a lot of people,” she says. “I became more of an isolated person because I felt like I wasn’t getting any help.“ Unable to find other young survivors in her city, Melanie felt it was important that she attend C4YW so she could meet other women she could relate to physically, mentally and emotionally.

When LaMonica was diagnosed with DCIS in 2012 at the age of 37, she was able to cope with her diagnosis because her family supported her and they often prayed together. Although LaMonica attended support groups, she wanted to ask questions but she kept to herself. “I just really went to listen,” she says.  “There was no one African American in my age group that I could relate to.” Instead, she conducted research to educate and encourage herself.  She decided to attend C4YW to establish some “sister connections” with other young women.

During the C4YW Conference in February 2014, which took place in Orlando, FL, breast cancer survivors Melanie from Nashville, TN and LaMonica from Akron, OH began their budding friendship.

Both women look forward to the possibility of connecting in person during the #YSC2015 Summit in Houston, TX in March 6-8, 2015.

(L-R, Melanie and LaMonica at the Cancer and Careers Conference)

(L-R, Melanie and LaMonica at the Cancer and Careers Conference)

While waiting for the shuttle bus to take them from the airport to the conference hotel, Melanie and LaMonica started talking and realized they had a lot in common. “We just clicked. It was like we were friends forever,” recalls Melanie.

LaMonica was relieved to meet Melanie because she was visiting a new city. “I just felt really comfortable. I was able to finally connect with somebody who experienced breast cancer as a single mother.”

Upon arriving at the conference, LaMonica and Melanie were amazed by the hundreds of other young women they encountered.

“I already felt that breast cancer patients or survivors are already in their own little world.  I had visited a different type of world,” says Melanie.

Both women were empowered by the speakers, workshops, resources and the testimonials of other survivors at the conference.

“It was good to hear how other women overcame with work and family and kids. How they coped and what they did to get through it,“ said LaMonica.

Upon returning home from the conference, Melanie and LaMonica communicate with each other often usually through text messages.  They share information about resources they’ve found and they discuss how they’re relating in their daily lives. In June, they both attended the Cancer and Careers Conference in New York City of which YSC is a community partner.  This was another great opportunity for them to gain more knowledge and spend time together.  Melanie feels that LaMonica is the support that she needs to help her along her breast cancer journey: “She is a sweet person, a wonderful individual,” she said.  “We have a bond that’s unbreakable.”

 

 

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Categories: YSC SYNC - Survivors

Surviving Science?

Tracy Leduc's Poster "Research Think Tank: A Model of Survivor-Scientist Collaboration"

Tracy Leduc’s Poster “Research Think Tank: A Model of Survivor-Scientist Collaboration”

Last December, a friend of mine who shares my interest in breast cancer research suggested that I apply for the Scientist – Survivor Program (SSP) at the annual conference of the American Association for Cancer Research (AACR). Having been through treatment for breast cancer back in 2006, I already thought of myself as a “scientist survivor,” (e.g. someone who managed to survive despite what the scientists did to me).   I was intrigued enough to look into the program, and I’m really glad I did. The program brings survivors and patient advocates of all types of cancer together with cancer researchers from the entire research spectrum to maximize the advocates’ experience at the AACR conference.

The goal of the SSP is to educate advocates about the current state of cancer research. This year, one of the central topics of the conference was immunology. While researchers are using different approaches, all are working to harness the body’s own immune system to attack cancer cells. Researchers reported on some great successes with melanoma and various blood cancers, but the same strategies have not worked quite as well with other cancers. The goal now is to find out why that is and determine how to replicate these good results.

Another area that got a lot of attention was what I call “real-time medicine.” With breast cancer, most patients have a biopsy at or shortly after diagnosis and treatment decisions are made based on that biopsy. If the cancer later metastasizes or recurs, rarely is there ever a new biopsy. Instead, treatment decisions are usually based on the assumption that the biology of the recurrence or the metastasis is the same as the original tumor. This is assumed even though researchers know that cancer cells may have changed over time. However, several researchers are working on finding ways to make treatment more responsive to the changing cancer cells. They are drawing blood to obtain circulating tumor cells (CTCs) at numerous times during treatment, analyzing the characteristics of those CTCs, and then using that information to determine whether a particular treatment is working or whether a different treatment regimen might be more effective. Thus, cancer treatment can respond in “real time” to changes in the cancer cells. While this research is still in its preliminary stages, it shows great promise as a way to make cancer treatments more effective.

In addition to attending sessions open to all attendees, SSP advocates also had the chance to attend special advocate-only sessions with world-renowned researchers that were intended to give the advocates a better understanding of specific research areas and topics, as well as to explain concepts we were hearing about in language a layperson could understand. Topics included immunology, the problem of dealing with “big data,” advances in gene sequencing, the biomechanics of cancer, and genomics.

The SSP, however, is not just about sitting and listening to others. Advocates become participants in the conference by presenting posters about their advocacy work at two poster sessions. Teams of advocates and scientists worked together to answer “challenge questions” that addressed broad, cutting-edge issues relating to cancer research. Advocates also spent an evening participating in a mock tumor board based on several real cases.

I will admit that there were times during the conference that I felt overwhelmed. The size of the conference was intimidating, and I sometimes felt like I had been dropped onto a new planet where everyone was speaking a different language. I learned that I can create and present a poster without using glitter and glue. I also learned that I can prepare a PowerPoint presentation on the fly. More importantly, I learned that I can not only attend a scientific conference, but also actively participate in one. That made me truly a Scientist-Survivor.

 Tracy Leduc is an 8-year breast cancer survivor.  She focuses her volunteer work on breast cancer research advocacy and spends her vacation time attending scientific conferences.  She was an advocate member of the YSC Research Think Tank.

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Breaking News from ASCO 2014

ASCOEach year, new cancer-related study results and data are released at the ASCO (American Society of Clinical Oncology) annual meeting held in Chicago. Today at ASCO 2014, long-awaited data from the SOFT and TEXT trials was released and these results may impact the treatment of young women diagnosed with early stage hormone receptor positive breast cancer. The importance of this data was made apparent by its inclusion in a plenary session oral presentation, which is reserved for only the most significant trial results.

The SOFT and TEXT trials compared an aromatase inhibitor – exemestane – to tamoxifen in early stage hormone receptor positive breast cancer, along with ovarian suppression. At a median follow-up of 5.7 years, the studies show that those participants receiving exemestane along with ovarian function suppression had a significantly reduced disease-free survival of 91.1% vs. 87.3% on tamoxifen and ovarian suppression.   The breast cancer-free interval also shows an advantage for the exemestane arm, 92.8% vs. 88.8%. There were 4,690 women in the combined study results. You can download the original study at nejm.org at no cost.

You should know:

-   20% of the study participants were under 40 years old
-   the median age was 43 years old
-   36% had tumors larger than 2 cm and 42% had positive lymph nodes
-   ovarian function suppression was achieved by triptorelin (an injection that shuts down the ovaries) or, after six months, oophorectomy or ovarian irradiation
-   overall survival benefit cannot be determined at this time – it’s too soon!
-   side effects were mostly similar between the two arms (depression, hot flashes, musculoskeletal aches and pains, sexual side effects, osteoporosis) , but a little more severe in the exemestane group (31%) versus the tamoxifen group (29%).   The tamoxifen group had higher incidence of thromboembolism (blood clot) and urinary incontinence.
-   stopping treatment early occurred more in the exemestane group (15%) vs. tamoxifen (11%).
-   more data on the tamoxifen only arm (without ovarian suppression) is expected to be reported at the San Antonio Breast Cancer Symposium in December

 

More Background

The SOFT (Suppression of Ovarian Function plus Tamoxifen or Exemestane) trial had three arms comparing the use of tamoxifen only, tamoxifen plus ovarian suppression, and exemestane plus ovarian suppression in premenopausal women with hormone receptor positive breast cancer. Ovarian suppression is the shutting down of a woman’s ovaries either by removing them, radiating them, or giving regular injections to stop their functioning. Tamoxifen works in premenopausal women by blocking the estrogen receptor and it is currently the standard of care in the United States. Exemestane is an aromatase inhibitor which blocks the production of estrogen in postmenopausal women.

TEXT (Tamoxifen and Exemestane Trial) contained two arms comparing ovarian suppression using an injection of triptorelin plus tamoxifen for five years versus ovarian suppression (using triptorelin) plus exemestane for five years. Ultimately, these trials hope to shed light on whether ovarian suppression is beneficial in premenopausal women and if so, which medication (tamoxifen or exemestane) should be prescribed with it.

The studies enrolled women with breast cancer between November 2003 and April 2011 at 510 centers in 27 countries.

Reported by Diana Chingos, a survivor of early onset breast cancer and a member of the Young Survival Coalition Research Think Tank. She lives in Los Angeles.

 

 

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Program Spotlight: Voices of SurvivorLink 


Young Survival Coalition’s SurvivorLink peer mentoring program has helped thousands of young breast cancer survivors by connecting them with trained volunteers who’ve been through similar situations. SurvivorLink Volunteer mentors are women from all backgrounds who were diagnosed at different stages: what they have in common is a desire to give back to others.

 

Rayan

Rayan, diagnosed at 32

Rayan became a SurvivorLink volunteer in 2011 because she didn’t feel like there were peer support programs that effectively addressed her needs when she was diagnosed with triple negative breast cancer in 2003 at the age of 32.  A year after she finished treatment, Rayan found YSC on the Internet, she was finally able to connect with other young survivors.  She feels that YSC does such vital work and it’s important for her to share her story to give hope to other women. “I am glad just to be able to give them the resources that I had to struggle for,” says Rayan.  She feels that the women she’s mentored are relieved to talk to her because she can give them some ideas about what to expect while they’re going through the process and post-treatment.

 

Katherine

Katherine, diagnosed at 31

Inflammatory Breast Cancer survivor Katherine was diagnosed in 2005 when she was 31 years old.  After calling a breast cancer hotline she was connected with a survivor in her 60s who was helpful, but Katherine wanted to speak to a young woman who could relate to her concerns. Fortunately the woman told her about YSC, so she attended a YSC meeting in Seattle, WA and was blown away by the support she received. She had great experiences attending YSC activities and events, but she stepped away for a couple of years to focus on other aspects of her life.  When the SurvivorLink training program became available online, she chose to volunteer because of the ease and flexibility. “I feel like I have this massive amount of knowledge to be able to share. That is satisfying,” says Katherine.

 

Erika

Erika, diagnosed at 28 & 33

Two-time breast cancer survivor Erika was diagnosed in 2003 and again 2008 when she was 33 years old.  Although she had great support from her family and friends, she felt very nervous and wanted to speak to another survivor. “Sometimes you just want to hear about what worked for somebody else,” says Erica. She needed the network of women from YSC who helped her along her journey. This inspired her to become a peer support volunteer in 2005 and she’s been involved ever since.  “I hope that when I do talk to someone I can give them some type of comfort to let them know it’s not the end of the world,” she says.

 

 

 

For more information about how you can connect with a trained SurvivorLink Volunteer, or if you’re ready to give back, contact YSC by phone at 877.972.1011 or by email.

 

 

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BRCA Mutations: What’s New in Clinical Trials?

BioMarin, a biopharmaceutical company, is launching a clinical trial to evaluate BMN 673, a potential first best-in-class PARP (poly ADP-ribose polymerase) inhibitor. This inhibitor is for patients with hereditary forms of breast cancer, specifically deleterious gBRCA mutation, in women with locally advanced and metastatic breast cancer. A PARP inhibitor is a targeted therapy, which interferes with a cancer cell’s ability to repair DNA and may lead to death of cancer cells. Because it is a “targeted” therapy, the drug goes after only the cancer-related cells rather than all cells.

The National Breast Cancer Coalition (NBCC), a nonprofit organization committed to the eradication of breast cancer, is a collaborating partner in the BMN 673 research. YSC, as a board member of NBCC, supports their efforts. NBCC’s partnership decisions on clinical trials follow rigorous criteria including significance of the research question, rigor of study design and ethical conduct of the trial among others. The BioMarin clinical trial proposed for BMN 673 meets those criteria. The BioMarin trial is unique because the team includes advocates who have received training through NBCC’s intensive science training program, Project LEAD®. Tracy Leduc and I attended the investigators’ meeting for this trial in Miami last week. The team truly cares about finding better, less toxic ways to fight breast cancer. The Phase 1 and 2 results of this trial show a high likelihood of success.

“BioMarin wants to make big differences in the lives of patients. We are honored to include a seat at the table for our colleagues from NBCC. Our efforts are best served by hearing their voice from the beginning and taking action together,” said Hank Fuchs, Chief Medical Officer of BioMarin.

“We look forward to conducting a world-class study in collaboration with the finest clinical investigators in the world to evaluate the safety and efficacy of BMN 673 in the metastatic setting. Our advocates are poised to change the world through our actions. Ultimately, we hope to prevent women from getting breast cancer and prevent it from spreading outside the breast,” Fran Visco, NBCC President added.

The BioMarin trial is underway and recruiting women ages 18 and older with a gBRCA mutation, who have experienced metastasis or a local recurrence after treatment for their initial diagnosis. For more information on the trial and how to enroll, please visit http://clinicaltrials.gov/show/NCT01286987

About the National Breast Cancer Coalition (NBCC)
NBCC is dedicated to knowing how to end breast cancer by January 1, 2020 through the power of grassroots action and advocacy. NBCC supports increasing funding for innovative breast cancer research; monitors how those funds are spent; expands access to quality health care for all; and ensures that trained advocates influence all decision making in breast cancer. Join NBCC, learn more and take action. Visit BreastCancerDeadline2020.org.

About BioMarin
BioMarin develops and commercializes innovative biopharmaceuticals for serious diseases and medical conditions. The company’s product portfolio comprises four approved products and multiple clinical and pre-clinical product candidates. For additional information, please visit www.BMRN.com.


Joy Simha, diagnosed with Stage 2B breast cancer in 1994, is one of the three Co-Founders of YSC.  She is a former YSC Board Member and has represented YSC on the Board of Directors of the National Breast Cancer Coalition (NBCC). Joy graduated NBCC’s Project LEAD®  in 1998 and has served as an educated consumer advocate as a member of the Integration Panel of the Department of Defense Breast Cancer Research Program since 2009.

Most recently Joy was co-chair of YSC’s 2013 Research Think Tank in order to insure researchers and educated advocates worked together to define the research priorities that would make the greatest impact in the quantity and quality of life for young women affected by breast cancer.  She currently lives and works as a writer and consultant out of her home in New Jersey.

 

 

 

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YSC Research Updates

YSC wants to keep our constituents updated on relevant medical news, and we have three breast cancer updates to share.  They include:  (1)  FDA approval of Perjeta before surgery in HER2+ breast cancer; (2) the PALOMA study that includes young women in the study of a new drug for women with hormone receptor positive metastatic breast cancer; and (3) the BROCADE study which will also enroll young women with a BRCA mutation to test veliparib, a PARP inhibitor, in women with recurrent or metastatic breast cancer.

Perjeta

This past fall, the FDA granted accelerated approval of the drug Perjeta (Pertuzumab) for use before surgery (also called “neoadjuvant” use) in women with HER2+ early stage breast cancer.  The FDA approval was based on the NEOSPHERE (Neoadjuvant Study of Pertuzumab and Herceptin in an Early Regimen Evaluation) study which showed that four cycles (12 weeks) of treatment with Perjeta, Herceptin and Docetaxel  (Taxotere) in patients with HER2+, locally advanced inflammatory or early stage breast cancer, significantly improved the rate of total pathological complete response (pCR) prior to surgery.  A total pCR occurs when, at the time of surgery, there is no detectable evidence of breast cancer remaining.  In the Perjeta, Herceptin, and Docetaxel group, 39.3% of patients experienced a pCR, compared to 21.5% in the group without Perjeta (receiving  Herceptin and Docetaxel only).  The most common side effects from Perjeta include a reduction in white blood cell counts, diarrhea, and hair loss, although heart problems are a potential serious side effect which should be closely monitored.

Like Herceptin, Perjeta targets the HER2 receptor, a protein found in large quantities on the outside of HER2+ cancer cells.  Perjeta works nicely with Herceptin as they both bind to different places and may result in a greater blocking of the HER signaling pathway and therefore slow the growth of or kill the cancer cells.  Perjeta was previously approved by the FDA for use in women with metastatic HER2+ breast cancer who had not yet received anti-HER2 therapy or chemotherapy for metastatic breast cancer.

Perjeta is the first treatment specifically approved by the FDA for neoadjuvant use and marks the first time that FDA granted a drug approval based upon pCR.  The FDA’s accelerated approval mechanism is a conditional approval, which makes it possible for drugs shown in early studies to have a clinical benefit to be available to patients more quickly, with full FDA approval granted later if additional studies confirm the drug’s benefit and safety.  The FDA will examine results from the ongoing APHINITY trial (examining chemotherapy and Herceptin with and without Perjeta), expected to be completed in 2016, to determine whether a full approval will be given to Perjeta.  There is currently no data which shows whether Perjeta prior to surgery improves overall survival.

Two Studies for Metastatic Breast Cancer to Include Young Women

Young women are not always included in clinical trials, especially in the metastatic setting, so we want to be sure that you are aware of two current offerings.

PALOMA-3

PALOMA-3 is a Pfizer-sponsored Phase 3 trial to investigate its drug palbociclib in women with hormone receptor positive (HR+), HER2 negative, metastatic breast cancer whose disease has progressed after prior endocrine (hormonal) therapy.  Palbociclib blocks cyclin-dependent kinases 4 and 6 (proteins upregulated in many tumor cell types that regulate cell replication), thereby hindering tumor cell progression.  An interim analysis of a Phase 2 trial of palbociclib, presented at San Antonio Breast Cancer Symposium in 2012, showed progression-free survival (period of time without tumor progression) of 26.1 months for patients on palbociclib plus an aromatase inhibitor letrozole (Femara) compared to 7.5 months for patients on letrozole alone.  This same study showed that neutropenia, a low number of neutrophils (type of white blood cell), was the most common side effect.

Two phase 3 trials of palbociclib are now enrolling for women with metastatic breast cancer that is HR+, HER2 negative and that progressed after prior endocrine therapy.  One trial is for post-menopausal women and the other includes pre and peri-menopausal women ages 18 and older.  Pre and perimenopausal women will be given an LHRH antagonist shot to shut down the ovaries.  In this double blind, placebo-controlled trial, patients will be randomized to receive either palbociclib and fulvestrant (an estrogen receptor antagonist also known as Faslodex, used after a patient’s tumor has progressed on other antiestrogen therapy) or a placebo and fulvestrant.  The researchers will examine whether the addition of palbociclib prolongs progression-free survival and compare safety between the two arms.  Palbociclib is an oral medication dosed daily for 3 weeks with one week off while fulvestrant is a shot administered at regular intervals.  For more details on this trial, please visit:

http://clinicaltrials.gov/ct2/show/NCT01942135?term=PALOMA&rank=1

BROCADE

A new international clinical trial is enrolling patients of all ages with metastatic or recurrent breast cancer who are BRCA 1 or 2 positive to test the efficacy and safety of veliparib, a PARP (poly ADP-ribose polymerase) inhibitor to be used in conjunction with chemotherapy.  A PARP inhibitor is a targeted therapy which interferes with a cancer cell’s ability to repair DNA and may lead to death of cancer cells.  Because it is a “targeted” therapy, the drug goes after only the cancer-related cells rather than all cells.  PARP inhibitors have shown mixed results in prior studies, but it is believed that they hold promise in breast cancers with BRCA 1/2 mutations.

Participants in BROCADE will be randomized to one of three treatment arms:  (1) Veliparib with temozolomide (Temodar) (an oral chemotherapy); (2) Veliparib with carboplatin and paclitaxel (both regimens given through infusion, the latter known as Taxol); or (3) placebo with carboplatin and paclitaxel.  Common side effects of PARP inhibitors include anemia, fatigue, nausea and vomiting.  More than two prior cancer treatments for metastatic breast cancer and/or a prior taxane therapy for metastatic breast cancer as well as brain metastases may exclude study participation.  This study is being conducted by AbbVie, formerly part of Abbott Laboratories.  For more details on this study, please visit:  http://www.clinicaltrials.gov/ct2/show/NCT01506609?term=veliparib&rank=3

This information is presented for educational purposes only.  These treatments may not be available or best for everyone.  As always, please consult your physician for details on the best treatments for you.

Sources:

http://www.fda.gov/forconsumers/byaudience/forpatientadvocates/speedingaccesstoimportantnewtherapies/ucm128291.htm

http://www.gene.com/media/press-releases/14548/2013-09-30/fda-grants-genentechs-perjeta-accelerate

http://www.genomeweb.com/clinical-genomics/asco-pfizer-unveils-study-er-positive-her2-negative-breast-cancer-rx-herceptin-b

http://clinicaltrials.gov/ct2/show/NCT01942135?term=PALOMA&rank=1

http://cdmrp.army.mil/bcrp/research_highlights/13slamon_highlight.shtml

http://www.clinicaltrials.gov/ct2/show/NCT01506609?term=veliparib&rank=3

www.BROCADEStudy.com

http://annonc.oxfordjournals.org/content/early/2010/07/19/annonc.mdq322.full

http://www.onclive.com/publications/oncology-live/2012/july-2012/the-parp-inhibitors-down-but-not-out/2

http://www.facingourrisk.org/information_research/newsletter_archives/2013spring/parp-inhibitor-research.php

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3 Rides, 2 Options, 1 Purpose

Jen Merschdorf (left) at 2013 West Coast TdP, with YSC State Leader and survivor Kate McGough. (Photo by Capture 14)

Jen Merschdorf (left) at 2013 West Coast TdP, with YSC State Leader and survivor Kate McGough. (Photo by Capture 14)

Did you hear? All YSC Tour De Pink® (TdP) routes are new this year – how cool is that?

The East Coast (Sept. 19-21) route begins in Philadelphia and ends on Assateague Island, Md. I didn’t know much about Assateague, let alone how to pronounce it. But when I saw pictures, I fell in love with this gorgeous island.

When you arrive at Assateague – which is a National Park – wild horses greet you on the beautiful beach!  During our three days, we will ride from Philadelphia to Dover, Del., and stay at Dover Downs. From Dover, we will explore Maryland’s scenic Eastern Shore. On day three, we’ll enjoy the waves crashing, horses galloping and celebrating 200 miles of riding through Pennsylvania, Delaware and Maryland.

Oh, and one more thing – the optional century ride on day two is a flat (yes, FLAT) 100 miles. I think I’m going to go for it! I have always wanted to do a century but never had the guts. This could be my year.

The West Coast (Oct. 17-19) route begins in Paso Robles, Calif. Once again, Giant Bicycles will send us off, but from a new starting location. (Side note: I have said this before, but Giant’s partnership with YSC is immeasurable. For my first TdP as a survivor rider two years ago, I received a donated Inspire bike from Liv/Giant. The bike, designed by a YSC survivor and TdP alumni rider, was the boost I needed to learn to ride – and the rest is history.)

Now, back to the route. We will ride from San Luis Obispo to Solvang and finish at Point Mugu. I’m from the West Coast, so this ride holds a special place in my heart. Riding in California inspires me to keep riding for all young women affected by breast cancer who can’t join us. I take deep breaths as I look at the ocean (while trying to keep my eyes on the road) and remember my own breast cancer journey.

Solvang, Calif., is one of the cutest little towns and I can’t wait for you all to experience it with me. The little bakeries and shops give you that hometown feel with beautiful California sunshine. And we end day three on the beach….. AHHHH! It can’t come soon enough!

The Atlanta ride (Oct. 25), our one-day ride, is once again in the Atlanta, Ga., suburbs but we’re taking a more scenic route this year. This will be my first time heading south for the Atlanta ride and I can’t wait to see it. I have heard so many stories from participants who look forward to the event year after year.  It really is much more than a bike ride. It’s a family-friendly event with more than 800 participants from the surrounding community.

After participants run, walk or ride, they enjoy food and drinks in the hospitality area from local community restaurants. Then they browse the expo area to check out local businesses. I am looking forward to being with the local community of survivors as we watch the emotional opening ceremony together!

Of course I want September and October to hurry up and get here so I can ride my bike alongside so many of you, but I need to get training AND fundraising. I am dragging myself to the gym through the snow and ice that have blanketed the East Coast. As soon as it is warm enough, I will be back in the saddle with my heart set on riding my first century! Fundraising is the easy part, but I always put it off too long – so this year I am going to start early.

So, which one will you ride this year? A flat century in September? A ride through the California vineyards in October? Or a one-day community event in Atlanta?

Sign up now – before all the spots sell out: http://www.ysctourdepink.org/

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Categories: Taking my Body Back

I Hate Breast Cancer!

How StudyI am sorry – I have to say it. I hate breast cancer. I hate that it can take a young woman too soon and leave families to grieve. I hate that it leaves scars on everyone it touches on both the inside and the outside. I hate that people think incorrectly that it is always a “curable cancer” as it sneaks around and continues to kill, injure and destroy.

I know that during the holiday season I should be focused on how much I, and all of us, have to be thankful for – but I don’t feel like it. I feel like saying what we all feel – I HATE BREAST CANCER!

Ok – I know throwing a temper tantrum is not really going to change anything, so let’s talk about something that actually WILL make a difference….. the Health of Women (HOW) Study. Have you heard about it? The HOW Study is awesome…. and I don’t say that about many studies.

This is a study for ALL women.

All ages.

All colors.

Women who have been diagnosed with breast cancer.

And women who have not been diagnosed.

ALL WOMEN.

If you have never been diagnosed – but care about someone who has – this is an easy way to make an impact. In order to find out what might be causing breast cancer, we need women who have NOT been diagnosed to participate, too.

What I also love about this study is that Dr. Susan Love is determined to find and expose the true side effects of breast cancer treatment – and NO ONE else is focusing here with such determination. If you have breast cancer and are young – you need to sign up and share with Dr. Love all of the side effects you have experienced – so that the voices of all young women with breast cancer are heard loud and clear.

Here is a quote from Dr. Love regarding what she is finding so far…

“Most interesting to me was the fact that many of you were not told or at least did not remember being told about the side effects that we, as a medical profession, know will happen. For example, you will always be numb after a mastectomy and will never get the feeling back. It has to do with the way the operation is done cutting all the sensory nerves. In addition, a reconstructed breast will never have sensation! I used to yell at the plastic surgeons when I was in practice because they would say things like ‘your new breast will look normal and feel normal.’ Other long term consequences such as neuropathy, pins and needles and sensory problems from the chemotherapy also don’t get better. Some of the sexual issues, i.e. loss of libido or dryness, can be caused by drugs especially Aromatase Inhibitors and could resolve once you stop taking them. But, if it is caused by being put into menopause, they probably won’t resolve. While most of us would accept the consequences of treatment to save our lives, we really should know what to expect! When we formally collect all the data on these issues in the HOW study in the spring, we will present it to the medical profession and see if we can use it to change pre-treatment education.”

So as we begin to focus on another year coming to an end, let’s do something that will actually make a difference. Join me in signing up for the HOW Study. It’s simple, important and will make a real difference for thousands of women – how often are you given that opportunity?

If you are a woman – sign up and ask five of your girlfriends to do the same. It is easy – all you have to do is share this link: www.questionthecure.org

Remember – you do not have to be a breast cancer survivor to sign up – you simply need to be a woman who cares.

Join me – let’s do something together that makes real change!

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State Leaders Throw YSC a 15th Birthday Party

Happy 15th Birthday YSC! What do balloons, cake and frozen yogurt have to do with YSC?  They were all part of YSC’s 15th birthday parties held by YSC state leaders across the country. These events were held to celebrate YSC’s anniversary and provide networking opportunities for young women.

State leaders invited their friends, family and coworkers to celebrate the work YSC has accomplished, build excitement for upcoming programs and let people know how they could become involved as a volunteer through the new volunteer engagement initiative, Ignite.

YSC Birthday Party @ NordstromSeveral state leaders combined their YSC birthday party with the Nordstrom We Heart a Great Fit event. Ohio State Leader Julie Klaski had a group of girlfriends meet at Nordstrom, where they shared treats, had a great shopping trip and helped support YSC.

In Maryland, State Leader Lori Yori hosted a YSC birthday party for oncology nurses.  She used the event to ensure the nurses in her area know about YSC and are able to inform their patients about YSC’s programs and services.

Zumba for YSC!Washington State Leader Karen Lawson combined her passion for volunteering and riding in YSC Tour de Pink into an occasion that celebrated both vents.

Celebrate 15 years of YSC by giving the gift of your time; sign up today to volunteer for YSC!

Register as a YSC Volunteer

Register as a YSC Volunteer

 

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Celebrating 10 Years of YSC Tour de Pink

Lisa, at left,  and fellow YSC Founding Member Jill Frank with a colorful TdP fan.

Lisa, at left, and fellow YSC Founding Member Jill Frey with a colorful TdP fan.

This year was incredible at Tour de Pink (TdP) for so many reasons including a fabulous milestone – celebrating the 10th anniversary Tour de Pink East Coast ride. Ten years ago, Matt Purdue and I were able to convince four other cyclists plus support volunteers to ride from Boston to NYC to raise money and awareness for YSC. That small but powerful effort has grown to more than 1,000 participants and over $1 million raised annually between the East Coast, West Coast and Atlanta TdP rides.

After each year’s Tour de Pink I look back and say, it went by so quickly, I didn’t get any good pictures, I can’t believe I won’t see all of these amazing people for another year and many other thoughts. And this year was no different. However, in a way I cannot quite express, there was something different this year in a very, very positive way.

The energy on the rides was fabulous. Everyone was upbeat, excited to ride, volunteer or work their particular role. Balancing this energy was a subtle peacefulness and relaxed atmosphere. I know that sounds odd and mutually exclusive. I really wish I could articulate it better. It was just something intangible yet beautiful.

For those of you who have not experienced Tour de Pink (#YSCTdP), at the Friday and Saturday night dinners we invite a survivor and a caregiver to speak to the participants. They tell their story, why they are riding or volunteering and what the ride means to them. Everyone has their own way of expressing this.

Some do so through touching stories, others through tears and still others through humor (like the Top 10 reasons to ride in Tour de Pink á la David Letterman’s Top 10). But each story only further supports the meaning of the ride and the bond we all form with each other for a common cause — to raise money for YSC and its programs so that no young woman has to go through breast cancer alone.

Get a glimpse at what an amazing time we had at Tour de Pink in the 2013 East Coast and West Coast online photo albums (all photos by Jake Orness). Registration for next year’s rides will open in early 2014, so please visit our website then to find out more.

Finally, I’d like to share something said to me this year that is perhaps my favorite line from the 2013 YSC Tour de Pink. Now, granted, there were a number of really great things said along the way, but, when my metropolitan (that’s a new nickname for metastatic because it sounds so swanky!) sister rode her bike next to mine on day two of West Coast Tour de Pink she said, “You know what I decided today? I decided today I don’t have cancer!” And you know what? … She lived that on the ride and tries to live it every day.

And so another Tour de Pink season ends and we close out with the same reason we ride every year … Because We Can!

 

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