San Antonio Breast Cancer Symposium – A Patient Advocate’s POV

It was extremely exciting being at the 36th annual Breast Cancer Symposium in San Antonio (SABCS). I was hoping to go on Twitter during the Symposium but was having a lot of trouble during the conference with the wifi signal. I decided to concentrate on the presentations and when I could find information being reported on them I knew that those that could not hear the presentations live wanted to know what was happening there. All of the speakers were incredible. There are tons of studies that were reported in the news that I tried to “scoop” as many as I could at: Breast Cancer News.

As much as I try to deny that there is any left over chemobrain from the dose-dense ACT (Adriamycin, Cytoxan, Taxol) chemotherapy that I did for treatment of my primary breast cancer in 2005, I have to admit that as much as I want to have my brain functioning at full capacity, there are residual effects that happen and I can’t hold so much information all at once. At times things slip away. I have particularly noticed that I make errors with numbers. With that in mind I accept my limitations. I tried to be as present as I could during the conference, and I hope to be careful when putting dates with numbers so as not to make careless errors. I plan to attend again next year and I am determined to keep myself on the Twitter feed while I take in the presentations and have an assistant help in finding the articles that represent the presentations so that those who can’t attend can get the information.

If I wait too long to blog about SABCS I know that I will write something so long that it will be too much to read. I am going to post more than one post so that I can keep this at a reasonable length. I am also going to suggest some great links to other blogs and if you wish to follow them just click on the ones that are highlighted in a different color and it will take you to these other great places for information. To read some terrific explanations of some of the studies take a look at Dr. Susan Love’s Act with Love Blog, San Antonio Breast Symposium Day 1 – Day 3, with a great round up including the Survivorship Presentation on Day 3, #BCSM blog presentations by Dr. Julie Gralow, SABCS Highlights, and SABCS Highlights by Dr. Robert S. Miller.

I did miss seeing Dr. Susan Love at the conference live but her round up of SABCS is amazing! I saw Dr. Gralow presenting and had the good fortune to meet Dr. Miller in person. I loved seeing the people I know from social media live at the conference. It turns out, thanks to connections on Twitter, that I was fortunate to share my room with a remarkable breast surgeon, Dr. Dana Abraham. It’s so exciting to meet doctors that care about patients and want to understand this disease from their perspective. It is wonderful to see friends who are fellow patient advocates. I have some photos here. If I mention all the names this will really get very long!

Today, I want to concentrate on my takeaway from all the presentations from the perspective of a patient advocate. One of my favorite parts of the conference was the Case Discussions where the panelists included doctors who are experts in medical oncology, radiotherapy, and they also included a patient advocate. Here, doctors come up to the mike and present real case studies and the panelists give opinions and their ideas about what should be done about the cases presented.

It was exciting to see that the doctors included a patient advocate on the panel as it’s becoming clear to me that doctors are learning a lot from patient advocates. I am so impressed with how hard these medical professionals work to understand and help their patients. I am also very impressed with how many doctors are reaching out to patients with social media and including patient advocates by starting to bring them in to the conversation. Listening to the panel of experts recommending treatments, especially keeping track of all the trials that were being presented at the conference, was extremely impressive. Both the doctors and the patient advocates tried to come up with ways to help and I was really impressed with the fact that the atmosphere was focused on presenting all of the evidenced based information to patients about their options and making sure that patients are part of the process in deciding what they do for their treatment.

I think it’s so important that patients make sure they are working with a doctor who keeps up with the latest information available for their specific case and allows the patient to make informed decisions by presenting the patient all the options. When a patient is diagnosed at any stage of breast cancer, there is so much information and it’s hard to sort it all out. Yet if a doctor just dictates the treatment without explaining the pros and cons of all the options, the patient is not being allowed patients to understand fully what choices are available. As patient advocates we want to know as much as we can about this disease because one size does not fit all. Every case is unique.

I was struck by a doctor who had a patient that was having trouble taking her tamoxifen. Her doctor really cared about trying to have her patient be compliant and the patient was having terrible trouble with the side effects. With this case the doctors had some ideas for medications and the patient advocate (Beverly Canin) also recommended alternative therapies. What struck me most was how compassionate the doctors were as they presented their cases as well as the suggestions coming from the panelist, especially when using all the trials presented at SABCS.

For anyone who has breast cancer, has been in treatment, or is in treatment for breast cancer and knows first hand about these awful side effects from so many treatments they can consider alternative complimentary treatments. A great resource for complimentary and alternative therapies is The Annie Appleseed Project,

In contrast to the incredible compassion that I saw from so many doctors, I saw a different approach from one of the case study presentations that had to do with AI’s and compliance of patients. The presenter seemed to want to be dismissive of the patient’s complaints about side effects with these medications. Without calling out the specific study or doctor presenting it, I was disturbed by his lack of compassion and how much he gave the impression that the side effects and his data seemed to imply the effects were probably more in the patients mind than as a result of the medication. Here was an example where a doctor needs to be more like the incredible doctors I was surrounded by as far as being compassionate and realizing these side effects are real.

I also love attending the Alamo Breast Cancer Foundation (ABCF) Hot Topics Mentor Sessions. They always have the best speakers reviewing many of the case studies presented during the day as well as other topics of interest to them. One of the panel discussions was taped and to see this great presentation go to: Breast Cancer Answers’ Video of SABCS Hot Topic Mentor Sessions.

One of the patient advocate questions dealt with asking what we can do as advocates. Clifford A. Hudis, MD the President of ASCO, Chief of Breast Cancer Medicine Service and an attending physician at Memorial Sloan-Kettering Cancer Center, had recommended that we keep writing to congress.

I am a member of ASCO in Action and I recommend that everyone interested in being an advocate join this group. They give action alerts and pre-written letters to congress about issues important to all of us, especially in reference to oncology. I always take the letters and when they say “As an oncologist in your district” I change the words to “As a patient of an oncologist in your district” and send the letters off to my representatives. Another important organization to pay attention to is Breast Cancer Action. They also have important actions and letters that impact the breast cancer community. At Advocates 4 Breast Cancer we are working toward trying to get a program to make it easy for other advocates to write these letters, but for now please stay posted on this site for alerts to letters that we recommend you write. I was in agreement with Clifford Hudis, MD’s observation that he hears back from every person we write to in Congress. I send them via email and I am glad that they are paying attention.

I was also moved by a talk that Cate Edwards (daughter of the late Elizabeth Edwards) gave during a dinner with Novartis Oncology about her involvement with metastatic disease, recognizing the importance of the patient as well as the caretakers. Everyone knows how passionate I am about making sure no one with Metastatic Breast Cancer is forgotten.

As breast cancer patient advocates Stages 0-4, we must always put those with Metastatic Breast Cancer (MBC) first and foremost in our minds and they should never be left to feel abandoned or alone. I wish there had been more at the conference focused on metastatic disease. There were some studies, but next year I’d like to see a stronger focus on research for MBC.

Sequestration has taken its toll of health science at the NIH and NCI. During the year things had to be scaled back 10-15% in labs. This hurts research because science relies on heavy funding. Once again this is where we as patient advocates in the US must keep paying attention to what is happening with the budget in congress and keep writing to congress to have our voices heard.

I am going to end this post as I will be posting some more thoughts in another installment. What a thrill it was to attend this conference live. I am also so grateful for the one-on-one meetings that I got to have with my fellow advocates and doctors.

It is time to work together!

I found this great post on Dr. Susan Love’s “Act with Love” blog. She really put in to words everything that is going through my mind in hopes of all of us who care about breast cancer advocacy working together so that we can make a difference. I am glad Dr. Susan Love reminded us that we can have difference’s of opinions on things, yet still work together on mutual projects that we care about. I have always believed that “United we stand, divided we fall.” This post that I re-blogged is so inspiring and well worth reading!

It is time to work together!

By DSLRF On Wednesday, September 4, 2013 · 

As the summer wanes and October looms, I am struck once again about the fragmentation of the breast cancer advocacy movement.  The history of activism dates well back to 1952 and the American Cancer Society’s Reach to Recovery when a doctor had to give permission for a post mastectomy woman to be seen by a volunteer, lest she be too distressed by the encounter.   The Susan G Komen Foundation (now Komen for the Cure) started in 1983 to raise awareness. Others, such as the Women’s Community Cancer Project (Cambridge, Massachusetts), the Women’s Cancer Resource Center (Oakland, California), Breast Cancer Action (San Francisco), Y Me (Chicago), Mautner Project for Lesbians with Cancer (Washington, D.C.), and NABCO (New York) were focused on education and political action.  As these groups sprang up around the country, it served as a tipping point in the battle for attention to the problem of breast cancer.  These heady days led to the for the formation of the National Breast Coalition (1991), Department of Defense Breast Cancer Research Program (1992), the National Action Plan on Breast Cancer (1993), the California Breast Cancer Research Program (1993) and the Breast Cancer Stamp (1998). Many good women and men contributed to these early successes and we stand on their shoulders and by their sides.

Now as we head into October, anticipating the arrival of the pink tsunami, in some ways it feels like the original battle to end breast cancer has been co-opted by these annual celebrations of survival.  The messages are incessantly upbeat and rarely mention that many women still go on to metastasize, many still die, and the “survivors” live with a new normal based on the collateral damage caused by their treatments.  My recent experience with Leukemia has made me impatient and dissatisfied with the status quo.  While many programs, such as the National Breast Cancer Coalition’s Deadline 2020 and our own Army of Women, are valiant efforts to move us to the goal, it is going to take more than that to get there.

The goal of ending breast cancer is too important to leave to any one group or approach.  I think it’s time for the breast cancer organizations and foundations to start working together on projects that make sense.   We need to find opportunities to collaborate and speak with one voice. We don’t need to agree on everything, but we do need to rise above our differences to find ways and projects that we can work on collectively. Only by working together will we ever be able to achieve the overriding goal we all share– a future without breast cancer!

Metavivor needs Volunteers

Hi Everyone! Metavivor is having a Nationwide call for Volunteers!

MAJOR EVENT TO BRING ATTENTION TO THE NEEDS OF THE METASTATIC BREAST CANCER COMMUNITY. BECAUSE. IT’S TIME….

 

METAvivor Awareness Campaign 2014

Sea to Sea for MBC

Metavivor is now accepting applications for volunteers! Even if you can only spare some small time to volunteer Metavivor needs you! No deed is too big or too small. If you care about Metastatic Breast Cancer, this is worth your time to help.

Event Overview: On February 1, 2014 breast cancer widower Marine Corps LtCol Joseph Fagan will depart San Diego CA, arriving in New York City on Father’s Day weekend. Along the way Joe will meet with researchers, including METAvivor grant recipients, dedicated to improving the lives of metastatic patients.

Joe’s involvement is very personal. In 2010, his wife Lainie Fagan was 29 years old and pregnant with their first child. At 34 weeks she was told her cancer had metastasized and that their child would need to be delivered early so that she could begin treatment. JJ was born October 1, 2010, but tragically it was too late for Lainie; Joe and JJ lost their beloved wife and mother only nine months later. Joe is passionate and determined to do his part so that others can be spared such a devastating loss.

Intent of Event – Awareness and Fundraising: Over 122 days Joe will run 3,845 miles, transiting twelve states and meeting with metastasis researchers, metastatic patients and family members. Public speaking engagements at various locations and the filming of his journey for purpose of a documentary will bring significant attention to metastatic breast cancer and give voice to a patient community that is seldom heard. A coinciding fundraising campaign will bring in valuable dollars to help fund METAvivor’s 2014 research grant cycle, estimated at $320,000.

Opportunities for Volunteers: To maximize the effectiveness of the awareness and fundraising campaigns, Metavivor will need volunteers nationwide in many different capacities.

Those wishing to volunteer should send an email with their name, email address and phone number to the volunteer coordinator: dewaynewilcher@yahoo.com.

Note: Committees are being formed now.

Sponsorship*	Logistics*	Volunteers*	Media Advertisement*
Donations in Kind	Route Organization	Orientation	Advertising
Major Sponsors	Transportation RV	Organizational Coordinators	Photography
Donors	Transportation Flights	Regional Coordinators	Documentary
Merchandising	Run Team Coordinator	Local Volunteer Coordinators	Ceremonial Start San Diego
	Lodging	Volunteer Hours Cataloger	Ceremonial Celebration NYC
	Meal Coordination		Research Center Stops
	Project Light Up		Social Media
	Running Gear		Homecoming Annapolis

You can also help by going to Metavivor’s Facebook page for this event and click “like”, while the page is still under construction. Go to: https://www.facebook.com/pages/Sea-To-Sea-for-MBC/223255354499874

Follow on twitter so you will see the very first tweet!  @C2C4MBC is the official twitter account for this event.

Note from CJ-one of the co-founders of METAvivor:

One quick clarification. The Ambassador Program was launched in 2013 as part of METAvivor’s long-planned national expansion program. It is completely independent of Sea to Sea for MBC, although many volunteers with the Ambassador Program are volunteering to help with the Run as well. The Run is an exciting venture that will occur in 2014. The Ambassador Program is a permanent part of METAvivor and is run by METAvivor Board Member, Lori Marx-Rubiner. Volunteering for either program does not automatically volunteer you for the other. Those wishing to volunteer for the Ambassador program should contact the Director of that program, Lori Marx-Rubiner at regrounding@yahoo.com. Thanks!

The Battle We Didn’t Choose – My Wife’s Fight with Breast Cancer

Hi Everyone! There’s a beautiful love story between Angelo Merendino and his wife Jen. Angelo is an extremely talented photographer. He was also an incredible husband to his wife Jen who got metastatic breast cancer. He photographed her as she lived with this disease all the while loving and caring for her in such a special way. He has a web site that you will find fascinating at: http://mywifesfightwithbreastcancer.com/, where you can read and find out much more about this beautiful story as well as see some incredible photography.

Angelo Merendino’s Book is Now Available for Sale!

Angelo Merendino writes:

I am proud to announce that our story is now available in digital book format! Aside from taking care of Jennifer, putting this book together has been the biggest challenge of my life. More than a story about loss, this is a story about love and life. Above all else I have realized that this book is a love letter from me to Jen.

The book includes many photographs that have not been shown anywhere, as well as a Resources section, audio narrations and videos. It is available in English, Italian, Spanish, French, German and Russian. (Note that if you are hoping to view the book on an iPad, be aware that audio and visual elements will not function. I am currently waiting for approval from Apple on the full-featured, iPad-specific eBook. Please check my website again soon for details on this release.)

Fifty percent of the net profits of all book sales will be donated to The Love You Share*, a non-profit organization I am starting in honor of Jennifer. The mission of The Love You Share is to provide financial assistance to cancer patients in need while they are receiving treatment for cancer. The hope is that by sending a gift card from a local grocery delivery service and reimbursing patients for transportation costs to and from hospital and doctor appointments, The Love You Share will be able to make life easier, even if only for a short time, for someone who is fighting for her life.

Available in English, Italian, Spanish, French, German and Russian.

*The Love You Share has applied to the Internal Revenue Service for 501(c)(3) tax-exempt status.  Donations to The Love You Share are not currently tax-deductible while its application is pending. If The Love You Share receives tax-exempt status, donations received while its application was pending may be treated as tax-deductible contributions retroactive to the date of its formation.

To Buy this Great Book

 

“METavivor on the Move” – I am on the team

I have written about my passion (see: While Flying – Frustration surrounds Me ) for doing  everything I can to advocate for Metastatic Breast Cancer (MBC). 6-10% of breast cancer patients are initially diagnosed at Stage IV (MBC). 30% of all breast cancer patients initially diagnosed with early stage breast cancer will eventually metastasize (or have what some of us call mets). 

In the US alone 1 woman dies every 14 minutes of MBC. I have many friends now who have MBC. Metavivor is an organization that I have great respect for. Like Advocates 4 Breast Cancer they are an all-volunteer, patient-founded organization. They are devoted to raising awareness about metastatic breast cancer, funding vital MBC research and they promote the concept that 30% of every organization’s breast cancer research funds should be devoted to MBC research.

Right now only 2% of all funds for breast cancer organizations go to MBC research. This has to change. As the Executive Director of Advocates 4 Breast Cancer (A4BC), I am proud that our organization is listening to Metavivor. We are devoting 30% of our funds each year to MBC research. We hope that other non-profits will follow our example and recognize how important it is for all breast cancer organizations to fund MBC.

As an update to A4BC, we are in the process of getting our official site up and we are working around the clock to have it done. We are now on Facebook.  Thank you everyone for liking the page and if you haven’t seen it, please have a look and “like” the page to stay updated. Please click on: https://www.facebook.com/advocates4breastcancer.

I am haunted by the death of my very good friend Li Bailey, and my other friends who have died from MBC. Unfortunately this list keeps growing. I also hate that many of my friends have recently become part of the 30% joining my other friends who have MBC. This disease robs so many of so much. We must have MBC research that continues to bring about “quality of life” medications that will extend everyone’s lives for years (not just weeks or months). Forty thousand women in the US alone will die from MBC this year.

Metavivor is also looking for volunteers. They have a fantastic campaign called “Metavivor on the Move.”, inviting people to join the volunteer team. They are establishing 10 regional teams, with representatives from every state, plus volunteers in Canada. Although I have a very full plate, I am part of the volunteer team doing what I can to help with Metavivor.  If you would like to volunteer to help in any capacity of your choosing, send an email to CJ@METAvivor.org

To learn more about MBC please check out Nancy’s Point at: http://nancyspoint.com/mets/

To learn more about METAvivor, please visit their website here: www.metavivor.org.

 

Notes from Dr. Susan Love Speaking at the Summit

I really enjoyed hearing Dr. Susan Love speak at the Inaugural Advocate Leadership Summit. For starters it was such a thrill and so exciting to see her after knowing that she went through intense treatment including chemotherapy and surgery for leukemia. I always feel so uplifted when she talks about breast cancer and opens our minds to see things with a fresh perspective. She raised some great points. I took my notes and I hope I am reflecting what she spoke about in the best way possible to help others read what she had to say.

She spoke about breast cancer today, and the damage of treatment and over diagnosis. She said with our goal of finding every tumor even those that are just DCIS and have not progressed to cancer, is like the TSA screening. We are in a climate of over treatment where we tend to slash, burn and poison. Then when we have recurrences we have done so much treatment that it could reduce the treatment’s effectiveness. She acknowledges that doctors roles are to find things. Yet 29% of cancers would not kill. Only 20 -30% will become invasive. We over treat and over test. We are in a climate of more is better. We use MRI, PET CT, and Markers. All of this equals finding reasons for treatment. So we do surgery, radiation, chemo, and hormone targeted therapy.

Yet we never think of not doing a treatment or subtracting from a treatment plan. We just throw everything we can at whatever we find. She talked about how the oncotype dx and/or the mammaprint test at least looks at whether all of this treatment is necessary. She says none of this is malicious on the doctor’s part. It’s just that no one is looking at the big picture.

For example, when patients are diagnosed, they are scared. So they listen to their doctors and do what they are told. But with all of this treatment thrown on all the over diagnostic testing and never subtracting from the treatment especially at an early stage comes in a climate of intense fear. No one is ever told about the terrible toll side effects will play on the patient from all of this slash and burn treatment. There is a huge amount of collateral damage.

Having come from doing chemotherapy herself she understands how much this type of treatment takes its toll. Side effects are always down played. No one talks about the effect of AI’s or lymphedema. At least the oncotype dx test and mammaprint test looks at whether treatments might work. It would help us to know before treatment, what all these side effects were, whether all of this treatment is necessary and if every case warranted and needed all of this treatment. Also is all this treatment going to be effective or will it just overtax the body and mind? Is anyone looking at the big picture? Can we try to predict if someone will get lymphedema before we rush to do surgery?

With radiation there is skin damage. Treatment causes muscles to atrophy. Do we make all women wear a protective sleeve on an airplane? Do we let patients know that when we take breast tissue away that there will be no sensation left in the breast? Do we tell ahead of all the pain from surgery?

There is pain from surgery. There is collateral damage from all treatment. There’s numbness, muscle atrophy, skin changes, and heart disease. With all of this systematic therapy all things have side effects. The fatigue and chemobrain lasts for years. There’s heart disease from chemotherapy. Anthracyclines can cause leukemia. These things have lasting side effects. Fertility problems, joint problems, fractures and second cancers…all of these things are real. Treatment is not a free lunch.

When someone is triple negative at the beginning they can do well, but statistics show that triple negative breast cancer tends to recur early on. Other cancers tend to recur later while the patients are far away from all of this intense treatment. This is where prevention makes the most sense. If we can prevent the problem in the first place and knew what the real bugs in the breast were at the beginning wouldn’t we be better off? If we understood the environment before the problems took place and we had a vaccine to prevent these problems and we really understood how to keep a normal breast before we rush to all this treatment, wouldn’t that be a better approach? If we really looked at immunology, anatomy, physiology and found new clues and new ways to study DCIS before we rushed to throw everything in the kitchen sink on it, would we need surgery for DCIS? Could 3D ultrasound help with DCIS?

Ductal carcinoma in sity (DCIS) (Photo credit: Wikipedia)

Instead of continuing to follow the things as they are, we at least owe it to ourselves to be asking these questions. Instead of rushing to treatment with DCIS would it be better to see carefully what was happening before we put a patient through these treatments that have collateral damage and side effects? Tamoxifen has a lot of side effects as well as AI’s.

At least by asking these questions and trying to prevent the problem with a vaccine we would be looking at everything we are doing and starting to come up with new ways of approaching the problem instead of just following the status quo of what we are doing. We need to do this so that we can avoid all of this collateral damage and also have these treatments available in case things progressed before someone has been so over treated that when they present with advanced disease all of this has been used and is no longer effective.

I also asked her whether by working on a vaccine to prevent breast cancer could we also apply using this for metastatic disease by injecting someone with a vaccine and being able to turn their disease around?  She very carefully admitted that this was not her expertise and that she had just finished treatments, but she did feel that there was nothing to prevent us from trying to make a vaccine that also tackled metastatic breast cancer. Whether or not this is feasible I do not know, but what I did appreciate was hearing her perspective after going through as much as she has been through, and I am so glad that she is part of the team of trying to find answers and look at new ways that we approach this terrible disease.

It’s so great to have her back with all of us, after her treatments. She is truly someone who I admire and knows so much about breast cancer and it’s amazing to see her post treatment with so much enthusiasm for getting back to work on all of these important issues revolved around breast cancer.

Dr. Susan Love, MD, MBA, FACS is a Clinical Professor of Surgery at the David Geffen School of Medicine at UCLA, and the President of the Dr. Susan Love Research Foundation. She leads the Love/Avon Army of Women, an initiative partnering of women (and men) who are willing to participate in breast cancer research with scientists who are conducting research on the prevention of breast cancer. She is the author of “Dr. Susan Love’s Breast Book,” which is in it’s 5th edition. Dr. Love is a founding member of NBCC and her foundation is represented on the Board of Directors of NBCC. She received her medical degree from SUNY Downstate Medical Center in New York and did her surgical training at Boston’s Beth Israel Hospital.

______________________________________________________________________________

After realizing that some people are not aware of the Oncotype DX test or the Mammaprint test, I went to their websites and here is the current information about the tests. Of course, always discuss this with your oncologist as this is only here to help those that don’t know the latest information about these tests that is available online.

According to the Oncotype DX website:

The Oncotype DX^® test is a diagnostic test that helps identify which women with early-stage, estrogen-receptor positive and lymph-node-negative breast cancer are more likely to benefit from adding chemotherapy to their hormonal treatment. This test also helps assess the likelihood that an individual woman’s breast cancer will return. The Oncotype DX test provides important information that you and your doctor may use when making decisions about treatment. Post-menopausal women recently diagnosed with node-positive, hormone-receptor-positive breast cancer may also be appropriate candidates for the Oncotype DX test.

According to the MammaPrint website:

To be eligible for the MammaPrint gene expression profile, a breast cancer patient should fulfill the following criteria:

• Breast Cancer Stage 1 or Stage 2
• Invasive carcinoma (infiltrating carcinoma)
• Tumor size <5.0 cm
• Lymph node negative
• Estrogen receptor positive (ER+) or Estrogen receptor negative (ER-)
• Women of all ages

My Life will Never Be Normal

I was reading Marie ‘s Weekly Round Up on her blog “Journeying Beyond Breast Cancer” as she quoted  Eileen’s blog,  where she writes, “If there’s anything I’ve learned in my process that will help another, I owe it to myself and others to share it on my blog.” There was an article written about me in the ASCO Post’s Patient’s Corner that I have been hesitant to tell people about because I felt a little exposed. Eileen and Marie helped me realize that I should share this article with everyone. The skills of the interviewer and writer, Jo Cavallo, really impressed me. I did the story with her because I wanted oncologists to benefit from my experience.

Ironically when all of social media was beginning to explode on the internet, I was afraid to use my real name because so many aspects of breast cancer are very personal.  Thanks to a dear friend that I met at a National Breast Cancer Coalition Advocacy Meeting in DC, I started my Twitter account as well as Facebook and my blog, and I ended up putting my name out there. I am grateful to her and many others for finally helping me to get this process started last May.

There are so many other bloggers who continue to inspire, empower and uplift me through their blogs. I am also thrilled by all the friendships I have made through social media. Thank you to all of you who give me so much encouragement with your feedback. Although the story below is about my breast cancer case, there are so many cases and people with experiences “Weaving through Breast Cancerland”. You can go directly to The Asco Post Patient’s Corner, My Life Will Never Be Normal, to read the story or read it below.

 

I thought I could go through breast cancer treatment, and afterward my life would return to the way it was before. That’s not what happened.

By Susan Zager, as told to Jo Cavallo
March 15, 2013, Volume 4, Issue 5

Despite my concerns, I’m happy to be alive and I try to live life to the fullest. I have become a patient advocate for breast cancer survivors and find great satisfaction in helping others become better educated about their disease and more proactive in their care.

—Susan Zager

After being diagnosed with stage II invasive ductal carcinoma in my right breast in 2004, I did an Internet search to learn more about my treatment options so I could be prepared when I met with my oncologist to discuss my treatment plan. I was especially interested in therapies that would be effective but allow me to salvage my hair. Despite my efforts, however, in addition to a lumpectomy, my oncologist was recommending the standard course of therapy for my type of cancer, including four cycles of a high-dose combination of doxorubicin and cyclophosphamide, followed by four cycles of paclitaxel, plus 35 days of radiation therapy over 7 weeks.

With this regimen, I knew my hair didn’t have a chance. What I didn’t expect to see was all my toenails floating to the top of the water one night while I was taking a bath. Although I didn’t feel any pain, the sight of my toes without nails and my head without hair made me truly sad.

I know that the point of all this treatment was to make me well, but I couldn’t help but feel that one by one, I was losing parts of my life that made me who I am. The cumulative side effects from my treatment, including fatigue, nonstop vomiting, weight loss, and “chemobrain” were overwhelming. And because I was so sick and weak from all the chemotherapy, I couldn’t take adjuvant tamoxifen therapy.

Problems of Reconstructive Surgery

I have wondered if skipping tamoxifen may have contributed to a local breast cancer recurrence a year-and-a-half later, but I have friends who are ER-positive and have had distant metastatic recurrences. I’ll never know for sure if tamoxifen would have made a difference, but the ensuing physical changes I’ve experienced since my recurrence guarantees that my body and my life will never be the same.

The new cancerous mass was small and confined to my right breast. I decided to have a bilateral mastectomy to avoid the possibility that I might develop cancer in my left breast as well. It had only been 15 months since I ended treatment, and I believed my body was determined to have more breast cancer. The bilateral mastectomy sparing the left nipple made the most sense with my set of circumstances. I have no regrets about that decision.

Since I had had radiation therapy and subsequent skin damage, there were problems using implants for my breast reconstruction. After several failed reconstruction attempts including a lateral flap, I found a fantastic plastic surgeon who was able to do various things surgically and give me a beautiful aesthetic result. Nevertheless, the reconstructed breasts are hard to the touch and do not feel natural.

Women contemplating a contralateral prophylactic mastectomy need to be aware that no matter how skilled the plastic surgeon, reconstructed breasts are not the same as natural breasts. They also need to know the complications that can arise as a result of radiation-related skin damage and be given advice on which type of reconstruction surgery has the best chance of success. I’m disappointed because my oncology surgeon never told me of the potential complications of using implants to reconstruct my breasts, even though I had asked if the type of surgery I chose made a difference.

Living My Best Life 

The cumulative effects from all the drugs and surgeries over the past 8 years have taken a toll. And a hip break due to osteoporosis, a late effect from my treatment, has added another scar to my already tattered body. However, I maintain a regular exercise routine and have worked hard to restore my strength. I am so happy that the chemobrain faded away, and I feel that my mind and memory are in top form again.

More than the physical effects of having breast cancer, I worry about the statistic showing that 30% of early-stage breast cancer survivors eventually develop distant recurrence and stage IV disease, especially because my best friend—who had chemotherapy for primary breast cancer at the same time as me—was in the 30% and died of metastatic breast cancer. I have many friends with metastatic breast cancer, and I am determined that they be helped.

While I am thrilled that I currently have no evidence of disease, I am concerned that those with metastatic breast cancer have sometimes been lost in the sea of pink survivors. I was prescribed tamoxifen after my cancer recurred 5 years ago (and have tolerated the drug), but I live with the knowledge that my cancer could eventually become metastatic.

Despite my concerns, I’m happy to be alive and I try to live life to the fullest. I have become a patient advocate for breast cancer survivors and find great satisfaction in helping others become better educated about their disease and more proactive in their care. I have been to two major Breast Cancer Symposiums and the San Antonio Breast Cancer Symposium, among other professional meetings. I am delighted that the oncology community is interested in patient advocates’ insights, recognizing how educated patient advocates can be and how much we have to offer.

While I keep vigilant for any new signs of health problems, I never forget to take pleasure in the ordinariness of every day. ■

Susan Zager is the founder of Advocates for Breast Cancer and lives in Los Angeles, California.

Survival – A Widow’s Journal

In Survival, A Widow’s Journal, Muriel Kagan Zager describes her experiences following the loss of her husband, Victor, after 56 years of marriage. Her reactions to her new status and the unexpected reactions of others to her situation provide an insight into what new realities she faced.  She discovered that some people she thought would be there for her were not; and some she little knew became life-lines for her.

Psychologists and therapists in the field have praised the work; many feeling that it should be used as a text for students learning about mourning. Widows and others going through the loss of a loved one have been helped through Muriel Kagan Zager’s journey.

I am so proud of my mother who wrote Survival, A Widow’s Journal. She is a journalist who specializes as a correspondent in the Middle East and an accomplished author. She has published four novels and she just published her fifth book call Survival – A Widow’s Journal. The book is based on a true story about my father who died of pancreatic cancer on June 6, 2008. I think that anyone who has lost a loved one to cancer or any other reason will really be helped by her book. Many of you will also will enjoy reading it because  she tells her story with wonderful grace. She’s a fantastic writer.

My mom let my sister and I read it before it was published and I also have read different parts of it again throughout this week. The book just came out a week ago. I want to tell you a little about my father, Victor, and his experience with cancer. He had kidney cancer aka renal cell cancer 15 years before he died of pancreatic cancer. The kidney cancer was caught early enough and they were able to take the damaged kidney from the cancer out surgically, and he required no further treatment besides the usual follow ups.

In early 2008 he was more tired than usual and his regular MD thought he had sinus infections and kept giving him antibiotics. He traveled with my mom for business and pleasure all over the world. Ten days before his diagnosis he felt horrible and his stomach got very bloated. He spent Memorial Day weekend at home in terrible pain and would not let my mom take him to the hospital. He didn’t want to bother his MD.

Finally when the holiday was over he had an MRI and it was discovered that he had metastatic cancer all over his body. If you read my mom’s book there is much more detail about what happened. We managed to get him on a medical plane to Nashville where most of the family including his grandchildren were able to see him at the hospital the last five days of his life. We later determined that he had pancreatic cancer.

I was happy that my dad lived out his last six months not knowing how sick he was and able to just enjoy his life. We had wonderful moments during his life as well as while he was in the hospital.

My father was an amazing man.  I am so grateful for the time I had with him and I am so lucky that I have grown up with such special parents and siblings, and my mom continues to bring me joy every day!

I urge all of you to check out my moms book. Below is a great review written by someone very special to my mom and me.

“What does it take to face the death of your husband of 50 years?  Can you be strong enough to survive and re-enter the world?  Muriel Kagan Zager has written the most honest and passionate love story in “SURVIVAL, A Widow’s Journal.”  As you hear the pulse of Muriel’s heart in every honest sentence, you will also feel the agony, the loneliness and the finality of the death of Victor, her spouse.  There is no smoothing over the misery, the heartbreak and the predestination of “who will live and who will die,” and when.  There are many books written about the wonder of life, but this is a passionate story about love, loneliness and survival.  “SURVIVAL” is worth reading for anyone who has faced a future of uncertainty.”

To Order the book and peak inside click here to go to amazon.com.

World Cancer Day

Today is World Cancer Day. Go to their website and take a peak.You can sign for a cancer free world as well as learn myths and truths about cancer. Click on: http://www.worldcancerday.org/wcd-home

Happy New Year – Flying Home

I am sitting on a plane with wifi and reading other breast cancer blogs which I did during a wonderful holiday with my family. They have me thinking a lot. My need to write today has to do with the fact that as I take this flight home I am flooded with memories and feelings of my past flights going back to California when I was living closer to my family on the southeast coast. I flew many times on this flight to California running to my friends especially my very close friend Li who went through chemo with me and had stage IV MBC , while on the east coast my brother was going through stage IV esophageal cancer. His health climbed faster downhill then my friend because of the stage at which he discovered his cancer.

I have been so happy working away at being a patient advocate and doing everything I can to make a difference and I am reading different things and all I can say is this may sound crazy but for me it was so much easier being the patient in jeopardy going through my primary chemo at an earlier stage than having to watch my brother and best friend go down their line of chemo drugs and disease progression. I ask myself over and over why it wasn’t me and why it was them as I stood by and they let me in fearlessly clinging to the joy they could find in life and wanting to have as much quality of time in life with them.

After I had breast cancer twice in California I decided to move closer to be with my family, because I just was drained from all the constant treatment and I missed my family. Little did I know seven months later my father would find out that he had pancreatic cancer and luckily I had moved close to the family and was able to be with him, since he died 10 days from finding out his diagnosis. I think in some ways he was better off not knowing that he was so sick until the end.

Being with my brother and my best friend as they went down their line of drugs was just as special, yet at the same time I have so much guilt that it wasn’t me. I luckily rented a room in California so I could fly back and forth and keep my medical Doctors in California.

After my brother died I moved back to California as everything shifted and luckily I had been at the right place …at the right time…while my friend got close to the end. I am on another flight knowing this cycle will not stop. A very close friend has Stage III – IV lung cancer and is such an inspiration. I have a few more friends who are going through Stage IV breast cancer. I have stepped in cancerland and there is no turning back. I am not Stage IV and for that I should be grateful and (don’t get me wrong) I am but it’s hitting me as I return to my home. I am saddened by the sheer loss of things around me.

At the same time, I refuse to keep complaining and continue forward with all of my advocacy work to make a difference…It’s just that I am in a moment where I feel like that rat on the ferris wheel as more people get bad news. Yet my father, my brother and my best friend all gracefully lived in the moment as much as they could to hold on to joyous days of life while they knew they were going to be taken away from their disease. I asked my brother if he was scared and he said he wasn’t….Life…death…he just accepted to his fate and made the most of what he had. I asked my best friend and she said she wasn’t scared either. To her she was looking forward to seeing people when she died.

With these things happening around me I can’t help asking myself why them? At the same time I refuse to push myself in to the dreaded corner of anger and resentment at fate and get a grip knowing I must be smart enough to make the most of whatever time I have. In the back of my mind one of the bloggers was angry because they are stage IV and they were sick of hearing they should live in the moment. I think the reason she was angry is the word “SHOULD”. Instead we all COULD try to live in the moment.  If we don’t and we can’t make the most of out time while we are here, then why bother fighting to live. This is it. Take it or leave it. I have to try to make the most of my moments no matter how little control I have over what Stage of disease or peril I or my closest friends are in. At the same time, I am not trying to pat myself on the back as much as be grateful I have the ability to make a difference and while I believe I have NED (no evidence of disease) make the best of it. My father made the best of his life and had no idea how sick he was. I think he was better off not knowing until the end.

It’s not the analogy of “I could get hit by a bus” at any time before my friends who are in Stage IV cancerland know the bus is coming as much as why waste time getting so upset that I bring a harsher depression on myself as I have enough of that from all the hormones that have been stripped from me to theoretically keep me NED. The truth of the matter is I can wallow in anger and resentment or forge ahead with optimism and lack of fear for what is happening inside my body and live my best life. That is truly the only way I can make sense of all that is surrounding me.

Honestly I am proud of how I talked myself out of wallowing in self pity as I return to California after a wonderful holiday with my family. I am also thrilled that I have this wonderful machine and social media to help make the most of this flight as I plan to return to all the enormous tasks I have facing me and get back to my routine while I know there is so much work ahead of me to make a difference in Breast Cancer Land. And whether you are healthy, having health issues, in cancerland, affected by cancerland or just reading this because you care about me and what I have to say…thank you for letting me use this platform to express what is happening around me.

Meanwhile it’s a new year. Make the most of it, love yourself and try to enjoy everything around you no matter where your body or mind is at. This also includes what your loved ones are going through. That is the only way all of us can live our best lives and appreciate so much of what we have.