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

SABCS-2013It 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.

ChemoBrain1As 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.

blog_iconIf 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.

28627_119149311460178_7118937_aI 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!

IMG_5698Today, 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.

IMG_5667 - Version 2It 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.

shutterstock_27416451I 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,

Is-Chrysin-A-Good-Natural-Aromatase-InhibitorIn 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.

IMG_5670I 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.

congressimagesI 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.

IMG_5630I 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.

545527_494545153891973_631458727_aAs 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.

Hope from the NBCC Deadline 2020 Advocate Summit and Lobby Day

As I returned home from the NBCC (National Breast Cancer Coalition) Advocates Summit and Lobby Day to end Breast Cancer Deadline 2020, I was really happy I went. I have to admit I had so many reservations going. I labored over my decision. I thought I was going to fly home with “Frustration – Part Two.” There’s been a lot of people angry with the NBCC because of issues about putting MBC (Metastatic Breast Cancer) under the bus literally. My fearless friends have real reasons to be upset. Here is an organization that has educated so many women who have had to hear the words “You or a loved one has breast cancer.” They have an incredible program called Project LEAD which is an intensive six-day course teaching the science and very important advocate issues about breast cancer.

MusaSmI have learned a great deal from Project LEAD, LEADcasts, summits and attending Breast Cancer Symposiums that stemmed from first learning with the NBCC about breast cancer. Great scientists, researchers, doctors and leaders of breast cancer advocacy taught me the grim statistics that now in the US alone 108 women die a day of MBC (metastatic breast cancer). That’s one woman every 14 minutes. There are also men but the stats are less. In 1975 there were 112 deaths a day in the US from MBC. It’s 2013. Four less deaths a day is not much progress when it comes to death rates.

So here was my dilemma. The NBCC who taught us about the death rates has a campaign to end breast cancer in 2020. So what happens to the metastatic patient while they figure out how to get a vaccine to end breast cancer?

There has been a lot of differences of opinion within the breast cancer community and understandably so. If you are only preventing breast cancer and preventing metastatic breast cancer what of the person diagnosed as metastatic. The very people they say they are helping…Are they really helping them?

I went to symposium expecting to come home finished with them. But my mind was open. I saw that Musa Meyer was going to the conference. She is the head of the advanced metastatic breast cancer organization. She is committed to the advanced breast cancer community and through her website http://www.advancedbc.org and the BCMets,org online community Musa focuses daily with BCMETS.org by helping women with MBC and their families understand treatment options and emerging research.abc

There was also an impressive line up of speakers. Dr Dennis Slamon gave a great talk. He is best known for being instrumental in the identification of the Her2/neu oncogene and the resulting treatment of tratusunab (Herceptin) which has been hailed as the first triumph in an emerging wave of targeted therapies. Some other speakers included Dr. Susan Love, Dr. Michael Baum, Dr. Peter Lee, and Dr. Barrett Kramer to name a few. In my next post I will be writing more about what some of these speakers spoke about.susan-love-cancer-20130213-001

Shirley Mertz of the MBCN (Metastatic Breast Cancer Network) was also at the conference. If leading metastatic breast cancer patients and their organizations were getting behind the deadline, and I have always supported the NBCC, I owed it to myself and Advocates for Breast Cancer to attend and make up my mind.

The most moving plenary session I attended was called “Effectively Targeting Metastasis in Breast Cancer.” First Shirley Mertz spoke to us, endorsing Deadline 2020. She talked about the differences between early stage breast cancer patients and MBC. 80-90% of all breast cancer patients start at early stage breast cancer. Early stage can be anything from DCIS (ductal carcinoma in situ) which is pre-cancer and a little more complicated but for this post I will leave the explanation as that. Early stage cancer can also be cancer that is contained in the breast where someone might only need a lumpectomy or a mastectomy and/or radiation depending on the size of the tumor and whether there is lymph node involvement. Otherwise another early stage breast cancer is when the cancer travels to the lymph nodes and the patient could have a lumpectomy, chemotherapy and/or radiation and/or a mastectomy but the most important thing to understand about early stage is that one is told they have a 70% chance of survival and many do whatever treatments that are recommended or they feel will work and after treatment some prescribed medications depending on their pathology. Some also choose alternative therapies. For most early stage patients, when they “finish primary treatment”  and are told they have NED (No Evidence of Disease) they can have the chance of knowing they may be “cured.” Then they are told they have a 30% chance of a metastatic recurrence that can happen at any time, but at least there is an end point to the treatment. Of course there are many side effects and I am oversimplifying “treatment” as an end point but I am trying to show the differences between early stage breast cancer and MBC. MBC is chronic and so far there is no known “cure”.

IMG_5124Shirley explained about how she goes for chemotherapy infusions and where she goes there are early stage patients getting chemo and when they get their last treatment they have a special bell and everyone celebrates their end point of chemotherapy treatment. When one has metastatic breast cancer there is no end point to treatment so Shirley remembers the joy of knowing there was an end point but unfortunately for the MBC patient this will never happen. There are also people with inflammatory breast cancer which is an unbelievably aggressive form of breast cancer that many do not survive. Again for simplicity I am just trying to show the many differences that exist in breast cancer diagnosis and treatment options.

After Shirley Mertz, Suzanne Faqua PHD continued talking with us about the science involved and critical issues in metastasis research. Suzanne is a professor in the Lester and Sue Smith Breast Center at the Baylor College of Medicine. She specializes in metastatic research especially working with hormone positive MBC.

She explained the way current science recognizes the need to study not only the primary tumor but looking at the similarities and differences of the heterogeneity of a metastatic tumor. As we look at the critical issues in metastatic research our approach is important. For optimal targeted therapy we must identify key pathways (key drivers), block the pathway completely, anticipate escape mechanisms and block them too, and explore combination therapy. She talked about studies related to PIK3CA status in blood, liquid biopsies, circulating tumor cells and how we must do targeted therapies in human trials. Her talk had some of the complicated science involved with tumor dormancy, including the fact that there aren’t current dormancy-cell killing drugs in clinical trials. This needs to change.

Some of her personal perspective of the critical issues in metastasis research includes the need for us to get the pace moving. We have to change the dogma that “The horse is out of the barn” so we can prevent metastasis. There is a lack of clear “drivers” to target. Suzanne also spoke about how important it is to now understand the metastatic tumors and be able to collect tissue samples from biopsies of metastatic tumors and analyze them. Apparently there is a problem within the research community where the researchers want to study the tissue samples from metastatic tumors and how there is difficulty getting theses samples. The woman sitting next to me said she gave her samples and is disappointed that researchers aren’t getting their samples. Another problem is funding. Negative funding will slow and halt progress. That’s why Lobby Day was so important and we also need to keep the program at the DOD (Department of Defense) going so we continue vital research especially when it comes to metastasis.

The NBCC is going to have a special meeting in June with scientists, doctors and metastatic breast cancer patient advocates to study metastatic breast cancer and tumor dormancy. The science is complicated. But someone explained to me that the basics are if the scientists can take the metastatic patients and get their metastatic tumors to go back to sleep and not spread any further, they can go on to live with the disease for many years. The best way I can understand and explain it is that with AIDS they have not found “the cure” but they have found medications that allow people to continue to live with AIDS and they can live for a very long time.

This information is very important to me. I know I have written about the death of my best friend from MBC who survived and thrived through primary chemo with me and lived as long as she could with triple negative MBC. I have so many friends with metastatic breast cancer now, and met some really special new friends at the conference and I have written about how upset I am that they need to have more money dedicated to metastatic research.

One of the difficult things in the breast cancer world is that different organizations have different agendas. Sometimes there are clashes. I am someone who wants everyone to work together. I believe in teamwork. It is the spirit of teamwork that helps me understand the mistakes of the past with breast cancer and pink culture yet try to move forward with my advocacy.

This is what I gained from the people who are committed to deadline 2020. Advocates are working in every way they can to see an end to this disease so that we don’t have to have our sons and daughters hear the words “you or a loved one has breast cancer.”pink_425x320

I understand that some people are moving on from the NBCC and others like me and many of my new friends that I met in DC are supporting the NBCC. For those that don’t want to support them, please know I understand your point of view and I am not going to tell anyone they have to feel the same as I do. This was my experience at the conference. This is what I went away feeling that I am doing what I believe is right for myself and my organization. I am passionate about my advocacy and making a difference with breast cancer and nothing will change that. I hope that one day this horrible disease can be contained and women can go on to live happy productive lives with the most quality of life that they can as result of the scars that come with this disease.

I respect that others see some of what the NBCC is doing with a different lens. When it comes to our passion and intentions, we are all on the same side. What is most important is that we respect each other and work towards ending this disease in every form while we continue to place much emphasis on metastatic research.

Setting a deadline is always a good idea to set goals and try to reach them. Had we never set a goal to get a man on the moon we never would have footage of Neil Armstrong stepping on the moon and saying thDepartment_of_Defense[1]e famous words, “One small step for a man, one giant leap for mankind.”

Lobby Day was also important to get bipartisan agreement and congressional representatives to sign “The Accelerating the End of Breast Cancer Act”, H.R. 1830, and that we continued to get the funding support for the Peer-Reviewed Department of Defense Breast Cancer Research Program (BCRP).

I also met some amazing new fearless friends many who currently are metastatic and have such interesting stories. As we all know it is our unique stories that move us to understand more about this horrible disease and fuels us to do whatever we can to help one another in this land of cancer.

I am so glad I went to DC and came back with all of this hope as well as meeting great new friends. The Summit was so much at once and my only criticism is that they packed in so much that we didn’t even have a break during meals because there were speeches and meetings during the whole time. Even though it was exhausting, the Summit was really worth it. Hope is a great thing to have in our lives.

While Flying – Frustration surrounds Me

For starters I was on a flight for a happy family event. The day started great. I got a lot of work done on our official Advocates for Breast Cancer website. I got to the airport at the right time even though LAX was so crowded because there’s a problem with the TSA and there’s long lines and less TSA agents to help move the lines faster.

airplaneI was a little mad at myself because I was lazy and went through the machine that I have been told by a radiation oncologist (whom I have great respect for) I should probably skip and not expose myself to the radiation. It just seemed faster. I started in an airport lounge with my computer figuring I’d work a little more on my Breast Cancer News at: http://www.scoop.it/t/breast-cancer-news and my Breast Cancer Advocacy stories at: http://www.scoop.it/t/breast-cancer-advocay. Sounds simple enough.

I searched the internet for abstracts and news stories about breast cancer and found what I hoped would make a difference with advocacy for breast cancer (and other cancers). I even discovered I spelled advocacy wrong today. Certainly I’m human and can make a spelling mistake. I sent out all of my good wishes to my fearless friends and organizations on Twitter trying to make pretty graphics while I sent energy to all of these incredible people who I have met either personally or through social media. So it seemed like it was time to get ready to enjoy a special family weekend.

#BCSMmagesI plugged my computer in and I saw a note from AnneMarie to look at Jody’s blog. I already suspected it’s bad news. Jody Schroger is one of our great moderators every Monday night at 6pm PST for #BCSM (breast cancer social media). It’s very bad. After years of NED (no evidence of disease), Jody has joined the 30% of breast cancer thrivers that has metastatic breast cancer (MBC).

And Jody. Why? She is a fantastic person who runs our #bcsm (breast cancer social media community) meetings with Alicia Stales and Dr. Deanna Attai. Why her? Welcome to the world of breast cancer. It’s all bad luck. Whoever gets Stage IV it has nothing to do with them not taking care of themselves or what stage they started with the disease.

I keep thinking everyone knows that I have talked about the statistic that about 30% of early stage breast cancer patients will go on to become metastatic. That’s Stage IV. Early stage breast cancer is what I had when I did chemo, radiation, and had a recurrence a year and half later. Stage IV means that the breast cancer has managed to travel from the breast to other body parts. With breast cancer it’s usually the bones, brains, liver, or lungs. Stage IV is a chronic disease. It is not curable, but can be contained. It depends on many factors how long it can be “contained”. Usually certain pathologies help because there are more targeted therapies that can work on keeping the cancer at bay. For those that don’t understand Stage IV breast cancer is breast cancer that has traveled to another body part. Let’s say it goes to the bones. It’s not bone cancer but still breast cancer that has metastasized to another body part.

MBC_Infographic_01_v14I am angry. This disease is like dominoes. This disease is so cruel. I watch as friends that I care about get the bad news. The reason I did the chemo-hoping no bad cells could hide from all the nasty toxic chemo that I did because my breast cancer made it in to my lymph nodes giving it a chance to enter my blood stream. We never know if some cells hid out and they are just waiting to say- GOT YA.

OK here’s the Stage IV lesson. They have drug regimens that patients go through that can keep the cancer at bay for some time and then the cancer finds a way to outsmart the therapy. So the MBC patient moves on to the next drug. The trick is to try to find regimens with quality of life for as long as you can until the cancer outsmarts the drug. Then it’s time for nerve-racking scans to see if the drug is working. If the medications are working it’s great. The patient stays the course. Eventually though comes the scan that shows the cancer is growing and trying to get to more body parts. Many MBC patients can live a very long time especially with certain pathologies that lend itself to drug therapies that can help contain the disease. Today’s MBC patient can even have a chance of seeing NED (no evidence of disease). But the cancer still comes back and outsmarts the treatment. I respect everyone who has metastatic disease because they have to live knowing they are on a slope that eventually their disease will no longer respond to the drugs we have available today.

At the same time I want to be clear that today’s MBC patient is quite alive and can have a long quality of life.

At the beginning when diagnosed there is so much shock to the body and mind. I have watched my best friend Li Bailey go through the process quicker than others because unfortunately (bad luck) she had a pathology that today we have less medications to fight it with.

This is just not fair.

think-before-you-pink-1024x574So why am I so frustrated? I am running a non-profit that aligns itself with breast cancer organizations that are working to help breast cancer patients. After learning that Komen’s  junk campaigns were based on lies like telling women if they got mammograms they had a 98% chance of beating breast cancer. This is so not true. Komen also raised the most money of any breast cancer organizations. There was a great article in the New York Times, written by journalist Peggey Orestein that I scooped today called “Our Feel-Good War on Breast Cancer,” I published the article in my last blog. Meanwhile Katherine O’Brien of the Secretary of the MBCN (Metastatic Breast Cancer Network) wrote a great summary, overview and response to the article called Our Feel-Good War on Breast Cancer: MBCN Responds. In her response to Komen’s use of funds towards metastatic research, she writes, According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.”

pinkcultureThere has been a a lot of backlash against Komen and as some of you understand the overselling of pink culture I don’t have to explain the issue. I hope that you had time to read these articles. They are so well written.

I think there is another problem with Komen. I think the biggest backlash against them is that they became arrogant. People called them out for having pink parades that did not include the metastatic community because they didn’t want sick people marching in their parades, since it didn’t give you that warm fuzzy feeling of survivors raising their pink pom poms because they survived the disease. Komen thumbed their nose at the metastatic community.

I have to fight for the mets community. I can’t help it. People are dying around me. I don’t like that. People are doing all sorts of difficult medical regimens to stay alive. I have to open my big mouth and do all I can.

I promise you I won’t stop until MBC is a disease that can be reversed or people can live with Quality of life. I will continue to see that we don’t continue having corporations making known toxins that cause breast cancer.

One positive thing that happened is when the #BCSM Community group met we all rallied around Jody. Ironically I was flying back from the weekend on Monday night and joined the meeting on a flight that had wifi. At first I was confused if the timing would work. Then I realized as long as I started the meeting at the right time, the hour would be the same no matter if I flew in to a different time zone. So many of us were frustrated, angry and wanted Jody to know we have her back. This community means so much to me and I am grateful that at least we can come together during the good and bad times.

I have a lot more to say about all of this. For now I am going to publish this first part and continue talking about some other things that have added to my frustration. Stay tuned.

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.

 

My Life Will Never Be Normal

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.

The Public needs to know the truth about Breast Cancer

I was preparing my breast cancer newspaper at www.scoop.it/t/breasr-cancer-news, and I came across this news story below about a Komen function to raise breast cancer awareness in Bristol, Tennessee and Bristol, Virginia. I started thinking, “do I really want to put this in my newspaper?’ Don’t you think by now the public is AWARE that there is a disease called breast cancer? What’s wrong with this picture?

The article makes no mention of how many women are living with MBC (metastatic breast cancer). It mentions that there are 40,000 deaths in the USA every year but goes on to say, “The more we can make this fight [public], the more it helps our work to make this community more aware and healthy.” The problem is the public knows about the pink ribbon and breast cancer, but they don’t know that in the USA 1 woman dies of breast cancer every 14 minutes. Painting the town pink does nothing to stop theses deaths from MBC. These are not just statistics. These are daughters, mothers, friends, wives, best friends and I could go on and on.

The public needs to know that breast cancer is not just another pretty pink disease. We need to find a vaccine and end metastatic breast cancer once and for all. Approximately 30% of women (and some men) who get breast cancer will die of breast cancer. In 1991, 119 women in the US died a day of breast cancer. It’s 21 years later and 109 women in the US die of breast cancer every day. When it comes to death rates we haven’t made much progress.

The article mentions Curt Rose, board president for Susan G. Komen for the Cure’s Tri-Cities office stating,” the event could play an invaluable role in helping raise breast cancer awareness and the value of early detection among young women.” I thought the Susan G. Komen organization was going to stop misleading the public about early detection.

In another article calling Susan G. Komen in to question, Dr. Lisa M. Schwartz and Dr. Steve Woloshin, both professors of medicine at the Geisel School of Medicine at Dartmouth in Hanover, N.H., wrote. “Women need much more than marketing slogans about screening: they need – and deserve – the facts,” concluded the authors. “The Komen advertisement campaigns fail to provide the facts. This kind of behavior is not very charitable.”

The public doesn’t know about all the women living with metastatic breast cancer (MBC) and what they go through until they die from breast cancer. Thankfully, I know some incredibly fearless friends that have MBC and are trying to live their lives while they have a chronic disease, as they go through a variety of treatment regimens, hoping that a regimen will hold the metastatic sites at bay instead of finding out the disease has progressed. Its agony to wait for test results to know if a regimen is working, while trying to keep a positive outlook.

I am upset because the women with METS from breast cancer have been lost in this sea of pink. We also don’t know why some breast cancers metastasize and some don’t. Sometimes the pathology can make things more difficult as well as if someone has the BRCA1 or BRCA2 gene mutation, but other times it just happens that some cells hide away during primary treatment or the breast cancer is found when it has already metastasized. These cancerous cells usually travel to the brain, bones, liver or lungs.

There are so many other bloggers, breast cancer patients, and breast cancer advocates that understand the way the press and the organization of Susan G. Komen has missed the facts and figures as well as the lack of fairness to those women and men who have MBC.

Laura Wells who has MBC expressed the problem so well in her blog “Beyond Pink” by writing, “I understand the need for this cheerfulness, and these stories of survivorship.  I know how important, how necessary it is to be told that, especially in your case, there is hope for a cure. But, I am beyond that definition of hope.  My hope is for clean scans, and new treatments that work so well, I am still alive to attend my daughters’ weddings and meet my grandchildren. I hope to put off as long as possible, leaving behind a husband, who is grieving the loss of his wife.

My breast cancer is no longer just pink.  It now, includes gray, the color of nothing – the nowhere land where I live, no longer a survivor, but a fighter, never giving in, never giving up.  And, black, the color of death, for surely, one day, my fight will end. And the problem with “pink” is simply that, with all the awareness it generates, no one is aware of stage IV cancer, the cancer that kills.  And no one is prepared to join this club, which is beyond pink, because it will not be spoken of, for yet another year.”

The public needs to know that breast cancer treatment is extremely difficult. Breast cancer patients do not get lovely new boobies when they must have a mastectomy. When women lose their breast tissue their breasts are literally sliced open to make sure they get as much tissue as possible and there are big scars. When I went through my primary treatment for breast cancer, I thought I would just go through treatment and return to my normal life. I know so many other fearless friends that had the same experience as me. Our lives were forever changed. As Susan Love has said many times “Breast cancer treatment involves a slash and burn mentality”. We need to make some real progress in ending these horrible deaths and ending the disease itself.  The National Breast Cancer Coalition (NBCC)  has set a deadline to end breast cancer in 2020. For more information on this deadline and what the NBCC is doing go to http://www.breastcancerdeadline2020.org.

We have to do more to educate the public about breast cancer and make a change in how MBC is understood. For starters we need to change the conversation about those going through primary and metastatic breast cancer treatment. There are so many things that need improvement to those with MBC and there is a lot of work ahead. You can sign the petition telling the  Susan G. Komen for the Cure organization to increase funds for scientific research and increase transparency. You can also sign the petition from the NBCC at http://www.breastcancerdeadline2020.org/homepage.html, to whoever is elected the president that would create a resolution to end breast cancer in 2020.

I also think that it is important that we don’t start having “pink wars” just because the public has been misled about breast cancer.  We can all learn from the mistakes of the past and try to move ahead, especially as we enter the “breast awareness month of October.” Our goal is to have the press and the public see the truth about breast cancer, so that we truly can make progress and end this disease once and for all. If we continue to do business as usual we will end up with 800,00 deaths a year worldwide in 2030.

Also, all the survivors that don’t have METS like myself don’t know if we will be part of the 30% that will end up with MBC and have to die because we have only made drugs that can add time to survival before our death. I have attended many symposiums with famous oncologists presenting abstracts about chemo drugs that extend life for a short period of time. For example the drug halaven for MBC patients has a progression free survival (PFS) rate of 2 3/8 months. When these types of chemotherapy trials are presented at famous oncology conferences in reference to the PFS of the drug everyone claps, but a few more months of life is not much progress. On top of that the cost and research as well as trials involved to get FDA approval for these drugs are very expensive and a long process. At the same time, when my fearless friend Li Bailey was dying and she went on halaven I was grateful for the extra 2 3/8 months of her life. Yet I know, we need to find a way to stop METS before it starts and reverse METS when it moves to other parts of the body.

We owe the people going through treatment, especially those with MBC to do everything in our power to help give them quality of life. I remember when my fearless friend Li Bailey’s disease was clearly progressing rapidly, we decided we would try to enjoy her quality of life, not quantity. We can keep feeling angry, but it is better to hope that we will end breast cancer in 2020. As we work towards these goals while the public sees the truth about breast cancer, we can find comfort in the fact that all of our hard work can make a difference, and together we can finally see an end to this horrible disease.

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Bristol‘s month-long observation of fight against breast cancer

Pink 3

ANDRE TEAGUE/BRISTOL HERALD COURIER – Sue Lindenbusch, vice president of Oncology for Wellmont Health System, talks Thursday about promoting breast cancer awareness and education during the month of October in historic downtown Bristol.

By: Roger Brown | Bristol Herald Courier
Published: September 14, 2012
Updated: September 14, 2012 – 9:39 AM
BRISTOL –Bright pink and hot music will be out in full force across the Twin City in October to mark Breast Cancer Awareness Month, local officials announced Thursday.“Whenever you get to the month of October, you [instantly] think of pink and Breast Cancer Month,” Sue Lindenbusch, Wellmont Health System’s vice president of oncology, said during a Bristol Chamber of Commerce news conference to promote “Real Women Pick Pink” – the city’s month-long observation of the fight against breast cancer.“We all have the same passion about getting the word out about breast cancer,” Lindenbusch said. “The more we can make this fight [public], the more it helps our work to make this community more aware and healthy.”Nearly 40,000 American women died of breast cancer last year, according to http://www.breastcancer.org, which also notes that breast cancer and skin cancer are the most commonly diagnosed cancers among females in the U.S. Through 2011, there were more than 2.6 million breast cancer survivors in this country.A major component of the observation will involve Bristol’s iconic welcome sign downtown. More than 1,000 pink light bulbs will be inserted over a three-day period – beginning Sept. 27 – and the transformed sign will be illuminated during an Oct. 1 evening ceremony at the Bristol Train Station. The lights will stay in place throughout October.“It’s going to serve as a beacon to raise awareness about breast cancer,” said Matt Bolas, executive director of the Bristol Convention & Visitors Bureau, regarding plans to give the sign a pink hue.Also, several national and local female musicians will take part in an Oct. 20 “Real Women Pick Pink” concert festival at various indoor and outdoor venues on State Street.Curt Rose, board president for Susan G. Komen for the Cure’s Tri-Cities office, said the event could play an invaluable role in helping raise breast cancer awareness and the value of early detection among young women.“It’s going to allow us to reach a whole new segment of people who might not otherwise [think about] breast cancer,” Rose said.rbrown@bristolnews.com
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