“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.

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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.

Breast Cancer and the Environment

Yesterday I put an article in my Breast Cancer Newspaper about a federal committee of leading breast cancer experts that released a report about reducing our exposures to chemicals and radiation in our environment. Today I received an email from Jeanne Rizzo, R.N.
President and CEO of the Breast Cancer Fund stating that she is serves as a co-chair with the federal committee.

The report, “Breast Cancer and the Environment: Prioritizing Prevention,” concludes that “preventing environmental exposures is the most promising path to decrease incidence of the disease, and calls for a national breast cancer prevention strategy.”

The report’s first stop is the desk of U.S. Secretary of Health and Human Services Kathleen Sebelius, who must create an action plan to implement the report. This action plan can lay the groundwork for a national prevention strategy that will require commitment and hard work from the Obama administration and Congress.”

Write to Secretary Sebelius today to urge her to immediately create an action plan.
Let her know that it’s time for our nation to embrace the notion that we can and must prevent breast cancer.

(To learn more about the report and download the full report go to: http://www.niehs.nih.gov/about/boards/ibcercc/.)

Together, we have built a mighty movement, and because of you, we’re on the edge of a sea change. To write to Secretary Sebelius, just follow this link from the Breast Cancer Fund. All you have to do is put in your information and the letter is written for you, unless you want to add or change something.

Help us expose and eliminate the environmental causes of breast cancer.

Together we can stop this disease before it starts.

Interview of Susan Zager by Irinia Wardas – Oct. 3, 2012

Image via CrunchBase

Please press play to listen to my radio interview by Irinia Wardas where I talk about breast cancer & my work with Advocates 4 Breast Cancer.

Listen tointernet radio with NaturalCounselor on Blog Talk Radio

Please Join the Dr Susan Love Research Foundation and the City of Hope in the How Study

What is the Health of Women (HOW) Study?

The majority of women who get breast cancer have none of the known clinical risk factors. This means we don’t know what causes breast cancer or how to prevent it. The HOW Study is a first-of-its-kind international online study for women and men with and without a history of breast cancer.  We will collect information about your health, your job, your diet, and your family history, among other topics that can help us get a better understanding of breast cancer and its potential causes.  Periodically, we will send you questionnaires about anything and everything. All you have to do is fill them out online. It’s that simple. This is a partnership and we need you for the long haul. The more questionnaires you fill out, the more information we will have that can help us have a better understanding of why women get breast cancer.

Who is HOW?

HOW is all about you and what you can do to end breast cancer. HOW is also about the researchers who can use this data to have a better understanding of ways we can prevent breast cancer. HOW is all of us, working together, to bring an end to this disease. The HOW Study is being conducted at the Dr. Susan Love Research Foundation, in collaboration with City of Hope Comprehensive Cancer Center.

Go to: https://www.healthofwomenstudy.org/Default.aspx

My Fearless Friend Li Bailey

I first met Li in February 2005 at a conference table with a great breast cancer support group. The group was for early stage breast cancer and everyone in the group that day were all in the middle of chemotherapy while I was about to start my first round of adriamiacin and cytoxin. I had to do chemo because they found the cancer in my first lymph node. I had no problem undergoing a surgical lumpectomy, sentinel node biopsy, or axillary dissection, but when I heard I needed to do chemotherapy and I would lose my hair, I knew I needed some help.

It was ironic that in November my hair stylist of several years chopped my hair very short when I asked her for a little trim. I was furious that my long hair was gone, so I went and got hair extensions until my hair grew longer again. I told the group I had extensions and Li picked up immediately that I was not going to do well losing my hair.

The next time I saw Li was in my oncologist’s office when I was about to leave.  As I looked up from my papers she came out into the waiting room. I saw her and immediately gave her a huge hug and realized she went to the same office with a different oncologist.

Since she was alone I asked her how she was getting home and she said she was going to call a cab. Li lived in Santa Monica near the oncology office and managed to get around by bus, friend’s rides or taxis. I offered her a ride in my car parked far away. As we walked she was getting out of breath, because her red cells were very low from the chemo, but I kept telling her we were close to the car.

We started calling each other and found that we had a lot in common. I had a graphics arts background with a degree in architecture and she had worked as a designer at the Smithsonian. She left her job taking a very early pension and after seeing the Pentagon in flames from her apartment window on 911. She moved back to California where she and her ex-husband had lived before she went to DC.

The day my hair fell out we spent the day on the phone talking for hours. She was so supportive since she knew this was something I was not comfortable with at all. From that day forward we spoke with each other practically every day, and it was so comforting for both of us going through chemo together. Her regimen was adriamyacin every 3 weeks for 6 rounds totaling 18 weeks of treatment. Mine was “dose-dense” adriamyacin and cytoxin every two weeks for four weeks, followed with taxol every two weeks for four weeks totaling 16 weeks of chemo.

We talked about breast cancer and chemobrain plus our lives, side effects, research and managing to get through treatment, and we thought we knew a lot about breast cancer. We went out for meals together and one of our favorite places to eat was a Chinese restaurant run by a family we called “Lucy’s”, since Lucy always served us while her mother was in the kitchen. We both had terrible stomach issues during chemo. I had trouble keeping any food down and her food just seemed to run out of her little body.

We became extremely close because we were experiencing the same “trauma” at the same time. We would lose ourselves in conversations and never missed a Saturday to get together. We could both talk without our wigs on and I laughed when she made fun of me for holding on to whatever strands of hair would stay on my head. Truthfully, I did look a little  bizarre with 20 stands of knotted up blonde hair and probably should have just had my head shaved!

She also helped me through the crying jags since my hormones were going crazy. When one of my front crowns kept falling out, she made me laugh at myself being bald and toothless as I would call the dentist to glue the tooth in one more time till I finished treatment and could take care of the tooth properly.

We both needed surgeries and we never missed being the person to go with each other for surgeries. Li also got a dog named Shelby who is part shih-tzu and part maltese. Li had moved from a studio to a one bedroom so she could have more room and be able to take care of Shelby. She bought puppy gates and it was so much fun to visit her with Shelby, who I fell in love with from the day I saw her fitting in the palms of Li’s hands.

When Li had some cysts that she was not sure were cancerous she had an oophorectomy. Fortunately they were not cancer. She woke up crying which was so unusual for her. I think her mind knew that her female plumbing was missing and her tears were her hormones and her mind realizing that her breast and her ovaries etc. were missing.

In February 2007, I had a recurrence in the same breast, which my breast surgeon said had to have a mastectomy. I had finished treatment a year and a quarter earlier and had several biopsies that were false alarms in both breasts. My breast surgeon handed me business cards of plastic surgeons that he worked with.

The first surgeon saw me right away and it turned out he did Li’s reconstruction when she had her mastectomy and her results were awful. He wanted to do a Diep Flap (taking the tissue from my tummy and putting it in my breast). He also wanted $30,000.00 dollars over my co pays with my insurance to do the procedure.  I ended up picking the plastic surgeon that accepted my insurance, but that decision left me with many extra surgeries because I had a radiated breast that caused multiple surgical failures.

Like every other surgery, when I had the bilateral mastectomy surgery,  Li was with me. I encouraged her to go back to the first surgeon and get him to fix her botched job. She had her surgery after mine and when I went to talk to her doctor the first thing he said to me was “It’s very hard for a woman to lose her breasts”. I could not believe he didn’t recognize that I was in his office only two months before Li’s surgery. I said “Tell me about it . I have had a bilateral mastectomy with reconstruction”.  The next thing he said was that Li’s insurance probably wouldn’t pay for her stay that night. I explained she had a pre-approval letter and let him know that I saw him for a consult making him have to say he remembered me even though he didn’t. Awkward!

I knew how organized Li was with her paperwork, so when I went to her hospital room after speaking with her surgeon. Li pointed me to the paper with the pre-approval from her insurance. I called her insurance right from the hospital to make sure they were covering her hospital stay for the night. The plastic surgeon was wrong.

The next morning, Li had trouble breathing and she felt very out of sorts. We called the nurse who got hold of her Doctor. He said “When I did the surgery I may have kind of sort of nicked her lung”. I asked him, “In what percentage of patients does this occur”? He replied, “only her”.  I asked what they were going to do about it and he told me they would do a surgical procedure right in her hospital room by surgically placing a large tube in her side to build her collapsing lung back up. I couldn’t resist asking, “Are you sure her insurance will cover her to stay at the hospital longer after the procedure”? Of course the answer was yes, and I am so glad Li knew to get approval to stay overnight for her procedure, because if she had gone home and her lung collapsed I don’t want to think about how that would have gone down.

I stayed with my friend Li to hold her hand as long as I could while they prepped her for the surgery. They told me I had to leave the room while they did the surgery or I might faint. They don’t know me. I am very good in hospitals and I can handle blood and surgery.

When I needed my tissue expanders out and got my first implants, Li was with me. That surgery eventually failed.  After my recurrence I was very beaten down and I really wanted to spend some time with my family living in Tennessee. I ended up selling my LA condo and moved part-time to Nashville so I could be closer to them. But I kept my doctors and especially my oncologist in LA. I was lucky that another great friend in the group of 8 women breast cancer survivors (that now met at each other’s houses), rented a room to me in LA, so I could travel back and forth.

In February 2009, I flew to LA  for the monthly group meeting and hung out with Li for most of the time like we always did when I came to LA. We would go together to doctor appointments, restaurants, meetings and I also would bring my computer over and get work done while she did her work since she had wifi. She looked the healthiest I had ever seen her. She had gained some weight and her hair looked so beautiful and healthy. I told her how awesome she looked and we were so glad we made it through all that treatment. Li mentioned the last time she saw her oncologist she was told that it was a great sign that she was 4 1/2 years out with her pathology.

She was supposed to have her appointment with her oncologist when I was there and we were going to go together, but her oncologist had to change it, so Li changed the appointment for her birthday on February 19th. Li told me she had a small rash on her breast that she thought her bra must have caused. We both ate very well as we were enjoying the fact that our stomachs were returning to a new normal.

I returned to Tennessee and I called her later in the day on February 19th to wish her a Happy Birthday, assuming her oncology appointment went well since she looked so healthy. Li was a mess. She said that her doctor sent her to her breast surgeon for an immediate biopsy and the look on her doctor’s face made her feel like this was extremely serious. It was. The rash was skin legions from Metastatic Breast Cancer (MBC) and she also had it in her bones. She was Stage IV and had to start chemo again right away.

I ended up moving back to LA permanently in July 2011. I was very glad that I could be with Li so much during the last seven months of her life.

Li’s strength, courage and determination throughout her treatment were amazing. I felt awful especially thinking back to the day when we were going through primary treatment and she was going to have what I thought was  her last chemo the next day. We were together in front of our favorite restaurant “Lucy’s” in Santa Monica. Li’s red cells were awful so she had to sit down on a bench. I said to her “Li this is the last chemo you will ever have to do again in your life”. Sadly I was wrong.

Li worked very hard putting her affairs in order before the cancer traveled too far for her to have treatment anymore. As soon as she was sick with MBC she asked me if I would take care of her dog Shelby. I said, “of course” yet I hoped she was around for a very long time to enjoy the joy that Shelby brings. I remember when she was getting close to the end and I asked her if she was afraid. She said, “I’m not afraid of death but it’s the indignity of all of it that bothers me.” I knew that losing her mobility and not being able to do things for herself plus ending up thin, bald, and with a huge stomach from her liver metastasis building up fluid was no picnic. Luckily we found the most wonderful caretaker, Cora, who Li and I adored. She was such a comfort to Li constantly cleaning and making Li’s home beautiful plus running any errands Li needed done.

A few days before she died the caretaker Cora, Li and I had dinner. Li sat up in her hospital bed that we had in her room at home while Cora and I sat in chairs surrounding her. I said, “Li remember when we first went through chemo and we thought we knew so much about breast cancer? Boy were we wrong”. Li and I just laughed. We were trying to be normal having dinner, but truthfully there was nothing normal about anything that was going on. Li was getting more tired and going from moments of extreme clarity to moments of disorientation and confusion.

The last night of her life I came to join Li for dinner and she was particularly tired and didn’t feel like eating. I held her hand for some time while she went in and out of sleep. She said to me “I always love when you come by for dinner”. I told her that I loved her and was so grateful for our friendship, which I said at the end of so many of our conversations. She said she loved me too and went back to sleep.

She died that night and I received the call from another great friend who had also been by Li’s side through this daunting process. Li donated her body to science and did not want a funeral. When they came to get her body for UCLA, I was so impressed by how dignified they wrapped her up in a beautiful white sheet.

Since I promised her I would take care of her dog Shelby, I took Shelby and all of her things back to my home that day.  I miss my friend a lot. Thanks to her incredible gift of Shelby I feel Li’s presence every day.

Li’s death from MBC along with the friends I know who have cancer that has metastasized has made me determined to make an impact on seeing that we have an end to this disease.

I know that 1 in 8 women will get breast cancer in their lifetime and 109 women in the US die a day from breast cancer. (I haven’t forgotten that there are also men that get breast cancer too). This means one death every 14 minutes. With each person there is an important story.

I feel guilty sometimes that it wasn’t me instead of Li. It still could be me. That’s what is so cruel about the disease. We think we know so much more about the disease, but when it comes to the loss of lives we haven’t made much progress. True we can keep someone alive longer with chemotherapy drugs, but eventually cruel cancer figures out a way to outsmart the drugs so they no longer work.

My fearless friend Li, was not just another statistic. We had an incredible bond as a result of breast cancer and we cemented our friendship with being supportive of each other as breast cancer was always with us.

I know her spirit lives on through the memories of her.  I especially get comfort every day from Shelby. I am truly lucky that I got to know Li and I treasure the time that we got to spend together.

You have Breast Cancer

I am a breast cancer survivor. I heard the words “you have breast cancer” over the phone from my gynecologist on December 15, 2004. I had a sentinel node biopsy in January with a lumpectomy and the first node was positive. I will never forget the way my very famous breast surgeon told me that I had to do chemo. He said, “You are going to lose all your hair” in a smiling manner. The news did not go over well with me. I had an axillary dissection to see if there was any other lymph node involvement and luckily there wasn’t.

I went on the Internet and studied every chemo regimen before I met with my oncologist. I suggested that I wanted CMF since they were chemo drugs that would not make all of my hair fall out, only hair thinning. She recommended that I do “dose-dense” adriamyacin with cytoxin once every 2 weeks for 4 rounds, and then taxol once every two weeks for another four rounds. I asked her “if I believe the CMF will work over the regimen you are suggesting would you give me that for my chemo”?  She said “yes, but I really think the dose-dense is the best regimen for your particular case.” I adored her for recognizing that I was in control of my medical decisions. Because she didn’t talk down to me, I felt very comfortable with her.

My pathology turned out to be estrogen positive, progesterone negative, and her2-neu(negative). This meant that I could later take an estrogen blocker and I did not over express the gene meaning the cells did not multiply rapidly and I would not benefit or need a drug like herceptin(tratusunab). Lila’s pathology was estrogen negative, progesterone, negative, and her2neu (negative). This meant that she was triple negative and would not benefit from an estrogen blocker, or a drug like herceptin. Her pathology has a higher degree of recurrence because there is less to fight it with. Her pathology also is prevalent among the African American community, although she was half chinese and half All American.

When I realized I had to do chemo I joined a support group at UCLA Simms/Mann that was awesome. It met every Thursday morning and it was for women going through breast cancer primary treatment. There I met a friend Lila, who also went to the same oncology office that I went to with another doctor. A few days after the first meeting of the group, I saw her at the oncology office and I offered her a ride home. She was further along in her treatment and had already lost her hair. We became instant friends.

I started chemo in February after doing the BRCA 1 and BRCA2 testing and found out that I was negative. The first round went great, but after that it was downhill the rest of the way. The day I lost my hair I called my friend Lila from the group and we talked on the phone all day as the strands of hair kept coming out of my head. It turns out we had a lot in common and I was so grateful to her for staying with me during that frightening day. She knew because she saw how thick and long my hair was and that losing it was not going to go over well.

I started using all the medications to stop the nausea and vomiting. Eventually they all stopped working, even the expensive kytril. I lost 15 pounds and I couldn’t keep very much food down. Lila and I went out to eat a lot and she also had stomach issues, so we really were able to help each other. When I got to my last chemo I kept running to the bathroom with my IV and getting sick.

After chemo I did 7 weeks of radiation going 4-5 times a week on weekdays depending on holidays- equal to 35 treatments. I was still nauseous during radiation. Meanwhile, Lila and I continued getting together a lot to help each other with side effects and talking about breast cancer.

Because Lila was ahead of me in finishing her treatments, she went into the next group at UCLA, which met once a month called Looking Ahead. She told me that the group was only taking one more person and that I needed to hurry to get in to the group. It is an amazing group that meets once a month. After a year and a half of my being in the group, we left UCLA so others could start a group, and we still meet once a month at each others homes. I also took the real estate test, passed and got a great job at the number one office in Beverly Hills.

Six months after my treatment was over I had a suspicious lump that required a biopsy. When the famous doctor walked into the room I was smiling and he said to me “How come you already know the results”? I knew I was fine since I had just finished treatment and it was too soon for a problem.

In February 2007 I had my follow-up MRI.  When it was time for the results my doctor was away. I insisted that the doctor on call phone me. I had decided that cancer was not going to kill me but waiting for test results would. He told me there was a suspicious area on my left breast and I needed to come in for a biopsy guided by an ultrasound.

My doctor did an ultrasound and mammogram to see if he could find the suspicious spot on those tests, and he couldn’t. I thought I was in the clear. After all this was only a year and a half after I finished my last treatment. The doctor said, “Just in case, I am going to order an MRI biopsy to be sure”. He ordered the test. I asked the person who performed the test how many he had done and he said about 100. I realized how lucky I was to live in LA where we are on the cutting edge of technology.

After my usual two-hour wait for the doctor I got into the room and waited another half hour for him to come in. When he walked into the room to give me the results, I had the same smile on my face. He did not have a smile. Instead I heard those words again. He said, “It’s malignent. It’s cancer. It’s breast cancer again”. My first question was did I need to do chemo and he said that I didn’t. At least I didn’t hear “You are going to lose all of your hair again”. This was a local recurrence. He told me that I needed a mastectomy since it was in the same breast and that it was my choice if I did a bilateral or just one breast. He gave me three business cards to plastic surgeons that he worked with, plus he made an appointment with one of them who could see me immediately.

The first surgeon was going to do a tram flap (getting tissue from my stomach), and said it would cost $30,000 over my insurance. The second doctor charged me $500 for the consultation & recommended a double lat flap. He further explained that I would not be happy with the results. Then he had his assistant give me an estimate of $80,000 over the costs of the insurance for the procedure. One thing I was sure that he was right about-After spending $80,000 plus the $10,000 over the insurance I had to give the oncology breast surgeon to remove the breast tissue, I would not be happy with the results.

The third surgeon was a woman who accepted my insurance and normal co pays for the procedure. She said that she could use tissue expanders first to stretch the skin and then put implants in. I told her how important it was to me to have the c cup that I always had because I wanted all of my clothes to fit. By that time I had gained much of my weight back. I obviously chose the third surgeon.

I decided to do a bilateral mastectomy since I was having so many suspicious tests requiring biopsies, and my breasts were very dense. I felt that it was too soon for me to have a recurrence after my treatments and if my body was determined to make cancer cells in my breasts, I needed to pay attention to what my body was doing and make the right decision for me.

My friend Lila went with me for my surgery and got the doctor’s report as well as called my family in Tennessee. I also suggested she go back to her surgeon who was the first one I saw the day my surgeon told me about the second cancer and I went for an opinion. Since she was not happy with her results of her lat flap plastic surgery, I felt she should tell the plastic surgeon and give him another chance. He agreed that it was not a great job and said he would not charge her over the insurance to improve her breasts. I went with her for her surgery and after that we both always went with each other when we had surgery.

Without too much detail in this blog entry, the plastic surgery left me with barely a “b” cup and the radiated breast failed miserably. It was not the surgeon’s fault since this really was not her surgical specialty and she did not do flaps. I am so grateful to my oncology breast surgeon for finding my recurrence so early but I wish he told me that I was going to have major problems with my radiated breast. I ended up having 8 surgeries total counting my original surgery and finally found an amazing plastic surgeon that accepts my insurance in LA. If anyone ever needs a referral I will be happy to speak with you about her. She fixed a really botched up job by another surgeon who did a lat flap that also failed on my radiated breast.

My friend Lila also had a recurrence in February 2009. It  was a distant recurrence that had metastasized into her skin and bones, I am sorry to tell you she died on January 6^th, 2012.

I have learned so much about breast cancer since Lila and I were diagnosed with breast cancer plus I went to many symposiums about breast cancer. I also learned a great deal from the National Breast Cancer Coalition (NBCC at http://www.stopbreastcancer.org), and I am proud to say that I am a LEAD Graduate.

All of this motivated me to start my non- profit dedicated to research, education, patients rights, and ending breast cancer. You will hear more about what I am doing to make this company that I have created a reality, in other blogs.

To learn more about Advocates for Breast Cancer click on “About A4BC.”