ESCAPE 2016

escape_4_cancer_advocates_-_about_us_-_2016-09-06_09-25-30It was so thrilling to attend #ESCAPE2016. How wonderful the BAG IT organization is committed to combining patient advocacy with self discovery. meditation, group exercises, meetings about effective lobbying, running non-profits and even a special Indian dance. bag_it_-_2016-09-06_09-20-08

I went to Escape seeking solutions to balance my personal and professional passions. I discovered I hide my ongoing complications from this disease, because so many of my close friends with stage IV are being ignored and facing much more difficult circumstances. I want to save everyone from the scars of cancer. I have lost so many family members and loved ones to this disease.

IMG_4954The desert was beautiful, but a little warm this time of year. With a no cell phone policy at Miravel Resort, it was nice to not feel so absorbed by the 100’s of tweets, FB posts, texts, and emails, as I tried to balance the great conferences with classes and even group meditations in pods!

I loved that it was a small mix of all kinds of cancer advocates. There was healthy food, meditation, and networking. We had an amazing talk from Shelley at the NCCS where she talked about how we influence policy. IMG_4897

I hope to go again next year. I was fortunate to meet some great people and partake in combining advocacy with self discovery. Patient advocates (especially volunteers) need this type of balance. The burn out factor is real especially when passions are high, time is of the essence to save lives and yet all of us must remember to stop, take a breath, and try to be in the moment especially when the body and mind are filled with stress.

It’s also important to put our personal health first. No matter what stage or complications one has from any cancer, loved ones helping, medical professionals, patient advocates, researchers, and doctors, we are all in this together. We must respect each other and try to move forward. My own personal side effects have slowed me down sometimes, but it’s time we allow ourselves to feel.

IMG_4950I also realized that I have been dealing with a lot of grief. Thankfully I was surrounded by awesome people. Version 2During many of the special meditative and group activities, I found myself quite emotional. I do believe that when it comes to cancer there’s so much emotional pain, physical changes, highs and lows, and some very tough times because of the incredible toll this disease can take. Thank you to the sponsors who help bring Escape2016 to patient advocates.

I came home so much more refreshed and ready for the tasks ahead that keep this new balance. It’s important to take time for reflection and always be mindful of making sure we keep taking care of our selves, while content to push forward helping others.

Testing #Scanxiety

Anyone touched by cancer knows about testing Scanxiety. You don’t want catastrophic thoughts running through your mind.

It’s been a slow process of testing, fuzzy thinking, difficult concentration, pain, and symptoms piling on over the past few months. I’m mostly disappointed that I’m less productive.

It started with pain in my right ribs. Then there was more pain on my right breast that recently extended to my back ribs too. I’ve had X-rays, MRI without contrast, and most recently a bone scan. Each time I hear results of no mets I’m extremely grateful.

I’ve had early stage breast cancer twice, chemotherapy, radiation, lots of breast surgeries including a mastectomy with reconstruction. Everyone knows how passionate I am to see that we do everything to extend lives with quality of life and find a cure for Stage IV.

Testing Scan 2Just when I thought all was clear I got a call from my oncologist that after further inspection there is a suspicious spot on my spine at T8. Tomorrow they do an MRI with contrast on my spine and see if a biopsy is warranted.

I could use good thoughts and prayers.

While I feel fear, I refuse to let it run my life, (easier said than done) especially when there’s so much I am grateful for including all the incredible support around me.

 

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Click for  Update on Scans  It’s great news!great_news_clipart_-_Google_Search_-_2016-02-06_09.49.49

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.

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.

susan-love-cancer-20130213-001She 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.

Oncotype_boxMammaPrint_posevnoHaving 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.

chemodrip.jpg.pagespeed.ic.1vc9PB_Kv3When 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)
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.

28627_119149311460178_7118937_aI 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

Survival – A Widow’s Journal

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

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

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

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

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

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

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

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

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

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

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

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

How Breast Cancer Has Changed My Life

breast-cancer-treatingWhen I got breast cancer I thought I would go through my treatment, get cured and go back to my normal life.  My primary treatment with breast cancer happened in 2005 consisting of a lumpectomy, chemotherapy and radiation. In February 2007, my doctors found a local recurrence caught early, yet it kept my breast cancer with me because  I ended up having so many breast surgeries. I started having a bilateral mastectomy with tissue expanders to implants, and I am still going through completing my reconstruction because of many complications due to my radiated breast.

The truth of the matter is my life changed completely. I left Los Angeles and went to live in Tennessee after my recurrence so I could be closer to my family, only to have my father die of pancreatic cancer and my brother get sick and die of esophageal cancer. Luckily I have my mom, my sister, my nieces and nephews, plus awesome friends.

volunteerimagesWhile in Tennessee I volunteered at the Vanderbilt Ingram Cancer Center in the chemotherapy infusion center to try to help others going through chemotherapy. I also volunteered with the American Cancer Society at the Hope Lodge where people too far away from the hospitals in Nashville stayed for free at a beautiful Lodge with other cancer patients, so they could get treatment for cancer.

I returned to live in Los Angeles after my brother died and his family left Nashville, where my best friend Lila was starting to show signs that her breast cancer was progressing rapidly. She died five months later. People have told me I have intuitive instincts about where to live. I have been fortunate to end up living where I am needed the most.

The biggest change within me is that I find small problems not worth fixating on since life is too short and important. I try to live each day to the fullest since I realize now that we will never know when it will be our time. I am grateful that I lived through my treatment and that now I can believe I am cancer free, but one never really knows. In the back of my mind I am always wondering whether it will come back, perhaps because I have so many friends who are in that situation.

I feel devoted to breast cancer issues as well as my breast cancer advocacy. I surround myself with mostly other survivors because I feel most connected with them. I also joined a support group which used to have eight women till  Lila died from breast cancer and now we are seven. We meet once a month at one of the members houses depending upon who hosts for the month.

As a result of this horrible disease, I have met so many interesting people who have enriched my life in so many ways. I have to accept that I am right where I belong, and I have this wonderful opportunity with my non-profit company to help the lives of people affected by breast cancer.

For more information about my non-profit company “Advocates for Breast Cancer”, read “About Us”.

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 6th, 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.”