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

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.”