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.

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.

______________________________________________________________________________

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