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JOURNAL

In Her Words: Ellen Hall Saunders

June 11, 2020

Ellen Hall Sanders was diagnosed with a type of breast cancer called Infiltrative Lobular Carcinoma at age 58. Even though her mother had breast cancer twice, testing showed that Ellen didn't carry the BRCA genetic mutation. Yet after seeing what her mother went through, she knew that if she ever got the disease, she would take no risks and opt for a mastectomy. "A woman's breasts are not what define her. It is possible to be beautiful, strong, sexy and complete after mastectomy without reconstruction," she affirms. To learn more about Ellen's experience, why she chose to go flat as well as some alternative therapies that helped her along the way, read our latest In Her Words below.

Name: Ellen Hall Saunders

Age: 59

Location: Los Angeles, CA

Current Health Status: Cancer-free. In the process of assessing whether my liver can tolerate the prescribed Aromatase Inhibitors.

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Tell us a little bit about yourself.

I am a freelance writer and mother of two grown children. My husband and I have lived in Paris, San Francisco, Portland and Boston, and are now happily retired on the beach in Los Angeles. I love to cook, meditate, read, and am an avid knitter!

When were you diagnosed with breast cancer?

I was diagnosed with Infiltrative Lobular Carcinoma in the fall of 2018 at the age of almost 58. ILC can be hard to find as it grows in strands, not tumors, so I was lucky that a routine mammogram picked up a “distortion” in the breast tissue. The cancer was estrogen and progesterone positive and HER2nu negative, and the 4 lymph nodes removed were all clear. My mother had breast cancer at the age of 44 and again 25 years later in the other breast. Genetic testing showed that I do not have the BRCA gene, but rather a “family pattern.” Basically, that means we might have a cancer gene that hasn’t been identified yet.

What were your first thoughts when you were diagnosed?

After waiting all week for the results of the needle biopsy, I figured that I must be in the clear because certainly the doctor would have called if the news was bad, wouldn’t she? I hadn’t counted on the fact that my own doctor was out sick. By the time my lab report reached a doctor’s desk, it was 5 pm on the Friday before Labor Day weekend. My daughter was home for the holiday, and we were together at the gym when I got the call. She saw my face and immediately called my husband and son who arrived within 10 minutes. My first thoughts could well have been fear, disbelief or resignation, but all I remember about that moment was love. I was not alone and, somehow, I just knew that with them by my side, whatever happened, I would be ok.

How did your friends and family take the news?

Telling our extended family was hard. We are all very close and had already experienced some tremendous sadness and loss in recent years. There was this odd sense of guilt in breaking the news, a sense of responsibility for really ruining their day! I know that’s ridiculous but it was almost as if as long as we didn’t say anything it wasn’t really happening. Once we told them, the outpouring of love and support was overwhelming. Friends and family showed up in a million ways.

Describe your treatment and how you arrived at that course of action.

I had always known that if I ever got breast cancer I would have a mastectomy. My own mom had two mastectomies, and we had witnessed too many cases of friends whose cancers had returned after lumpectomies. Although I had the option of a lumpectomy and radiation and was assured the 10-year survival rates of both choices are the same, it was a clear decision for me. Once I heard that ILC often appears in the other breast as well, it was an easy leap for me to choose a bilateral mastectomy.

What required more thought was the question of reconstruction. The surgical team assumed I would want to look more “normal” (in fact the plastic surgeon presented his technique as a boob job and tummy tuck in one!) but I knew from my mother that a woman’s breasts are not what define her. It is possible to be beautiful, strong, sexy and complete after mastectomy without reconstruction. I really wanted to focus on healing from cancer without the health risks of more surgeries. I was so grateful that my surgeon gave me a few weeks to research this issue to feel certain about my decision.

A phone call with a breast cancer social worker helped me see that “going flat” with or without the many breast forms available as a valid and positive option. My surgeon put me in touch with a flat patient who generously offered to speak with me, and I reached out to women I knew who had undergone different kinds of reconstruction. These conversations helped inform me about the realities of these options and their outcomes. I learned about the number of surgeries, the fact that the new breasts don’t have the same sensations as natural breasts, the potential risks of implants and the physical impact of cutting muscles and moving tissue. While I completely support the choice to reconstruct, I decided it was not the right choice for me. Having decided to go flat, I learned how important it was to communicate and confirm with my surgeon my desire for her to give me a smooth flat chest without extra flaps and scarring. She did a beautiful job, leaving me a canvas for a future tattoo!

Were you able to work through treatment?

As a freelance writer, I did not have a job to get back to, so I was able to take some time to ease back into my home, family and work responsibilities. It took about 3 months to get my energy back, and then I began to struggle with some of the health impacts of the aromatase inhibitors.

Where and how have you found the best care?

My primary care doctor is at UCLA, so I stayed within the UCLA system to coordinate all my care. I met all the doctors on my breast cancer care teams on one day. It was helpful to have them all working together on my case and they came up with a coordinated treatment plan.

Have you received any additional support or alternative therapies?

I am a strong believer in natural medicine and my naturopathic homeopath has been working with me since day one. A combination of supplements and homeopathic remedies has helped my mental state, my physical healing and addressed some of the side effects of aromatase inhibitors (AIs). I have also benefitted from physical therapy, osteopathic adjustments and myofascial release, and working with a trainer at the gym. I practice yoga nidra meditation and have found it greatly reduces my anxiety and pain.

What or who have been your biggest supports? Who makes up your cancer tribe?

My number one support is my husband who has never once made me feel less beautiful or special through this disease that strikes at the heart of our identity as a woman. My daughter and son have been incredible, taking off time from work to care for me in the early days and helping me in so many ways since then. My sister and my mom have been constant supports and my cancer tribe is completed by special friends, family and my online Facebook support groups. I also got a kitten after a few months after surgery who I am convinced contributes to my healing!

What has been one of the most challenging aspects of the experience for you?

The most challenging part of my experience has been the fact that healing has not been linear. I make progress and feel stronger, and then a new health challenge shows up. I get frustrated that I am still spending so much time focusing on my health instead of other aspects of my life.

What is one thing you wish you knew before you were diagnosed?

There is really nothing I wish I had known before. I had a lot to learn once I was diagnosed but I am glad I didn’t have to think about any of this before!

Is there a particular mantra or inspiration that helps you?

Breathe…. And take this one day at a time…

If you could offer a woman, who has been newly diagnosed, some words of wisdom for her journey, what would you tell her?

Take the time you need after diagnosis to research your options and talk to as many people who have gone through this as you can. I learned so much from others’ experiences. Be kind to yourself and let yourself rest when you are tired.

What are you most proud of in your cancer journey?

I think I am most proud of the way I have faced my fears and integrated this experience into my life’s journey without being defined or defeated by it.

How has breast cancer affected your outlook on life? On illness?

I am probably not alone in having this experience help me realize how important it is to appreciate all that life offers: the love, the natural beauty around me, the joys that can be found in everyday life. Illness, death, pain: they shine a light on the beauty of what we have if we allow ourselves to stay present through all of it.

How have you changed?

For much of my adult life as a stay-at-home mom, I struggled for validation, feeling that I should be doing more. The outpouring of love and support that has lifted me up through this journey showed me that my value as a person is not dependent on some future accomplishment. I know now that my life has value just the way it is, that I am enough today and every day. It is a beautiful, calming realization, and I am filled with gratitude.

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