Meet a Breast Cancer Helpline Volunteer: Arlene

Meet a Breast Cancer Helpline Volunteer: Arlene

  1. Why did you decide to be a SHARE Breast Cancer Helpline Volunteer?

Back in March of 2015, I was diagnosed with breast cancer.  In my research and efforts to find information on my type of breast cancer, and eager to speak with women who had already gone through this experience, I came across SHARE. I was greatly relieved to find valuable information and excellent resources on SHARE’s website.  It was a comfort to know too, that I was not alone.

  1.   What do you like most about being a Helpline Volunteer?

I absolutely love that, as a breast cancer Helpline volunteer, I am able to help others. In listening to them, and when asked, to share my story and my experiences in hopes of making theirs easier, I hope to provide comfort as others have comforted me.  I am most proud now to have become, what I coined, a breast friend to others.  When I was first diagnosed, I had many women and men help me along my journey.  At first, I started to write on post-it notes and scraps of paper with scribblings of everyone’s name and phone number.  One day I began to condense their information into my computer database, and I thought hmm, where should I enter their contact information?  At first, I thought, I’ll put them in my “friends” category, but then I decided to create a  special sub-group and called it breast friends.  I define breast friends as those who helped me to understand my diagnosis, relieve my anxiety and fear, and just simply listen and be there for me.  It is a great honor to now be able to pay it forward. 

  1. When were you diagnosed and what was your diagnosis? 

In March of 2015, I was diagnosed with DCIS. At first, 3 clinical tests missed the DCIS while the MRI caught over 8 to 9 cm of DCIS.  The two breast needle biopsies confirmed the extent of the DCIS missed that had already turned into invasive cancer.  It was my persistence, gut, and intuition that kept me going and pushing my doctors for answers.  Something didn’t feel right.  I kept getting a slight feeling of a pinprick and ache under my right armpit.  I tend to be assertive and a bit of a type-A New Yorker but I was a bit intimidated, as clinical tests and excellent schooled physicians were showing nothing. If you feel something isn’t right, DO NOT WAIT AND SEE, GO and get it checked out! Initially, I had DCIS but didn’t want to have a wait and see approach, so I had a right breast mastectomy in June.  However, it was only after surgery did they find the invasive cancer and staged me at 1A.  Numerous doctors said, “It was a miracle it was caught.”

  1. Where are you now, as far as your breast cancer “journey?”

Well, after 3 surgeries, 40 sessions of physical therapy, a breast tattoo (that’s a story in itself ), stopped taking Tamoxifen this past August 14, my birthday--5+ years later--I am doing GREAT.  And whoever reads this, ladies and men, keep a positive attitude no matter what and keep pushing forward!!

  1. In addition to volunteering for SHARE, what else do you do? What do you (or did you) do for work?

I’m a Certified Healthcare Professional and director of the Office of Academic Engagement, Education, and Communications in the Department of Cardiology at Northwell Health. I also serve as an adjunct assistant professor at St. John’s University in New York City. I’m also very proud to be an author.  Back when I was first diagnosed. I did a tremendous amount of research that led to a bit of soul searching and taking myself to task on my lifestyle. As a lifelong learner and journaler, I typed all my notes up and realized I had written over 63,000 words. My book, Just Diagnosed, is now on Amazon and will be published in May 2021. It is dedicated to helping others become self-aware and empowered by taking charge of a breast cancer diagnosis.

  1. What do you do for fun?

I love to travel and had plans to visit Israel for the first time, but with COVID-19, it hasn’t been possible, so it’s on my travel to-do list for now.  I’ve been to Egypt, Paris, Rome and the Amalfi coast, and Los Angeles and New Orleans, to name a few. I very much enjoy writing and journaling.  I exercise doing yoga and strength building classes via Amazon Prime, bicycle, and walk.

  1.   What did you learn about yourself while going through your breast cancer experience?  

You absolutely must be your own advocate.  While I had a bit of an edge working for an incredible health system with access to doctors,  I had never had breast cancer.  Everything was new.  While I had amazing doctors, love, and support from friends, family, my breast friends, work colleagues, and my furry pals, the bottom line is you have many decisions to make for your body.  And no one can, will, or frankly should, make them for you.  So you must be informed of your diagnosis and what options and care are available to you. Think about the detailed questions we ask when shopping for an apartment, a house, a car, or take-out food!!!  When you are just diagnosed, and thereafter, you must make YOU a #1 priority. Whether choosing doctors or procedures, it is likely for a lifetime, so shop around and choose wisely.

  1. What priorities did you have before and after?

Having a clear vision for my health and living, not just well, but to be my best self and to know that I always have choices. Making myself a priority, every day, is important. Giving back to the community is so important, as well.

  1. Any other insights that you want to share?

 I will leave you with a few favorite quotes of mine. These quotes have inspired me.  I hope they inspire you, too. I challenge you to go and find your inspiration and spread it to others.  Xoxoxo

  • “There are two ways of spreading light: to be the candle or the mirror that reflects it.” Edith Wharton
  • “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” Viktor Frankl
  • “One’s philosophy is not best expressed in words; it is expressed in the choices one makes…and the choices we make are ultimately our responsibility.”  Eleanor Roosevelt

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