This is part of our "Meet a Volunteer" series, highlighting the incredible ovarian and breast cancer survivors and thrivers who volunteer with SHARE to support other women facing these diseases. If you're interested in becoming a volunteer yourself, click here!
- Why did you decide to be a SHARE Breast Cancer Helpline volunteer?
I was a clinical social worker when I was diagnosed with metastatic breast cancer (MBC) and was looking for ways to support myself and to help others. I found out about SHARE’s Helpline and the terrific work that SHARE does from a fellow MBC
patient. I emerged from the shock of diagnosis to find that I could use my clinical training and experiences to help others in a similar situation. I began volunteering with SHARE through my work on the MBC webinars in 2018 and 2019 and now do direct outreach to callers through the dedicated TalkMETS phone line.
- What do you like most about being a Helpline volunteer?
It is very rewarding to help someone who is newly diagnosed so that they feel less alone and to offer roadmaps to resources and other steps to take. I love connecting people to new areas of support and helping them feel more in control of their situation in this way. I also love collaborating and working with my fellow Helpline volunteers and peers. It is so humbling to learn from each of my fellow peers who have accumulated years of knowledge of MBC treatments, trials, and issues. These women are awe-inspiring, and I am so proud to work with each of them.
- When were you diagnosed and what was your diagnosis?
I come from a long line of breast cancer and strong women. At this writing every single female member on my maternal side, four generations back, has had breast cancer. Most of them died in old age of other causes. (None of us currently living have the BRCA mutation but have the less studied Chek2 variant of unsubstantiated significance.) As someone never to do anything half-way (ha!), I am the only person in my family to be diagnosed with breast cancer at stage 4 from the beginning (de novo). My breast cancer was discovered in August 2017 at the age of 51, a mere 6 months after I had repeatedly gone to my gynecologist with complaints of breast tissue changes but no lumps. These trips to the gynecologist resulted in 2 separate mammograms and ultrasounds that found “nothing.” I had dense breast tissue and so it would seem none of the screenings that I had had since age 35 actually detected the slow growing cancer that must have been there for a few years.
At this point in my story, I always pause and reassure folks that it is now recommended that anyone with dense breast tissue and significant family history of breast cancer discuss the use of MRI screening. It also turns out that my cancer is a mixture of ductal and lobular characteristics, so it is somewhat unique and very stealthy unfortunately. Everyone else in my family with breast cancer was diagnosed at an early stage and at the onset of menopause. None of that was true for me. As I was walked across Central Park towards the hospital for surgery to remove my ovaries a month after diagnosis, my menstruation cycle started. It was a gorgeous autumn day, and I had to laugh at the irony of it all. Even my ovaries knew what was up.
I am ER+ PR- HER2- with “only” 3 metastases in my spine at diagnosis.
- Where are you now, as far as your breast cancer “journey?”
Of course, at the time of my diagnosis the debate over surgery to remove the primary breast tumor (mastectomy) was still unresolved. Being a person of action, it was extremely difficult not to jump immediately into the cancer treatments that others in my family had utilized and survived. I did understand that my stage 4 diagnosis placed me over a river that they had not crossed, and I would be in uncharted waters. My oncology team and I decided that we would wait to see if the Ibrance (Palbociclib) and Letrozole (Femara) combination do its magic, and if I became NEAD (no evidence of active disease), then we would entertain the idea of a mastectomy. I started Ibrance and Letrozole and was able to tolerate this protocol very well for 22 months. The metastases in my spine had resolved somewhat, but there were new spots on my hip and sacrum, so Ibrance and Letrozole would end.
During this same time, my beloved first oncologist left our hospital and my husband and I went through the process of getting to know a new oncologist. As a team, we struggled with determining if my rising tumor markers actually meant anything, until they did, and I began the process of joining a clinical trial that examines the efficacy of adding immunotherapy to standard treatments. I also went for a second opinion at another well-regarded cancer center and was comforted to know that my treatment plan was aligned with their recommendations.
In the MORPHEUS trial I was randomized to prescribed Faslodex (fulvestrant) plus Tecentriq (atezolizumab) from July to December 2019, when I had progression to my liver. This progression led to me moving to the second phase of the MORPHEUS trial, which added Avastin (bevacizumab) to my cocktail of Faslodex and Atezolizumab. The side effects were manageable, but I certainly got a glimpse into how old bones and muscles feel late in life. I have never ached and creaked so much. Unfortunately, in January of this year, a spike in my tumor markers and progression in my primary tumor, led to termination of my MORPHEUS trial participation. I began taking Xeloda (capecitabine)and Evista (raloxifene) in mid-February of this year.
- In addition to volunteering for SHARE, what else do you do? What do you (or did you) do for work?
I’m also very involved with The Cancer Couch Foundation (TCCF) that only does fundraising for MBC research. Among other positions, I co-created the 2019 #Reason4FreezinMBC viral social media challenge that was featured on The Today Show with a spotlight story on TCCF founder Rebecca Timlin-Scalera. TCCF is a remarkable organization that receives a 100% match for every dollar donated, and all of this is sent directly to MBC research labs at Memorial Sloan Kettering Cancer Center and the Dana Farber Cancer Institute. In just the past 4 years, TCCF has supported the publication of 3 major papers that have propelled MBC research forward.
I continue to run support groups for other MBC patients but have stepped away from my clinical practice at a local non-profit mental health agency. I had worked primarily with children who had either experienced profound trauma or have significant emotional dysregulation in an acute care outpatient program. Given the setting, my bone mets made this work untenable. I continued to work with individual clients and with the agency’s executive director on various capacity building activities for the team on a part time basis and then left the organization in December 2019 to focus my work on MBC issues.
Prior to working in clinical social work, I had a few different careers in international business and consulting, political/economic research, economic development, NYC government and nonprofit boards. All of this prior work has been useful with my lobbying efforts for H.R. 2178 and other MBC advocacy work.
- What do you do for fun?
Anything involving people! As I write this on day 34 of self-isolation during the COVID-19 crisis, this truth is a real bummer. I miss hugging and being with my people doing all sorts of things – skiing, hiking, doing yoga with others, dancing, playing tennis, going to museums, seeing great plays and musicals, soaking up the streets of New York. I have my wonderful nuclear family of four and our fluffy dog to keep me company during this time and I am so grateful. Silly board games, group cooking and massive zoom parties have never been so entertaining.
- What did you learn about yourself while going through your breast cancer experience?
That I am tougher than I thought. And resilient. I am still the same me but with very different glasses on with which to see the world now. It is gut wrenching to see my friends die from this disease and there is no sugarcoating that horrible reality,but I also don’t want to look away from this hardship and pain. I can sit in the sadness of life with MBC while also feeling lots of joy with the time I do have. I am able to hold both of these emotions and still get on with my day. That knowledge has given me a strength that I didn’t recognize or perhaps acknowledged before. To be clear, I have seen hard times in my life but this diagnosis has definitely clarified what is really hard, what is worth my time and what no longer matters.
- What priorities did you have before and after?
Before cancer, I was fully engaged in building my clinical therapy practice which would focus on children and their families. I loved this work very much and felt that I could happily work well into my 70s. Such work could change locations depending on where my husband and I decided to settle after the kids were fully grown and launched. After cancer, my work shifted to oncology social work and MBC advocacy. This was a relatively easy transition, but I do miss the kiddos I worked with and the incredible professionals I learned from each day.
Before cancer, I thought I would live until I was 94, like most of my forebears, and so had put off visiting dear friends who live in every corner of the world. I was busy with work and my own kids. There was always something to balance and juggle that got in the way of this kind of travel. After cancer, we travelled to Nairobi, Tokyo, London and Paris to reconnect with our dearest friends and to show our kids the places and people that shaped us. It has been such a privilege and luxury to travel as I’ve been able to. I am incredibly grateful that my side effects and drugs and cancer in general has not stopped me from doing this. When we get to travel again, it will be such a joy.
Before cancer, I lived for my two sons and my husband, my zany family in Toronto and beyond, and my beautiful friends. After cancer, that still holds. I am surrounded with incredible people in my life and communities that give as much as is given. I definitely say no more and say yes to the things that make my heart sing. I always ask if something is worth doing if I only had a year left to live, even though I continue to hope that I’ve many more years left in me. This little mental trick helps to stop me from doing the same old things without thinking and giving more space in my life for the stuff that brings me and my loved ones joy.