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Breast Cancer Survivors Offer Support to Peers

Community Health Web Exclusives
breast cancer SOS participants

We featured Denise O’Neill as our “Inspire/Empower” spotlight for the Fall 2017 issue of Sass. Denise founded the organization Survivors Offering Support (SOS), which pairs breast cancer survivors with a breast cancer patient “to create a supportive mentoring relationship throughout the treatment process.” Read Denise’s story here.

We chatted with local breast cancer survivors Ginny Peters, Lori Hesen and Kirsten Stone to hear about their involvement with SOS.

Ginny Peters, 68, Walkersville

When were you diagnosed with breast cancer? How old were you?
I have been diagnosed with breast cancer twice. The first time was in July of 2001 when I underwent a mastectomy, chemotherapy and radiation treatments. I was working full time and I was 51 years old; my son had just gotten married the week before. The second time was a recurrence in July of 2013. I underwent a lumpectomy at that time and again repeated chemotherapy and radiation. I was 64 at the time and retired.

What was the hardest part of your battle with cancer?
The first time I experienced cancer, the hardest part was physical. Losing my hair, vomiting and fatigue were ever present. However, I was working at the time and my mind was occupied with other things. I was also younger and felt stronger in beating it. The hardest part the 2nd time was emotional. I was older, retired and the reality of a recurrence was much more frightening. I also received steroids in my treatment this time of which the side effects can be difficult.

What surprised you about it?
One thing that surprised me, I guess, was that the diagnosis was happening to ME and not the someone else. I never really asked “why,” but “why not?” My daughter told me that I had more strength than I thought I had and she was right. The second time I was diagnosed, I feel I had to dig a little deeper and work a lot harder to find that strength, but it too was there.

When did you get involved with SOS and why?
I got involved with SOS after my first bout with breast cancer in 2003. I recognized the mutual benefit to both myself and my mentee in sharing my experience. The practical advice alone…losing your hair, buying a wig, intimacy, diet, exercise…seemed helpful to my mentees and in turn, gave me a sense of purpose in sharing my story.

How does it make you feel to be a part of SOS? How has it affected your life?
I am proud to be a part of SOS. Denise O’Neill has done an amazing job with this program not only in this county but other counties as well. She is not only knowledgeable but is truly diligent, and compassionate and caring with all SOS participants. SOS has also given me the strength and courage to reach out to other cancer patients and I now volunteer regularly at our Frederick Cancer Center.

What advice do you give to your mentees?
There are a host of practical ideas that I share with my mentees but I feel very strongly that the emotional impact of a cancer diagnosis is minimized and, therefore, not always adequately addressed during treatment and recovery. Cancer is a lifetime diagnosis and brings with it fears and anxieties, but reaching out to other patients as exemplified in SOS, can be a source of recovery for all survivors.

Kirsten Stone, 52, New Market

When were you diagnosed with breast cancer? How old were you?
I was diagnosed with Stage 3 Invasive Ductal Carcinoma BC, and was also BRCA positive in 2014 at age 49.

What was the hardest part of your battle with cancer?
The hardest part of my journey really was two fold. First, the duration and intensity… I had such an extensive treatment, 6 months chemo, double mastectomy, weeks of radiation, full hysterectomy, breast expanders, latissmus dorsi procedure (lateral muscle used to reconstruct breast), as well as complications along the way… radiation pneumonitis (compromised lung), frozen shoulder, cording of lymphatic system. IT WAS LONG. I guess I thought “got diagnosis, get treatment, be better” —I never had time to wrap my head around that this would consume over two years of my life!

The second hard part was that my cancer was genetic, being BRCA+ — I ate healthy, no drinking, no smoking, I ran a half marathon 2 months before my diagnosis — and BAM, I have a serious, aggressive cancer. It took  me awhile to accept this, and then I worried about others in my family. They have slowly been tested and so far all are negative for the gene!

What surprised you about it?
I was surprised at how fast I came to accept this and turn into a knowledgeable, advocate for myself. Not to say I wasn’t scared along the way, but I realized I could beat this and worked to communicate with my care team and others to make the most of my treatment. I was constantly amazed at the healing and fighting power of my body. It’s truly amazing what it went through and how strong it was/is!

When did you get involved with SOS and why?
Shortly after my treatment in 2016, I felt ready to join SOS as a mentor. As a teacher, a mother, a woman and a survivor I knew I had tools which could help others. I knew during my treatment I would want to be a part of this program, but I needed time to heal, physically and emotionally. My journey was so “BIG” that I had to compartmentalize parts of the process to get through it in it’s entirety. I knew I would know when the time came and it felt right. My urge to help others has always been there… but I wanted others to have the support I did. It can undoubtedly make the difference of how a patient is able to navigate through their treatment and get connected to those who are able to help.

How does it make you feel to be a part of SOS? How has it affected your life?
SOS is a wonderful program. I am thankful to be able to give back. It is bittersweet, but mostly sweet. At times it is challenging to separate my emotions having been through this experience. There are so many sensory experiences that evoke powerful feelings. I had to learn to feel them, acknowledge them, and remind myself to be present for my mentee in what she is experiencing. Being part of SOS and walking through the journey with another woman makes me feel proud of how I handled my health crisis, thankful for the amazing gift of life and support I received. Mostly, it makes me feel like I have the skills to empower another woman to dig in, keep her head up, ask for help and FIGHT!

What advice do you give to your mentees?
What helped me the most was to always remember: No matter how awful you feel or how bad it is, there is ALWAYS someone who has it worse. Keep your sense of humor — there is always something to laugh about, even in the most twisted, frightening experiences. LOOK for the SILVER LINING! Remember your family and caregivers — it is very hard on them. They love you and are doing their best, even if it isn’t exactly the type of help YOU need. Communicate your needs clearly and often, as they change! To your family, medical team, others. Be an advocate — it is your life!

Lori Hesen, 56, Walkersville

When were you diagnosed with breast cancer? How old were you?
I was diagnosed in October 2014 and had a mastectomy in November. I was 53.

What was the hardest part of your battle with cancer?
It’s hard to say what the hardest part was but here’s a few difficulties that come to mind:
1. Telling friends and family — especially my children. I have a daughter and a son and they were ages 28 and 25. It was very difficult to see everyone being upset and concerned. I had never been in the position of having to be cared for before — I was always the healthy one.
2. The recovery from the surgeries was difficult but I had tremendous support from family & friends.
3. I also did not anticipate the fear of recurrence. However, the SOS program and Denise helped tremendously with that fear.

What surprised you about it?
I was surprised by the length of time it took to recover and the support I needed—I’ve always been healthy and active and thought I would “pop” right back. I was also surprised by the doctors and the way it was all handled. I didn’t have to think from the day I was diagnosed. The team of doctors was set up for me and I was told what to do and what was going to happen each step of the way. There were no surprises about surgeries or recoveries. It was wonderful! My experience at FMH was also great — good nurses and staff support!

When did you get involved with SOS and why?
Right after I was given my survivorship papers I contacted SOS. I just want to help others that may not have the support that I had. I had a friend who had breast cancer 5 years previous with the same surgical team and she was such a wonderful resource for me in answering questions — especially about what would be needed for recovery. I want to be that person for others who need someone.

How does it make you feel to be a part of SOS? How has it affected your life?
I love being a part of SOS. It’s so rewarding to feel like I’m helping others with their battle and mentoring others also helps me to heal.

What advice do you give to your mentees?
The most important part of mentoring is listening. I don’t want to overwhelm my mentees with information, but I will answer questions and make sure they know what’s going to happen and what they will need for recovery. I also let them know how important it is to let others help you with recovery — you need it and so does your family — they need to be there with you.

 

 

Learn more about SOS, which is available at over fifteen hospitals in the tri-state area, by contacting Denise at doneill@fmh.org.

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