Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Selma Schimmel
My earliest memories are about cancer. My maternal grandmother, who lived with us, died when I was only two or three, but I have a deep memory of her presence in my life. I can still see the image of her colostomy and feel how scary that was.
In 1981, at the same age as her mother when she died, my mom was diagnosed with advanced ovarian cancer. Ten weeks later she was gone. Not long after that I found a lump in my breast. At age 27 I was told that I was just too young for breast cancer. The radiologist held my mammogram up to the light box and told me I was being neurotic and should “go home and forget about it.”
I think that was the day I became an advocate.
Four months later, I was diagnosed with breast cancer that had already spread to two lymph nodes. I was treated with a lumpectomy, radiation and chemotherapy.
It was a very isolating time. It seemed impossible to meet other young adults with cancer with whom I could identify. Support groups were composed of people many years older and our needs and life issues were so very different. Young adults with cancer were nowhere on the map. That’s why in 1983 I founded Vital Options, the first cancer support and advocacy organization for young adults between the ages of 17 and the early 40s. Vital Options has since grown into an international cancer communications organization for people of all ages, but remains actively involved in the current young adult advocacy movement.
In the 1990s I learned that I was BRCA1 positive. My older sister is also positive, as are two of five cousins, but miraculously, none of my sister’s four daughters have inherited the mutation. I opted for increased surveillance rather than mastectomy, and knew that ultimately I would need a prophylactic oophorectomy. Until then I would be diligent about using whatever screening was available, like the Doppler ultrasound and CA125.
In 2003 I celebrated my 20th anniversary of being free of breast cancer. Deciding it was time to invest in my next twenty year s of health, I scheduled my elective oophorectomy. Much like the shock my surgeon experienced 20 years prior when he discovered I had breast cancer in my 20s, my gynecologic oncologist was not expecting to discover that I already had ovarian cancer. Thankfully, it was still confined to the ovary and responded to chemotherapy.
My elective intervention saved my life. Each time I share my story I do so in the hopes it will save someone else’s life. I had a chance my mother and grandmother did not have. None of this was easy for me, but it was essential. Each of us has to find our way and our time. As difficult as these decisions are, as individuals, we must apply technology wisely. It is the whole point of research; once we have the knowledge we must use it.
Facilitating a global cancer dialogue is the mission of Vital Options International. I am privileged to speak with cancer survivors worldwide every Sunday on a cancer talk radio show called The Group Room®. Key oncology opinion leaders, professors and clinical researchers from the US and Europe discuss all aspects of cancer. Listeners are invited to join the conversation. Vital Options maintains an interactive website where program and other information are posted and all shows are archived for later listening.
Selma Schimmel is the founder and CEO of Vital Options International, a cancer communications, support and advocacy organization. She also hosts the weekly cancer talk radio show, The Group Room. Find out more about Vital Options and listen free to The Group Room at vitaloptions.org.