I was fortunate to actually meet some of the women from the Young Survival Coalition when I was in Chicago last year. A few of them have agreed to an interview. Here's the first, Bethany
Bethany, how old were you when you were diagnosed- 39
What was your diagnosis? Stage I, IDC, 0/12 nodes, lymphovascular invasion, ER/PR+, they did not test for Her2 back then!
What types of treatment did you go through? Lumpectomy, 2 re-excisions and axilla node dissection (not all surgeons were doing sentinel nodes back then). 4 rounds of AC chemo (every 3 weeks, no dose dense back then), 25 (?) rounds of radiation therapy (how cool that I am forgetting some of the details!), followed by 5 years of tamoxifen hormonal therapy. Seven years after BC, and after a positive BRCA test, I had my ovaries and tubes removed., Eight years after I had bilateral mastectomies with immediate reconstruction.
Are there any things you did during treatment that you wish you hadn't or are there things you wish you had done? I wish I had been able to have acupuncture treatments during my chemo treatments. I hear they are a great form of complementary medicine. I wish I had pursued the BRCA testing at the time of my initial diagnosis. Some of my surgery treatments may have been different, and if I had mastectomies at the time, I would not have had radiation therapy. I still wonder if someday I will be dealing with after effects from that treatment.
Do you have any long term side effects? Hard to say. Chemo brain, or just perimenopause, and then surgical menopause.
Tell me about your family. I'm single with no kids.
Did you have a family history? Did you/have you had the BRAC test? No obvious family history. Was told I had a 10-12% chance of being positive. Was testing 7 years after cancer and found that I was BRCA2+. It was hidden in my dad's side of the family. Small family, mostly men who died young. Few cousins, all male. One cousin died of melanoma in his mid thirties. Don't know if he was BRCA2+. My dad had prostate cancer and then developed a new primary lung cancer. He lived with stage IV NSCLC for 26 months. He was too stubborn to die. He said he wouldn't die until the Red Sox won the World Series. Darn those Red Sox!! But it did make a very ill man, very happy!
Are you involved with other cancer organizations? Yes. I have worked as a consultant with Breast Cancer Network of Strength (formerly Y-ME). I am currently a Colorado Outreach Coordinator for FORCE: Facing Our Risk of Cancer Empowered, I have had some involvement with the Colorado Cancer Coalition's Breast Cancer Task Force (a state organization).
Do you attend a lot of conferences? I tend to go to two or three a year, when I can get scholarships.
What do you get out of attending events like this? There are several answers to this question. First, some conferences have excellent speakers and workshops. I learn a lot about my own cancer, but also I learn a lot to help others (e.g. the clients that I work with in my private counseling practice, people in my support groups, people I interact with as an Outreach Coordinator, people I meet in online communities). I consider myself a cancer navigator or resource person, and I find the information gleaned very helpful. I also enjoy the camaraderie and sisterhood I find at Breast Cancer conferences. It is energizing to be with others who understand your experience and challenges. I always enjoy the expos and meeting the vendors and learning about other organizations and resources that are out in the world for people living with a breast cancer diagnosis (my resource person tendencies are showing!).
Do people in your life understand why you attend these? Probably they do not understand entirely. Why would you want to hang out with breast cancer survivors ten years after your initial diagnosis? Even some of my local breast cancer buddies don't understand it. It's over, and they have moved on, and they wonder why I haven't moved on.
If you met a young woman who was diagnosed today what advice would you give her? I would encourage her to be informed and aggressive about learning about her BRCA status, before making surgery and treatment decisions. No one thought I would be positive, and they poo-pooed my concerns about being pre-menopausal with active ovaries. I would encourage young women to be their own advocates, and learn as much as they can about YOUNG breast cancer. Most research is based on older, post-menopausal women, so it's important to bear that in mind. First and foremost, I would encourage all young women with breast cancer to visit the YOUNG SURVIVAL COALITION website. They can find oodles of information pertinent to young women who have breast cancer. The message boards offer a great online community of young women. Visit the boards, read and participate as much as you are comfortable. Reading the messages normalizes the experience of being a young breast cancer survivor. I have visited other breast cancer message boards, but found the most comfort and understanding from the online YSC community. An added perk is that at the annual Young Survivor's Conference, your online friends become your friends in real life!!
Tell me anything else you want to share, personal mantras, goals, advice, etc.
There is so much I can say, that I don't know where to start! I'll keep it brief. My two mantras are "Stand Strong," and "You are stronger than you think you are."
I also recommend using guided imagery while going through a cancer experience. I used the CDs (they were tapes back then) from Belleruth Naparstek at Health Journeys. There are many cancer related CDs offered. My favorites were her CDs for people going through chemotherapy and surgery. I also liked the CD for Fighting Cancer (general), and I also like her tapes for General Well-Being and Anxiety. My advice to all young breast cancer survivors is to be "Gentle with Yourself." And remember that asking for help, and seeking counseling during these challenges is an act of courage and self-love.
Thanks for sharing your story Bethany. I'm looking forward to seeing you in Atlanta this weekend. If you want more information about breast cancer and young women visit the Young Survival Coalition .