Young Survivor Interview – Bethany

After Cancer - Now What? — By on February 25, 2010 at 12:34 pm

From After cancer, now what

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, Bethanybr /
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Bethany, how old were you when you were diagnosed- b39/bbr /
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What was your diagnosis?nbsp; bStage I, IDC, 0/12 nodes, lymphovascular invasion, ER/PR+, they did not test for Her2 back then!/bbr /
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What types of treatment did you go through?nbsp; bLumpectomy, 2 re-excisions and axilla node dissection (not all surgeons were doing span class=”yshortcuts” id=”lw_1267046434_8″sentinel nodes/span back then). 4 rounds of AC chemo (every 3 weeks, no dose dense back then), 25 (?) rounds of span class=”yshortcuts” id=”lw_1267046434_9″ style=”border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;”radiation therapy/span (how cool that I am forgetting some of the details!), followed by 5 years of tamoxifen span class=”yshortcuts” id=”lw_1267046434_10″hormonal therapy/span. nbsp;Seven years after BC, and after a positive span class=”yshortcuts” id=”lw_1267046434_11″BRCA test/span, I had my ovaries and tubes removed., nbsp;Eight years after I had bilateral mastectomies with immediate reconstruction./bbr /
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Are there any things you did during treatment that you wish you hadn’t or are there things you wish you had done? bnbsp;I wish I had been able to have span class=”yshortcuts” id=”lw_1267046434_12″acupuncture/span treatments during my chemo treatments. nbsp;I hear they are a great form of span class=”yshortcuts” id=”lw_1267046434_13″ style=”border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;”complementary medicine/span. nbsp;I wish I had pursued the BRCA testing at the time of my initial diagnosis. nbsp;Some of my surgery treatments may have been different, and if I had mastectomies at the time, I would not have had radiation therapy. nbsp;I still wonder if someday I will be dealing with after effects from that treatment./bbr /
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Do younbsp; have any long term side effects? nbsp;bHard to say. nbsp;Chemo brain, or just perimenopause, and then surgical menopause. nbsp;/bbr /
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Tell me about your family. bI’m single with no kids/b.br /
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Did you have a family history? Did you/have you had the BRAC test? nbsp;bNo obvious family history. nbsp;Was told I had a 10-12% chance of being positive. nbsp;Was testing 7 years after cancer and found that I was BRCA2+. nbsp;It was hidden in my dad’s side of the family. nbsp;Small family, mostly men who died young. nbsp;Few cousins, all male. nbsp;One cousin died of span class=”yshortcuts” id=”lw_1267046434_15″ style=”border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;”melanoma/span in his mid thirties. nbsp;Don’t know if he was BRCA2+. nbsp;My dad had span class=”yshortcuts” id=”lw_1267046434_16″ style=”border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;”prostate cancer/span and then developed a new primary span class=”yshortcuts” id=”lw_1267046434_17″lung cancer/span. nbsp;He lived with stage IV NSCLC for 26 months. nbsp;He was too stubborn to die. nbsp;He said he wouldn’t die until the Red Sox won the World Series. nbsp;Darn those Red Sox!! nbsp;But it did make a very ill man, very happy!/bbr /
ul/ulAre you involved with other cancer organizations? nbsp;bYes. nbsp;I have worked as a consultant with Breast Cancer Network of Strength (formerly Y-ME). nbsp;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 span class=”yshortcuts” id=”lw_1267046434_18″ style=”border-bottom: 1px dashed rgb(0, 102, 204); cursor: pointer;”Breast Cancer/span Task Force (a state organization)./bbr /
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Do you attend a lot of conferences? bI tend to go to two or three a year, when I can get scholarships./bbr /
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What do you get out of attending events like this? nbsp; bThere are several answers to this question. nbsp;First, some conferences have excellent speakers and workshops. nbsp;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). nbsp;I consider myself a cancer navigator or resource person, and I find the information gleaned very helpful. nbsp;I also enjoy the camaraderie and sisterhood I find at Breast Cancer conferences. nbsp;It is energizing to be with others who understand your experience and challenges. nbsp;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!)./bbr /
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Do people in your life understand why you attend these? nbsp;bProbably they do not understand entirely. nbsp;Why would you want to hang out with breast cancer survivors ten years after your initial diagnosis?? nbsp;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./bbr /
ul/ulIf younbsp; met a young woman who was diagnosed today what advice would you give her? nbsp;bI 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. nbsp;Most research is based on older, post-menopausal women, so it’s important to bear that in mind. nbsp; First and foremost, I would encourage all young women with breast cancer to visit the YOUNG SURVIVAL COALITION website. nbsp;They can find oodles of information pertinent to young women who have breast cancer. nbsp;The message boards offer a great online community of young women. nbsp;Visit the boards, read and participate as much as you are comfortable. nbsp;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. nbsp; An added perk is that at the annual Young Survivor’s Conference, your online friends become your friends in real life!!/bbr /
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Tell me anything else you want to share, personal mantras, goals, advice, etc. br /
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bThere is so much I can say, that I don’t know where to start! nbsp;I’ll keep it brief. nbsp;My two mantras are “Stand Strong,” and “You are stronger than you think you are.” br /
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I also recommend using span class=”yshortcuts” id=”lw_1267046434_19″guided imagery/span while going through a cancer experience. nbsp;I used the CDs (they were tapes back then) from span class=”yshortcuts” id=”lw_1267046434_20″Belleruth Naparstek/span at Health Journeys. nbsp;/ba href=”http://www.healthjourneys.com/” rel=”nofollow” target=”_blank”bspan class=”yshortcuts” id=”lw_1267046434_21″http://www.healthjourneys.com/span/b/abnbsp;nbsp; There are many cancer related CDs offered. nbsp;My favorites were her CDs for people going through chemotherapy and surgery. nbsp;I also liked the CD for Fighting Cancer (general), and I also like her tapes for General Well-Being and Anxiety./bbr /
bMy advice to all young breast cancer survivors is to be “Gentle with Yourself.” nbsp;And remember that asking for help, and seeking counseling during these challenges is an act of courage and self-love./bbr /
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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 thea href=”http://www.youngsurvival.org/” Youngnbsp; Survival Coalition/a.nbsp;b /bdiv class=”blogger-post-footer”img width=’1′ height=’1′ src=’https://blogger.googleusercontent.com/tracker/4713736175601908568-6438020655551643769?l=www.aftercancernowwhat.com’ alt=” //div
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