Feeling Empowered Through Genetic Testing

Adam Walker (00:03):
From Susan G Komen, this is real pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room. On last week’s episode, Ashley Deadman shared her experiences as a young caregiver and how it impacted how she approached her own health. Today, we’re going to continue our conversation with Ashley to talk about the impact of being born into three generations of women affected by breast cancer, losing her mother to the disease and watching her father battle prostate cancer. Shortly thereafter, Ashley was 22 years old and fearful that she was next. It was then that she took matters into her own hands. And immediately reached out to her doctors who suggested genetic counseling and screening for the BRACA genetic mutation. Today we’ll learn from Ashley, what those tests found, what she did next and how it changed the course of her life. Ashley, welcome back to the show.

Ashley Dedmon (01:00):
Thank you, Adam. It’s great to be back

Adam Walker (01:04):
Well, Ashley, I mean, listen, talking to you last week about your experience as a caregiver was so inspiring and your, your dedication to family is so inspiring, but, but there was something that you, that you said several times that I think is that what sparked this conversation, which is you felt like cancer was coming for you next, right. And that’s what led to here. So we, we talked about losing your mother to breast cancer, watching your father battle prostate cancer. Tell us about how that led to this decision to undergo genetic testing and what the test results found.

Ashley Dedmon (01:36):
Absolutely. So definitely losing my mother to stage four metastatic breast cancer and my father battling prostate cancer, but it was also knowing my family history on my mother’s side having three generations of women who were diagnosed with prostate cancer and it’s important to not only know your mother’s side family history, but also your fathers as well. And so knowing my family history and knowing that my mother and father both battled cancer, I felt that I was next. I really felt like cancer was coming for me. And so I had questions and I knew I needed answers. And that’s when I reached out to my doctor to to help get those answers. And so that’s when she we had the conversation around genetic counseling and genetic testing.

Adam Walker (02:36):
That’s great insight. I know you were full of questions and fear. I, you had the conversation about it, what happened next?

Ashley Dedmon (02:44):
So, yes, after updating her on my family history because you know, our family history changes every, you know, even annually, every time we go to the doctor. So I wanted, it was important that I updated her on my family history. She knew about my diagnosis, but she hadn’t heard about my father’s diagnosis. And so with that information she felt that it was best that I go through genetic counseling. And then genetic testing with genetic counseling, I met with a genetic counselor who talked to me about the BRC gene mutation and what the testing would look for. And so at the age of 22, I found out that I was BRC two positive which meant that I had a high risk for breast and ovarian cancer and elevated risk for other cancers.

Adam Walker (03:39):
And so I would imagine that leads to action. We talked in our last episode about how you’re, you’re clearly a person of action. So what was the plan that you ultimately developed with your doctors and what were the drivers behind some of those decisions?

Ashley Dedmon (03:54):
So, Adam, just to be, you know, transparent, I was really hesitant in the beginning because I had just lost my mom and I was really in denial. I was angry. And so she told me that I would begin seeing a high risk oncologists to monitor my breasts and ovarian health going forward. And I went to go see my high risk oncologist and I walked in the office and I walked out because I just felt like this wasn’t for me. They had the wrong person again. I, I was just very angry and upset and confused. And so I eventually did go back to my doctor’s office. And I actually met with my doctor and it was, then my doctor really got to know me. She took the time to know what was important to me. She knew that I wanted to get married and have children. And it was there. She and I began to explore all of my options, all of my risk management options to be able to monitor my breast and ovarian health. It was there. She also answered any questions that I had.

Adam Walker (05:07):
Hm that’s fantastic. That’s great. And so you went there, you got to the appointment, which is important, even if it takes a little bit of time and, and tell us what were the next steps that you took in, in your journey then?

Ashley Dedmon (05:23):
So at that time, when I met with my doctor, we discussed increased surveillance, which would aggressively monitor my breast and ovarian health. We talked about hormone therapy and we also discuss prophylactic or preventative procedures. And at that time I felt that increased surveillance was the best decision for me at that age. And so for about a decade, I did increase surveillance that aggressively monitored my breast and ovarian health. And then after getting, and having my first child and breastfeeding my first child I saw that increased surveillance was no longer an option because of the commitment that it took to go to the doctor’s offices as frequently as I had to. And so my husband and I had the conversation about exploring other options and we talked about it, we prayed about it. We asked the doctor, the doctors more questions. And and then in December, 2016 I had a preventative, double mastectomy.

Adam Walker (06:33):
Mm. So tell us about the emotional and mental impact of having that preventative, double mastectomy. What, what did, what did that, how did that affect you as a woman?

Ashley Dedmon (06:45):
So, first I, I questioned if I was making the right choice and I knew I was making the right choice because I knew my family history. I knew that I had genetic testing, which confirms that I was a carrier of this mutation. And I knew where my risk were. And so when I kind of just talk myself through that, I knew I was making the right decision. But then after my procedure, I began to question my womanhood. I began to question myself image and my self worth. I had always been a confident woman, but at this moment immediately after my surgery, I, I had delayed reconstruction. I didn’t have any breasts. And so I wondered was I beautiful? Was I still attractive to my husband? And, and I knew that I was, I knew that, you know my self-worth and my confidence truly define who I am as a woman and that my breasts were a piece of me.

Ashley Dedmon (07:53):
And so but also the emotional and mental impact continued in that I thought I would be okay, not breastfeeding any future children. And I have a 16 month old now, and I was not able to breastfeed my 16 month old. And I thought then when I made my decision to have my mastectomy, that I would be okay with that, but you really don’t know the impact of that decision until you’re faced with it. And so but I look back on it and I know I made the best decision and although I didn’t get a chance to breastfeed my second baby, it did not change our bond. We have a stronger bond without risk eating.

Adam Walker (08:49):
Yeah. Yeah. That’s, that’s wonderful. And so you mentioned your children tell us how your children factored into some of your decision-making along this process.

Ashley Dedmon (09:00):
Absolutely. you know, losing my mother, Adam was the defining moment in my life. Genetic testing was the pivotal moment in my life. It has it has changed the trajectory of the impact of this disease. On my family. It has created a, a blueprint for my standard of care and for my daughter’s standard of care breast cancer, aggressively attacks, regenerations of women in my family. And through genetic testing, we can now aggressively attend breast cancer through education awareness and risk management. And that’s how I approached this with my daughters the importance of their health, the importance of their breast health and making them aware as they as they get older of their family history of breast cancer, as well as this mutation that I carry and their potential risk of carrying this mutation because they have a 50, 50% chance of carrying it.

Adam Walker (10:11):
But, you know, it occurs to me because you’ve done, you’ve been so proactive and so thoughtful in, in this process of, in caring for your own health, that the Dell be even more proactive and even more thoughtful and caring for themselves going forward as well. And hopefully that will just continue for, for generations increasing health for your entire family. Right?

Ashley Dedmon (10:33):
Absolutely. Absolutely. And I have to say my father got his genetic testing about a month ago. And I was super excited about that because you would think because of the multiple cases of breast cancer on my mother’s side that I inherited my gene from her. But my dad had prostate cancer and that is a when your BRC two positive prostate cancer is the cancer linked to that mutation. So he did genetic testing and so with his results, we were able to conclude and confirm that I did repeat my mutation from my mom.

Adam Walker (11:16):
Okay. Wow. That’s great. I mean, it’s important that we, then we know and understand these things so we can take better care of our health and our loved ones. Right. So last question, Ashley, I understand that you’ve written a children’s book. I would love to know more about that. Tell me about that.

Ashley Dedmon (11:34):
So I wrote the big discovery during my recovery of my preventative mastectomy as a way to express myself. It was challenging to explain to my then two year old Hawaiian. I couldn’t hug her, why I couldn’t hold her, why I couldn’t pick her up, why I couldn’t just love on her the way wanted. And I also reflected on the time when my mother was battling her journey and I would always ask, what is the hardest part of your journey? And she would always say, Ashley, it was telling you that I had cancer. It it’s telling you and sharing, sharing with you the unknown. And so the big discovery serves as an educational tool to assist family and children and navigating through a breast cancer journey. Although the treatment process is introduced, it is left open so that families can navigate through their own options and make informed health decisions. I’m super excited because my book has inspiring real life cancer survivors stories as well as a glossary and open-ended questions to help prop for dialogue and check for understanding. And so the overall goal is to really, you know, how do you tell your child, you have cancer and really simply put it’s in your own way. Every child is unique and different. But it’s so important to know that our children come on this journey with us. And so it’s essential to focus on their emotional, mental, and social health.

Adam Walker (13:11):
That’s right. That’s right. Wow. That sounds amazing. And I’m, and I’m glad that you’ve done that. And if our listeners wanted to find your book to be able to help explain to their families, where would they do that? Okay. So it’s a, the title is the big discovery,

Ashley Dedmon (13:27):
The big discovery yet

Adam Walker (13:31):
By Ashley Dedman, the big discovery on Amazon by Ashley then. Okay, I’m going to look that up. As soon as we finish this recording, I’m excited to check that out. I love it. Well, Ashley, this has been so helpful, so encouraging, so inspiring and in the way that you care for your family, both your, your parents, and now your daughters is just truly inspiring. Thank you for coming on the show and sharing your story with us today. Thank you, Adam. Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real pink.com and.org for more on breast cancer. Visit komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter at AGA Walker or on my blog. Adam J walker.com.