Episode 95

full
Published on:

19th Aug 2024

BRCA 1 Gene Mutation; Kayla Connick Shares Her Story

*TRIGGER WARNING: This episode can be raw and descriptive at times. For anyone who might be upset by conversations about the specifics of breast surgery and reconstruction I just want you to be aware. Kayla expresses herself in a very frank, positive and humorous way so hopefully you will be able to receive her story as a celebration of the human spirit under very difficult conditions and feel empowered.

In this episode I’ll be speaking to Kayla Connick. Kayla is a Music Therapist who I had the pleasure of interviewing for my 11th episode.  In recent years, Kayla discovered that she carried the BRCA 1 gene mutation that can lead to breast, ovarian and other cancers.  Today Kayla generously, and bravely, shares her experience from discovery to pre and post prophylactic, or risk reducing surgery to save her life.  And while her battle continues, she agreed to this interview in hopes that her story might help others.

summary

Kayla shares her experience of discovering that she carries a pathogenic mutation on the BRCA1 gene, which puts her at a high risk for breast and ovarian cancer. She found out through a consumer genetic test and confirmed the results with a genetic counselor. Kayla discusses the initial shock and the considerations she had to make regarding preventive surgeries and fertility preservation. She also reflects on how the news affected her relationships and how she found support from her current partner. Despite the challenges, Kayla feels empowered by the knowledge and sees it as an opportunity to take control of her health. Kayla discusses the importance of being proactive and advocating for oneself when it comes to prevention and early detection of cancer. She emphasizes the need to find a good healthcare team and genetic counselor who can guide and support individuals through the process. Kayla also shares her experience with the reconstructive surgery after her mastectomy, highlighting the importance of finding a plastic surgeon who is ethical and cares about the patient's health. She encourages individuals to do their research and make informed decisions about their treatment options. In this conversation, Kayla discusses her experience with breast cancer and the decisions she made regarding surgery and risk reduction. She talks about the emotional and physical challenges she faced, as well as the importance of having a strong support system. Kayla also emphasizes the need for improved screening methods and proactive self-checks. She shares her journey of body acceptance and the impact of the surgeries on her body image. Kayla concludes by expressing her desire to provide music therapy sessions for BRCA women and encourages others to cut toxic people out of their lives.

keywords

BRCA1 gene, genetic testing, pathogenic mutation, high risk, breast cancer, ovarian cancer, preventive surgeries, fertility preservation, relationships, empowerment, cancer prevention, early detection, advocacy, healthcare team, genetic counselor, reconstructive surgery, mastectomy, plastic surgeon, research, informed decisions, breast cancer, surgery, risk reduction, support system, screening methods, self-checks, body image, music therapy, toxic relationships

takeaways

  • Genetic testing can provide valuable information about an individual's risk for certain diseases, such as cancer.
  • Discovering a pathogenic mutation on the BRCA1 gene can be shocking and overwhelming, but it also presents an opportunity to take proactive measures.
  • The decision to undergo preventive surgeries, such as a double mastectomy and hysterectomy, is deeply personal and requires careful consideration.
  • Support from loved ones and finding a partner who accepts and understands the situation can be crucial in navigating the challenges of a genetic predisposition to cancer.
  • Having knowledge about one's health can provide a sense of control and empowerment in the face of a potentially devastating diagnosis. Be proactive and advocate for yourself in cancer prevention and early detection
  • Find a good healthcare team and genetic counselor who can guide and support you
  • Do your research and make informed decisions about treatment options
  • Choose a plastic surgeon who is ethical and cares about your health Having a strong support system is crucial when facing a cancer diagnosis and undergoing surgeries.
  • Improved screening methods and proactive self-checks are necessary for early detection of breast and ovarian cancer.
  • Body acceptance and self-image can be challenging after undergoing surgeries, but having a choice in the process can lead to a more positive outcome.
  • Cutting toxic people out of your life is important for emotional well-being and recovery.
  • Music therapy can be a valuable tool for healing and coping with the emotional challenges of cancer.

titles

  • Empowerment Through Knowledge: Taking Control of Health
  • Navigating Preventive Surgeries and Fertility Preservation Proactive Advocacy for Cancer Prevention
  • The Importance of a Supportive Healthcare Team Healing Through Music Therapy
  • The Importance of Support and Self-Advocacy

Sound Bites

  • "It was shocking. It made me feel kind of liberated, you know, having my own health information."
  • "When you have that knowledge, it gives you some sense of control."
  • "There is power in knowledge, even if it's something as potentially devastating as cancer."
  • "You really have to be your own advocate"
  • "Do your homework...get consumer tests"
  • "Assembling your team...find a good plastic surgeon"
  • "I think I started real as things were getting done."
  • "The mastectomy is the easy one compared to what's to come in like five years."
  • "If I don't work, I don't get paid."

Chapters

00:00

Introduction and Background

03:02

Discovering the BRCA1 Gene Mutation

09:53

Considerations and Decision-Making

18:55

Impact on Relationships

22:02

Initial Reaction and Coping

25:57

Empowerment Through Knowledge

27:00

Proactive Advocacy for Cancer Prevention

33:18

The Importance of a Supportive Healthcare Team

41:07

Making Informed Decisions about Treatment Options

48:33

Choosing an Ethical and Caring Plastic Surgeon

50:19

Starting the Journey

55:33

Coping and Acceptance

57:34

The Importance of Openness

58:52

Improving Screening Methods

01:04:07

Body Image and Acceptance

01:06:08

Navigating Relationships and Support

01:13:17

Healing Through Music Therapy


kconnick@makingwavesmusictherapy.com

https://www.makingwavesmusictherapy.com

Instagram: kaychronn, makingwavesmt

Facebook: Kayla Connick

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Special Ed Rising; No Parent Left Behind
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