Patient advocacy shows up in so many meaningful ways, and my guest on this episode of the DiepCJourney® podcast has been part of my own journey since the very beginning. We first connected back in 2015, when I was just starting to write my blog. She offered guidance, encouragement, and wisdom at a time when I was still finding my footing. I’ve followed her story ever since, and her voice has continued to inspire me and so many others. She tells us the challenges of navigating healthcare as a patient advocate.
As a valued member of the DiepCJourney® community, it felt only natural to invite her to share her experience with all of you. I’m delighted to share this interview summary of my chat with Rebecca Hogue, Becky to her friends. She shares her many life transitions from professional work, moving from the U.S. and back to Canada, two breast cancer diagnoses, and the value of being your own best advocate in your healthcare.
Shifting Work as a Patient Advocate
Being nimble in a changing work environment is something people are experiencing. Becky tells us she is in a career shift transitioning from teaching to podcasting and writing. She is currently working on a Master of Fine Arts (MFA) in creative nonfiction and writing her second memoir. After her first self-published book, “Never Thought I’d Want to be a Breast Cancer Survivor,” she describes her next book as a “feel good” book.
Becky has not one but two podcasts! One is on the topic of instructional design. Her latest podcast will be reading chapters of her first book. She chose to do this rather than an audio book to share reflections on how things have changed and are different since her first diagnosis is 2014 when she lived in California. Now living in small town, Nova Scotia and a completely different country, Becky tells us she has that juxtaposition contrasting between both breast cancer diagnoses and feeling like “she was in the right place both times.”
Navigating Her First Diagnosis and DIEP Flap Surgery
Becky and I share a common understanding of going through DIEP flap breast reconstruction. We both had reconstruction in the same month and year, December of 2014. The difference was that this was Becky’s first diagnosis and for me it was my second diagnosis with breast cancer.
She was diagnosed with bilateral breast cancer in June of 2014. Chemotherapy was the first part of her treatment plan. During this time, it allowed Becky to begin exploring reconstruction. Initially Becky was not going to do reconstructive surgery. Her husband had concerns about the length and complexity of the surgery. However, it was guidance from her breast surgeon that lead her to speak with a plastic surgeon about reconstruction.
Becky shares she was concerned about her body rejecting implants based on her current health and other issues she has with reaction to medical apparatuses. Here is an interesting point Becky shares. Since she is Canadian and knowing she would be moving back, the idea of things that don’t have blood flowing through them that close to her body when it is minus ten degrees outside, did not appeal to her.
Details of Becky’s DIEP Flap
Becky’s breast surgeon performed a devascularization of the nipple/areola complex (NAC) a month prior to her DIEP flap so that it was more likely to survive. The next surgical procedure was DIEP flap surgery that was a skin sparing, nipple sparing mastectomy and reconstruction lasting about ten hours total. She spoke to her surgeon and requested a reduction in the size of her breast and tells us she was happy with the results.
She shares a very powerful statement with us about her reaction after waking up from her reconstruction surgery. It speaks directly about the decision to have autologous (using your own tissue) reconstructive surgery.
When I looked down at the surgery because it was my skin, I saw myself.
Although Becky does not have sensation in her breasts, she tells us she is grateful every time she goes to the pool to swim, takes a shower at the gym, and has scars that are very well hidden.
Navigating Healthcare in Two Countries
Becky’s reconstruction was performed in California. She was new to the area and certainly new to the healthcare system in the states. Becky feels very grateful her husband had good insurance and healthcare coverage with his job. This gave her access and choice to good care.
Navigating two healthcare systems and transferring records was not always an easy task for Becky. She shares what challenges she faced and what she did to optimize her own healthcare in two different countries. Her U.S. surgeon told her reconstruction would be covered by insurance. It was a strange concept to her since Canadian healthcare does not involve working with insurance.
The term “wait times” takes on two different meanings between the two countries. Becky tells us in the U.S. wait time involved waiting for insurance approvals. In Canada wait time approvals were overseen by the doctor and not something she had to do as a patient. She tells us DIEP flap is performed in her small province of Nova Scotia and mentions Dalhousie University as one of those hospitals.
Advocacy During Becky’s Second Diagnosis
When Becky had a recurrence, it was in her lymph nodes. She was living back in Canada now. This surgery required a general surgeon. She was able to have it nearby rather than having to travel for specialized surgery like other women have to do in her province for DIEP flap.
She points out “this is where advocating for yourself really makes a difference.” Becky is able to attend retreats with other breast cancer survivors to network with and find out more about what was available in her area. Additionally, she worked with her oncologist in California to write up all the paperwork for a referral to an oncologist in Nova Scotia.
Becky shares a term I am unfamiliar with, “Most Responsible Physician” (MRP). I would like to share this link with the readers to understand more about it.
In the U.S. system I believe these are often called the primary surgeon or physician who are the ones who are the lead physician directing, coordinating, and managing the patients care.
Scanxiety, Waiting, and the Process for Treatment
Becky and I share our experience with scanxiety. When a blood test is off, or when your physician tells you after imaging, “we see something,” the cycle of worry begins. Biopsies, scans, and the actual process of diagnosis is something Becky describes as “painfully slow..” Once she was diagnosed things began to move quickly.
Sending labs to another site, evaluating her CT scan, talking to the surgeon who requested more scans, and waiting to have records released to confirm what would happen next caused a great deal of anxiety for Becky as it does for many people in her situation that are … waiting.
Once it was determined what type of treatment she needed she shares the difference between her Canadian experience and U.S. experience. While living in California during her first diagnosis she describes her chemotherapy as a full day production. They had to drive, park off site, get blood work done before chemo and then have her treatment and drive back home. In Canada, she was five minutes away, dropped off at the door, and when she was done she called her husband to get her to take her home.
The Role of Patient Advocate Continues
We discuss the process of becoming a voice for others, sharing information, knowledge, and navigating systems in healthcare that can be so challenging for those diagnosed with breast cancer not once, but twice. Becky shares how leaving the familiarity of the system she had in California and moving to a smaller province in Canada was a reminder of how important quality of life is to her.
Utilizing her strength and voice as a patient advocate not only for herself but also for others in the breast cancer community is a role she continues to practice. She is a member of online support groups she trusts to share and ask questions regarding her own continued health concerns. What is her advice for others in online support groups?
“Decide who you trust.” There can be a double edge sword seeking advice in support groups. Protocols change. Advice given by someone who had treatment or surgery a few years ago may not be the same now. Becky tells us the lived experience from support groups is beneficial. But, when it comes to medications, treatment, surgery, she tells us to listen to your healthcare team. They are the ones who are there to set you up properly for medical advice.
Connecting with the Advocate Who Continues to Navigate Healthcare
Becky shares some inspiration and advice for those facing diagnosis as we wrap up our conversation. Be sure to listen to the final five minutes of the interview to hear what she has to say. Check out the links in this blog to contact Becky. She is always willing to help when she is not clearing snow and driving a snow plow for her city in Nova Scotia. You can listen to the full interview here.
Terri, this was such a valuable and grounded conversation. Thank you for continuing to create space for these honest, helpful discussions. Marie Ennis-O’Connor