October Is Breast Cancer Awareness Month! To celebrate and honor everyone touched by breast cancer, one of our team members bravely shares her journey, including her family’s battles with cancer, genetic testing, and preventive measures against breast, ovarian, and uterine cancer. She also walks us through some of her struggles along her journey and how her care team helped advocate for her when she felt like she wanted to give up.
At Sport & Spine, our admiration for women knows no bounds, and we hold a special place in our hearts for every individual, regardless of gender, who has been impacted by breast cancer. We encourage you to take proactive steps in understanding your own risk, taking action, and advocating for yourself. Always remember that we stand ready to provide support for pain management and rehabilitation should you ever require it.
Typically, when the topic of breast cancer awareness arises, our thoughts often gravitate toward survivors and those who are thriving with this terrible disease. However, in recent years, the term “previvor” has become an increasingly recognized term. A previvor is someone who has an elevated predisposition to being diagnosed with cancer due to a risk running through their family, such as a genetic mutation.
My Journey as a Breast Cancer Previvor
My name is Jenna, and due to a BRCA2 mutation and a strong family history of cancer, I am a proud previvor. I share my journey on Instagram to help advocate and encourage other women to take charge of their health; no matter what route they choose. In 2019, I was asked to write a blog post about my journey for Humor Beats Cancer. That blog is my journey leading up to my preventive surgeries, including why I went through genetic testing. My story continues here.
Dealing with My Insurance Provider
My mastectomy was originally scheduled for December of 2019, but the day before, I got a call from my breast surgeon’s team that they still had not gotten approval from my insurance company and asked how I wanted to proceed. I had no idea it was still pending approval and was not mentally prepared for a delay, so I was a mess!
I was sitting on my kitchen floor, not knowing what to do, and finally remembered that my breast surgeon followed me on Instagram. I messaged her. She suggested we play their game… she suggested I go in that next morning and as we continue to call in for approval as we slowly prep me for surgery.
That next morning, we drove an hour to the hospital, and immediately my support team, a friend in the insurance industry, and my surgeon’s teams were all calling my insurance company for approval. After more than an hour of calls, I remember having my family, my breast surgeon, and my plastic surgeon all standing around my prep bed after surgery was scheduled to begin, not knowing what would happen.
About an hour later, my breast surgeon made the painful decision to cancel. They had me change back into my street clothes and on my way out the hospital gave me a gas card; probably because they felt so bad for me. Instead of going home, we went to Nutz Deep II and had breakfast and Bloody Marys. Not even an hour later, while we were still eating, my insurance company called me to approve my surgery. Go figure.
Unfortunately, this wasn’t the first issue I had with this insurance provider, and thanks to my incredible care team who helped me navigate those issues and advocated for me, I remained diligent with my preventative care. It would have been easier to just give up, as I had other services denied, such as my first mammogram when I was 26. Thankfully, my care team was there for me every step of the way, my OB even wrote to my insurance company explaining why a 26-year-old needed to have a mammogram and got it approved for me.
Getting a Mastectomy and Breast Implants
On January 14, 2020, I finally underwent a prophylactic double mastectomy with immediate reconstruction to reduce my 80% risk of developing breast cancer down to about 3%.
In the OR, my amazing breast surgeon, Dr. Seydel removed all of my breast tissue, and my equally amazing plastic surgeon, Dr. Harl put in my implants. Because I had a breast reduction prior to my mastectomy in order to spare my nipples, Dr. Harl sat me up in the OR and checked the blood flow to the nipple region and saw that the blood flow was compromised.
Dealing with Necrosis
Before I even woke up, his team surprisingly had insurance approval for 30 hyperbaric chamber dives. My first dive was that very next morning before I was even discharged. I was fitted for a helmet I was to wear during my dive that consisted of a plastic dome and a ring that went around my neck with a rubber seal that was cut to fit. They then checked my blood pressure, ears, and temperature before rolling me into a chamber room.
Inside was a handful of older patients, most of whom had wounds from diabetes. There was one open recliner, just for me. I moved over to my recliner, had leads put on my chest and back, blankets on my lap, and a pillow under each arm for comfort. We watched an old western movie; it was the most boring 2 hours of my life. Through my time in treatment, I eventually made friends with a lot of the staff and regular patients, though the dives themselves were always kind of annoying.
To start a “dive”, the team shuts the air-tight door that looks like it belongs to a submarine. The dive begins as they slowly adjust the pressure of the room to 140 kPa. Once there, our helmets are put on us and pure oxygen is pumped into each patient’s helmet for 45 minutes. We then get a 10-minute “air break”, and then another 45 minutes of oxygen.
Once complete, the room slowly goes back up to the surface (it’s kind of like scuba diving), we get wheeled out of the chamber, vitals checked again, and you go home. I had to do this Monday-Friday for about 34 dives total and only stopped when COVID-19 hit and restrictions were put into place.
Healing After Surgery Took Longer Than I Expected
In addition to the necrosis, there was one incision that would not heal. I had to get it restitched a handful of times, and during that ordeal, I dealt with a skin infection in that same breast. The oral antibiotics weren’t working, so I was admitted to the hospital for an IV treatment that was supposed to be only a couple of days. I ended up staying a full week.
After that, we decided it was best to remove the implant in that breast and let my skin heal. An expander was put in and when healed, we slowly began to fill the expander until my skin was stretched enough to safely put an implant back in.
My expander was put in only days before COVID-19 shut the world down, and I was stuck with one breast for far longer than I should have because my expander fills were not considered “necessary”. Finally, in July 2020, I was able to have my new implant placed, and things have been great ever since!
I had one breast revision and fat grafting surgery in August 2022, which was easy, and on September 21, 2023; I had a hysterectomy and oophorectomy to reduce my 50% risk of ovarian cancer to zero.
Preparing for a Hysterectomy
When planning for my hysterectomy, it was a no-brainer that my OB, Dr. Stoffel would be my surgeon. This woman has been part of my BRCA journey since before it began and helped me welcome both of my babies into this world. She’s the one who made me take my mutation seriously and go to my screenings. She advocated for me when I didn’t want to fight for myself. I don’t know what I would have done if I did not have someone like her in my corner.
My Breast Surgeons Advice for patients with a Family History of Breast or Ovarian Cancer
I recently had the opportunity to sit down with my breast surgeon, Dr. Seydel, and ask her a few questions to share with anyone dealing with a similar situation, struggling with insurance, or what to do if you are at high risk for cancer.
JB: Thank you for taking time from your busy day to chat with me. What is the standard protocol for someone with a history of cancer in their family?
AS: Unfortunately, Jenna, I don’t think there is a standard protocol. More education needs to be done for the frontline providers to know who to refer with a family history. We have clear guidelines for referral to genetics for patients with a family history of cancer who meet criteria based on individual cancers. Ideally, we want to see these patients BEFORE their cancer diagnosis so we can work together to develop a screening program or risk reducing strategy for them. But patients with a family history of breast or ovarian cancer in a first-degree relative (parent, child, or sibling) should be seen in a high-risk breast clinic for a discussion of genetic testing and to develop a screening strategy that is unique to them.
JB: What should a patient do if they are being recommended for preventative screening due to an increased risk of cancer, but their insurance denies it?
AS: This can become particularly challenging, and most patients will proceed without additional imaging because the cost can be quite prohibitive. Even with insurance, at times, the out-of-pocket expense for a screening breast MRI can approach $1,500. This cost comparison is significant when we consider the very low or no cost for screening mammography. I’ve had patients express to me that they would rather ‘put braces on their kids’ teeth’ than get an MRI, and I understand that.
Currently, there is a bill at the capital, SB121, aimed at getting insurance companies to cover the cost of enhanced screening when it is recommended for women with dense breasts and/or an increased risk for breast cancer. Supporting this bill, contacting your insurance carrier, and reaching out to your senator are proactive steps patients can take to make a difference.
JB: What should a person do who is struggling to get insurance to cover necessary preventative screening and/or surgeries?
AS: If you are struggling to get insurance coverage due to your age or medical history, I would recommend you start by gathering your medical records and consulting with your doctor for specific recommendations. Thoroughly review your insurance policy to understand its coverage and guidelines regarding preventive care for breast cancer risk.
Write a compelling letter emphasizing the medical necessity of these measures, stressing their cost-effectiveness compared to potential treatment. If applicable, request pre-authorization and be prepared to navigate the appeals process if your initial request is denied. Consider involving a patient advocate or support organization for guidance, and always stay informed about your situation.
JB: Do you have any stories or insight from your vantage point regarding my story that you want to share?
AS: I was extremely impressed by your ability to advocate for yourself especially when faced with barriers to your care. I would like to see a system that proceeds without those barriers as not every patient can speak out as effectively as you have.
I also remember that you were committed to having a nipple sparing mastectomy, even though that meant you needed a breast reduction before your risk reducing mastectomy. You asked insightful questions and had a good support system to start. It is always disheartening as a surgeon to see a patient’s support disappear after the initial consult and early post-op period. The operation for risk reduction is entirely elective and it is important for patients to have strong support in place.
JB: Finally, what is one thing you wish everyone knew going into preventative screening?
AS: Patients need to have an understanding of their risk and thoroughly understand their options. For breast cancer risk, there are two strategies — risk reduction and enhanced surveillance — which are often approached concurrently. Recommendations depend on an individual patient’s risk tolerance. It is important to note that a woman’s risk is not reduced to zero following bilateral mastectomy. But we can achieve a significant risk reduction. Additionally, following a risk reducing mastectomy, patients do not need routine imaging. Annual clinical examination, however, is still recommended.
JB: I heard you recently completed the 60 mile Susan G Komen walk in Chicago and that your team raised over $70,000 for breast cancer research! That is incredible! Will you be doing it again next year?
AS: Yes we are walking again in 2024, but this time in San Diego! Our team raised the most money as a group for the Chicago event, and our goal is to be the team with the most money raised for San Diego, too!
Team Hakuna Ma Tatas
If you want to support Dr. Seydel’s 2024 Susan G Komen team, links to their fundraising pages can be found here and here.
Click here to learn more about this great event.
If you are just starting out on a similar journey or struggling with insurance, my advice is to not give up even when it feels impossible! Continue to advocate for yourself and lean on your care team if you must. They are there to help you get the care you need and can help you with any insurance issues as well. Also, always trust your gut.
How Physical Therapy Can Help
I recently had the privilege of listening in on an enlightening conversation between Dr. Seydel and Merrie at Sport & Spine. They delved into the world of breast surgery and the vital role physical therapy can play not only post-op, but also pre-op! I wish I had known the benefits of physical therapy in my case before I started my journey to previvorship. Don’t miss out on this very informative video – click to watch now!
If you are ready to start your journey to living your life again, schedule an appointment with Sport & Spine Physical Therapy.
