Recently I read an article that made my blood boil. It was a study of survival data on metastatic HER2+ breast cancer patients who had been treated with the standard protocol of Taxane plus Carboplatin chemotherapy plus targeted therapy with Herceptin. (Perjeta wasn’t available when this study started.)
“Median time to progression was 10.8 months. Participants achieved a median overall survival of 39.8 months. Percent one-year survival was 92.5%. A subset of patients (10%) receiving trastuzumab in the metastatic setting have achieved long-term survival beyond 20 years.”
But they didn’t ask the question about what differentiated the long-term survivors from those who made it to the median survival of 39.8 months. Wouldn’t you want to know?
Of course, Perjeta has improved survival rates, and I had the benefit of that drug until I stopped it a year ago due to side effects. And obviously the introduction of Tyrosine Kinase Inhibitors (TKIs) like Tucatinib and Neratinib as well as Antibody-Drug Conjugates like Kadcyla and Enhertu have given women more options and extended survival rates.
But shouldn’t the goal be to achieve full remission and keep Herceptin working long term without going from one line to the next?
As someone who has reached the 9-year mark since achieving NED from a metastatic recurrence as well as approaching my 13-year anniversary of my initial Stage II diagnosis, I was inspired to put down my thoughts on why I’ve been one of the “lucky ones” to surpass the average survival of 39.8 months.
I just completed this Breast Cancer Outliers Study questionnaire (and I urge all of my followers who have had a breast cancer diagnosis to do the same so we can make our choices known). I hope the researchers read my comments at the end where I explain about my practices that are not included in their questionnaire.
What I See as My Key Factors for Long-Term Remission
Put together comprehensive team. I didn’t do this as much for my initial diagnosis (at least not until everything went sidewise and I was left with chronic pain and neuropathy). But when I discovered I had a recurrence I had luckily switched to a supportive conventional oncologist who provided access to Herceptin and Perjeta, then I found a private clinic where I got low-dose chemotherapy with the drugs proven to work against my cancer (paid out of pocket for the testing and this treatment). I also continued work with integrative practitioners who guided my protocol choices (also out of pocket) and started researching to become more knowledgeable about breast cancer pathways. As much as all my practitioners were helpful, I took responsibility for charting the course of my protocol.
Get the right treatment in the first place. I did this by finding an oncologist who supported my choice to get chemo-sensitivity testing to find the best drugs for my cancer (hint: they weren’t the standard of care first-line for a HER2+ recurrence). He couldn’t give me that treatment but didn’t “fire me” for seeking it elsewhere. He also recommended and got insurance to pay for molecular testing of my tumor to make sure Herceptin and Perjeta were the right targeted treatments rather than Lapatinib, the only TKI available at the time (we now have Tucatinib and Neratinib.
Recognize emotional trauma and start to work on it. Forgiveness work was big for me, but healing emotional trauma is a lifelong process. I continue to seek out new practices and therapies.
Exercise at least five days a week for at least 30 minutes. This can be challenging because of my physical disabilities, chronic pain, and busy professional life but I’ve made it a priority because of the evidence that exercise is so important in maintaining remission.
Adopt a daily stress management program that centers on mind-body techniques like meditation. Again, not easy to squeeze this in but I prioritize stress management and try to do my meditation early in the day so it doesn’t slip by. Research is beginning to identify the biochemical signals caused by chronic stress as a contributor to cancer progression.
Learn to listen to my inner voice or spiritual guidance rather than only external messaging. This is a tough one for me. I love to research and debate all the possibilities. But I know that developing my inner voice is an important part of this journey and will ultimately guide me to the right choices. I love the work Abbey Mitchell has introduced me to during her Emotional Transformation sessions on the Radiant Healing Together platform.
Focus on a low glycemic diet with lots of plants and healthy fats plus quality proteins to build lean muscle mass, which helps keep blood sugar stable. Research in this area is mixed and dietary patterns are difficult to study. But we know that blood sugar plays a role in recurrence risk. As a nutritionist, I’m well suited to this task but even I am constantly challenged to stay on the path. For example, I’ve always been attracted to sweet things so I’ve learned how to have my treats in a healthier way.
Stop or mitigate exposures to environmental toxins in diet, personal care products, household products, water, and air and implement a comprehensive detox protocol. The connection between toxic load and recurrence risk hasn’t yet been established but we know that anything the damages DNA will increased risk of cancer. My work on detoxification is continuous and is guided by a naturopath. I had many toxic exposures during my life and am continuously exposed to glyphosate living in the beautiful Sonoma wine country. I support my body in detoxing my daily exposures through sweating, detox teas and juices, a comprehensive supplement regimen, and sometimes IV supports.
Heal damage to the mitochondria and gut and that was both pre-existing and compounded by chemotherapy. Gut health is key to immune health, and healthy mitochondria don’t create cancer. This is another ongoing process that often feels like one step forward and two steps back. I’ve done gut function and microbiome tests several times to see where my gut needs support. I’ve optimized my mitochondria with a nutrient-rich diet and supplemental support where needed. I invested in an EMF specialist to advise on how to reduce those damaging exposures in my home.
Take 15 g of Pectasol C every day for the first five years of remission. Though most research for breast cancer is limited to preclinical, there have been clinical trials in prostate cancer. Pec-C targets multiple pathways related to metastasis and is recommended during and for a period of time after treatment. I hated taking Pec-C and the expense was significant, even with my professional discount! I found that mixing it into Good Earth Sweet and Spicy tea helped make it more palatable but I’m happy to be past that period of my life.
Establish a comprehensive supplement and off-label drug protocol to block the pathways that HER2+ breast cancer uses to grow and to help reduce resistance to targeted therapies like Herceptin. Doing this research has been a huge part of my contribution to my community. I created a spreadsheet that I share with all my members as well as included this information on the Breast Cancer Pathways worksheet.
Focused on doing work that is fulfilling and meaningful, rather than grinding through a job that is unsatisfying. I don’t have personal experience with a grinding job as I loved the work that I gave up after my kids came along. But when it was time to go back to the workforce I knew I wanted to do something professionally that contributed to others’ well being. The Radical Remission Project lists a strong reason for living as one of the 10 healing factors, and my work in the community gives me that and more.
Learn to manage the stress from personal relationships that aren’t the most positive, but can’t be removed. And focus on new relationships that provide joy. I’ve made so many amazing friendships through my connections in the online groups. I consider these some of my most supportive relationships, and I cherish them.
Practice gratitude every day! Something as simple as waking up to a blue sky with birds singing is something I took for granted in the past.
