In a nutshell: How I was affected by breast cancer and became a patient advocate. Part one of my personal report based on experiences with the illness.
Out of necessity: My own self-management
My own cancer experiences include caring for my mother, who died from complications following surgery for pancreatic cancer in the U.S., and navigating my own breast cancer diagnosis and treatment in Geneva, Switzerland.
Caring for my mother prepared me to help myself. While participating in both situations, I used the many resources and skills I was lucky enough to have available to me to increase my self-efficacy.
My mother, Joan Ruth Berkey Holm, was a communications specialist and community college professor living in the Virginia metropolitan area, just outside of Washington, D.C. As a way to keep her many loved ones and friends informed during her illness with pancreatic cancer, she asked me to help her create a blogging website.
The site is accessible to anyone through a simple registration process using an email address and creating a password. Navigating the system, you will find extensive blogs chronicling her experiences including the memorial service honoring her life. She and I updated it frequently. We logged over 100 posts over a 6-month period. This preceeded her tragical death. The latter was due to complications following the Whipple operation for pancreatic cancer. The posts capture the personal as well as medical developments. These she wanted to share with anyone who was interested.
During my own struggle with cancer I was extraordinarily fortunate to have a close friend. She was a role-model for me in addressing her breast cancer ten years earlier. She was also well-connected in the cancer support and medical community.
Thanks to my loving family and friends, my educational and professional background and social network, I was able to gather a support system around me. These helped me maximise the self-management of my diagnosis, treatment, and recovery.
Breast cancer is not always a lump!
The majority of breast cancers present as a lump (notably ductal ones developing in the milk ducts) and are visually discovered by women themselves, their partners (see Roth et al. 2002), or their physicians through physical examinations. Approximately 11% are not palpable and/or are first detected through mammograms.
The unpalpable kinds of breast cancer include two types: lobular which develop in the milk lobes (10%) and inflammatory breast cancer which develops on the skin or skin lymphatics of the breast (1%). For further information see cancer.org.
Freeze, fight or flight?
While those three words «you have cancer» affect different people in different ways, when I first heard my doctor say them, my immediate reaction was not a fight or freeze response but more of a flight response … a flight towards information.
For me, gaining knowledge, analyzing data, and learning new things are comforting activities. So to try to answer all the frightening questions surrounding my diagnosis, I launched my own research campaign. Granted I was not a newbie; I had already gone down this information-gathering path on behalf of my late mother’s tragic experience with pancreatic cancer.
In addition, my professional background in conducting global health research gave me the tools and judgment necessary to enable me to filter through the overwhelming amount of information on the internet and navigate the crowded seas of cancer-related websites.
So while this kind of intense delving into facts and figures is not for everyone, for me it provided a grounding to be able to feel in control by:
- contacting cancer-savvy friends to hear about their experiences
- doing my homework to read up on key issues (e.g. cancer.gov/types/breast)
- engaging my doctors by asking a lot of questions and taking notes on their answers
- researching medical options on reputable websites (e.g. breastcancer.org)
- evaluating choices based on my own values
- making informed decisions to meet my personal preferences
Open or controlled disclosure?
Another important decision node for a patient upon hearing the «C-word» is to decide whom to tell and how much to tell. Fortunately, since I was self-employed at the time of diagnosis as a part-time, independent consultant, I did not have much to lose by being open with my employer.
Also, I had a favorable environment to be open with all my family and friends and professional contacts about my cancer. My son was nine years old at the time, and I knew he would take his cues from me as to how to handle it. He had in fact, seen his beloved grandmother die from cancer two years prior, so there was definitely the potential for great anxiety.
However, my situation was quite different and I had every reason to believe I would be fine and conveyed that message to him effectively in my words and actions. My son was a great source of motivation and joy throughout this time, and I think he came through it without much trauma.
My husband is to be saluted for his stalwart love, support and buffering role he played in taking care of our son, while managing his own demanding consulting business. For me, the easier option was being completely honest about my cancer. Rather than investing time and energy in managing who knew what, instead with full disclosure to all on the issue of my breast cancer, I could concentrate my efforts on my treatment and recovery.
Unfortunately this candid stance is not an option for many people who may face social and professional discrimination, societal stigmatism, extreme distress by loved ones, and even personal rejection for being forthright about a cancer diagnosis. For various reasons, several close friends of mine who have cancer, are not able to have the «luxury» of speaking the truth to either their family, friends, employers, or other contacts – for fear of difficulties or even dire consequences. By circumstance of self-preservation or by choice, they must wade through the turbulent waters gatekeeping the disclosure of their cancer, knowing that leaks can always occur.
It was lucky happenstance that allowed me the freedom to reveal my health crisis publically. This unguarded position was a relief for me because it meant I could benefit from generous and caring family members and friends who took care of me during the most difficult times. The openness allowed me to cast my net widely to seek medical and self-care information, referrals, and recommendations from my social network.
In addition, I took full advantage of the psychosocial and physical therapy available to me through the medical community and patient support groups including:
- physical therapy lymphatic drainage
- individual counseling by a breast cancer survivor trained in psychotherapy
- local breast cancer support groups
- exercise classes specifically designed for breast cancer survivors
- on-line support with peers (again, breastcancer.org was a lifesaver for me).
There was no self-management program offered at the time in Geneva. The English Speaking Cancer Association in Geneva (www.cancersupport.ch) currently offers an array of programs including Mindfulness Courses for Cancer Survivors.
The local French-speaking support group, Vivre Comme Avant Romandie, offers many supportive activities but mostly focused on pairing women with experienced survivors.
Results from my self-management program
My self-created program worked well. I healed twice as fast as my doctors had predicted and was participating in active sports and activities three months post treatment.
Within one year I had landed a professional opportunity that met my career objectives. In my spare time I was pursuing a goal of developing a non-profit organization to empower patients through the concepts of P4 cancer medicine, which stands for predictive, personalized, preventive and participatory (Hood et al. 2011). My goal was to get the patient perspective into every aspect of cancer research and clinical pratice.
This drive to give back to the breast cancer community stemmed from my observations during the whole process of diagnosis, treatment and recovery. I spent many hours
- scanning the internet,
- sitting in doctors’ waiting rooms,
- hanging out with other breast cancer survivors,
- taking an exercise class tailor-made for us,
- meeting and talking with other women facing similar dilemmas to hear their experiences, and attending support groups.
The breast cancer survivors I met usually, quite understandably, wanted to get back to normal life and away from the world of cancer. Or else they were so busy and preoccupied with family and work that they had little time to or energy to get involved as a volunteer.
Yet many of the women I met in Geneva did not necessarily have all the advantages I had. As well, they did not come out of their cancer experience feeling particularly empowered.
Through these experiences and encounters, it became clear to me that I was somewhat of an exception. Not many women who experienced breast cancer wanted to continue to deal with it after their treatment. This made me feel sad and lonely as I was hoping
- to band together with others like myself,
- to learn about the medical system and
- find a way to make a difference for the better.
Even though we have probably one of the top quality oncology medical communities in the world, many Swiss patients are still emerging with
- unresolved questions and fears,
- post-traumatic stress,
- negative consequences, and worst of all in my opinion,
- a lack of knowledge and information to empower them for the future.
So I felt empowered by my own self-management process. However, I wondered, would other women in Switzerland also respond positively to such an approach?
This curiosity motivated me to network, attend a forum on World Cancer Day, investigate various patient organizations, and learn about the field of patient advocacy.
Eventually, I found my own path to help others and established an independent, non-profit, volunteer-run Swiss association called Patient Advocates for Cancer Research & Treatment (PACRT).
To be continued in part two of my forthcoming post for this blog!
Tell us your thoughts! Let’s discuss!
- Do you also follow a personal self-management program? What does it include?
- Was your reaction freeze, fight, or flight – or something else?
- How open do you feel you can be about cancer with your family, friends, colleagues, in general?
Source of this entry Careum blog Breast Cancer: How self-management helps
- Krebsliga Schweiz
- Stiftung Krebshilfe Zürich
- Vivre Comme Avant Romandie
- Patient Advocates for Cancer Research and Treatment (PACRT)
- Hood, L., & Friend, S. H. (2011). Predictive, personalized, preventive, participatory (P4) cancer medicine. Nature reviews. Clinical oncology, 8(3), 184–187. doi:10.1038/nrclinonc.2010.227
- Roth, M. Y., Elmore, J. G., Yi-Frazier, J. P., Reisch, L. M., Oster, N. V., & Miglioretti, D. L. (2011). Self-detection remains a key method of breast cancer detection for U.S. women. Journal of women’s health (2002), 20(8), 1135–1139. doi:10.1089/jwh.2010.2493