Breast Cancer: How self-management helps

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.

How I was diagnosed and treated

The radiologist reviewing my routine mammogram detected an unusual squiggly-shaped thickening of breast tissue in one spot.  She barely glimpsed it on the mammogram but followed up by having me get a magnetic resonance imaging scan (MRI). This made things more visible. Thereafter an ultrasound-guided biopsy was done.

Within a few days the pathology report confirmed it was a rare kind of breast cancer – an invasive lobular carcinoma – rather than the more common ductal breast cancer.

Lobular usually does not present as a lump and therefore could not have discovered by monthly self-exams at this early stage.

The tumor was caught early, categorized as stage I, grade I, which warranted a protocol treatment of a lumpectomy plus radiation. However, the pathology analysis of the material removed from the lumpectomy uncovered that there was more than one small tumor. In fact, one tumor was only partial, meaning the margins were not clean.

The multifocal count was confounded by the fact that lobular often occurs subsequently in the other breast. Therefore the intervention recommended by the interdisciplinary tumor board that reviewed my case, was upgraded to a double mastectomy.

Given the early stage of the cancer and planned removal of all breast tissue, I did not need to have chemotherapy or radiation. However, I did need to go on five years of tamoxifen since I was not yet menopausal. (Tamoxifen blocks the effects of estrogen in the body, inhibiting its ability to stimulate cancer in breast tissue).

Due to my particular situation, I was able to have the surgical procedure immediately followed by breast reconstruction on the same day.

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
Frau am Laptop, sucht nach Informationen | Foto: Pixabay #849825 | StartupStockPhotos
Enhancing empowerment through information gathering. (Photo: Pixabay #849825, StartupStockPhotos)

 

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.

The benefit of self-employment: My boss was the first to know about my cancer diagnosis and was very supportive – haha, that was me!

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.

Karin Holm 2014 at the European Patients’ Academy (EUPATI) workshop in Warsaw | Source: EUPATI
Karin Holm 2014 at the European Patients’ Academy (EUPATI) workshop in Warsaw. (Source: Eupati.eu)

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,
  • confusion,
  • discouragement,
  • 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

Further information

Literature

  • 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

 

Karin Holm

Karin Holm is a breast cancer survivor and created the Swiss non-profit association Patient Advocates for Cancer Research and Treatment (PACRT) whose goal is to bring the patient perspective into all aspects of cancer research and treatment by placing informed patient advocates onto cancer-related decision-making bodies.

7 thoughts on “Breast Cancer: How self-management helps

  • 2017-02-03 at 15:08
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    Dear Karin,

    Thank you for sharing your experiences in this blog. It is greatly impressing to hear about your recovery, and especially how you could turn your experiences into something positive (your own empowerment) and helpful for many other cancer patients.

    As a researcher, who is familiar with the peer support movement from metal health survivors in Switzerland (mainly represented by the efforts of EX-IN Bern and Pro Mente Sana, I was wondering how “being a role model” impacts experienced survivors themselves.

    Let me give you an example: Persons who experience(d) mental health illness are more and more engaged in supporting other persons who a mentally ill or engaged in politics, education or research. By working with those peer support workers (or simply “peers” – as they are usually called in the German speaking part of Switzerland), I was frequently confronted by their vulnerability. The fact that working with persons, who are actually living through the experiences they have gone through once, affects the mental health of those peers support workers. They help others while they are confronted with their own painful history. Sometimes, this costs them a lot of power to stay “healthy” or stable while seeing others suffering. [We have discussed this in our research paper as well.

    While reading your blog, I started wondering if this is unique to those people who experienced mental health illnesses or if you have made this experience with breast cancer peer workers/role models etc. as well?

    If yes: How can we (researchers, health professionals how work with those peer support workers) support those people?

    For me as a researcher who has and wants to involve peer workers/survivors in her projects more frequently, and more thoroughly, it would be really interesting to hear your opinion/experiences on this. This might reduce the barriers to thoroughly involve peer workers/survivors into research more often.

    Looking forward to your thoughts,
    Anna

    Reply
    • 2017-02-07 at 12:16
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      Answer 1
      Dear Anna,

      Thank you so much for your reflections on the blog and questions for me about how being a breast cancer peer survivor affects working with individuals who are going through the experiences I have already gone through.

      I divided my long answer into two replies.

      For me, being a role model has been rewarding and cathartic. Each time I have the opportunity to listen to or share with a fellow breast cancer survivor, I feel like I am “paying it forward.” In other words, I am not “paying back” a debt to those who helped me earlier – those numerous good-hearted breast cancer survivors with whom I consulted, who generously shared their experiences and counseled me when I was diagnosed and undergoing treatment and recovery. Those were kind referrals (often a friend of a friend) who took a phone call from me out-of-the-blue, to walk me down the rocky road of their journeys and try to help me learn from their travels.

      Those generous souls do not expect me to return the favor back to them. Rather they are glad that I can provide further support and comfort to unknown future women who might turn to me with concerns. So I am paying it forward, passing on the care and attention that I once received to help others so that they may walk their path a little more confidently, feeling not quite as alone.

      However, I have only played this role spontaneously and sporadically as I am not involved in a daily basis in supporting women who have breast cancer. There are plenty of excellent patient support groups who organize such interactions, pair up or mentor experienced patients with the newly-diagnosed, and if I had infinite time I would surely wish to get more involved.

      However, my particular focus with my independent, non-profit, volunteer-run organization is on changing the paradigm in cancer research and clinical practice to place empowered and informed patient advocates into influential positions on decision-making groups to bring the patient perspective into the center. My hypothesis is that listening more to patients’ preferences and values will unify the various sectors in the cancer medical and business community.

      Best Regards
      Karin

      Reply
      • 2017-02-07 at 12:33
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        Answer 2
        Dear Anna
        Here is the rest of my answer.

        So my current work is mostly with researchers, medical practitioners, the oncology community, and government agencies in encouraging deeper engagement with cancer patients to improve health outcomes. However, many individuals within these organizations, have of course, been cancer patients themselves or carers to patients and I always try to recognize this possibility.

        However, I would really applaud your investigation into this arena. Whether it involve mental health or cancer or another disease or condition, my guess is that peer survivors do indeed need special support when they are broaching the issues they once faced. Actually being in the helper position could be very effective for pursuing one’s own further recovery and developing as a peer leader — but this should be secondary and separate from leading the new people who are just beginning to face their situation.

        As I see it, the restimulation of past trauma that occurs when helping others is a natural process that allows us to better integrate self-efficacy into our own experience. However, during peer leadership activities, we must indeed exercise control to not let any emotions that arise interfere with our being good role models for the peers we are helping (e.g. we shouldn’t express strong fear and anger when we recall a particular procedure, but rather try to describe it carefully and objectively).

        More appropriately later, with special counseling, we can perhaps explore those deep emotions to discharge them and realize that we survived and be all the stronger for it. Knowing that we would have special counseling immediately or soon after our peer session, could allow us to postpone dealing with the difficult feelings during the peer session and instead choose to act as a good role model. To me it seems like a valuable investment of professional counseling time.

        I hope you or someone reading the blog may know of studies or programs that examine how to counsel the peer leader? I look forward to further dialogue on this!

        Best regards,
        Karin

        Reply
  • 2017-02-07 at 13:46
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    Dear Karin

    Thanks so much for this nice blog entry. I read it with great interest.

    Of course, as you describe above, it is a difficult experience for the patient as well as her immediate and maybe extended family. On the website of PACRT it states:

    The goal of PACRT is to bring patients into the center in all aspects of cancer research and treatment to improve solutions (“Anything About us, With us!”) and enhance patient empowerment in Switzerland.

    Can you maybe elaborate in your next blog entry on this mission statement?

      How can PACRT help get patients more center stage regarding cancer research and treatment work to improve solutions?

    I think that is a really interesting area. Of course it deals with patient empowerment.

    Nevertheless, I find it goes way beyond what the public might consider patient empowerment (e.g., getting to understand the disease better, etc.)
    Of course, that it goes beyond the usual definition of empowerment speaks for PACRT. This is why this blog entry made me want to read more 🙂

    Thanks for sharing Karin. I hope to have a chance to read your next post (as it says above) soon.
    Merci
    Urs
    DrKPI®

    PS. Family members surely need support as well, as I experienced with my sister: http://meinbrustkrebs.blogspot.ch/

    Reply
  • 2017-02-08 at 20:40
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    Dear Urs,

    Thank you for your comment and questions about how PACRT aims to get patients more center stage regarding cancer research and treatment to improve health outcomes. I will try to address that in my next blog and how I was driven to try to create a patient advocacy group to address some specific issues and unmet needs I saw in the cancer medical system in Switzerland and around the world.

    As I mentioned in my response to Anna’s comment above, I have left the very important personal support side of patient empowerment to the well-equipped patient support groups. Association PACRT’s focus is to look from a systems point of view at how to nudge the cancer medical paradigm to increase patient input and priorities at all decision-making levels. A challenging long-term task perhaps but one I feel is worth pursuing.

    Details to follow soon!
    Best wishes,
    Karin
    http://www.pacrt.org (needs updating I know! does anyone know weebly.com? I created the nascent website myself but could use some pro bono assistance!)

    Reply
    • 2017-02-09 at 08:56
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      Dear Karin

      Thank you so much for your answer. I really appreciate this. Especially your point that PACRT leaves the patient support to service provider facilitated group intrigued me.

      Patient and relative or family support is a real challenge.

      In other words, these groups attract certain people. Being in the group allows members to feel supported. They then do not feel alone in their journey with cancer and breast cancer in particular. At least in the ideal case.

      Nevertheless, my sister felt that because of the suffering of other group members that required her support, she could not cope with that situation…. so she did not stay in a group.

      I am sure there are many others who have similar experience. In turn, it is very challenging to provide support for any organization. Their facilitators do a tremendous job.

      Thanks for sharing, Karin and I look forward to hear more about PACRT.
      Urs

      PS. As we discussed, I am not an expert with weebly.com I can, therefore, not offer you any pro bono assistance.

      PPS. I look forward to the next post where you will address:

      … how PACRT aims to get patients more center stage regarding cancer research and treatment to improve health outcomes.

      Reply
      • 2017-04-30 at 17:01
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        Dear Urs,
        Thank you for your followup email. You raise a really good point. Being in a cancer patient support group can be supportive for many people, but a lot depends on the format, the leader, the participants, and other tangible or intangible factors.

        I am so sorry to hear that your sister tried a group, but that the dynamics of the group did not make it a positive experience for her, causing her to decide to leave the group. Some groups are unstructured either purposefully or for lack of other resources. Even if run by an experienced facilitator, these groups can become too emotionally overwhelming for some members. Other patients find comfort in the opportunity to share and be heard in a free-flowing way.

        An alternative that is finding increasing interest for cancer survivors is a structured, evidenced-based approach that uses well researched methods in self-management. I am currently involved in a pilot project with Swiss and German researchers to test the benefits of using such an approach with early stage breast cancer survivors in German-speaking Switzerland.

        CO-creating and piloting the effectiveness of an integrated peer-to-peer Self-management program for breast cancer Survivors (COSS-study, see http://www.careum.ch/COSS-study), it builds on the Cancer Thriving and Surviving Program (CTS) and the Stanford Chronic Disease Self-Management Program (CDSMP), which have been implemented in Switzerland as Evivo “Gesund und aktiv zu leben” and “Devenir acteur de sa santé” (www.evivo.ch).

        Adapted for the early breast cancer patients, if the pilot is successful the COSS courses will be rolled out at 10 breast care centers in German-speaking Switzerland and offer ways to empower patients (and their care takers) to take charge of the post-treatment experience. Patients will learn new coping methods to be able to handle their physical, psychological, familial, social, and work-related challenges in a supportive, facilitated group setting.

        The unique feature of this concept is to integrate these self-management courses into the breast cancer care pathway at university hospitals. Also first-of-its-kind in Switzerland is the concept of having motivated patients themselves trained to lead other patients and having adapted the course content and priorities specifically to the particular patient preferences, including cultural aspects of Eastern Switzerland. COSS-trained breast care nurses will act purely as resources and support to each group.

        This will be truly patient-led and will hopefully address the problem you raised for future cancer patients.

        Best regards,
        Karin

        Reply

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