In Our Shoes: Raising the Voices of MBC Patients

Well, this is LONG overdue, but I’m finally feeling up to using my chemo-addled brain again! You may remember (or perhaps you never even knew) that last spring I conducted a survey of metastatic breast cancer patients. As I’m sure you’ve heard me say before, we are patients who often fall through the cracks when it comes to breast cancer advocacy. Sometimes we scare people, sometimes we don’t fit the mold, and sometimes we are forgotten – or pushed aside. As patients, we know our stories are hard ones to hear, but as so many advocates will tell you, there is no breast cancer advocacy without MBC advocacy.So I sought to give voice to so many who feel neglected by the “pink party” that has become breast cancer awareness. The survey accrued 343 responses, including some men, and gave participants ample opportunity to share, in their own words, what is has been like to live with MBC. The survey focused on three areas: living with MBC, relationships with healthcare practitioners, and advocacy. As with most things related to breast cancer – it could  not have been done alone! The abstract was accepted into the Advanced Breast Cancer 3 poster session and I had the honor of presenting it at the ABC3 conference in Lisbon in early November (on injured feet, but nothing would have kept me away!) Below I highlight the findings I shared in Lisbon.

The survey was conducted thanks to the support of many communities, including #BCSM and METAvivor Research and Support. Most importantly, I want to thank all the participants who were so generous with their time and sharing. Your words have moved me beyond measure…

ABSTRACT

Objective. The “In Our Shoes” survey was developed for women and men living with metastatic breast cancer (MBC) to share their thoughts and concerns related to living with MBC. Areas addressed include demographic information, the impact of MBC on relationships with friends and family, the nature of their relationships with healthcare practitioners, and their understanding of investment in the advocacy landscape surrounding MBC.

Methods. The survey was distributed in April 2015 via social media, including posts to the METAvivor and personal blogs, distribution via METAvivor’s email list, numerous Twitter and Facebook announcements over the course of 2-3 weeks, promotion within large pools of advocates including the weekly #BCSM twitter chat, and word of mouth. Networking with international organizations was attempted as well.

Results. The survey accrued 370 responses, of which 343 are included in the data evaluation. (27 respondents indicated that they had not received a diagnosis of MBC and were therefore excluded from analysis.) The survey allowed for the inclusion of incomplete responses to encourage broad participation, and allowed for annotative comments for many questions in order to capture the experience of MBC patients as they articulate it. Greater collaboration with international advocacy groups would provide an understanding of global realities, as well as a basis for comparing the extent to which MBC patients share similar experiences based on country and/or region. Respondents were generous in sharing candid insights about how they cope and adapt to life as terminal patients in the context of many of the relationships that surround them, including family and friends; healthcare providers; and advocates who work in and on behalf of the MBC community.

DEMOGRAPHICS

Age Distribution: Respondents ranged in age from 29 to 72.

Gender: Only three men completed the survey, however the American Cancer Society1 data suggests this accurately reflects the prevalence of male breast cancer in the US. Predictions for 2015 suggest approximately 1% of breast cancer will be diagnosed in men (2350 cases), and that men will account for 0.9% of breast cancer deaths.

Geographic Distribution: Of the 343 included responses, 88% represented the US and Canada, despite attempts at international distributions.

Stage at Initial Diagnosis: Participants were asked to indicate both the stage and year of initial diagnosis. Roughly 36.8% of respondents were diagnosed at Stage IV. (This is not consistent with the US-based SEER Cancer Statistics Review, which records de novo Stage IV breast cancer diagnoses at 6%).

Progression to Mets: When all “early-stage” diagnoses (0-III) are combined, roughly 55% of patients had metastatic recurrences after the touted 5-year mark. Further, 8% of patients had recurrences 15 or more years out from their initial diagnoses, with the most distant recurrence occurring in a Stage I patient 26 years after initial diagnosis. While 5-year survival rates often herald to patients that they are “safe” from recurrence – even cured, this leads to false expectations. Patients are not “safe” five years post-treatment; in fact, patients are never necessarily “safe” from recurrence

LIVING WITH MBC

MBC comes with a boatload of stress for most patients, and it spans the gamut from worries about the future to worries about family, from physical limitations to emotional ones. Respondents were asked to address a variety of issues related to living with MBC, and given ample opportunity to provide narrative answers. Some responses can be found below:

Side EffectsOn Side Effects.

The top reported side effects appear in the table on the left. Only 8.9% of annotated responses indicate side effects that were not debilitating.

  • I am on more (prescription) meds for side effects than for cancer!
  • Every pill for side effects has its side effect….

Invisible Disease.

  • I look like there is nothing wrong with me (I’m) healthy and I have hair. Some days it’s even hard for ME to believe I have cancer.”
  • I “…would like others to understand that although I look well and I appear to be okay for the brief time I interact with them, I am impacted by side effects 100% of the time even though I might not be telling them.

On Being a Young Woman.

  • I’m an 80 year old (menopause and all) in a young body and it sucks.
  • I live “…with the fact that I will NEVER get the chance to have children of my own and maybe never receive a marriage proposal.
  • My husband is supportive, but everyday I question how he can accept my inability to have children. By far, the most devastating aspect of my disease.

On Being a Young Mother.

  • I live “…with fear of leaving my child to grow up without his mom
  • Sorrow over the “…loss of essential time with my son.
  • When referencing her oophorectomy, one woman said, “My daughter constantly asks for a sibling and it never gets less heartbreaking.

Primary Stressors

On Stress.

  • It is “hard to convince people that MBC is fatal, there is NO cure
  • (S)top saying ‘you’re strong blah blah blah,’ no I’m tired!
  • …I owe so many bills for my cancer care, that I will die before I ever pay them off.

On Loss.

  • I “…had to give up many things I always enjoyed
  • The side effects “…are debilitating, life and body altering, unpleasant, embarrassing, emotionally and physically painful
  • MBC is a ticking time bomb and can go off at any time.”
  • I put on a mask during the day…makeup and hair. But at night, everything is stripped away and I see me.

On the Emotional Toll.

  • I live with a “…shattered, broken heart...”
  • A “…black cloud, while not always directly overhead, is always within my vision.”
  • I feel like I look disgusting so I don’t leave home except for medical appointments.

RELATIONSHIPS WITH HEALTHCARE PRACTITIONERS

Relationships with HCPs. Overall, MBC patients were generally pleased with the relationships they have with their health care providers. When asking about the openness they have with medical oncologists, 91% said it was “excellent” or “very good.” 88.9% gave that same rating to their radiation oncologist. A dip was seen when rating palliative care specialists, with 78.9% saying their relationship was excellent or very good, and 82.1% felt that openness with nurse practitioners. While only a few respondents indicated they were receiving hospice care, 100% rated openness as “excellent” or “very good.”

Comfort in discussing topics. When considering some critical issues related to care, there was a varied picture, illustrated in the chart below, “poor” and “very poor” communication was noted in the areas of sexuality and sexual dysfunction; hospice; end of life; and alternative therapies. Each of these areas is critical to the patient’s quality of life, and many patients indicated they wish a HPC would initiate a conversation.

HCPs

Message to doctors.I want my doctor to...

  • I know you are being rushed, but I am a living feeling human being who is fighting for her life. Please make me think you are on my team!”
  • “Please update yourself regarding my recent test results BEFORE you enter the room. Look at me, not the computer. I’m dying”
  • “I want to know about everything.”
  • “I wish my onco wasn’t so rushed when she comes in to see me. I travel about 12 hours total and get about 10 minutes with her. I usually have questions left over from the last meeting.
  • “While I put on a happy face, I live my life in fear–fear that I won’t see my children graduate from college and enter into adulthood…I fear that my life will never be full again.”
  • “Don’t treat me like I am a dead woman walking!”

There are some topics, particularly sensitive ones, which patients wish doctors or other health care practitioners would raise for discussion, rather than waiting for the patient to do so.

HCP should raise....jpg

ADVOCACY

The final section of the survey included questions about MBC-specific advocacy, and the most important qualifications for an advocate in specific areas of advocacy. For each area of advocacy, the top 3-4 most critical areas of expertise are reflected in the chart below. It is worth noting that a great deal of MBC-specific advocacy is done for rather than by MBC patients themselves. While the support of the broader community is essential, and acknowledging that many MBC patients don’t have the capacity to engage in advocacy, it remains critical to most patients that the MBC voice prevail.

Advocacy

In 7 out of 11 areas of advocacy, respondents deemed MBC patient experience was the most important experience required for effective advocacy. Exceptions to this were in the area of public policy where 45% favored public policy experience and 23.3% favored MBC patient experience. Just slightly preferred over MBC patient experience were: government funding of cancer research (public policy experience preferred by 0.6%) and raising funds for cancer research (5.6% favored nonprofit management experience). In every other area respondents believed that experience of living with MBC was the most important factor in effective advocacy. To further understand the importance of MBC patient experience, it is valuable to note that in no instance did more than 5% of respondents feel early-stage patient experience was the most important factor in advocacy. However, it is often just these individuals, early stage “survivors,” as well as paid advocates, who have the loudest voices, sometimes to the exclusion of MBC patients themselves.

CONCLUSIONS

MBC patients persistently speak of not being counted – especially those who are diagnosed at earlier stages first, and literally are not included in US cancer registries, and so are absent from most data sets, including SEER3. Available statistics are, at best, educated guesses. Giving voice to their needs, perspectives and concerns is critical. Moreover, it is widely believed that MBC patients are living longer and more active lives and that new and emerging targeted therapies will lead to longer lives, with greater quality of life – and an enhanced ability to advocate for themselves and others.

The fuller understanding of the underlying challenges of life with MBC recorded in the survey is a critical step in providing necessary, nuanced support; improving quality of life; and helping patients live as fully and independently as possible. Patients are additionally helped by open communication with health care providers, and perhaps would be further facilitated by greater time and openness on the part of HPCs. Specifically, patients wish for more transparency, full disclosure of medical conditions, and providers taking the initiative of raising sensitive topics. And finally, while the vast majority of MBC advocacy has traditionally been led by professionals and/or early stage “survivors,” patients would like to see a shift to broader inclusion of of MBC patients in nearly all areas of advocacy; it’s time to ensure MBC voices rise to the top, while leveraging the expertise of others to support them. As urged in regards to many serious illnesses, it is perhaps time to truly embrace a “nothing about us without us” approach to support and advocacy for MBC.

If you’re interested in more information, please feel free to contact me. I would be happy to share the data I have! 

 

 

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11 Comments (+add yours?)

  1. The Accidental Amazon
    Mar 08, 2016 @ 19:49:10

    This is brilliant, Lori! Much needed and very instructive. I hope we will see more of this, and that the findings will help guide treatment, advocacy and future research. Kudos to you for you hard work and much appreciation to the respondents. Going to share this. xoxo, Kathi

    Reply

  2. CareAcross
    Mar 09, 2016 @ 05:30:36

    Lori,

    This is great, high-quality research shining a light on MBC patients’ voice about things that matter — congratulations!

    We will be sharing this post, but we are also interested to find out more. When you get a chance, could you please send us any further details?

    Much appreciated — and thank you for your very hard work…!

    Reply

  3. jbaird
    Mar 09, 2016 @ 12:06:17

    This is truly brilliant work. Thanks so much!

    Reply

  4. iwantmorethanapinkribbon
    Mar 12, 2016 @ 10:59:16

    Lori, thank you so much for sharing the information you gathered. I guess the question remains … how do those with MBC have their voices heard OUTSIDE the MBC community?

    Reply

    • Lori
      Mar 12, 2016 @ 11:08:48

      Yes! I couldn’t agree more – as insiders we already “get it.” Hopefully this collection of data, and the many others like it, will continue to get distribution, that patients’ true stories in their own words will capture attention. As advocates we need to continue to speak out, and engage in dialogue with leaders – both medical/research leaders and policy makers. I’m hopefully that the Cancer Moonshot initiative will foster ever greater collaboration and cooperation. My fingers are crossed….

      Thanks for joining the conversation!

      Reply

  5. Kathy Giem
    Mar 12, 2016 @ 22:17:44

    Wow! Very informative and interesting. Well done!! This is definitely something the medical community and insurance companies need to hear about.

    Reply

  6. Pat Wetzel
    Mar 31, 2016 @ 16:11:54

    Excellent article. The personal comments are often heartbreaking. I’d be very interested in any info you can distribute.

    Reply

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