Several weeks ago, I attended the Metastatic Breast Cancer Network (MBCN) Annual Meeting, hosted by MD Anderson Cancer Center. I had been invited to talk on sexual health and intimacy, and was delighted to do so. Right after the first invitation, I got an email from their President, Shirley Mertz. She had asked if I would also give a second talk.
“We would love it if you talked about how to live with metastatic breast cancer,” she said.
I paused. After all, what did I know about what these men and women were experiencing? How could I inform them about how to go about dealing with, let alone living with, a diagnosis of metastatic cancer? The task seemed daunting, to say the least. Still, after a few moments, I finally answered her, “Sure, I’d be happy to do that.”
“Great!” she said. “See you in Houston!”
After the momentary panic and the “What did I just get myself into” feeling subsided, I prepared this talk. My inspiration came from my many patients and from the experiences with cancer I have had with family and friends, some in remission, some living with disease, and others who had died of their disease. It also came from social media, specifically #bcsm, a dynamic and engaged community about breast cancer on Twitter, whose tweets I had followed and TweetChats I had joined intermittently.
I also thought about the Breast Cancer Symposium, which had concluded several weeks before. I discussed the posters presented on breast cancer survivorship and recalled how, despite all the work done on this topic, we had not yet identified the issues in survivorship for those who are living with advanced or metastatic disease. That we lacked an understanding of this group of patients was highlighted in a Harris Poll (sponsored by Novartis Pharmaceuticals) where 40% of patients with advanced breast cancer felt isolated from the rest of the breast cancer community. At the symposium, I had raised the challenge to those in attendance, that we must reach out and learn more about the survivorship needs of this subgroup of people living with breast cancer.
With all of this in mind, I created a talk that I hoped would be helpful. I arrived at the MBCN conference not really knowing what to expect and was greeted by a group of men and women whose energy and passion was clearly on display. This carried over in to the conference itself, as each speaker was introduced by a member of this community, who began by telling their story- their journey in breast cancer and how living with metastatic disease is their own reality. Each story was as individual as the person telling it, heartbreaking but in a way, also liberating:
“Don’t ask ‘why me’; ask ‘what’s next.'" Shirley Mertz1
“Each breath we take is a testament to living, not dying.” Doris Ann Price2
When it was my turn, I admit I was quite nervous about what I was about to say. This was not a "canned" lecture that I was able to recycle to suit this gathering. It had come from my heart, based on personal and professional experiences, and was unlike any I had given. Fortunately, my colleagues from MD Anderson, Drs. Stacey Moulder and Jennifer Litton, were in my line of sight. Without knowing it they had quite a calming influence on me.
This is what I said:
Live pragmatically. To be pragmatic is to apply a practical approach to problems and to one’s affairs. It is being able to base decisions through the prism of your life and those responsibilities, goals, and preferences you deem are important, especially when it comes to matters related to metastatic disease. For example, when considering treatment, a pragmatic approach would mean choosing based on questions that are relevant to you:
- How much inconvenience are you prepared to put up with to be on treatment?
- What toxicities are acceptable to you? And which ones are not?
- How much time are you willing or able to spend undergoing treatment?
After all, at the end of the day, no one else has to walk in your shoes.3
Be realistic. Being realistic is the ability to accept things as they actually are, not as you wished they were. It means that for most living with metastatic disease, cure is not possible, and that it can claim your life. As such, acknowledging this reality encompasses preparing yourself for an uncertain present, and an even more uncertain future. Part of this involves advance care planning and the naming of someone you trust as a health care proxy. More importantly, it’s making sure that whoever is that proxy understands your wishes, as do those involved in your life.
I encouraged the audience to engage family and those you consider to be in your social circles sooner, rather than later. After all, how you view and accept the reality of the situation can provide the cues to others in your life, which can help them to acknowledge, accept, and prepare for your reality as well. As I have come to understand as a physician and as a friend, people living with metastatic breast cancer should know that those of us who love you are often more sad and more scared than even we want you to believe.
Finally, being realistic also means acknowledging that, at times, you will need help. Accepting help when offered, particularly when it is needed, is important. This should never be perceived as your ceding your own sense of self or even your own personal freedom, which will remain an inherent part of who you are and things your cancer should not take from you.
Remain optimistic. To be optimistic is to live with hope; hope that cancer will not debilitate or kill, that treatment will work. However, what one expects by treatment “working” should go beyond hoping for a complete remission; it should also encompass the hope that the cancer stops growing (stable disease).4 If oncologists can stop the cancer from growing, we hope that the cancer will not impact how you are doing, or make its impact worse. That is, being realistic even while being optimistic is possible, and probably as important.
Optimism also goes beyond how today’s treatments will impact life with metastatic disease. It encompasses the evolution in the treatments for cancer embodied in our quest for precision medicine, which embodies our search for molecularly targeted treatments and an ever-deepening understanding of tumor biology. We have already seen the fruits of this work within breast oncology (HER2-directed treatments like trastuzumab, lapatinib, Ado-trastuzumab emtansine, pertuzumab), melanoma (BRAF-inhibitors like vamurefanib and dabrafenib), and lung cancer (ALK-tyrosine kinase inhibitors like crizotinib and afatinib, which targets EGFR mutations involving exon 19 or 21). We hope to do more, but it will take collaboration between us all to do it. Ultimately, I believe that optimism is indeed a clinical trial because hope for better is what drives clinical research—on all fronts.
This was my message: To live pragmatically, stay grounded in reality, and to remain optimistic. In it was my personal desire to see each person access the support necessary to persevere, information about options presented highlighting clearly both the risks and the benefits, and the opportunity to participate on a clinical trial if he or she desired.
But ultimately, it was also a message that cancer should never define anyone. It is a noun, and not an adjective. Each of us is more than a survivor, caregiver, doctor, or nurse. We are mothers, daughters, fathers, sons, husbands, wives, co-workers, and friends. Beyond who we are as individuals, we are also a part of a community—both real and virtual. As I left the MBCN conference, I realized the strength of that community, and felt once more, that there is indeed power in numbers.
To read another reflection of the MBCN Conference, please read Jody Schoger’s blog on Women With Cancer.
Learn about the newly formed Metastatic Breast Cancer Alliance, an alliance of 15 leading charity and advocacy organizations. In remembrance, let's honor National Metastatic Breast Cancer Awareness day, October 13, 2013.References
1. Dizon, Don S (@drdonsdizon). “Don’t ask “Why Me?” Ask “What’s Next.” Pres Shirley Mertz Opening the #MBCNConf #mBCSM #bcsm.” 21 Sept 2013, 10:50am. Tweet.
2. Schoger, Jody M (@jodyms). “ “Each breath we take is a testament to living, not dying.” – survivor Doris Ann Fisher #MBCNConf.” 21 Sept 2013, 12:28pm. Tweet.
3. Schoger, Jody M (@jodyms). “How long will I put up with treatment? No one else has to walk in your shoes? That is pragmatic. #MBCNConf.” 21 Sept 2013, 1:23pm. Tweet.
4. He L, Teng Y, Jin B, et al. BMC Cancer. 2010;10:681. PMID: 21156055.
Oct, 10 2013 10:35 AM
Thank you again. You truly connected with our conference attendees. We appreciate the great care and sensitivity you took in preparing your remarks--you found exactly the right approach.
You are so very right about engaging family members sooner vs. later. The Metasatic Breast Cancer Network asked people with metastatic disease who helped them cope. What would they like to say to these special people? The responses are short but so very moving.
You can see them here.
Thank you again for recogizing and supporting an often overlooked community. You are our hero!
Metastatic Breast Cancer Network
Doris Ann Price
Oct, 10 2013 11:04 AM
Thanks for the shout-out, Don! I'm both awed and -- well -- laughing, since my name is actually Doris Ann PRICE, not "Fisher!" But no mind: Jody Schoger toyed with my name in her tweet, making me FISHER-Price instead of "Price!" You just reposted her Sweet Tweet. It put a smile on my face this morning, adding to the divine comedy of life! Thanks, Don!
Don S. Dizon, MD, FACP
Oct, 10 2013 11:25 AM
Dear Doris: I fixed the name- Oy! I think I was subconciously thinking Fisher-Price! Thank you for your post though! I appreciate it and was so grateful to meet you too. I hope our paths cross once more!
Oct, 30 2013 3:36 PM
I watched your MBCN Conference talk on YouTube, and found it very helpful. I have been there with two friends whose oncologists, in attempting to cure them of their cancer, kept the chemo up for too long. The result was that one died of pneumonia, the other of a brain infection that had opportunistically invaded my friend's very diminished immune system.
With this in mind, when the chemo for me turned from helping to harming, I demanded we stop. I am very lucky in that the metastatic breast cancer to my liver has been stable since. But even if that had not been the case, I would have stuck with this decision. In the end it's about quality of life, not life for life's sake. Thank you for saying that.
For me it's balancing living with being prepared. I have my advance directive and a will. Beyond that, I'll keep my focus on living. Both documents are in the safe and I hope to not need them for a long, long time.
Don S. Dizon, MD, FACP
Nov, 01 2013 8:16 AM
Dear Susan, Thank you for the complement, and for taking the time to post here on ASCO Connection. Having your voice heard by me and my colleagues can hopefully continue to remind clinicians of the importance of quality of life in treatment of cancer. I am glad that you found the presentation helpful as well; it was one that I found both incredibly hard to put together but ultimately gave me a profound sense of accomplishment. It was also an emotional release for me, as I drew inspiration from the lessons I've learned from friends, in addition to those I've learned from my own patients.
My best regards,