Through the Patient Lens-On Your Mark, Get Set.....
Editors Note: This article was written by guest authors: Jessie Daw and Rob Weker.
The viewpoints in this article belong to the authors and do not represent those of any affiliated institution, organization, or company.
As oncology patients, we have benefitted from the amazing technological advances made in the treatment of cancers, including immunotherapy, radiation therapy, and chemotherapy. The pace of change is truly astonishing, but early detection remains critically important. Early detection is turning on the light in an otherwise dark room. It better defines the contour of the space, and though we may not appreciate all the unique medical challenges to an individual patient, at least our medical team has a greater understanding of these challenges.
But does early detection warrant early or immediate action? As with any race, the instructions are often clear – “On your mark, get set, and GO!” However, there are situations where the most prudent and race-worthy strategy may be different. As the tortoise taught us, we can be more successful by doing things slowly and steadily rather than by acting quickly and carelessly, but both the tortoise and the hare started acting at the same time. With cancer, patients are often overcome with a feeling of urgency, the need to act right now. When dealing with cancer, there are situations where the best strategy may be “On your mark, get set and… WATCH & WAIT!”
Wait? That idea probably seems foreign, and perhaps elicits ideas of complacency or passivity. However, there are three common situations where ‘wait and watch’ is a compelling approach:
When a cancer is slow-growing and there is a low-risk of progression
The most common reason for waiting is when a cancer is slow-growing and/or has a low-risk of progression. Indeed, for some types of cancers (e.g., certain types of prostate cancer, thyroid cancer, and some blood cancers), research has demonstrated that treating early does not impact survival when compared to close surveillance.
The need to balance the disease and potential side-effects associated with treatment
Another reason to wait is to monitor disease progression and determine the best time to start treatment. Often the drugs used to combat the cancer come with significant risks and/or side effects. If the disease is stable and not yet causing any significant damage, the patient can continue living a relatively normal life while being under close observation/monitoring for any disease progression.
When innovation and advancements in treatment that could be transformative are near
A final reason to wait is to monitor advancements in treatment. A patient may hold out hope that a new treatment may be better tolerated and more effective in fighting the cancer, but this approach must be thoroughly considered; after all, when considering buying a new cellphone, the next generation can sound so intriguing that a buyer may decide to delay her purchase. Ultimately, she never buys a new phone, always waiting for the next shiny version coming soon. While waiting is standard for some types of cancers, it is more controversial for others, including some breast cancers. But in the case of smoldering multiple myeloma, waiting has been the standard of care, with more recent research focusing on early treatment, determining when to start that treatment, and identifying what is the best frontline treatment at that stage of the disease.
Fundamentally, I believe there is one essential driver – the quality of life for the patient (and caregiver), and I must balance both the short and long term impacts. This may sound a bit too simplistic, but it is far from simple. Like a juggler, I try to maintain a degree of equilibrium. I need to focus on each individual ball, but also on all of them at the same time. How soon might the disease impact my current quality of life? And how significant might that impact be? And if/when I start treatments, what should I expect? Will the side effects associated with the treatment itself dramatically impact the quality of my life? And for how long? And what about the disease itself, will the treatment push the disease into remission so I only need to deal with treatment-associated side effects for a set period of time, or will these treatments be ongoing, becoming my new baseline for the quality of my life? And of course, my ‘full range of vision’ needs to watch for new developments just as a juggler must be prepared to add a new ball or change the pattern of the routine.
This state of change brings challenges to the surface for many smoldering myeloma patients. As recently as 2014, the criteria for starting treatment shifted. Prior to that, end organ damage was a necessary symptom for initiating treatment (i.e., CRAB criteria, see diagram). Now, three additional indicators are used to determine when to start treatment (i.e., SLiM CRAB). And even more recently, in 2019, new criteria involving three lab values were released, providing a predictive model for high risk of progression within two years (i.e., 20-2-20). These advancements are important to those living with smoldering myeloma, but they also create questions regarding when to start treatment. With many cancers, the answer is clear: a diagnosis is received and the race starts. In the smoldering myeloma world, staying at the starting line is often the best option, but it comes with uncertainty.
So, how do I as a smoldering myeloma patient take best advantage of this wait time? Clearly, I need to work with my medical team and establish an observation/surveillance approach that keeps me and my team informed and provides the real-time data to decide when to start the race. In addition, I need to constantly educate myself in both the disease and research being conducted. It is a challenge to monitor the research space, but I encourage patients to find a method to keep up with the latest advancements while partnering with the appropriate medical team. It is important to keep in mind that many local oncologists and hematologists have a very small number of myeloma patients (typically under 2%), so it makes sense to find a specialist doctor who has a significant focus on the myeloma space for the latest breaking innovations. These specialists are particularly helpful in monitoring and advising me in the clinical trial space (of course, individual patients must determine if they are willing to participate in a clinical trial). These clinical trials are often the source of breakthrough treatment opportunities in myeloma, though they still must be tested.
The challenges during my ‘wait time’ are physical, mental, and emotional. The physical aspects are relatively straightforward as my medical team and I set out a monitoring schedule of lab visits and checkups. These are time consuming, but manageable. Mentally, I am constantly questioning my progress – more lab results, new treatment options, my overall health – in search of a definitive sign that the race should start. The emotional aspects, however, are the most challenging. I am overwhelmed with fear and doubts about how my life has changed, and uncertainty about how my life will change once the race starts. It’s a continual mental challenge to consider the path ahead, and it takes constant focus to live for today and try to maintain a mental balance that is life-affirming in the moment, while also preparing emotionally for the future when treatment starts and life is upended even more. I also worry about burnout as I can’t help but obsess about the road ahead, not just when it will start, but did I make the right decision on when to start the race and what will the journey really be like. Finally, I must be cognizant of the emotional peaks and valleys, and learn and implement effective regulation techniques for managing these variations.
Of course, the journey is never simple. It’s possible that members of the patient’s care team may disagree on when it’s time to start treatments. What does a patient do in this situation? Realistically, I am probably the least qualified to make the decision. In this situation, I think the patient must be very proactive. The patient should require a joint meeting of the medical team so that everyone can hear why the doctors differ. Maybe one doctor can convince another, but at least everything will be transparent and on the table for the patient to consider. Of course, the patient can also seek another opinion of someone expert in myeloma to ‘break the tie’ as it were. The ultimate decision resides with me, and my team must align behind the path chosen.
As hopefully is apparent, the watch and wait approach is much different for patients than the typical cancer diagnosis. The immediate shock of ‘you have cancer’ still jolts, but my world isn’t instantly and completely upended as no immediate action is required of me compared with most people receiving the diagnosis. Yes, the rest of my life has changed, but just a bit more slowly. I often wonder which is preferable. On your mark, get set and Go is so decisive and action oriented. However, I typically land on the diagnosis with watch and wait approach. But there are challenges in this situation, as well. And depending on the length of the wait, new thoughts and perspectives emerge. Yes, I obsess about the disease, but it also provides a time of introspection – to learn more about who I am and what my place in the world is. This type of diagnosis is a perspective-shifter as I become very focused on my quality of life. So, on my mark, get set and….
Jessie volunteers as a Myeloma Coach to share her personal perspective on living with smoldering myeloma. She helps others by offering her shared perspective, helpful resources, and encouragement. Myeloma Coaches are myeloma patients or caregiver volunteers who share what they've learned to help others.
If you are newly diagnosed or living with smoldering myeloma and would like to talk to someone who can relate, consider connecting with a Myeloma Coach. If you are living with or caring with someone with myeloma, smoldering myeloma or MGUS- consider becoming a Myeloma Coach. Sharing your personal experience, support and encouragement with others can make a deep impact.
About the authors:
Jessie Daw is the co-founder of the Eastern South Dakota Multiple Myeloma Support Group, established in October 2018. She was diagnosed with smoldering myeloma in 2016. Jessie is also a Myeloma Coach through MyelomaCrowd, an MMRF Myeloma Mentor, and a member of GlaxoSmithKline’s Oncology Patient Council. Jessie works for BeOnline Inc, an online education and technology solutions company, volunteers for the United States Tennis Association, and teaches adjunct for the University of South Dakota. She holds her Ph.D. in Kinesiology, with a sport and exercise psychology specialty, from the University of Illinois, Urbana-Champaign.
Rob Weker has 25 years of pharmaceutical R&D experience and focuses on providing patient insight and input in enhancing the patient experience and delivering step-change performance. He is a three-time cancer survivor, including pancreatic cancer. Rob serves on the Hospital of the University of Pennsylvania Patient and Family Advisory Council and on GlaxoSmithKline’s Oncology Patient Council. He also publishes the Through the Patient Lens blog on the patient journey. He is the principal at Weker Advisors LLC, providing consulting services across the healthcare industry. He obtained a chemistry degree from Cornell University and an MBA from the University of Michigan Ross School of Business.