Post-cancer treatment survivors tend to experience physical, functional, and/or psychosocial symptoms. Sadly though, we know very little about the time course of these symptoms and modulating factors. We also lack data to understand how to best control symptoms in cancer survivors. As a result, we often extrapolate from the non-cancer domain. Steps are being taken, slowly but in the right direction, to create a large HIPAA-secure dataset that combines electronic patient data from different institutions and organizations that will allow us to gain an insight into some of these factors. Unfortunately, this process is complicated by the fact that these data are collected from real life and are not systemically-collected research data (which would be easier to analyze).
In spite of these challenges, we do have ways to support cancer survivors’ symptoms and needs. This blog is not geared towards management of a specific symptom, but outlines my general principles of managing symptoms:
- Validation — It may be challenging for you to put your symptoms into words and to find a health care worker who listens, tries to understand and ideally knows how to best support you. If there is any breakdown in this chain of communication, you may find yourself feeling not supported, feeling like you have a crooked body, or even wondering if you are imagining your symptoms. You know your body best. If you feel there is something amiss, then there is — even if you don’t have the words to describe it, the issue is not advanced or specific enough to be diagnosed, or your provider does not have the time or the needed expertise. Acknowledgement of the fact that you sense something is happening in your body can be very empowering. Most of you trust your health care providers and prefer to stay loyal. Therefore, if you feel there is a break-down in communication, I would advise you to try to openly explore opportunities for improvement with your provider (e.g. by asking for an extra visit or phone call). But in the end, you are a client of a health care business, and as such you should feel free to find a provider with whom you feel more comfortable communicating and can synergize to optimize your health outcomes.
- Realistic expectations — First and foremost, I try to create, if not correct, expectations related to prognosis by explaining that I don’t have a magic wand and that symptoms may not improve or resolve as quickly as you wish, if at all.
- Clustered symptoms — It’s important to understand that the reason most survivors have more than one symptom is because one trigger can set off a cascade of other symptoms, creating a vicious cycle. For example, if you are on a cancer therapy that lowers your hormone levels then you may experience night sweats that interfere with your sleep. That can lead to irritability and cause lesser brain function during the day.
- Multiple small personalized interventions — Due to the interrelatedness of symptoms, it may not always be effective to put all your “eggs in one basket”. Multiple small personalized interventions geared towards several domains (e.g. nutrition; physical exercise; psychological, pharmacological, or social interventions) may be most doable and helpful. It’s best to start low and slow to find the minimal amount of effort to achieve symptom tolerability.
- Shared-decision making — Because evidence for symptom control may be lacking or different treatments have not been compared head-to-head, there is not often clear clinical guidance in terms of first, second, or third lines of therapy. As a result, I encourage, and even find it imperative, to get input from the patient in terms of their preferences. Some patients may not prefer to put any more pharmacological therapies in their body, while others may prefer to pursue more time-consuming (and at times more expensive) non-pharmacological methods.
- Tiered care — Ideally, medical professionals should help you in a proactive approach by monitoring your symptoms and needs over time so they can maneuver you between tiers of care that offer varying levels of support (self-help, telemedicine, face-to-face, etc.).
- Care-team — Last but not least, realize that you are part of a healthcare team that includes many cancer and non-cancer health care workers. Every team member should try to do their best to coordinate care (whether that be in a written/verbal, synchronous or asynchronous manner) to allow continuity of care and minimize risk of redundancy, overtreatment, and errors.
The underlying fear for new symptom development in a cancer survivor is always the concern as to whether the symptom may represent a cancer recurrence. As outlined in a previous blog, please don’t Google. Call a provider, ideally a cancer specialist, who can talk things through with you. You are not alone!
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