A few weeks ago, I went to a survivorship clinic that my cancer center provides to patients. I found it very helpful and was impressed by how in-depth and holistic the appointment was, but it was also a bit of information overload for me because survivorship encompasses SO MANY THINGS. In future posts I'll share the important aspects of my personal plan, but I have some work to do in the meantime to figure out what it means for my day-to-day life and what are the most important things for me to focus on first. One of the most important lessons I've learned in this journey with cancer is that when things get overwhelming, break it down to just one thing at a time. In the meantime, I wanted to address a common question - what does survivorship actually mean?
The healthcare industry is in the middle of a transformation of how it approaches cancer survivorship. Survivorship used to refer to what happens AFTER you "successfully" finish cancer treatment (and largely focused on screenings to detect recurrence or secondary cancer). This definition is far too narrow - the reality is that many aspects of survivorship need attention from the day of diagnosis, and many cancer patients will be in treatment for years or decades.
Survivorship is living with, through, and beyond cancer
Today, survivorship is commonly defined as living with, through, and beyond cancer. It's no longer a term that is only handed out to patients who achieve "no evidence of disease" or remission - survivorship is important for ALL patients with any diagnosis/outcomes. I first heard of this concept and became interested in it several months ago, when I heard renowned breast surgeon Dr. Beth Dupree explain: "Survivorship starts at diagnosis...the day or minute you get a diagnosis, everything changes in your life, and to me, that's the place where you reframe and reset everything - how you think of your work, your family, your stresses, how you eat, how you exercise...it's more than just treating cancer, it's care for the patient throughout their entire process."
Healthcare providers are moving away from the idea that survivorship is just about reaching the 5-year mark post-treatment or coming back for routine screenings. With fear and depression being two of the most difficult "side effects" of cancer, survivorship is also about overcoming that fear and making lifestyle changes needed to live a full, authentic, and joyful life. In fact, the American Society of Clinical Oncology (ASCO) and many other organizations are updating their guidelines for cancer centers to include more comprehensive survivorship counseling and plans.
For most patients (and their caregivers/families), cancer not only affects their bodies, but almost every aspect of their life. As Dr. Dupree explained, survivorship planning helps patients understand what to expect and create a roadmap for what actions they need to take to live as fully as possible. This requires the patient's care team (e.g., doctors, nurses, social workers) to not only be well versed in the physical and medical aspects of survivorship (such as screening guidelines and risks of secondary cancers or other conditions), but to more holistically understand and address the patient's day-to-day psychosocial challenges. Based on my own experience and research, I've outlined the 12 most important aspects of physical and psychosocial survivorship.
Physical Aspects of Survivorship
Symptoms & Side Effects / Screening & Monitoring - The "bare minimum" of any survivorship planning provided by your oncologist(s) will include managing the ongoing and late effects of treatment, as well as ongoing evaluation of risk and monitoring for recurrence, secondary cancers, or other conditions (e.g., osteoporosis, heart failure, etc.).
Rehabilitation & Exercise - Exercise is one of the most important factors that patients can control in terms of reducing risk of cancer occurrence or recurrence (for example, breast cancer survivors who exercise moderately for 30 minutes 5 days a week significantly reduce risk of recurrence). Post-treatment rehabilitation (such as regaining mobility, increasing lung function post-surgery, and improving cardiovascular capacity) is also critical in the short- and long-term.
Diet & Nutrition - Weight management and eating a healthy, nutritious diet is another major factor that patients can control in terms of promoting healing during/after treatment and reducing risk of recurrence. Often more important than calorie counting is making sure you eat a balanced diet with the right macronutrients (proteins, carbs, and fat) and micronutrients (vitamins and minerals), and limiting foods that are known risk factors for recurrence, such as added sugars, processed meat, and alcohol.
Sleep - Sleep is incredibly important for both healing during and after treatment, as well as reducing risk of other conditions. Many patients struggle with insomnia or sleep quality, which can exacerbate symptoms of depression and anxiety, so it's important to stay on top of sleep hygiene and talk to your doctors if you're experiencing difficulty.
Psychosocial Aspects of Survivorship
Empowerment & Advocacy - Taking an active role in one's survivorship plan is arguably the most important aspect. As a patient, making informed decisions and ensuring you receive the care you deserve can not only reduce stress but improve outcomes. You can do this by listening to your body, learning about your diagnosis and treatment options, and proactively communicating what you're experiencing and advocating for what you need to both your medical team and support system.. There's also a lot of self-work that goes along with a cancer diagnosis, including behavior and lifestyle changes.
Mental & Emotional Health - It is common for patients to experience serious psychological and cognitive side effects as a direct result of treatments (e.g., depression, anxiety, chemobrain) as well as the incredible stress of coping with and managing diagnosis and treatment. This is also important for caregivers and family. Mindfulness, professional counseling/therapy, medication, exercise, and support groups are all examples of ways to improve and enhance mental health during and after treatment.
Sexuality, Intimacy & Fertility - Unfortunately this is often an uncomfortable or taboo subject. The reality is that cancer treatment can significantly impact a person's ability and/or desire to be intimate with their partners - many don't talk about it, but there are treatments and resources that can help. Also, younger patients face risk of infertility and must make difficult decisions about fertility preservation before treatment starts.
Career & Finances - This can be a major source of stress and uncertainty, so creating a plan and finding resources to support you from the beginning is important. This involves tracking medical bills, dealing with insurance companies, budgeting to account for unforeseen medical costs, and finding resources or crowdfunding to ease financial burdens. Patients are also often faced with decisions around whether they can continue working in the same capacity during and after treatment, and changing priorities may have them re-thinking their career path.
Life Logistics - I admit this is a bit of a catch-all category, but it's still important and often a driver of stress for both patients and their families. With a cancer diagnosis, both during and after treatment, patients may need to think about and plan differently for things like childcare, transportation, living arrangements, and appointment schedules, to name a few.
Relationships - A cancer diagnosis can change the dynamics in many relationships a patient has, including family members, friends, colleagues, and acquaintances. Also, having a good support system is important, but factors like fatigue and immunosuppression can alter a patient's ability to keep up with their normal social interactions. It's important to communicate to your network what you need and how they can best help you - as well as communicate when well-meaning words or actions are not helping you.
Spirituality & Higher Purpose - Many patients connect more deeply with their faith, spirituality, and/or meditation practice to help them cope and stay positive through difficult times. Patients and survivors also often make meaning of their experience by using it to identify their higher purpose and by giving back to their communities, other patients, or to research.
More and more cancer centers and oncologists are improving their survivorship planning services, and I truly appreciate that I am able to go to a cancer center that has a dedicated doctor who focuses on survivorship. But if you or your loved one has been diagnosed with cancer (whether you are still in the screening process, in the middle of treatment, or finished with treatment) and aren't aware of any of these more holistic survivorship services available at your clinic, here's what you can do:
Ask! Check out your cancer center's website or call to see if they offer any survivorship clinics/services, and at what point in your care those services are available. If these services aren't available, you can still guide your own survivorship planning.
Create a list of your own personal wellness goals, your top challenges to living as fully as you desire during/after treatment, and questions/areas of confusion. Bring these to your appointments with your oncologists, social worker, specialists, or any other members of your care team who will help answer your questions and provide advice for what to include in your plan.
Make a plan. Prioritize what you need to do, and break it down into actionable steps. Don't try to do everything at once - focus on what's most important and start to build habits. Don't worry about creating a perfectly formulated plan. The most important thing is that you create something that works for YOU.
In future blog posts, I'll cover each of the 12 areas in more detail and possibly create a sample plan that other patients/survivors can use. In the meantime - I would love your feedback on the model of survivorship I described above. Does it resonate with you? Are there any important areas missing? Which areas would you like for me to dive into first?