A diagnosis of cancer triggers distress, uncertainty and fear ? all of which creates the need for many important conversations with the patient, physician, family and care providers. The key to dealing with these emotional reactions is to work through a series of six steps that will help the patient to overcome the paralysis they can cause and move forward. Armed with increased knowledge and confidence, the patient can make the informed decisions needed to embark on an effective treatment plan.
These steps include:
- Embrace the fear
- Fill the unknown with knowledge
- Chart the progress
- Identify and deal with self-defeating behaviors
- Get past indecision, and
- Find ways to fuel the journey.
The structured process provides patients, and everyone who seeks to help them, with navigation tools to work toward an effective cancer treatment and recovery.
?Never go to the doctor on your 50th birthday.?
?It was just another day. I had been feeling more tired than usual and decided it was time to schedule that long overdue check-up. I was about to turn fifty, a good excuse to go see my doctor for a regular annual exam.?
It did not go as planned. The doctor discovered a lump and symptoms that were not right. Next came an immediate referral to the radiologist and blood testing. Later, the doctor called and delivered the news in a slow voice, sounding calm and serious. ?You have cancer?.
?My blood ran cold. I started shaking. I felt cold water running through my veins.?
Medical literature confirms that the startling diagnosis triggers distress, uncertainty and fear, all of which sparks the need for many important conversations with the patient, physician, family and care providers.
Moving from Fear to Action
The key to dealing with the uncertainty and anxiety is to work through the following series of six steps to help the patient overcome fear and paralysis. Gaining knowledge will build a patient?s confidence to make the informed decisions needed to embark on an effective treatment plan.
Embrace the fear
After hearing their diagnosis, cancer patients report feeling numb and in a fog. It is not yet time for bravery, but rather to acknowledge the reality of one?s diagnosis. Fear is a healthy reaction. It means the person is paying attention. While fear provides momentary insulation and a perceived distance from the threat, it only postpones facing the reality of having the disease.
Painful as the fear is, it is important to accept it and not let it stand in the way of moving forward. It means adopting a mindset of being comfortable with the discomfort of not knowing.
?While I could maintain during the day, at night I had to let the fear wash over me. It was really scary, but once I acknowledged it, I?d cry, then go to sleep and be ready in the morning to face another day of figuring out what to do.?
Objective: Allow the patient to feel the scariness of the diagnosis to reinforce what needs to be done. This will build their confidence to create and embark on an effective treatment plan.
Fill the unknown with knowledge
Most newly diagnosed cancer patients begin with a low baseline of knowledge. Before mapping a treatment plan, they have to learn about their disease and options. They also have to identify their key care providers and assemble a treatment team. The lack of knowledge is daunting, and the discomfort is a formidable challenge that can freeze patients into inaction.
?I had no idea what to do first, much less second.?
?I didn?t know how to pick a surgeon, let alone who to pick.?
?My regular doctor told me to find an oncologist. I barely knew what that was.?
Physicians and other service providers can help start the process by providing information that educates and empowers the patient regarding:
- Questions about their diagnosis, treatment options, health care providers, financial resources, support groups, etc.
- Actions recommended to address each question. They can include conversations with sympathetic friends, research of databases, calls to organizations and appointments with prospective health care providers.
- Most important, an individual progress plan containing a schedule with target dates for each activity.
The individual progress plan may not include everything or be perfectly organized, but it will guide the patient toward the best choices.
Using the individual progress plan, the patient should take one step at a time and strive to perform each step right away. Completing a step will allow them to feel better, even if only in the short term.
If possible, design the initial actions to choose a learning activity that feels native to patients. Some will prefer reading a pamphlet or a text, while others may opt for video or computer research. Sociably inclined people might find greatest success talking with friends and friends of friends. Still others go after the advice of medical experts. Be prepared to fulfill the patient?s need for education and knowledge in the way that works best for them.
Objective: Create and implement a structured learning process that directs patients towards an effective treatment plan.
Chart the progress
Successful initiatives need the rigor of tracking. Documentation of actions organizes the effort into one place and anchors intentions.
Maintain the individual progress plan in a paper or digital file that can be taken to all physician and other care provider appointments. After completing each action, record the date and what was learned. Update and revise the plan to keep it current.
To enrich the learning, patients can use the plan as a journal and include their personal insights and the expectations for the road ahead.
The individual progress plan provides a structure to move everyone forward. Cancer patients report that written progress plans are invaluable. They can include everything from the dates of chemotherapy to which days the patient can expect to feel slow and lethargic and which days will be filled with energy and enthusiasm for life. Including personal expectations in the plan adds to a sense of control over what otherwise feels like an uncontrollable situation.
?I?m a project manager, and this was a project.?
?Moving and acting was my therapy.?
Objective: Monitor the progress towards effective treatment and keep it relevant, alive and forward moving.
Identify and deal with self-defeating behaviors
Patients on the road to learning what they need to know to combat their disease will encounter many unexpected curves, bumps and hazards. The patient might learn on the internet about an experimental treatment not mentioned by their physician, find out that their insurance will not cover their preferred treatment option, or hear that the odds of their survival are not as rosy as they had believed.
Learning of these possibilities might frighten patients, causing them to react with self-defeating, defensive behaviors. Rather than exploring the import of such possibilities, they might run in the opposite direction. If that happens, it signals a time for those around the patient to offer helpful information and counsel to prevent a retreat from sound treatment decisions.
Common self-defeating behaviors include a quest for perfection, emotional disengagement and conflict avoidance. For example, patients might avoid scheduling doctor appointments or become immersed in doing and redoing the form of their action lists without undertaking any of the actions.
When self-defeating behaviors appear, it?s time to course correct. If the patient is aware of their behavior, they should reach out to a trusted friend, family member or health care provider for support. If the patient is unaware or stuck, any of these people can step up and intervene. In either case, they might take the following actions:
- Call the patient?s attention to the self-defeating behavior and its negative impact on pursuing effective treatment.
- Help them to slow down or stop what they are doing.
- Have a compassionate talk that acknowledges the pain and the difficulties the patient is having.
- Gently guide them back onto the path toward an effective treatment plan.
Objective: Recognize when self-defeating behaviors get in the way and overcome them with sensitivity to guide the patient back onto the road to effective treatment and maximum recovery.
Get past indecision
The fear caused by a cancer diagnosis can bring life to a standstill. It creates a lot of excuses for not acting normally. New cancer patients have no experience on what they need to know to make the right decisions. They might have worries about such issues as:
- Choosing the wrong physician
- Understanding what they have to learn and how to act on it.
- Being smart enough to make wise decisions for themselves.
No one can ever know everything. After working through the action list in the individual progress plan, there comes a point when major decisions must be made to launch the treatment. Cancer has a time imperative that cannot be ignored.
People tend to avoid making big decisions, particularly when they don?t know how they will turn out and have no prior experience on which to base their judgment. For all the advances in cancer treatment, much is still unknown. No treatment carries guarantees.
Doing nothing is a decision. However, the cost of doing nothing might be much greater than the risk of doing something. Make sure patients understand the true cost of doing nothing as it pertains to their long-term health.
There is no way to answer all the patient?s questions. Additional research might address some concerns, but at some point, the critical question has to be asked, ?Do we know enough to make the decision??
The best decisions are made after people are fresh, rested and have had a chance to mull things over. Give patients a chance to evaluate their options. Make sure that when they make the decisions to proceed, they have bought into the direction. If they feel like they have a king?s ?x? behind their back, they might unconsciously undercut the treatment success.
Breaking the decision down into smaller steps can help. What is important is to shift into a forward gear and test the road. If they hit a bump, they can always steer around it, with you supporting them. The main thing is to keep going.
Objective: Seek to assure that patients receive enough information to gain the confidence needed to make an informed decision.
Find ways to fuel the journey
The journey from cancer diagnosis to and through treatment is filled with fear. Once cancer is diagnosed, the development of an individual progress plan provides a new frame of reference that serves as a primary asset for the journey ahead. Learning about their disease, facing the unknowns and working with other people to formulate their unique treatment plan allows patients to take action and chose what will work for them.
Key to advancing the process, however, is for patients to identify a motivating purpose that will propel them through the fear of the cancer diagnosis and treatment. The more personal the purpose, the more fuel it will give. Ideally it comes from a place that resonates with deep meaning for them, offering a steady reminder of why the patient wants to stay the course despite its scariness. The reward is an increased prospect of recovery and a new perspective on life.
?Having cancer allowed me to pull from my best self. It is my character. (Getting cancer) kicked it up to a different level where I had to go if I wanted to live.
?I just wanted to beat this. What else was I supposed to do? I don?t think about it much now. I?m just grateful I did not have an aggressive cancer.?
?I kept thinking, I?m going to get through this, you crummy little germs!?
Objective: The key to achieving maximum recovery is to provide patients with a motivating purpose that in turn inspires those around them. It guides the patient and all those who want to help them through scary times toward recovery and a larger perspective.
Last Editorial Review: February 17, 2019
Featured Image: Surgeon talking with patient. Courtesy: ? 2010 ? 2019 Fotolia. Used with permission.
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