Resources: Practical Advice for Newly Diagnosed Patients and Their Caregivers

Practical Advice for Newly Diagnosed Patients and Their Caregivers

It is normal and appropriate to be scared, overwhelmed, and feel all the emotions after hearing the words “leptomeningeal disease.” Digesting the diagnosis and prognosis takes time and looks different for each patient and family.

The path of this illness can vary, and each person’s experience is different. Disease progression can either be fast or slow. Symptoms can be mild, moderate or severe. Some people have few symptoms, while others have many symptoms.

First, understand the basics of the disease itself.

• How is it diagnosed and confirmed?
• What are the symptoms?
• What does treatment look like?

Unfortunately, there is no “cure,” but the goal is to slow disease progression and ease symptoms while maintaining good quality of life.

Once your diagnosis has been confirmed, learn about the possible treatments for your cancer and leptomeningeal metastasis, including systemic therapies, intrathecal treatment through an Ommaya reservoir, and radiation therapy.

Also, consider quality of life. Quality of life can look very different for each patient, but no matter what it looks like for you, having a good quality of life during this time is very important. Quality of life goals should be discussed between the patient, loved ones, and the care team as it will dictate the treatment.

Below are some tips for how to get started:

• Find a team that is in alignment with your treatment goals and cares about what is important to you.
• Ask how each treatment affects the patient during AND after the treatment.
• Understand that treatment decisions also are based on how well you are feeling and how well you are performing in your activities of daily living. How much are you able to take care of yourself?
• You can ask for a referral to a neuro-oncologist to help guide your oncologist with treatment. Often, neuro-oncologists work with radiation oncologists as well as neurosurgeons. This does not mean you will get treated with radiation or surgery, but it is good to know other options and that everyone on the care team agrees with the best treatment plan for the patient.
• You can ask for referral to a palliative care team as they can help manage symptoms as well as support you by discussing continued goals of care. Palliative care is a good addition to your care team, and the sooner you can involve them, the better. 
• Clinical trials in leptomeningeal disease are not very common; however, it is good to learn about trials that may be an option for you. Remember, clinical trials do not promise that treatment will effectively treat the disease, so be thoughtful if this is something you are willing to consider.
• Organizing all your medical information in a binder or folder can be helpful. By keeping everything in one place, you will be able to find information quickly if needed for a doctor’s appointment or any type of urgent hospital visit. You can also make a one-to-two page summary to bring with you.
• Get plugged in through your team’s social worker as there may be patient and caregiver support groups/ programs. If available, these groups can be helpful as they understand what you and your family are going through.