Article previously published in the Cutaneous Lymphoma Foundation's Forum 2015 Issue 2 newsletter.
Alone and overwhelmed are the emotions I imagine my patients feel after receiving the news about their diagnosis of cutaneous lymphoma. I can’t truly understand what that moment feels like but I give it my best shot when discussing this diagnosis with new patients. In many cases, people have received brief information over the phone prior to our visit which can leave them with more questions than answers. There is hope for good news or at least answers on those initial visits. The difficulty lies in giving both hope and answers without being overconfident of medical knowledge and understating the potential severity of the disease. After a long discussion in clinic, I fear there is still a feeling of uncertainty and incompleteness. The natural question is “what do I do now?”
What are the next steps after being diagnosed with an incurable, or long term disease?
After the visit we (the medical team) continue to work on reviewing each case at our treatment planning conference (a time for physicians, PAs, nurses, and staff to discuss cases and treatments), getting treatments approved and scheduled, and calling patients and family with results and plans. Patients and families are left to waiting…one of the most frustrating parts of any process, but especially the process of cutaneous lymphoma.
Waiting is a terrible way to spend time. So, while there is nothing that can remove necessary waiting, there are certainly constructive things that can be done to combat lymphoma. Here are a few ideas:
Learn about your new diagnosis.
Fear is partly a result of the unknown. Cutaneous lymphoma is a rare disease with a lot of unknowns. That being said, there are plenty of reliable resources to help you through this stage. These resources include your physician and clinic staff, the Cutaneous Lymphoma Foundation web site, and other patients. In my experience, the smarter you are about lymphoma, the better you will do fighting it. The caveat is to be careful to stick to reliable sources. Searching the internet can increase fear as some sources “sensationalize” or focus on the worst possibilities.
Focus on the things you can control.
While you have no control over your diagnosis, your overall emotional and physical well-being is paramount to your ability to endure treatment and stay healthy and is under your control. Our bodies rely on energy to deal with stress, emotional or physical, we can fill our proverbial gas tanks to prepare for the lymphoma journey by eating healthy, exercising and relieving stress in other areas of our lives. Journaling can provide you an outlet, help you organize your thoughts and emotions, AND help you remember the questions you want to ask your doctor. Finances can be a major stressor in this situation. I recommend that ALL my patients apply for the grants and financial aid available to cutaneous lymphoma patients by virtue of their diagnosis.
Develop a strong support network.
The cutaneous lymphoma journey is a long one and will be difficult to navigate alone. Having a group of family, friends, and neighbors to support you can make the journey less unpleasant. Develop and strengthen these relationship whenever possible but especially right after being diagnosed. While you are actively receiving treatment, try to have someone with you at your visits. Having a second set of ears will help you remember more and give you a sounding board when you are faced with making treatment decisions. Reach out to others with cutaneous lymphoma either on line or in groups. These fellow travelers can be an invaluable source of understanding and strength just as you may be to them. Your physician, PA, nurse, etc. can also become part of this group. Reach out to them as often as you need.
It is commonly pointed out that the lack of control is one of the most aggravating aspects of living with cancer. Dwelling on things you can’t control can’t solve the problems you face. Focus on the things you have control over, be ready for setbacks, and keep a “beat cancer” attitude. As a medical provider I admit my inability to truly understand what it is like to have lymphoma and applaud each of you in your fight against it.