After an initial cancer diagnosis, many patients describe how disorienting a cancer diagnosis can be. Patients often explain that they feel a sense that they were going along with their lives when suddenly they find themselves on a new path, not of their choosing. Once on this new journey, a range of emotions appear including sadness, guilt, grief, and anger. Most often, patients describe feeling out-of-control as they try to take in new information about their diagnosis, treatment, and prognosis.
Caregivers also express that they are juggling a lot of new information and are searching for ways to be helpful to their loved ones. Whether you are a patient or caregiver there are ways to take in the new information and get support as you find yourself in a new world of medical terminology.
Here are some ways to make to help manage this onslaught of new information:
1. Seek out reliable sources of information. First, and foremost, this should be your oncologist or surgeon. If you want to get a second opinion you can certainly do so. It is important that you feel that you understand the proposed treatment being offered and that you can make an informed decision.
2. Avoid too much internet research. While there are some wonderful resources available for cancer patients online, there is also a lot of information that is not helpful. Here are some trusted sites that I often share with patients:
- American Cancer Society www.cancer.org
- National Cancer Institute www.cancer.gov
- Chemocare.com www.chemocare.com
- MD Anderson Cancer Centre www.mdanderson.org
- Leukemia and Lymphoma Society www.lls.org
- Livestrong www.livestrong.org
3. Write down your questions and the answers. Often as you are at home, you will think of questions you have. By the time you get to your next appointment, you may forget them especially when your doctor comes in with a set of information he/she wants to share with you. Once you have the answers, it can be helpful to write them down as you may forget them and you want to be able to go back to get the information you need from your notes.
4. Bring someone with you to appointments. When you are experience high levels of stress and anxiety it can be difficult to process information. Because the initial appointments you have with your oncologist are filled with new and sometimes scary information, it can be extremely useful to have someone else who can help you to process the facts you have heard. Asking the person who comes with you to take notes on the appointment to compare to your own can also be incredibly helpful.
5. Get a file for your cancer paperwork. You will be getting a lot of paperwork during your treatment. Everything from insurance information to facts ab0ut the treatment your are receiving and test results may come in handy in the future but staying organized is key. Many patients find a large expandable file or several files in a file box to be helpful. Once treatment is over you can go back and use this file to make a smaller binder that is a highlight of your treatment, test results and ongoing medications to help you communicate with your medical team.
6. Connect with other survivors. Many patients find that talking to others in the cancer community can help offer a different perspective on their experiences. It can be very helpful to find someone who is further along in treatment and who can offer you advice, empathy and support as someone who has walked this path before you. It is incredibly important to keep in mind that every survivor’s experience is unique. Try not to get lost in internet chats and groups that leave you feeling overwhelmed and do not see medical opinions from people that are not medical professionals. Do find a support group or online community that offers emotional support and encouragement. Many support groups are led by mental health professionals that can help the group focus on helpful subjects.
National Support Resources:
· The Cancer Support Community www.cancersupportcommunity.org
· Livestrong www.livestrong.org
· Imerman Angels www.imermanangels.org
· American Cancer Society www.cancer.org
· Leukemia and Lymphoma Society www.lls.org
· National Cancer Institute https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/support-groups
· Cancer Warrior Alliance http://cwa.life
· Cancer Care https://www.cancercare.org/support_groups
Local Los Angeles Resources:
· WeSpark (Los Angeles resource) www.wespark.org
· Los Angeles Cancer Network www.lacancernetwork.com
7. Seek professional support when needed. If you find that you are so overwhelmed that you are having difficulty making decisions or that your distress level is so high that it is impacting your ability to stay engaged in the treatment process it may be time to get support from a mental health professional. Support in therapy offers you the chance to speak with someone outside of your friends and family to help you process your experience including feelings of fear, anger, sadness, and loss. If possible, find a professional therapist who is experienced in working with cancer patients. This therapist can help you to decrease your level of distress and can be a sounding board as you process all of the information you are learning about your own diagnosis and treatment course.
You will find that it gets easier to take in all of the medical terminology and the large number of facts being presented to you as you move along in your own treatment. Although no patient plans to become an expert in cancer, you will develop a new knowledge base over time that will make it easier to navigate discussions with your medical team. For now, it is important to keep in mind that this information is brand new and it is perfectly normal to feel overwhelmed, numb, angry, confused and frightened. Try using the strategies and resources presented in this post and do not be afraid to ask questions as many times as you need to in order to understand your options.
If you have questions about this blog or any information included on this site please feel free to contact Dr. Davidson at info@cancerpsychologist.com.
Dr. Davidson is a health psychologist, in Los Angeles, whose practice focuses on support for those with a range of medical illness. Her specialization in cancer allows her to help patients adjust to their diagnosis, cope with treatment, and transition back to work and family responsibilities after treatment has finished. Dr. Davidson has assisted patients in finding new ways to achieve a greater sense of wellness as they adjust to a "new normal". Her focus is on helping patients improve and maintain the quality of their lives regardless of illness trajectory.
For more information about Dr. Davidson please visit www.stephaniedavidsonpsyd.com