Published in Brighter Magazine, January 2025
2020 was a lousy year. First, Covid-19 hit in March, quickly shutting the world down. Then in October, out of the blue, I was diagnosed with stage 2 ovarian cancer, shutting down my own world. Before this time, as a nurse with 35 years of experience, I was aware that ovarian cancer often impacts many women of all backgrounds and is difficult to treat effectively. Despite knowing the facts, it never occurred to me that I would ever be one of those people.
Prior to my diagnosis, I would characterize my health as excellent. I had been a physically active woman for the last 50 years, eating a healthy diet and weighing in at the same weight I was at 18 years of age. Like so many others diagnosed with cancer, I was completely shocked to receive this news.
Knowing how difficult it is to deal with overwhelming medical news, I decided to write an article that I hope is helpful when confronted with a cancer diagnosis.
How to Proceed Forward with A Cancer Diagnosis
When I was initially diagnosed, I found that, I needed to identify a “Care Partner” and/or a “Professional Health Advocate” to work with me. A care partner is someone who helps another individual. This individual/s may consist of one or more friends or relatives that can help a person newly diagnosed with cancer in several different ways. It can also be two or three special individuals who are interested in helping you and all of them can be considered care partners. In my situation my care partner was my husband.
A patient advocate has the capacity to visualize how each aspect of care needs to be connected and in what way. A health advocate can communicate your health care needs to the medical team, help solve the pieces of the puzzle and provide necessary and customized health information. Their backgrounds can vary from an experienced former nurse or social worker, to someone who has taken classes at a university. A professional health advocate, can be hired on an hourly basis to help you navigate your cancer journey.
For clarification, the use of the word they refers to a health advocate and/or a care partner. Who can play a vital role in navigating your healthcare. Here are some ways they can assist:
- Advocacy: In situations where you might feel overwhelmed, they can speak to your medical team on your behalf to ensure your needs and preferences are addressed.
- Research and Information Gathering: They can help gather information about medical conditions, treatments, and specialists, ensuring you are well-informed.
- Emotional Support: They offer reassurance and companionship during stressful times, helping you cope with anxiety or uncertainty.
- Appointment Management: They can assist in scheduling appointments and take you to your appointments.
- Decision-Making Assistance: They can help you weigh the benefits and risks of different treatment options.
- Available Resources: They can connect you with support groups, community resources, or additional services that may be beneficial.
Knowledge is Power
Understanding your diagnosis is crucial for making informed decisions about your care. Here are some tips for approaching your research effectively:
- Start with Trusted Sources: Organizations like the National Cancer Institute, Mayo Clinic, and the American Cancer Society offer credible, evidence-based information.
- Focus on Your Specific Diagnosis: Look for materials that address your specific condition, as treatment and management can vary widely.
- Understand Treatment Options: Research different treatment modalities, including standard treatments and emerging therapies, to explore what might be best for you.
- Clinical Trials: Investigating clinical trials can provide access to cutting-edge treatments and additional support.
- Beware of Misinformation: Be cautious of information from unverified sources, especially on social media, as it can be misleading.
Consider getting a second or third opinion.
You may want to consider another opinion to confirm your diagnosis and treatment plan to ensure it is accurate and appropriate. Another physician may have a different approach or insight that could lead to better options. A second opinion may also provide some reassurance on what you have been informed.
Based on your research and information from your second opinions, you can discuss these findings with your healthcare team. This can foster collaborative discussions and ensure all your questions are addressed.
Type up an Agenda for each Physician Appointment
A written or typed agenda will help keep you focused and make sure all your questions are answered, while guiding you through the items you need to discuss. My success on getting questions answered was dependent on my preparation. If you conduct your medical appointments like a business meeting it will help you take control of your appointment. Not only does it demonstrate your commitment to participate in your care, it reminds you of the agenda items you wish to discuss.
My patients have benefited from writing a list of benefits and risks for each treatment recommended and reviewing the list with members of their medical team, along with family members so they can make the best decisions.
Post Treatment Support
Transitioning after cancer treatment can be a profound journey, and it is essential to be kind to yourself and take the time you need to adjust. Support from your friends and loved ones will be needed at this time. This period will be different for each person and may be ongoing. Learn about Survivorship by educating yourself about what to expect post-treatment. Resources from organizations like the American Cancer Society or The National Cancer Institute can be helpful.
Embracing the mindset of a survivor can indeed empower individuals facing a cancer diagnosis. It fosters resilience and encourages proactive changes that contribute to both physical and mental well-being. Focusing on what you can control—like lifestyle changes, support systems, and positive thinking—can make a significant difference in your journey.
Since navigating life after cancer treatment can be challenging, both physically and emotionally, it is normal to feel a mix of relief, anxiety or sadness after your treatment is completed. Speaking with a professional can help you process your experiences and feelings. In addition, getting connected with a support group can provide comfort and understanding when others have gone through similar experiences.
Focusing on a nutritious diet that is rich in fruits and vegetables and lean proteins can be helpful. I consulted with a nutritionist which I found to be very beneficial. Engaging in regular exercise tailored to your ability can help improve your mood and physical health.
It’s now 2024 and things are looking brighter. Covid-19, for the most part has been downgraded to a flu like disease and I am free of cancer.
I was fortunate enough to get an early diagnosis and early treatment. By taking an active role in your cancer care, you can feel more empowered and engaged in your treatment journey. My background as a registered nurse and currently as a health advocate have shown me how informed and engaged individuals with cancer can feel when they are part of the decision-making process.
Cancer often acts as a wake-up call, prompting us to reflect on our priorities and what truly matters. Engaging in activities that bring joy and fulfillment can boost resilience and improve overall well-being. Whether it is spending time with loved ones, pursuing hobbies, or exploring new passions, embracing what you love can make a significant difference in your outlook.
Linda Winkler Garvin, MSN
Health Advocacy & Consulting
President & Founder, Patient Advocate Bay Area, Inc.
Ambassador & Advocate for The Clearity Foundation
E-mail: lindawgarvin@gmail.com
Phone: (510) 520-0186