15 Oct Words of Wisdom for the Newly Diagnosed . . .
As an oncology health care practitioner and a caregiver to a chronically ill parent myself, I know firsthand about the gravity of a diagnosis that can change the course of life as we know it. With a new cancer diagnosis, many thoughts can run through your mind and can quickly become overwhelming to navigate. Is my diagnosis treatable? Will I be able to withstand treatment? What about my loved ones? What is my prognosis? These are just a few questions of the many that you may be faced with initially when receiving the news from your medical team. You may find that you have to make many decisions in regards to your health care in a very short timeframe. With a cancer diagnosis, time is certainly of the essence when it comes to treatment. Here are a few points to consider to ensure you are on the right track to a successful course of action for your cancer treatment plan.
In some cases, your cancer might have been found by a primary care physician. This may lead you to question if you need to see a specialist for your cancer type. It is certainly within your rights as a patient to get a second opinion. In some cases, patients will find an oncologist, either within their hometown or at a larger cancer specialty group to confirm their diagnosis. This may entail you having to undergo repeat testing, such as a biopsy or imaging studies like a CT scan or MRI. It may also be helpful to note whether a pathologist needs to re-read a biopsy sample to confirm your diagnosis. Many insurance plans actually require a second opinion before covering the costs of some treatments so obtaining one may be in your best interests.
The prognosis of your cancer is basically an estimate of the severity of your disease and how it may respond to a given treatment plan. This can also include what your life expectancy may be. Although this question specifically is difficult for doctors to ascertain as every case can be different, it is important to ask during your initial visit for the sake of you and your loved ones. In some cases, cancer that is discovered early may be treatable and also even curative. In other cases that are more advanced, there may be very few treatment options if any. It is also important to ask what the stage of your cancer is currently and if you have metastatic disease, meaning that the cancer has spread to other organs in your body. Oncologists are able to calculate this for you with specific formulas and by reviewing your body imaging studies.
Cancer treatment may mean a steady trail of medical bills for the foreseeable future. Depending on your treatment, cancer treatment and hospital stays can be quite expensive. Before you see an oncologist, be sure to call your insurance plan to help determine what may or may not be covered under your specific plan. You may be responsible for any uncovered expenses and should be aware of this as soon as possible. Once you do have a specific treatment plan in place, contact your insurance plan to ensure that services will be covered before beginning treatment. In some cases, participating in a clinical trial may or may not be covered by a pharmaceutical company. Be diligent and do your own research before signing a consent form for a specific treatment.
Resource: Triage Cancer has many resources on health insurance at https://TriageCancer.org/HealthInsurance and https://TriageCancer.org/Cancer-Finances.
Organizing your Medical Records & Preparing for your Initial Oncology Visit
Now is the time to make sure that your medical records are well organized and easy to follow. As an oncology provider who sees many patients who are newly diagnosed with cancer, I know how important the smallest details of a medical history are of the essence when it comes to making the most successful cancer treatment plan. Before your initial visit with an oncologist, make sure you organize your medical records. Some wish to put together a binder with divider tabs to keep the information as concise and readily available as possible. It is important to bring actual disc images of any CT, PET or MRI scans that you have had as well as their corresponding radiology reports to your appointment. Also make sure you have a list of all of your current medications as well as your family history at hand. Consider also bringing a current clinic note from your primary care physician or a specialist if you have seen one. Biopsy reports are also important to bring along as they can steer your course of treatment in a different direction depending on its findings. Also be sure to bring a list of questions that you may have for your oncologist. When in the exam room, it can be quite overwhelming to hear the advice your doctor may give you, so it is important that you have your own questions answered so you don’t forget later after your appointment is over. Be sure to take notes during your visit and ask your oncologist for drug inserts and patient education that can be printed for you in the office. Some chemotherapy and immunotherapy drug names can be a mouthful and are hard to pronounce. Having this information will be helpful when researching the treatment on your own later. Don’t be afraid to also take this opportunity to ask the oncologist about the stage of your disease and your prognosis.
Resource: Triage Cancer has a partnership with Ciitizen to help you gather your medical records. Visit https://www.ciitizen.com/triagecancer, or watch for more information about how it works.
Clinical Trial Participation
Clinical trials are not only for advanced cancer patients but may also be offered to a newly diagnosed patient. You want to be well informed about your disease and know all of your options for treatment. Be sure to ask your oncologist if you are eligible for any clinical trials. A great resource for patients to use is clinicaltrials.gov. Also inquire if a clinical trial specifically would be covered by your insurance plan.
Resource: Triage Cancer has a partnership with EmergingMed to help you find clinical trials. Visit https://TriageCancer.org/ClinicalTrials for more information.
Advanced Care Planning
Although it may be hard to talk about, it is imperative that you receive the care that you prefer. Advanced care planning allows for you to take the reins of your own health and may include documents such as a living will, medical power of attorney, and do-not-resuscitate orders. It is extremely helpful to have a discussion with your family and loved ones as well as your healthcare team to identify a clear understanding of your cancer diagnosis as well as the goals of your treatment. Having this discussion will ensure that your preferences are met in the event that you may not be able to speak for yourself.
Resource: Triage Cancer has many resources on estate planning at https://TriageCancer.org/EstatePlanning and https://TriageCancer.org/Cancer-Finances.
Support Groups & Caregiver Groups
Speaking to others who are fighting in the same or similar battle as you when it comes to facing cancer can be paramount for your emotional and mental well-being. Find a support group for similar cancer organizations and groups in your area and make an effort to participate frequently and meet new people who can help you through this journey. A simple Google search can help you find a number of resources. Also, caregivers such as your family and friends may want to be involved as well. In some cases, there are caregiver support groups that will provide your loved one with assistance and resources that will help them better care for you.
Facing a new diagnosis of cancer can be daunting, overwhelming, and burdensome for many. But by understanding your diagnosis and treatment goals and arming yourself with as much information as possible, you can be sure that you are well prepared for the fight and journey ahead of you. In the words of Cayla Mills, “you never know how strong you are until being strong is the only choice you have.”
-Amy Patel, PA-C Amy Patel has been a physician assistant at MD Anderson Cancer Center in Houston, Texas for almost a decade. She has worked with many different types of cancer patients throughout her career from the newly diagnosed to stage IV cancer patients on clinical trials. She specializes in chemotherapy education and side effect and toxicity management.
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