WeTrials
After learning your diagnosis and emotionally processing all the initial communication, it can be overwhelming to understand what happens next. Whether personally or through someone we know and care about, we have all been affected by devastating health news at some point in our lives. To not get lost in this challenging moment of your life, you should take one step at a time in a reasonable order. Below, you will find some tips and answers that I hope can help you overcome some difficulties and guide you through this process.
Owning your health approach
First, it is crucial to remember that no matter how much and what type of information you receive, only you can decide what is best for your health. This approach is known as owning your health. Taking your life under your control can seem challenging or even extreme, but these obstacles should not offset your decisions. Opinions and recommendations given to you may seem overwhelming and complicated to put together. They may sometimes even differ and contradict each other or your beliefs. You should not discourage yourself from taking your time to reflect on all the options you have and to figure out the best path for yourself. Understanding what is happening with you and balancing it with your life expectations should be one of the few priorities for your health. Your doctors should also support and encourage your wish to know more about your disease process and take your health under control.
Is your case an emergency or not?
One of the first things to do is clearly understand whether your case is an emergency or not. Although it can be scary to hear the word “tumor”, most tumors do not need urgent interventions. Rather, they require careful evaluation of all essential health parameters and accounting of all necessary details of the disease. Doctors often do so to make sure that you receive the most appropriate management. Once you have confirmed that your case is not an emergency, do not be afraid to ask for a second opinion. Some situations may be more complex than others, and a few different views might even be necessary to have a better picture of your tumor diagnosis. You should never feel limited by anything to seek valuable information and ask questions that you have in mind. Recently, I went through a similar situation with a family member diagnosed with cancer and seeking a second opinion made a world of difference. Ultimately, your health and well-being are a top priority for any clinician taking care of you, and they should be delighted to address your concerns.
Expertise needed to manage your disease
Your path to contact the most suited professional in managing your disease can take several referrals from one doctor to another, and it can get confusing. For example, suppose a person has a brain tumor. That person may first experience some general signs and symptoms, which other unrelated conditions can also explain. After an examination by their primary care physician (PCP), the patient may be referred to a neurologist, who may then refer to a neurosurgeon or oncologist. In the end, the person’s treatment will be guided by one specialist who will work along with a team of other medical professionals. Every one of your doctors undergoes extensive education and training to treat you, including a scientific degree followed by medical school and clinical residency, making it more than 10 years in total. This is to make sure they have the training and experience necessary for specific conditions. When hearing about your options, make sure to ask whether the institution has a multi-disciplinary tumor board where your case will be discussed.
Medical teams that manage tumors may often be large. Sometimes you may wonder why do I need to see so many doctors? It surely can become tiresome to visit different clinicians spending hours and days in hospital rooms. You might even feel stressed or anxious because of this process. It is probably best for you to realize everyone’s work at the very beginning of your treatment, although certain things will be better understood during the process itself. It would be helpful to have brochures with information on your healthcare professionals as well. Knowing members of the medical team responsible for your treatment and care is also useful for your future visits and referrals. Once you know the role of each doctor whom you attend, it will be much easier for you to keep your appointments straight and not to miss, forget or confuse any of them. Additionally, you may realize better when and in which situations you may need to visit one of your many doctors.
What are clinical trials and should I consider them?
However, we should remember that every situation is different, and in some cases, science does not have a standardized approach yet, or there is simply more to be realized. Also, depending on where you live and the resources available, the standard of care may be different. In my case, not all of the “standard” medications were available in the country where my family member was diagnosed and, as such, the physician team saw limited value in extended genetic testing of the tumor to find druggable targets. Clinical trials may offer new treatment alternatives or potential scientific breakthroughs that often become the standard of care in the coming several years from now. Being part of a clinical trial can potentially make you eligible for access to some of the most advanced diagnostic tests as well. Treatments offered through clinical trials are in the process of testing and approval for especially unusual, complex, aggressive, or late-stage diseases. They offer the potential for more innovative and developing techniques based on rigorous scientific research and are extensively tested among selected and most suitable people. Clinical trials are designed and carried out by large teams of medical professionals, data scientists, and clinical researchers. Their main goal is to find new ways of managing and treating difficult diseases. Often, these teams aim to discover novel approaches that are more effective and less bothersome than the traditional ones used in medical practice. All clinical trials are overseen by regulatory bodies inside the medical institution and at the government level. Safety is of utmost priority in all clinical trials. Overall, clinical trials aim to explore treatments that will make the lives of people affected by diseases longer, healthier, and happier.
If you wish to know more about clinical trials, whether you are eligible, and how potentially you can be enrolled in one, there are several ways to do it. First, you may ask your healthcare provider or a clinician who takes care of your health about available trials for your condition. Most hospitals and medical centers in the United States conduct their own trials or participate in one or multiple clinical trials that involve several institutions simultaneously. Even if the center where you are diagnosed or will be treated does not have an ongoing trial for your situation, it may provide you with information about other sites where suitable clinical trials are carried out. Make sure you ask either way!
Second, if you have gathered enough information about your condition, you can visit one of the major online platforms that give details about clinical trials for different diseases. These websites include National Clinical Trials Network (NCTN), NCI Community Oncology Research Program (NCORP), Experimental Therapeutics Clinical Trials Network (ETCTN), NCI-Designated Cancer Centers, Center for Information and Study on Clinical Research Participation (CISCRP), NIH Clinical Research Studies. Here, you can find a trial and explore how to be enrolled in one of them. Although all these websites contain lists of clinical trials and their key descriptions, not all of them have the same goals.
Some platforms may be designed to educate distinct groups of people about the intentions of clinical trials, while others may help you find dedicated medical centers where studies are conducted. They may also refer to specific trials with a detailed description that participants need. For example, www.clinicaltrials.gov is a nationally-funded platform for registering clinical trials. It serves as a good resource for knowing high level details about the study, when it was registered, any changes that have been implemented, and whether the study is active or not. Determining the specifics of the study and eligibility may be challenging, even for healthcare providers. So do not be discouraged if you feel confused.
The information available on these platforms can be overwhelming and difficult to understand at first. So, feel free to bring it back to your healthcare team and ask for their help to break it down for you. You can also contact us for assistance at any time! We will be delighted to explain and clarify all the information you find and assist you in finding and getting enrolled in the most appropriate trial for your situation.
