Guest Blog By: Tambre Leighn, MA, CPC – Founder of Well Beyond Ordinary – Contact: Tambre@WellBeyondOrdinary.
As person diagnosed with breast cancer, you may have heard about clinical trials as a potential treatment option. While it would be optimal for all patients who qualify for a clinical trials to have the opportunity to consider this option, the unfortunate reality is less than 25% of patients are asked by their doctor or nurse.1
Of course, you can “just ask” but some people have questions or concerns about clinical trials or may be unsure of how to raise the subject with their doctor. To help you get past those hurdles, we’ll delve into the importance of asking about clinical trials, some tips on formulating questions to ask, and we’ll address common concerns patients may have when broaching this topic with their doctor.“Asking about clinical trials is an important step in taking an active role in your breast cancer treatment.”
Tambre Leighn, MA, CPC
The Importance of Asking About Clinical Trials
Clinical trials contribute to advancing medical knowledge and the development of new treatments for breast cancer. While there are no guarantees, with some trials you may gain access to new treatment approaches that are not yet widely available. Additionally, participating in a clinical trial often includes closer monitoring by medical staff and contribute to the overall understanding of breast cancer and its treatment.2
Of course, you need to weigh any potential benefits against your treatment goals, the logistics of taking part in the trial, potential side effects, and other factors. Working with your doctor, you can make an informed choice that is right for all aspects of your life.
Tips for Formulating Questions
Before you talk to your doctor about the possibility of a clinical trial, it can be helpful to prepare a plan for your conversation. Write down some questions you can ask about these four areas:
1. Trial availability: Inquire if there are any clinical trials available for your specific type and stage of breast cancer that might address your concerns. If you have early stage breast cancer and are worried about recurrence, you can ask about clinical trial options that could reduce potential risk of your cancer coming back.
2. Trial design and logistics: Ask about the goals of the trial, its design, and any potential advantages or risks associated with participating. Find out if you can get a copy of the Informed Consent form in advance or other patient education materials containing important information that must be disclosed about the trial. If English is not your first
1 A. Anderson, N. Getz, J. Benger. Applied Clinical Trials. Patient Input into Leveraging the Healthcare Professional’s Role. Applied Clinical Trials-04-01-2018, Volume 27, Issue 4. Published April 2018. Accessed October 19, 2023.
2 https://www.cancer.gov/research/participate/clinical-trials/why-participate
language, ask about receiving information in your native language and for the support of a medical translator. It is important to know your rights and ask for what you need.3
3. Costs and time commitments: Find out if your health insurance will cover any costs associated with the trial and if there will be any additional time commitments, such as extra appointments or tests.
4. Alternative options: If a clinical trial is not right for you, ask about other treatment options that may be available.
Addressing Concerns About Proactively Asking Your Doctor
Any doctor who puts their patient first will have no issue being asked about clinical trial options. The reality is that not every patient is fortunate enough to be seen by someone who welcomes inquiries. So, it’s
1. Focus on your concerns: Begin by voicing your breast cancer treatment concerns. Trials aren’t solely about new medications; they can encompass various aspects like improving quality of life, managing symptoms, or behavioral studies on physical activity, nutrition, and stress. Expressing your concerns may foster empathy with your doctor, clarifying that your inquiries are about exploring options to alleviate specific concerns or issues.
2. Bring a support person: If you feel uncomfortable discussing clinical trials alone, consider bringing a friend or family member to your appointment to provide support and help you ask the necessary questions.
3. Take notes or record the conversation: To ensure you remember the information discussed during your appointment, consider taking notes or recording the conversation with your doctor’s permission.
4. Be prepared to ask follow-up questions: After discussing clinical trials with your doctor, you may have additional questions or concerns. Don’t hesitate to ask follow-up questions during subsequent appointments or through your patient portal.
In The End…
Asking about clinical trials is an important step in taking an active role in your breast cancer treatment. By formulating thoughtful questions and addressing any concerns you may have, you can engage in a productive conversation with your doctor and have the peace of mind in knowing you’re exploring all available options for your care.
Author: Tambre Leighn, MA, CPC
Tambre Leighn, the founder of Well Beyond Ordinary, LLC, is a certified professional coach and behavior change expert who focuses on improving communications and engagement in healthcare.
3 Chen AH, Youdelman MK, Brooks J. The legal framework for language access in healthcare settings: Title VI and beyond. J Gen Intern Med. 2007 Nov;22 Suppl 2(Suppl 2):362-7. doi: 10.1007/s11606-007-0366-2. PMID: 17957427; PMCID: PMC2150609.