Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission
Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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Myeloma Diagnostic Testing
Myeloma diagnostic testing has come along way since my initial diagnosis in early 1994. All aspects of diagnostic testing have improved-
- blood,
- urine,
- imaging
- genetic testing
all forms of testing convey more specific information about the patient’s blood cancer than ever before.
The most significant change between then (1994) and now (2024) is the EHR or electronic health record. In 1994 my EHR was the exclusive purview of my oncologist and his hospital. Now, in 2024 all of my myeloma diagnostic testing results are in My Chart – a password protected electronic file that my hospital submits my tests to within 24 hours of the test being taken.
The downside of the 21st Century Cures Act requiring hospitals to send patients their myeloma diagnostic testing information is that patients don’t know what to make of their results initially.
The upside of myeloma diagnostic testing information in a secure online location that I can access anytime is that I can refer to my information again and again as I learn more and more about my incurable blood cancer.
What are the risks and benefits of cancer patients seeing their diagnostic testing results?
Benefits:
- Empowerment and Informed Decision-Making: Providing patients with access to their test results can empower them to actively participate in their healthcare decisions. It enables them to better understand their condition and actively engage in discussions with their healthcare team regarding treatment options.
- Increased Patient Satisfaction: Many patients express a desire to be more involved in their healthcare and appreciate having access to their test results. This can contribute to higher levels of patient satisfaction and a sense of control over their own health.
- Timely Awareness: Access to test results allows patients to be aware of their health status more promptly. This can be crucial in cancer care where timely decisions regarding treatment adjustments or further testing may be necessary.
- Improved Communication: Transparent sharing of test results fosters open communication between patients and healthcare providers, enhancing the doctor-patient relationship.
Risks:
- Anxiety and Psychological Impact: Learning about cancer test results can be emotionally challenging. Patients may experience anxiety, fear, or distress upon receiving certain information, especially if it is unexpected or indicates a progression of the disease.
- Misinterpretation: There is a risk that patients may misinterpret complex medical information, leading to unnecessary worry or confusion. This can be mitigated by providing clear explanations and offering support for interpreting results.
- Lack of Context: Test results often require clinical context for accurate interpretation. Without proper guidance from healthcare professionals, patients may struggle to understand the significance and implications of the findings.
- Loss of Privacy: Open access to test results may compromise patient privacy, especially if the information is accessed by unauthorized individuals. It’s essential to implement secure systems to protect patient confidentiality.
- Fragmented Care: In some cases, patients may attempt to self-manage or seek alternative treatments based on test results without consulting their healthcare team. This can lead to fragmented or suboptimal care.
Having access to my myeloma diagnostic information may seem insignificant. In order to understand the importance of this reality you have to understand that I had no way of accessing my myeloma diagnostic information from my diagnosis in January of 1994 through the end of my active treatment in 1997.
I had to submit a request to my hospital and pay for a hardcopy to be photocopies. A process that took weeks. Instant online access or weeks for a photocopy. The difference is remarkable.
Have you been diagnosed with multiple myeloma? Do you have questions about any of your diagnostic testing information? Let me know- David.PeopleBeatingCancer@gmail.com
Thanks
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Tests and procedures to diagnose multiple myeloma include:
- Blood tests. The M proteins made by myeloma cells can show up in a sample of blood. …
- Urine tests. M proteins can show up in urine samples. …
- Bone marrow tests. …
- Imaging tests.
How Do Patients View Their Cancer Test Results?
“After implementation of the 21st Century Cures Act in 2021, 75% of cancer test results were viewed by patients first compared with 37% in 2017, a trends analysis shows…
After the Cures Act, 75% of test results were viewed by patients before the ordering clinician, almost double the views in 2017,” the authors wrote. “How patients with cancer receive test results has implications for practice quality,” the study authors explained, noting that although “m ost patients prefer to receive test results immediately through the portal,” patients also “report increased anxiety when receiving abnormal results this way.”..
21st Century Cures Act: Implementation Without Understanding Implication?
“Designed to promote patient access to electronic health information, advance innovation, and address information blocking practices, the 21st Century Cures Act went into effect on April 5, 2021. This bipartisan legislation mandates that all medical test results now be released immediately to patients.
Since that time, scenarios like the one above occur all too regularly in my practice. In the first month alone, two different patient families devoted hours to researching the term white matter changes in the reports of brain magnetic resonance imaging scans of their elderly relatives. In both cases, this relatively common and medically insignificant finding obscured the positive news the scans conveyed: no evidence of brain metastases…
Clinicians are continually asked to see more patients in less time. When we devote time to reassuring worried patients and caregivers that an abnormal serum chloride or mean corpuscular hemoglobin concentration is not clinically meaningful, there may be less time to discuss truly important matters, such as reviewing prognosis, providing education on treatment adverse effects, or managing symptoms…”