How to Gather Medical Records for a Cancer Consultation
What are Medical Records?
As a patient, your doctor(s) will accumulate many pieces of information about your specific situation, and store these in your medical records. These records include notes from appointments, lab results, reports, scans, and many other types of records. Medical records are almost always owned and managed by the healthcare provider, but you have a right to access your records (in person or electronically) and request physical copies (usually at a cost, unless being sent directly to a physician).
Electronic Medical Records
Medical centers have moved to electronic medical records (EMRs) and virtually all medical centers now offer some type of online portal or app that patients can use to access their medical records. However, the quality of these systems and what can be accessed is varied. We know these systems can be frustrating so we wanted to put together this guide to help you identify and access the essential documents that anyone looking to understand your situation will benefit from seeing.
Below we’ll go into more details about using patient portals and other methods of access records below, but first we want to go through the records we are asking you to gather and why.
Essential Medical Records
There are 3 documents every cancer patient should be able to obtain that will give any doctor a clear picture of your cancer and situation:
- A Pathology Report confirming the diagnosis
- Clinic Note(s) summarizing your medical history
- Imaging Report(s) documenting the size, shape, and location(s) of the cancer
Each of these items is detailed below:
Pathology Report (commonly called Surgical Pathology Report)
At some point, a biopsy or surgery was performed to obtain a sample of your tumor tissue and it was provided to the medical center’s pathology department. Pathology is responsible for diagnosing the type of cancer.
Pathologists examine the tissue and run a series of diagnostic tests to look for specific proteins in the tumor so they can identify the cancer type. They produce a pathology report that provides the formal diagnosis. A doctor usually can’t treat a patient prior to seeing this formal diagnosis, so the pathology report becomes a key for accessing both standard or innovative treatments.
With some hard to biopsy cancers, such as brain tumors, a pathology report may not be produced, and instead, imaging studies are used to diagnose. If the treatment includes surgery, a biopsy and pathology report may be completed to confirm the diagnosis.
A pathology report will contain your name and/or medical record number. It will likely have a header that says “Diagnosis” and comments on the tests run and the results. It could be a single page or multiple. It may or may not contain images or diagrams.
At Sagely Health, we do not need to see original slides (your biopsied cancer cells prepared for review under a microscope) for our work, but if you change medical centers, the new medical center might need to do their own review. In this case, you can request the original slides be transferred. Most often, they will be sent from hospital to hospital directly (this usually takes 1-2 weeks), but in some cases, they may be released directly to the patient.
A Recent Clinic Note
Whenever you have an appointment with your oncologist, cancer surgeon, or another doctor, they will create a note. These notes usually provide information on the current visit and sometimes include a comprehensive summary of your past and present medical history.
You should gather recent clinic notes from your oncologist (preferably) or cancer surgeon (if you haven’t seen an oncologist yet) that contains a detailed assessment of your current situation and a comprehensive summary of your medical history. The assessment will include recent treatments, side effects, and other issues. The medical summary will include the original assessment and the plans to treat your cancer.
This information might be found in a single clinic note, or in two notes. If diagnosed recently, the initial clinic note from an oncologist, cancer surgeon, or even your primary care doctor may be all that is needed (and available). If the most recent clinic note does not have a historical summary, also providing a prior clinic note that has a comprehensive summary will be helpful.
A clinic note should contain your name and/or medical record number, and will likely be multiple pages. The clinic note could be called something else like “View notes” or “Visit Notes”, but it should clearly be the doctor’s notes for a particular appointment. It will have headers for Impression (or Assessment) and Plan, and be signed by your doctor (electronically) towards the end of the report. Notably, this is different from an “After Visit Summary“, which is automatically generated, and does not contain all the information we’ll need.
Imaging Report(s)
Nearly every patient will have at least one imaging study (also called a scan) done to get some pictures of the cancer’s initial location (called the primary tumor) and possible imaging of other places to look for spread. The most frequent type of imaging study is a CT scan (also known as a CAT scan), but sometimes an MRI, PET/CT, ultrasound, bone scan, or X-ray may be used instead or in addition.
When you go and get a scan, the technician will take the pictures and then they will provide these pictures to a radiologist who will review them and create an Imaging Report. This report will usually contain information about the size, shape, location, measurements and other information about the cancer and its stage.
At Sagely Health, we normally do not need the actual images. We just need the report for the most recent scan for each type of imaging study you have had. For example, if you’ve had both a CT scan and an MRI, we’d like to get the most recent report for each. The report might be called a Study, Report, or Spectroscopy, and will usually contain headers like “Findings” (or “Results” and “Impression”). If the study covers multiple locations in the body, the report will likely have sections for different organs or parts of the body.
While we do not need the actual scanned images, when seeking a second opinion, the medical center will require a review of all images, so we do recommend bringing a copy of these images to the oncologist. These can be requested from the Radiology Department where the images were taken (usually front desk) and are usually given on a disc (CD) within a week of the request. We provide more information below.
Other Important Medical Records
Depending on your situation, there may be other documents that are useful to obtain and share. Gather what you can for your consultation.
Tumor Sequencing Report (Genetic Analysis)
Terminology may differ slightly, but gather reports of any genomic or genetic testing that has been completed.
Genomic testing is analysis of the actual tumor biopsy, which includes information about the tumor and any inherited gene mutations.
Genetic testing (sometimes called screening) is usually done via swab or blood test and will include overall information about inherited genetic traits. These will often look for common gene mutations associated with cancer like TP53, BRCA1, BRCA2, and PTEN.
We recommend every patient with high-risk cancer have genetic and genomic analysis done. If you have not had tumor sequencing done, we can advise you. If you did have your tumor sequenced, you should be able to obtain a report from either your medical records or directly from the company that performed the test. There are many companies that offer various types of tests including Foundation Medicine, Tempus, Guardant, and Caris. Some cancer centers also offer their own testing, including Memorial Sloan Kettering (IMPACT test) and Dana Farber (Oncopanel).
The report will likely mention genes and mutations of interest, and these can be incredibly valuable in identifying innovative treatment options. It is important for us to see the original laboratory report from the test (either from the company or the cancer center’s lab), as it will contain more information than a summary of the results
Operative Report
If you’ve had cancer surgery, the details of this surgery will usually be found in an operative report. It may document margins (useful details about the edges of the tissue that was removed during surgery) or other aspects worth considering, but are not generally as important as the essential documents above.
Recent Labs (Blood)
When you have a blood sample tested, the results can tell us about how your body’s organs are working. The blood test reports of greatest interest will have names like “CBC” (Complete Blood Count) and a “CMP” (Comprehensive Metabolic Panel).
Circulating Tumor Markers
A tumor marker is a molecule (usually a protein) found in the blood or other bodily fluids that increases in the presence of certain cancers, and can be assessed by a lab test. Examples include: CA-125, CA-19-9, CEA, and sometimes LDH, AFP, or others. Because non-cancerous cells can also produce these markers, they are not useful to diagnose cancer, but if cancer has already been diagnosed, and any of these markers are high, then the marker can be followed to detect growth or shrinkage (response) of the tumor. If you have had any of these markers assessed, it would be helpful to know the result, and if any trend over time has occurred (increases and decreases).
Imaging Studies on Disc
In essential medical records, we discussed getting Imaging Study Reports. However, when you want to go to another cancer center, either for a second opinion, or for treatment, the doctors will want to see the original scans themselves. It is wise to get all your relevant imaging studies (since diagnosis) placed on a disc (CD) to mail and/or carry to all other cancer centers you visit.
At most medical centers, you can request this CD through the radiology department (not the medical records department) and it can take a couple days to prepare. You will likely have to fill out a form to request (bring ID in case) and then go back several days later to pick it up. It is usually easiest to coordinate getting them when you will be going to the center anyway. Once you have the disc(s), it should be fairly easy to make a copy of it at home or at an office supply store.
We recommend always keeping one copy, and when providing it to another center, ask for the disc back at the end of the visit, once they are done uploading the contents into their own system.
How to Get Your Medical Records
Before electronic medical records (called EMRs) were available, the only way to get a copy of your medical records was to request them from your doctor who would have you fill out a formal request for their medical records department. This method still exists, but unfortunately, it takes time (and sometimes money) to find the records, copy them, and fax or mail a hard copy to another doctor (or release them to you).
For these reasons and more, getting medical records by this method is slow and cumbersome, and can literally take weeks to a month or more. Sometimes the process stops for some reason, but no one notifies the patient who made the request in the first place.
We recommend getting your records via an online patient portal (website or app) that is offered by your healthcare provider.
If you do not yet have access to an online patient portal…
We recommend the following approaches:
- Visit your medical center’s website and look in the navigation for an item such as: Login, Patient Access, Patient Portal, myChart, Enroll, etc. and follow instructions to set up a new account. You can also use Google to search for the name of your cancer center and the word “portal” to find a relevant link.
- Call your oncologist’s office and ask how to access your medical records online. They should be able to provide instructions for setting up an account. If you will be at the oncologist’s office, you can ask the support staff for assistance.
- If the oncologist’s office is unable to help you, on the medical center’s website, try to locate a phone number for patient relations, patient advocacy, or patient support. They should be able to connect you to the right department or help you to get set up.
Be Prepared to Answer Some Security Questions
When first setting up your account, you may be asked to go through a security check and be asked questions to verify your identity and therefore your rights to access your health records. Sometimes the security check is completed by a 3rd party service that has a different name from the medical center. Sometimes, you will be required to provide a code that is emailed/texted to you, or provided by the doctor’s office.
Also, when setting up an account, your email address will be an important identifier so make sure you check your spam filter if you’re expecting a confirmation email and don’t see it after several minutes.
If you have access to an online portal…
Great job getting access! Now, we have a few suggestions for finding and collecting your medical records within the portal. Your medical center might use a vendor like myChart or the portal might be managed by the medical center directly. In nearly all cases, you’ll need to navigate to the correct section to find what you’re looking for.
- Once you are logged into the portal, you’ll likely see navigation that includes “Test Results”, “Diagnostics”, or “Medical Info”. Go to this section and you will likely see reports of different types, like labs, scans and pathology (biopsies, surgeries, etc.).
- Look or search for “Pathology” to find the pathology report or surgical pathology report. You should be able to share, download, or export or save this file as a PDF file.
After you download, rename the file to include your initials, the type of report, and study date. For example: JS_Pathology_Jan032021.pdf
If you are unable to download, you could try taking screenshots or taking photos of printouts. - In this same section, you should be able to search for scans (search for “scan”, but if nothing comes up, try “CT”, “MRI”, “UTZ” (for ultrasound), “XR” (for x-ray), “Bone” or “PET”.
Find the most recent Imaging Study Report for each type of scan you have, download and rename. For example: JS_PET/CT_Jan052021.pdf
If it is easy to identify the 2nd most recent prior scan, download it too and rename it with the study date, as it can be helpful to compare recent reports for changes. - To find Clinic Notes, navigate to the section of the portal that is called “Visits”, “Past Appointments”, or a similar name, and there will likely be notes called “Visit Notes”, “Clinic Notes”, “Doctor’s Notes”, “Consultation Notes”, and/or “Visit Summary Documents” that you can download, screenshot, or print as well.
Find the most recent Visit Note and/or the Visit Note that has the most complete summary of your treatment to date by your oncologist (preferred), surgeon, or primary care doctor. Avoid the automated “After Visit Summary” when possible. If you cannot find a good summary, you may want to find the appointment where you were told your official diagnosis. - If available, you would likely find your tumor sequencing report, lab reports, and circulating tumor marker reports in the same “Test Results” section, but sometimes these are located in a section called “Laboratory” or “Lab Results” instead.
For circulating tumor markers, you can search for names like “125”, “19-9”, “CEA”, and “LDH” to see if any had been done. Some of these will be repeated over months, and the trends can be useful to see. These can be found usually by opening the test result and looking for a button or tab to see “trends” or “past results”. You may be able to download a trend report, take a screenshot, or print. - The operative report will likely be found in the past appointment section. Try to find the visit or appointment on the date of your surgery and see if there is a report to print or screenshot.
NOTE: If your portal is difficult to navigate and you cannot find individual records, you may find an option to download all your medical records, which you could do and provide to us. Some portals also provide an option to let others access temporarily.
If you cannot get access to a patient portal…
If there is a technical issue or a patient portal is not available, you can still request your medical records directly from your medical institution. It typically takes 2-3 weeks to receive the medical records using this method.
- Go to Google (or whatever search engine you use) and search for:
“[insert your medical center’s name] medical records release form”
You should find a form, you can download. See an example here.
- Complete the form with all the necessary information. When asked for dates, you can write in a range or indicate “all”. In general, check off all categories to share, unless there is information you want to keep withheld (for example: mental health records, HIV status, substance use records).
When entering where you want to send the records you can either put your information and forward them sent directly to your new doctor. - Follow the instructions to submit the form to the medical record office.
Need More Help?
If you need further assistance, please don’t hesitate to let us know.
