by Shane Peters,
NET Caregiver, NETCONNECT Mentor
Shane also wrote the blog post, “Scan Results: To Check or Not to Check.”
“Make sure to see a NET specialist.” This is often the advice we hear in the neuroendocrine cancer community. But how do you go about doing this? This article tackles an important topic: getting your scans to a specialist—an important part of the process of seeing a NET expert.
Just about all patients get diagnosed locally, sometimes hours away from the closest NET specialist. So how do you get an initial appointment with a specialist? You’ll need to send over your pathology report, lab results, and most importantly, your scan images. In this article, we share some tips on getting your scans so that you can have a productive appointment with your NET expert.
What scans? MRI, CT, and PET scans (which can be both FDG and DOTATATE PET scans.)
Why? In order to give a thorough assessment and guidance, your NET expert will want to see the actual images stored on a compact disc (CD) and not just the written report or summary created by the radiologist. At some institutions, the actual images are also called the “electronic copy,” as opposed to the “paper copy” which is the written report. In this article, we call them “CDs” or “CD scans” or “CD copies.”
Unfortunately, getting CD copies of your scan images can be a frustrating process, especially if you’re not aware of how the medical record release process works at your medical institution.
It’s crucial to have physical CDs of the images (not just the written reports) because this is what a skilled oncologist or surgeon will refer to for the exact intricacies of your case. Since NET is quite a unique disease, the radiologist’s impressions in a scan report often do not provide enough information for important decision-making, notably when surgery is an option.
This article covers how to get multiple copies of your CDs and also how you can efficiently send them to a specialist for a consultation or second opinion. We’ll explain the process of obtaining new scans as well as the process of getting older imaging. We’ll wrap up with how to get these scans to your specialist and provide some tips you can use moving forward.
Please keep in mind that every medical institution may have a different release of information process. Below is a generalized overview of a typical process.
Information To Gather and Forms To Complete
Medical release form. Medical centers usually have a medical release form (sometimes referred to as a “release of information”) that must be completed before scans or medical records can be released to you or sent to another medical facility. We recommend completing one form for the NET specialist and one for yourself in order to save a copy of the information in your personal records.
Do note, it’s possible to authorize someone else to pick up or release records on your behalf.
These forms may have to be completed on a yearly basis or per request, but hopefully, they will be kept on file to expedite future requests. Your medical release/request form must be on file before the institution can release any information on your behalf.
Addresses. You’ll need to get the mailing address for your specialist. This may not be the address you find on the hospital’s website. Ask the care team’s point of contact (which could be a patient navigator, intake coordinator, or new patient coordinator) for the exact address to send scans to and to whom they should be addressed. Don’t forget to include specific details such as a floor number and office number.
Phone numbers. We recommend getting the following phone numbers:
The doctor’s main office number.
The medical records number (sometimes referred to as the “film library”).
The radiology library number. (This might be the same as medical records, depending on the institution.)
While requests usually can be placed over the phone, it’s worthwhile to have a contact person at the medical records or film library, so you can ask “Did you receive my request?” and other pertinent questions.
Fax numbers. You’ll want to get fax numbers for the following:
The office of the NET specialist the care team referred you to.
The medical records or radiology library office you’re requesting the images from. This is where you’ll send requests to get scans to (see “getting prior scans” below).
Email addresses. Find out if your local medical records/radiology library has an email address you can email your requests to directly. Since scans of release forms can be sent electronically, this is often easier than faxing. (And, let’s be honest, most of us don’t readily have access to a fax machine.)
For your convenience, attached to this article is a form you can print out and use to make sure you’ve collected all this information. Keep the printed form in a folder or binder as an easy- access checklist in the future.
Getting CD Copies of New Scans
Fortunately, at most institutions, it is much easier to get copies of new or upcoming scans.
First, before going to your scan appointment be sure you have the mailing addresses you want to send your scans to.
On the day of your scan, some institutions allow you to leave, that same day, with CDs of your scans in hand. Fill out the necessary paperwork and wait patiently after your scans for them to be processed and saved to a CD. Request two copies: one for your specialist and one for your own records. As a rule of thumb, you should always keep copies of your scans.
Other institutions have you complete a form on the day of your scan and then send the scans to the requested institution, once they’ve been processed. This often allows the medical records department to receive the paperwork the next day, prepare the scans, and ship them out once the written summary report is finalized. It does make the process a bit easier, though the processing period is unknown. This is where having the phone number of the medical records/radiology library comes in handy to confirm completion and shipping.
Getting Prior Scans
If required, fill out a medical record release form for the medical facility you’re requesting the scans from. On this form, you will include the information regarding where you’d like the scans sent to.
Contact the medical records/radiology library with your request. They will likely have you complete a release form that can be faxed, emailed, or filled out in person. The form typically includes the following information:
Patient date of birth
Medical record number
List of scans being requested, including the types of scans and the dates of the scans.
The name and address of where the scans are being sent.
Request two copies of your scans, one for you and one for the physician. Having an extra copy gives you the opportunity to mail them yourself, in case scans get lost somewhere in the process. This also ensures that you’re not giving away your only copy, as institutions do not generally return CDs.
Get a tracking number. If your hospital is mailing out the scans via FedEx, UPS, or USPS, request a tracking number. This number is useful for tracking where your scans are in transit and who signed for them at delivery. You can usually get this by calling the radiology library directly.
Sending or Shipping Scans
Learn the process of the medical institution where you receive your scans.
Will scans be sent out via priority mail or another carrier? This will give you an idea of how long it will take for the CD to arrive at the intended medical location.
What’s the average length of time to process the request? (When will the CD be shipped after you submit your request?) Remember to take this into account when estimating how long it will take for the CD to arrive at its destination. You can then anticipate when to schedule your appointment with the doctor receiving the scan.
Can you pick up scans in person? It might be faster to go to the medical facility or film library to pick up the CDs and then mail them yourself. Some receiving institutions provide a UPS label or FedEx account to expedite the process of mailing the CDs yourself.
What are the costs? Most hospitals will not charge you for the cost of one CD but see if there is a fee for an additional CD. This is a good tip for getting medical records, as well. They might also charge a fee for processing or shipping.
Learn the process of the receiving institution.
What is their preferred method of delivery? Some receiving institutions have a preference. Some even provide a UPS label or FedEx account so you can mail the CDs yourself to expedite the process.
Where should you send the CDs, and to whom should they be addressed to? Confirm the address of the receiving person/team.
Which scans do they need? Typically the receiving institutions also want prior scans to compare with the most recent scans.
Do they also need the written report(s)? Some institutions want the written report or paper copy to be included with the images, while others do not require this because they can be found in Epic or other shared data platforms.
Can you upload scans online? Ask the receiving institution if they have a way to send the scans online. If there is a way to do this, and if you’re familiar with the process, you can upload the images yourself.
Hospitals might have two options: upload via MyChart or upload via the institution’s portal. Ask if they can provide step-by-step instructions for uploading scans.
This can be a complicated process, but once you’ve gotten used to it, it can be quite efficient.
Unfortunately, if you do not have a CD drive, you won’t be able to upload the scans yourself. You’ll have to mail them.
After you have all this information, you’ll need to find out what your best option is: mailing your scans or uploading them online. Keep in mind that whichever method you choose, picking up the CDs on the same day as your scans may speed up the process.
Undoubtedly, this process can feel overwhelming, especially when navigating a cancer diagnosis. Remember that you’re not alone. Do not hesitate to reach out to your hospital’s medical record department or even your oncologist's office to ask for help. If you would like to talk to another patient or caregiver who has been through this process, feel free to contact LACNETS. We have a team of NETCONNECT mentors who would be happy to listen or share their experiences.
After three and a half years, I’ve finally gotten the hang of the requisition and sending imaging process. But I’ve learned the easiest way to take care of this is the day of scans. We hope you find the method that works best for you!
This blog is for educational purposes only and does not constitute medical advice. It does not provide a medical professional’s opinion or advice, nor is it an endorsement of particular treatments. You are advised to seek appropriate licensed medical/professional help and discuss your individual care and treatment plan with your medical team.
The content in this blogpost is the opinion of the author and the information is neither provided by nor endorsed by pharmaceutical companies.