Transferring Care Between Cancer Centers

A transfer is not one task. Three separate things have to reach the new center, and they travel by completely different routes.

• Documents. Clinic notes, operation notes, treatment summaries, lab results. These move electronically and can move fast.
• Images. The actual CT, MRI and PET files, not just the radiologist's written report. These usually move as files or on a disc.
• Tissue. Glass slides and paraffin blocks from your biopsy or surgery. These are physical objects that have to be shipped, and there is often only one set in existence.

The tissue is the bottleneck almost every time. Start that request first, before the appointment is even confirmed.

HHS states the right plainly. "You have the right to see and get copies of your health information." That covers lab results, medications, health history and medical images.

Format. "In most cases, you can get a copy the way you want it, such as by e-mail."

Timing. HHS says your doctor "normally has up to 30 days to provide you a copy of your information." The formal rule is tighter than it sounds. A covered entity "must act on an individual's request for access no later than 30 calendar days after receipt of the request." It "may have up to an additional 30 calendar days" only if it sends you, inside that first 30 days, a written statement giving the reason for the delay and the date it will finish.

Fees. A reasonable fee for a copy is allowed. But "the fee may not be a per page fee if your information is stored electronically." A provider may charge reasonable costs of copying and mailing. It may not charge you for searching for or retrieving your records.

Unpaid bills. Access cannot be denied because you owe the provider money.

Sending records elsewhere. You can request that your doctor share your information directly with others.

Thirty days is a long time when treatment is running on a three-week cycle. Send the request on the day you decide to move, not on the day the new appointment appears in your calendar.

If the new team wants their own pathologist to look at your case, NCI is specific about what has to happen. You need to "obtain the slides and/or paraffin block from the pathologist who examined the sample or from the hospital where the biopsy or surgery was done."

NCI adds that many institutions provide second opinions on pathology specimens, and advises contacting them ahead "to determine if this service is available, the cost, and shipping instructions."

Do it in this order. Get the shipping instructions from the receiving center first. Then hand those instructions to the sending pathology department. Doing it the other way round is how people lose three weeks.

Ask for a copy of the pathology report too. NCI says it contains identifying information, a description of the specimen as seen by eye, a microscopic description, and a final diagnosis. Where relevant it also carries tumor grade, lymph node status, margin status, and stage, plus results of molecular tests such as hormone receptor status in breast cancer.

Ask the new center what they actually want: the image files, the written reports, or both. Most want both.

HHS lists medical images among the records you have a right to receive. Ask for them in a usable format and confirm the new center can open it before you assume it worked.

NCI publishes a list of questions to ask about any treatment facility.

• "Does it have experience and success in treating my condition?"
• "Has it been rated by state, consumer, or other groups for its quality of care?"
• "How does it check on and work to improve its quality of care?"
• "Has it been approved by a nationally recognized accrediting body, such as the ACoS Commission on Cancer and/or The Joint Commission?"
• "Does it explain patients' rights and responsibilities?"
• "Does it offer support services, such as social workers and resources, to help me find financial assistance if I need it?"
• "Is it conveniently located?"

NCI's Find a Cancer Center page lists all NCI-designated cancer centers in the United States, with contact details for referrals.

Then the practical one. NCI says to "ask your insurance company if the facility you're choosing is approved by your plan." Do this before you cancel anything at the old center.

NCI removes two common worries at once. "Getting a second opinion is very common." And "most doctors welcome a second opinion."

On money, NCI notes that "many health insurance companies pay for a second opinion or even require them, particularly if a doctor recommends surgery."

If you cannot find a doctor for one, NCI's Cancer Information Service can help, at 1-800-4-CANCER, which is 1-800-422-6237.

This is the single question most transfers skip, and the one that causes the real harm.

Ask both centers directly: on what date does the new team become responsible for me? And who do I call in the days between?

Get the answer in writing. Two teams each assuming the other is covering you is worse than either one covering you alone.

Treat the handover period as its own plan, not as empty space.

• Keep enough of every prescribed medicine to cover the gap, plus a margin for delays.
• Ask which emergency department to use if something goes wrong, and what to tell them.
• Keep your treatment summary and current medicine list on your phone, not only in a portal.
• Ask whether any scheduled treatment or scan can safely slip, and by how long.

That last question deserves a real answer with a number in it. Some intervals are flexible. Some are not.

NCI's guidance on tracking cancer care gives you the contents list:

• Dates of each medical visit.
• Tests and procedures received, with dates and results.
• Treatments received, with dates.
• Side effects and symptoms you have had, with dates.
• Any medicines prescribed.
• Other supportive or complementary care received.

Keep copies of treatment plans and results with it. A file folder works. Photos on your computer work. What fails is assuming the old center's portal will still let you in six months after you leave.

• What exactly do you need from the other center, and in what format?
• Who at your end receives it, and what is their direct line?
• Do you want the pathology blocks, the slides, or both?
• What are your shipping instructions for tissue?
• On what date do you take over, and who covers me until then?
• Is there anything in my current plan that cannot safely wait?

• Your Rights Under HIPAA: Get It. Check It. Use It. — U.S. Department of Health and Human Services
• How Timely Must a Covered Entity Be in Responding to Requests for Access? — U.S. Department of Health and Human Services
• Your Medical Records — U.S. Department of Health and Human Services
• Pathology Reports — National Cancer Institute
• Finding Health Care Services — National Cancer Institute
• Finding Cancer Care — National Cancer Institute
• Managing Cancer Costs and Medical Information — National Cancer Institute