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PubMed This is a summary of 20 peer-reviewed journal articles Updated
Endocrinology

Building Your Care Team and Preparing for Your Visit

At a Glance

Because adrenal cancers are rare and complex, patients often benefit from care at a high-volume center with a multidisciplinary team. Bring original scans, pathology materials, hormone results, surgical records, and genetic reports to support an expert review.

Because adrenal cancers are exceptionally rare, they are often difficult to diagnose and even more complex to treat. Managing these conditions requires a level of expertise that is typically found at “high-volume” tertiary centers—hospitals that see a larger number of adrenal cases every year [1][2]. Observational data suggests that patients treated at these specialized centers are associated with better outcomes, including lower rates of cancer recurrence and longer survival [3][4].

Why an Expert Team Matters

In a specialized adrenal center, your care is managed by a multidisciplinary team (MDT). This is a group of specialists who meet regularly to review your imaging, pathology, and hormone levels to create a unified treatment plan [5][6].

This team approach is critical because:

  • Diagnostic Precision: Benign and malignant adrenal tumors can look very similar under a microscope. An expert adrenal pathologist is needed to accurately assess your pathology, including your Weiss score and Ki-67 index, which inform your risk and treatment plan [7][8].
  • Surgical Success: For ACC, experienced adrenal surgeons are more likely to successfully perform an en-bloc resection (removing involved tissue intact) and achieve an R0 resection (clear margins) [9][10].
  • Endocrine Safety: Adrenal tumors can cause life-threatening spikes in blood pressure or “crises” when they are touched or removed. Specialized endocrinologists and anesthesiologists are essential for managing these risks before, during, and after surgery [11][12].

Your Specialist Network

A comprehensive adrenal care network should include the following specialists (even if some are consulted remotely):

  1. Endocrinologist: Manages your hormone levels, ensures safe preparation for surgery, and manages long-term hormone replacement [1][12].
  2. Endocrine or Oncologic Surgeon: Performs the operation. You should look for a surgeon who performs adrenal surgeries specifically for cancer [1].
  3. Medical Oncologist: Specializes in systemic treatments like mitotane, chemotherapy, or immunotherapy [5].
  4. Genetic Counselor: A counselor will review your family history and arrange for germline testing to see if you carry a genetic mutation (highly relevant for PPGL and sometimes for ACC) [13][14].
  5. Radiation Oncologist & Nuclear Medicine: For patients needing external beam radiation or targeted therapies like PRRT [15][16].
  6. Psychosocial & Supportive Care: Oncology social workers and palliative care specialists to help manage symptom burden, “scanxiety,” and quality of life.

Preparing for Your First Consultation

When you visit an expert center for a second opinion or to begin treatment, you must bring more than just your medical records. The specialists will want to perform their own review of the original “raw” data.

The Essential Checklist

  • Imaging DICOM Files: You must bring the actual images from your CT, MRI, or PET scans on a CD or a secure digital drive. The written reports are helpful, but the center’s own expert abdominal radiologist will want to view the images themselves [1][17].
  • Pathology Slides: If you have already had a biopsy or surgery, ask the hospital where it was performed to release your “slides and blocks” (the actual tissue samples). Your team’s pathologist will review these to confirm the diagnosis [5][18].
  • Hormone Lab Results: Bring the results of all blood and urine tests, especially tests for metanephrines, cortisol, and potassium [17][18].
  • Surgical and Anesthesia Reports: If you have already had surgery, the “operative note” and “anesthesia record” are vital. They tell your new team how the tumor was handled and how your blood pressure reacted [5][19].
  • Genetic Testing Reports: If you or any family members have had genetic testing, bring the full lab report, not just a summary [13][20].

If traveling to an expert center is difficult, ask your local oncologist if they can facilitate a remote tumor-board review or telehealth consultation with a high-volume center [6].

Common questions in this guide

How do I find an experienced adrenal cancer center?
Look for a specialist hospital that regularly evaluates adrenal cancers and has a multidisciplinary team. Ask how many patients with adrenocortical carcinoma or pheochromocytoma the team and surgeon treat each year, and whether cases are reviewed by a formal tumor board.
Which specialists should be involved in my adrenal cancer care?
The team may include an endocrinologist, endocrine or oncologic surgeon, medical oncologist, pathologist, abdominal radiologist, anesthesiologist, genetic counselor, and, when needed, radiation oncology, nuclear medicine, and supportive-care specialists. These clinicians coordinate hormone testing, diagnosis, surgery, cancer treatment, safety, and quality-of-life support.
What records should I bring to an adrenal cancer consultation?
Bring the original CT, MRI, or PET image files in DICOM format, not only the written reports. Also bring pathology slides and tissue blocks, hormone test results such as metanephrines, cortisol, and potassium, operative and anesthesia reports, and complete genetic-testing reports.
Why does an expert pathologist need to review my slides?
Adrenal tumors that are benign and malignant can look alike under a microscope, so a specialist review can confirm the diagnosis. The pathologist may assess the Weiss score and Ki-67 index, which help estimate tumor behavior and inform treatment planning.
Why are hormone and anesthesia specialists important before adrenal surgery?
Some adrenal tumors release hormones that can cause dangerous blood-pressure spikes when the tumor is handled or removed. Endocrinology and anesthesia teams plan your preparation, monitor you during surgery, and manage hormone or blood-pressure problems afterward.
Should I ask for genetic counseling for adrenal cancer?
A genetic counselor can review your personal and family history and arrange inherited, or germline, genetic testing when appropriate. Testing is especially relevant for pheochromocytoma and paraganglioma and may also be considered for some people with adrenocortical carcinoma.
Can I get a specialist second opinion if I cannot travel?
Ask your local oncologist whether a high-volume center can review your case through a remote tumor board or telehealth consultation. The specialist center may still need your original scans, pathology materials, and laboratory reports for a meaningful review.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with adrenocortical carcinoma or pheochromocytoma do you personally treat each year?
  2. 2.Will my case be reviewed by a formal multidisciplinary tumor board that includes surgery, oncology, endocrinology, and pathology?
  3. 3.For my surgery, what is your plan for achieving an 'en-bloc' resection, and what is your personal rate of achieving R0 (clear) margins?
  4. 4.Do you have specialized anesthesia and intensive care teams experienced in managing the blood pressure spikes associated with adrenal surgery?
  5. 5.Can your center help arrange external pathology review, genetic counseling, or referral for therapies like PRRT if they are not available on-site?
  6. 6.Which expert adrenal pathologist will be reviewing my slides to confirm my Weiss score and Ki-67 index?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

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This page is for educational purposes about choosing an adrenal cancer care team and preparing for a consultation; it does not constitute medical advice. Your clinicians can advise which specialists, records, and tests are appropriate for you.

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