Find a Specialist
Although not all Appendix Cancer and PMP patients will require CRS/HIPEC, it is still recommended that all Appendix Cancer and PMP patients consult with a specialist before undergoing treatment. They are the most familiar with the disease and are the only physicians who treat it on a regular basis.
Currently, no objective criteria exist to determine what constitutes a “specialist” in the treatment of appendix cancer, pseudomyxoma peritonei, and other peritoneal surface malignancies. Therefore, the ACPMP Research Foundation does not recommend any particular specialists. However, we have provided some suggestions and resources below to assist you in your search.
The ACPMP Find a Specialist tool includes physicians in the United States with experience in treating appendix cancer and pseudomyxoma peritonei. For specialist recommendations outside the United States, please contact us.
This is not intended to be, nor is it, an exhaustive list of physicians who treat appendix cancer and pseudomyxoma peritonei (AC/PMP). However, it includes physicians that meet one or more of the following criteria:
- are affiliated with a high-volume center performing CRS/HIPEC procedures on a regular basis;
- have treated numerous patients with AC/PMP;
- engage in research on AC/PMP in addition to clinical practice and/or practice at medical institutions that do so;
- have attended medical conferences focused on AC/PMP; and/or
- have received positive feedback from the AC/PMP patient community.
This resource is provided for informational purposes only. Inclusion of a physician does not constitute an endorsement or recommendation by the ACPMP Research Foundation.
While we have endeavored to include physicians that meet the above criteria, we strongly encourage patients to (1) use our Questions for Specialists guide when interviewing physicians, (2) solicit multiple physician opinions if possible and also feedback from other AC/PMP patients, and (3) choose the physician that the patient, in the exercise of his or her sole discretion, ultimately determines to be the best fit for them.
Ultimately, the selection of a medical provider is a decision that involves many factors, the weighing of which is personal. We encourage patients to join an online support group where they can solicit feedback on specific specialists from other AC/PMP patients.
- District of Columbia
- New Jersey
- New York
- North Carolina
- North Dakota
- South Carolina
- West Virginia
When searching for a specialist to treat AC/PMP, patients should be aware that research studies have concluded that the learning curve for the CRS/HIPEC procedure—the “standard of care” for AC/PMP—reaches its peak only after the completion of 130, 140, 180, or perhaps even over 200 of these procedures. Some specialists have performed 1,000 or more of these procedures over the years. A patient searching for a specialist to treat AC/PMP or a related disease may want to ask how many CRS/HIPEC procedures a surgeon under consideration has performed, over what period of time, as well as the number of CRS/HIPEC procedures or other complex surgical procedures that the surgeon’s institution has performed and what percentage of these procedures were for AC/PMP patients.
A patient may also want to consider the following additional questions:
Their Surgical Expertise
- Read his/her professional biography and whatever other information is available about his or her professional experience. Does he/she have relevant specialized training, residency, and fellowship experience? What are his/her research interests? Does his/her training, areas of interest and experience align with what you seek?
- Is his/her affiliated institution highly respected for the treatment of rare cancers and/or for treatment of specialty abdominal cancers?
- How many cytoreductive surgeries have you performed? Approximately what percentage of those are as the primary attending physician? (Remember that studies have shown that the peak of the learning curve for CRS/HIPEC is 130, 140, 180, or over 200 procedures)
- Has the institution under consideration performed at least the generally recommended minimum number of cytoreductive surgeries (at least 130+) related to the treatment of AC/PMP or other peritoneal surface malignancies? Does this number include most of the current clinical staff and operating room supporting staff?
- What percentage of the surgeon’s and the institution’s CRS surgeries were done specifically to treat appendix cancer/PMP?
- How many years of experience do you have in performing these surgeries in total, and as the primary attending?
Their Approach to HIPEC
- In approximately what percentage of your CRS surgeries is HIPEC (hyperthermic intraperitoneal chemotherapy) used?
- What HIPEC agents are used HIPEC, and why?
- Do you perform HIPEC using the open or closed technique and why? Have you ever used the other technique to perform CRS/HIPEC, whether at your current institution or any prior institution?
- Do you perform intraperitoneal chemotherapy only as part of the CRS/HIPEC procedure itself, or do you continue early post-operative intraperitoneal chemotherapy (EPIC) for some days after surgery? What is the basis for that course of treatment?
Their Approach to Operating
- What is your average (or typical) patient age, gender, and general fitness status? How might such factors affect my surgical outcomes and overall prognosis?
- What is the current waiting time for a patient to be scheduled for surgery?
- Please describe your selection criteria for surgical patients with my type of tumor/disease e.g, LAMN (DPAM), HAMN (PMCA), PMCA-I (intermediate), appendiceal adenocarcinoma [with and without signet ring cells], and goblet cell carcinoid tumors.
- How many days do you estimate for a post-surgical hospital stay? Do you have a set timeframe, or is it based solely on post-op milestones? What are those milestones? What are the complications that you typically see that result in a longer post-op stay?
- What is a typical operating time for cytoreductive surgery with HIPEC? Do you estimate that my surgery would take that amount of time (or more/less)? Could you explain for me why this would be?
- Approximately what percentage of cases have you had where you go into the operating room planning to perform CRS/HIPEC, but then have to abort? What is the most common specific reason to abort? For what reason would you not have had sufficient information in advance to avoid that change in plan?
- Based on what you see in my case, how likely am I to have a complete surgery and get HIPEC—and what are the factors in my case that might cause a change of plan in the operating room?
Their Outcomes with Patients
- What, if any, de-identified data or statistics do you/your institution make available to prospective patients so that we can get a snapshot indicating how well your prior patients have fared, both in terms of post-operative complications and disease-free or long-term survival?
- What are your current outcome statistics for disease-free survival for patients with my type of disease or similar grade/type (g., low-grade appendiceal neoplasm, known as LAMN or DPAM); high-grade appendiceal neoplasm, known as HAMN or PMCA; PMCA-I (intermediate); appendiceal adenocarcinoma [with and without signet ring cells]; and goblet cell carcinoid tumors)?
- How does your treatment recommendation compare with that of other specialists? If your approach would differ, why? (NOTE: A patient may want to consider consultations with at least 2 or 3 recognized specialists in the field before selecting a physician for treatment. This question presumes a desire to ask the specialist about other medical opinions received or can simply inquire whether this specialist does something in a different fashion.)
Their Approach to Chemotherapy
- What is your philosophy about using systemic chemo before and/or after CRS with and without HIPEC? In approximately what percentage of your patients have you recommended this course of treatment before and/or after surgery? What was the rationale for using or not using systemic chemo in those cases?
- Of patients receiving systemic chemo: What percentage of patients that were not eligible for CRS or CRS/HIPEC was ultimately deemed eligible after the chemotherapy?
- What systemic chemotherapy drugs (including systemic “cocktails”) do you use/recommend for people with my disease type? Could you describe for me some of the different chemo approaches you have taken and why?
- Are there any other drugs, treatments, or therapies you have prescribed or recommended (e.g., immunotherapies) to people with my disease type? ? If any, can you provide research on which they are based? Are you pursuing this therapy in a research context?
Their Recommendations for Additional Types of Testing
- Do you recommend chemo sensitivity assays? Why or why not? If yes, what tests and testing laboratories do you use?
- Do you recommend molecular assays of tumor samples? Why or why not? If yes, which laboratories or tests do you use?
- Do you order or at least recommend molecular and genetic testing of tumor tissue and/or circulating tumor DNA testing to identify targetable mutations for immunotherapy or other precision medicine therapies? What considerations do you use in determining whether to recommend that to a patient?
Many resources exist to assist patients in finding a physician with experience in treating AC/PMP and peritoneal surface malignancies.
- ACPMP has created a find a specialist tool (above) includes physicians in the United States with experience in treating appendix cancer and pseudomyxoma peritonei. This list is updated on a regular basis.
- Several of the recognized leaders in the field present at and attend the biannual International Congress on Peritoneal Surface Malignancies established by Dr. Paul Sugarbaker. The 12th International Congress on Peritoneal Surface Malignancies is anticipated to take place in Beijing, China on September 18 – 20, 2020. Many experts also attended the 10th International Congress on Peritoneal Surface Malignancies in Washington, DC on November 17 – 19, 2016. The conference agendas, which specify presenters, affiliated institutions, and presentation topics are all generally publicly available and can provide useful insight into who is active in the space.
- Many recognized experts in the field also organize, attend and present at the annual Advanced Cancer Therapies, presented by the Society of Surgical Oncology, formerly organized by the Koch Center at the University of Pittsburgh Medical Center. Similar to the Congress noted above, the conference agenda is also generally available and similarly can provide a patient with useful insight into who is active in the space.
- The ACPMP Research Foundation Medical Advisory Board (“MAB”) consists of recognized experts in the treatment of AC/PMP and peritoneal surface malignancies as determined by a review of each MAB member’s membership application and curriculum vitae by the ACPMP Research Foundation Board of Directors.
- Nearly all of the ACPMP Research Foundation grant recipients have established clinical programs at their respective institutions with extensive experience treating PMP and Appendix Cancer.
- All of the institutions hosting past or future ACPMP Regional Patient-Practitioner Symposiums have experience in treating these diseases.
- Several websites listed on our Helpful Links page contain their own specialist lists. When reviewing these lists please keep in mind that there are no uniform criteria used to determine what constitutes a “specialist,” and many of these lists are not updated on a regular basis. Our Questions & Considerations when Selecting a Specialist section (above) provides some suggestions in conducting your search.