Beyond the Operating Room: Why Peritoneal Cancer Surgeons Should Partner With Patient Advocacy Organizations
- 2 days ago
- 7 min read
By Vadim Gushchin, MD
Director, HIPEC Program at Mercy Mercy Medical Center
Baltimore, MD
Peritoneal oncology clinicians meet patients and families at one of the most frightening points in their lives. A patient may have just learned that cancer has spread to the lining of the abdomen. A caregiver may be trying to understand unfamiliar terms like peritoneal metastases, cytoreductive surgery, or HIPEC. The clinician may be focused, appropriately, on whether a complex operation can be done safely and effectively. But for the patient and family, the medical plan is only one part of the crisis.
That gap is where patient advocacy organizations are indispensable tools: for both clinicians and patients and caregivers.
For clinicians, especially surgeons, peritoneal cancer patient advocacy may sound like something outside the clinic: policy work, fundraising, awareness campaigns, or public speaking. But at its most practical level, advocacy starts with a simple act: connecting patients and caregivers to trustworthy support when they need it most. That means starting in the clinic. In peritoneal surface malignancies - where care is complex, often concentrated in specialized centers, and emotionally overwhelming - that connection should be considered a standard part of comprehensive care.
The Clinician's Role as Advocate in Peritoneal Cancer
The medical literature supports this broader view of the clinician’s role. The core competency of professionalism increasingly recognizes advocacy as part of medicine, not separate from it. A recent systematic review of advocacy curricula in graduate medical education notes that advocacy is widely regarded as an integral part of physicians’ professional responsibilities, even though training remains inconsistent and difficult to standardize. The American College of Surgeons similarly encourages surgeons to become involved in advocacy on issues important to patients and the profession. Yet the gap between endorsement and action remains large. The literature shows that physicians often support advocacy in principle, while actual participation with patient advocacy organizations remains modest, informal, and under-institutionalized. Common barriers include lack of time, unclear role boundaries, limited incentives, discomfort with public-facing roles, and concerns about politicization or conflicts of interest.
For peritoneal oncology surgeons, there is an additional cultural barrier: surgery itself can create a false sense of completion. Once the operation is done, the disease has been addressed in the way the surgeon is trained to address it. The incision is closed, the operative report is written, the patient is recovering, and the team moves to the next urgent case. But the patient’s experience does not end there - a critical, though less acute, gap in care remains. Recovery, uncertainty, caregiving strain, financial pressure, surveillance anxiety, and the need to make sense of the diagnosis often continue long after discharge.
Studies of patients undergoing CRS/HIPEC (cytoreductive surgery and hyperthermic intraperitoneal chemotherapy), for example, show why this matters. Quality-of-life research has found that CRS/HIPEC can temporarily impair physical well-being, with recovery trajectories extending over months. More recent qualitative work emphasizes that patients face challenges tied not only to advanced disease, but also to the extent of the procedure, long-term complications, information needs, and the limits of standard quality-of-life tools in capturing the full patient experience. Caregivers also carry a substantial burden. In one study of caregivers of patients with appendiceal cancer undergoing CRS/HIPEC, half reported high burden, which was associated with worse quality of life and greater decision regret.
These are not problems that any clinician can solve alone. They are also not reasons for the clinician to disengage. They are reasons to build a bridge.
Advocacy as Navigational Care
Patient advocacy organizations bring something different from what the clinic can provide. They offer lived experience, peer connection, practical education, caregiver support, disease-specific navigation, and a community that can help patients feel less alone. A recent review of patient organizations describes their role in helping health systems understand unmet needs and the effects of disease on quality of life. In oncology, patient navigation has also been shown to help patients and families overcome barriers and improve access to timely, specialized care. Advocacy organizations are not a replacement for medical care, but they can extend the reach of care into the parts of the patient journey that the clinic often cannot cover.
The literature also suggests that clinician involvement can change whether patients find these resources at all. In dermatology, a smartphone-based referral tool improved physician awareness and referrals to patient advocacy organizations and increased patient registrations with those organizations. In inflammatory bowel disease, global survey work has identified communication gaps between patients and physicians and explored the role of resources that improve communication. In pediatric oncology research, partnerships with patient advocacy organizations have helped elevate patient and family voices and were described as critical to study development, survey refinement, and recruitment procedures.
The lesson is straightforward: patients are more likely to benefit from advocacy organizations and the breadth of care-gap-filling services they offer when clinicians make the introduction
early, clearly, and repeatedly.
For peritoneal oncology surgeons, this does not require becoming a full-time advocate. It requires making advocacy visible as part of the care pathway.
A Clinician's Voice Matters
At every meaningful clinical encounter, patients and caregivers should hear about reputable advocacy organizations. That includes the first consultation, preoperative counseling, discharge planning, postoperative visits, surveillance visits, and conversations about recurrence or next steps. The message can be brief:
“You are not expected to navigate this alone. There are patient advocacy organizations that support people with this diagnosis and their caregivers. They can help you understand the journey, connect with others, find practical resources, and, when you are ready, become part of a community working to help future patients get to the right care sooner.”
That statement does four important things:
It normalizes support.
It includes the caregiver.
It frames involvement not as charity, but as a way for patients and families to help the next person.
And, critically, this approach introduces an unobtrusive way for clinicians to broaden and deepen the care and services offered to patients and caregivers through the connection to those organizations. First and foremost, this is about added value in care delivery.
Clinics should make this easy. Every peritoneal oncology program should maintain a vetted list of advocacy organizations relevant to the diseases it treats. That list should be included in printed materials, after-visit summaries, preoperative packets, discharge instructions, clinic websites, and patient portals. EHR templates should include a simple prompt: "Patient/caregiver informed of advocacy and support resources.” And the organizations can - and often are more than willing - to assist with providing the necessary collateral.
The connection should not be passive - a brochure is useful, but a recommendation from a trusted clinician carries real weight. Surgeons, advanced practice providers, nurses, and navigators should all be prepared to say why the organization matters: emotional support, caregiver education, practical advice, peer connection, research opportunities, awareness-building, and help understanding where specialized care exists.
Advocacy as Amplification
Clinicians should also explain why patients and caregivers may want to get involved, not only receive support. Many patients and caregivers want their experience - their pain, their tribulations - to mean something. Advocacy organizations give them a way to channel that. Such as by sharing their story, mentoring newly diagnosed patients, participating in awareness campaigns, supporting research priorities, educating the public, and helping others reach knowledgeable care teams earlier. In rare and complex cancers, awareness is not abstract. It can affect whether a patient recognizes symptoms, receives an accurate diagnosis, asks for referral, finds a specialist, or understands that treatment options may exist.
This is especially important in peritoneal oncology, where patients often arrive after long diagnostic journeys. A movement of informed patients, caregivers, clinicians, and advocates can help more people get to appropriate care at the right time. Surgeons bring clinical credibility to that movement. Patients and caregivers bring humanity, urgency, lived experience, and moral authority. Advocacy organizations create the structure that allows those forces to work together.
Importantly, this groundswell of mobilization means more patients reaching specialized clinical care.
The Environment Around Us
But clinicians will not change their habits simply because the idea is good. The community around them has to make advocacy feel legitimate, bounded, and practical.
Patient advocacy organizations can help. Not every surgeon can serve on a board or lead a campaign. But every surgeon can refer and promote trusted organization partners. Some can review patient education materials. Some can speak at a webinar once a year. Some can
advise on clinical accuracy. Some can help design research questions. Some can connect fellows or residents to advocacy experiences. Creating graduated roles lowers the psychological barrier to participation.
Patients and caregivers can help change attitudes, too. They can ask clinicians, “Are there patient organizations you recommend?” They can tell care teams when a support group, resource guide, or peer connection made a difference. They can share stories back with the clinic so clinicians see that the referral mattered. Surgeons are trained to value outcomes. When they see that advocacy improves understanding, reduces isolation, supports caregivers, or helps another patient find care sooner, advocacy becomes less abstract.
Health systems and professional societies also have a role. They can invite patient advocacy organizations to grand rounds, survivorship programs, tumor boards, and educational conferences. They can recognize advocacy as community service, quality improvement, education, or leadership. They can create protected pathways for ethical collaboration, including transparency around funding, conflicts of interest, sponsorship, and decision-making. These safeguards matter because trust is central to effective physician–advocacy partnerships.
The cultural shift begins with a reframing: advocacy is not asking clinicians to abandon the clinic or the operating room. It is asking them to recognize that the operation is only one part of the patient’s journey.
The Narrative of Peritoneal Cancer Patient Advocacy Must Change
For peritoneal oncology clinicians, the case for collaboration is particularly strong. These diseases are complex. The treatments are demanding. The recovery is long. The caregiver burden is real. The need for accurate information is urgent. And the path to specialized care is not always obvious.
Critically, this approach introduces an unobtrusive way for clinicians to broaden and deepen the care and services offered to patients and caregivers through the connection to those organizations.
A clinician may not have time to provide every form of support a patient needs. But the clinician can open the door: That door may lead to a caregiver who finally feels seen. A patient who meets someone who has survived the same operation. A family that understands what questions to ask. A newly diagnosed person who finds the right specialist sooner. A research project shaped by lived experience. A public awareness campaign that reaches someone still searching for answers.
The goal is not to turn every clinician into an activist. The goal is to make connection to advocacy a routine part of excellent care. In peritoneal oncology, helping patients and caregivers find support, community, and a voice is not extra. It is part of helping them live through the disease, the treatment, and what comes after.
