Together we are part of the solution.
Dr. Armando Sardi, President and Co-Founder
OUR MISSION
Is to advocate for cancer patients by making connections, providing education, and guiding patient navigation to improve the quality and length of their life; with a focus on breast, cervical, and abdominal cancers.
OUR PROGRAMS
In North America and South America continue to significantly increase patients’ chances of long-term survival and potential cure.
The Abdominal Cancers Alliance (the Alliance), a patient-led organization, is a central education and information hub providing resources and accurate, updated information to patients and families about abdominal cancers and CRS/HIPEC treatment options (Cytoreductive Surgery /Hyperthermic (or Heated) Intraperitoneal Chemotherapy).
The Abdominal Cancers Alliance assists patients in getting the proper information regarding their cancer treatment in a timely manner and connects them with organizations, other patients, and the medical community, to provide resources in all phases of the patient journey from diagnosis to treatment and survivorship.
Join our Patient and Caregiver Network
Wherever you may be located, fill out our interest form to:
-
stay up to date with all of our resource launches,
-
get connected with events at our developing hubs,
-
and join our patient network!
ā
Our patient and caregiver network works to connect patients and caregivers to others who have gone through similar experiences based on cancer or treatment type or live in the same area based on preferences collected in the interest form.
PFCCAP’s inception program focuses on mitigating the obstacles women face in their breast and cervical cancer journeys by bridging the gap in cancer screening and treatment in Cali, Colombia.
ā
PFCCAP works alongside our sister organization, Fundación Colombiana Para La Prevención y Tratamiento del Cáncer (FCPTC), in Cali, Colombia in the year-round programming highlighted below.
On-the-ground work is led by FCPTC Executive Director, Andrés Pérez, and Patient Navigation Coordinator, Patricia Córdoba.
Left to right: FCPTC Executive Director: Andrés Pérez, PFCCAP Program Director: Tyler Horton, FCPTC Patient Navigation Coordinator: Patricia Córdoba
OUR VISION
A world where lives are saved because all people
have access to the resources needed
for the prevention, early diagnosis, and proper treatment of cancer.
OUR MISSION
To advocate for cancer patients by making connections, providing education, and guiding patient navigation to improve the quality and length of their life; with a focus on breast, cervical, and abdominal cancers.
Our Team
Dedication. Passion. Expertise.
SMALL TITLE
I'm a paragraph. Click here to add your own text and edit me. It's easy. I'm a paragraph. Click here to add your own text and edit me. It's easy. I'm a paragraph. Click here to add your own text and edit me. It's easy.
DO YOU HAV QUESTIONS? LET US HELP YOU >>
THE ORGANIZATIONS
Diagnosis and Prognosis
Although the recommended treatment for all advanced appendix cancers is CRS/HIPEC, prognosis and outcomes are highly dependent on the pathologic subtype. Therefore, accurately diagnosing these tumors is especially important for treatment and surveillance decisions. This can be challenging as the subtypes exist on a spectrum, researchers are still trying to elucidate the best classification system/nomenclature, and many pathologists are unfamiliar with this rare disease. Do not be surprised if your CRS/HIPEC surgeon requests that your pathology slides be reviewed for additional opinions.
Carcinoid/Neuroendocrine
Appendix carcinoid or neuroendocrine tumors (NETs) are commonly found towards the tip of the appendix and are usually detected in the early stages, without extensive abdominal disease. Although less likely than with other intestinal neuroendocrine tumors, appendix carcinoid tumors can secrete serotonin and other substances that cause carcinoid syndrome, characterized by diarrhea, flushing, and cardiac issues.[14] In the early stage, an extended appendectomy or right hemicolectomy may be all that is required. The extent of primary tumor resection and prognosis depends on the size of the tumor. Early-stage carcinoid tumors have an excellent prognosis, with survival of greater than 30 years. In the rare event that they have spread beyond the appendix to the peritoneal cavity (
DPAM/LGMCP
The most common histopathologic subtype is low-grade mucinous carcinoma peritonei (LGMCP), which may also be referred to as DPAM or LAMN. This is a non-invasive subtype that is characterized by large mucin pools and few bland cancerous cells. It originates in a low or high-grade appendiceal mucinous neoplasm (LAMN/HAMN) and progresses to LGMCP/DPAM once it has spread beyond the appendix into the abdominal cavity.[3] It rarely spreads outside of the abdomen or to lymph nodes and is not known to respond to systemic chemotherapy.[16] It is the subtype associated with the longest survival, with median overall survival >15 years after complete CRS/HIPEC. The 10-year overall survival ranges from 75-82%.[8, 17] Although less common than in other subtypes, recurrence can also occur in up to 30% of patients and median progression-free survival is 7-10 years after complete CRS/HIPEC.[18] Emerging evidence demonstrates that the number of cells present in the mucin is directly correlated to recurrence and overall survival, with acellular mucin associated with the best outcomes.[19, 20] Without complete CRS/HIPEC, survival shortens to less than 5 years. Because these tumors illicit a large immune response, some oral chemotherapy agents with an anti-inflammatory component, such as capecitabine (Xeloda), may be offered in unresectable cases.[21]
PMCA/HGMCP
High-grade mucinous carcinoma peritonei (HGMCP), also referred to as PMCA, is an invasive mucinous adenocarcinoma. Outcomes vary based on tumor grade (well, moderately, or poorly differentiated) and the presence of lymph node involvement. Well-differentiated tumors with negative lymph nodes tend to have longer survival outcomes.[3] However, complete CRS with HIPEC is the best treatment for all HGMCP, with median overall survival ranging from 8-10 years.[8, 9, 17] Recurrence is more likely, occurring in up to 45% of patients around 4-5 years after CRS/HIPEC.[17, 18] Without complete CRS/HIPEC, survival shortens to approximately 2-3 years. Systemic chemotherapy with colon-type regimens (FOLFOX, FOLFIRI) may be recommended for patients with unresectable disease or as “preventative” treatment (adjuvant therapy) after complete CRS/HIPEC in patients who are at high risk for recurrence (i.e. positive lymph nodes or poorly differentiated).[11, 22]
PMCA-S/HGMCP-S
Signet ring cell carcinoma or PMCA-S is a type of high-grade mucinous carcinoma peritonei that is highly invasive and aggressive. Signet ring describes the shape of the cancer cells within the mucin, which are characterized by the nucleus pushed to the edge forming a ring and creating a higher propensity for lymph node and distant (extra-abdominal) metastases.[3] The prognosis largely depends on the amount of tumor and the extent of the disease. Patients with lower tumor burden (lower PCI) and no extra-abdominal or lymph node metastases tend to have better survival outcomes. Some centers employ a “PCI cutoff” for signet ring cell tumors and will not perform CRS/HIPEC on patients above that cutoff point. However, some studies have shown that long-term survival can be achieved with CRS/HIPEC, even in patients with a lot of disease (high PCI), if all the visible tumors can be removed. After complete CRS/HIPEC, median overall survival is approximately 3 years, which improves to around 6 years in lymph node-negative patients.[17, 23, 24] Even after complete CRS/HIPEC, recurrence can occur in up to 65% of patients, with a median progression-free survival of approximately 2 years. Most patients with signet ring cells will be recommended to undergo systemic chemotherapy, before and/or after CRS/HIPEC.[18]
PMCA-G/HGMCP-G
Goblet cell carcinomas or PMCA-G is one of the rarest types of high-grade mucinous carcinoma peritonei that can often be mixed with signet ring and neuroendocrine features. Because of its mixed histology and low incidence, it is commonly misdiagnosed as a less aggressive neuroendocrine/carcinoid tumor.[25] However, it behaves more like a carcinoma and survival depends on the stage of disease at diagnosis and the presence of signet ring cells.[26] Once this cancer has spread beyond the appendix, the role of CRS/HIPEC is controversial. However, no other available treatment options can provide the same chance of long-term survival. Some single-center studies have reported a median overall survival of over 4 years, which includes some long-term survivors beyond 5 years, and a median progression-free survival of around 2 years.[18, 27]
Patient Stories
-
Include patient highlights from talent show with appendix cancer??
-
Jason Hecht (Link to Patient Stories https://mdmercy.com/centers-of-excellence/cancer/treatments-we-offer/surgical-oncology/patient-stories/jason)
-
Stephanie Brennan (pdf article)
Treatment
Surgery:
Almost all appendix cancers will be treated with surgery. The surgery's extent depends on the disease's size, grade, extension, and location. If a tumor is low-grade and confined to the appendix, a simple appendectomy may be the only treatment you need. If involving the cecum, an extended cecectomy will be needed to have clear margins. If the tumor is high-grade but has not perforated the appendix wall, a right hemicolectomy will be needed to make sure that the lymph nodes are not involved and, if so, to make sure that all tumors are completely removed.[6] A right hemicolectomy removes a portion of the colon around the appendix and some nearby blood vessels and lymph nodes. If the tumor has perforated the appendix and spread throughout the abdominal cavity, then a more extensive cytoreductive surgery in which all visible disease and involved structures are removed will be performed.[7] Longer survival is associated with less amount of disease remaining after surgery.[8, 9] It is important to have a surgeon who is experienced with appendix cancers perform your surgery.
Chemotherapy:
In some cases, appendix cancer can be treated with systemic chemotherapy. If there is very extensive disease, preoperative chemotherapy may be recommended to make it more amenable to surgical resection.[7, 10] Depending on surgical results and tumor type, postoperative chemotherapy may be recommended. The most common agents/regimens are those used to treat colon cancer, such as FOLFOX, FOLFIRI, with or without Avastin. Sometimes, XELODA may be used as maintenance therapy.[11, 12]
However, it is important to note that the role of systemic chemotherapy in these tumors is poorly defined and the benefit is not well established. There are no randomized clinical trials studying the effectiveness of systemic chemotherapy in appendix cancer. Data and recommendations are extrapolated from colon cancer studies, even though there is evidence that these tumors are molecularly and behaviorally distinct.[13] An experienced medical oncologist should review your specific case for chemotherapy recommendations.
CRS/HIPEC:
Recent studies have shown a significant increase in survival with the use of extensive cytoreduction (CRS) combined with intraoperative heated intraperitoneal chemotherapy (HIPEC).[7, 8] In fact, CRS/HIPEC is now considered the standard of care treatment for all subtypes of advanced appendix cancers.
In this procedure, a complete cytoreduction is performed, which is the surgical removal of all visible disease. Surgical resections may include parts of an organ or the entire organ and may include: the spleen, gallbladder, liver, peritoneum (lining of the abdominal cavity), uterus, fallopian tubes/ovaries, and bowel. This is followed by heated chemotherapy that is circulated directly into the abdominal cavity to kill any remaining microscopic cancer cells. CRS/HIPEC is the recommended treatment when the appendix has ruptured and there is evidence of disease in the abdominal cavity (peritoneal spread). Patients who undergo complete CRS, with no residual disease (CC-0/1{link to term in Glossary), immediately followed by HIPEC have the best chance at long-term survival.[8, 9]
-
What are the common symptoms of abdominal cancers?Symptoms vary depending on the specific cancer but can include abdominal pain or discomfort, unexplained weight loss, loss of appetite, nausea or vomiting, changes in bowel habits and blood in stool, and swelling or a mass in the abdomen.
-
What treatment options are best for my diagnosis of an abdominal cancer?Treatment options will vary based on numerous factors of a patientās diagnosis, such as the cancerās aggression, whether it has spread, and characteristics of the patient. Most cancers of the abdomen are highly treatable when caught early, and treatment will usually include some combination of chemotherapy and surgery. Depending on the diagnosis, a physician may also recommend radiation therapy, immunotherapy, and clinical trials. Read more about your treatment options based on your diagnosis.
-
What can I do to make sure that my health insurance covers as much of my care as possible?Navigating health insurance can always be a challenge, and doing so when facing cancer treatment is no exception. Proactivity and advocacy are key to making sure that you are well-informed about what your insurance provider will cover and ensuring that you are aware of the process necessary for the insurance company to approve the cost of your care. First, thoroughly review your insurance policy. It is crucial to understand what treatments and services are covered, from surgeries and chemotherapy to specialized procedures like Cytoreductive Surgery and HIPEC. Being aware of the specifics, such as whether your plan covers experimental treatments or clinical trials, will help you anticipate what to expect as you move forward. Before beginning any treatment, it is wise to seek pre-authorization from your insurance provider. Many insurers require this step, especially for high-cost treatments, and getting approval upfront can prevent unexpected expenses later. Working with an insurance advocate, often available through your treatment center, can also be helpful. These advocates can help you navigate the complexities of your coverage, assist in understanding your benefits, and support you in appealing any denied claims. Choosing in-network providers is another critical aspect. Treatment from in-network doctors, hospitals, and labs is typically covered more extensively, reducing your out-of-pocket costs. After receiving care, request an itemized bill and review it carefully for errors that could lead to higher expenses. If your insurance doesnāt cover a significant portion of the treatment, don't hesitate to negotiate with your healthcare providers for a lower rate or to set up a payment plan. As you manage your care, keep track of your out-of-pocket spending. Once you reach your planās out-of-pocket maximum, your insurance should cover 100% of covered services for the rest of the year, which can provide substantial financial relief. If a claim is denied, remember that you have the right to appeal. With the support of your healthcare team, gather all necessary documentation to make a strong case. And keep documentation throughout the entire process, from the first exam, through treatment, to the last follow-up appointment. This may include documentation provided from your care team, bills, payment receipts, authorizations or claims documentation, and explanation of benefits (EOBs) from your insurance provider.
-
How will my doctor diagnose what I have?Diagnosis typically involves a combination of medical history evaluation, physical examination, imaging tests (like CT scans, MRIs, or ultrasounds), blood tests, and sometimes biopsy. Your surgical oncologist may also recommend an exploratory laparoscopy to get a closer look inside the abdomen. Common imaging tests include: CT Scan: Provides detailed cross-sectional images of the abdomen. MRI: Offers high-resolution images and is useful for soft tissue evaluation. Ultrasound: Uses sound waves to create images, often used for initial evaluation. PET Scan: Detects cancerous cells based on their glucose metabolism. Blood tests can help identify tumor markers, assess liver function, and detect anemia or other abnormalities that might suggest cancer. Specific markers like CA 19-9 or AFP can be elevated in certain types of abdominal cancers. A biopsy involves taking a small sample of tissue from the suspected area to examine it under a microscope. Itās necessary to confirm the presence of cancer cells and determine the type and grade of the cancer. Doctors determine a cancerās stage through a combination of imaging tests, biopsies, and sometimes surgical exploration to assess the size of the tumor, involvement of nearby lymph nodes, and spread to other parts of the body.
-
How will my doctor diagnose what I have?Diagnosis typically involves a combination of medical history evaluation, physical examination, imaging tests (like CT scans, MRIs, or ultrasounds), blood tests, and sometimes biopsy. Your surgical oncologist may also recommend an exploratory laparoscopy to get a closer look inside the abdomen. Common imaging tests include: CT Scan: Provides detailed cross-sectional images of the abdomen. MRI: Offers high-resolution images and is useful for soft tissue evaluation. Ultrasound: Uses sound waves to create images, often used for initial evaluation. PET Scan: Detects cancerous cells based on their glucose metabolism. Blood tests can help identify tumor markers, assess liver function, and detect anemia or other abnormalities that might suggest cancer. Specific markers like CA 19-9 or AFP can be elevated in certain types of abdominal cancers. A biopsy involves taking a small sample of tissue from the suspected area to examine it under a microscope. Itās necessary to confirm the presence of cancer cells and determine the type and grade of the cancer. Doctors determine a cancerās stage through a combination of imaging tests, biopsies, and sometimes surgical exploration to assess the size of the tumor, involvement of nearby lymph nodes, and spread to other parts of the body.
-
What are the benefits of HIPEC compared to traditional chemotherapy?HIPEC allows for a higher concentration of chemotherapy to be delivered directly to the tumor site inside the body, which can be more effective and have fewer systemic side effects compared to traditional intravenous chemotherapy.
-
What is the CRS/HIPEC procedure, and is it really right for me?Cytoreductive surgery (CRS) is the aggressive surgical removal or destruction of cancer. It is performed through an incision down the midline of the abdomen and may include removal of parts of or the entirety of organs including: the spleen, gallbladder, liver, peritoneum (lining of the abdominal cavity), uterus, fallopian tubes/ovaries, and bowel. Following CRS, heated chemotherapy is circulated directly into the abdominal cavity to kill any remaining microscopic cancer cells - this is referred to as HIPEC. CRS/HIPEC is an aggressive treatment for cancers that have spread around the abdominal cavity, but it is considered the standard of care treatment for many advanced abdominal cancers. Whether a patient is a candidate for CRS/HIPEC will depend on numerous factors - including the cancerās aggression, where it has spread, whether tumors can be surgically removed or not, as well as any comorbidities of the patient - so consult a physician with expertise in the procedure.
-
How do I know if I am receiving the right care and if I am seeing a physician who is an expert with the HIPEC procedure?Surgical oncologists who specialize in peritoneal surface malignancies perform CRS/HIPEC. The complexity of the procedure requires an experienced surgeon to increase the likelihood of achieving a complete cytoreduction (removal of all visible tumor) and decreasing the chances for complications. One multi-center study concluded that CRS/HIPEC requires a steep curve of 140 procedures performed, which is significantly higher than more common surgical procedures to be considered an expert. In addition, The Chicago Consensus Guidelines require a minimum of 12 CRS/HIPEC procedures performed per year per surgeon to be considered a CRS/HIPEC center of excellence. It is important to remember that CRS/HIPEC is an extensive surgery that requires not only an experienced surgeon, but also the combined expertise and knowledge of a multidisciplinary team, including physician assistants, skilled / critical care nursing, nurse navigators, physical therapists, dietitians, radiologists, pathologists, geneticists, and other cancer specialists to achieve the best outcomes. Refer to our list of questions to ask a surgeon (links to Questions for HIPEC surgeon page) so that you can vet your care team with confidence.