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FLORENCE, Italy — Cross-border tumor boards of European experts have been meeting virtually to discuss the treatment of patients with rare and complex gynecological cancers. The effort has resulted in new treatment recommendations and improved access to clinical trials, according to a 6-year study that was presented here at the ESMO Gynaecological Cancers Congress 2024.

More than half of gynecological cancers and gestational trophoblastic tumors are considered rare because they are diagnosed in fewer than six out of every 100,000 people annually. Due to the limited number of cases, many cancer centers have little experience diagnosing and treating these patients and lack access to clinical trials. This can cause delays in diagnosis and limit treatment options, leading to lower 5-year survival rates for patients with rare cancers (47%) than for those with common cancers (67%).

Eva-Maria Strömsholm, an oncology nurse at Central Ostrobothnia Hospital in Kokkola, Finland, and a patient advocate, told Medscape Medical News that patients with rare gynecological cancers often face late diagnosis and suboptimal care because doctors may not recognize symptoms of rare cancers or may be unsure of the best treatment options.

"Rare tumors present several challenges in terms of timely diagnosis and management due to the lack of evidence and the difficulty in establishing clinical trials," explained Alice Bergamini, MD, from the Gynecology and Obstetrics Unit at San Raffaele Hospital in Milan, Italy, presenting at the ESMO Gynaecological Cancers Congress 2024 held last week in Florence, Italy.

She also told Medscape Medical News that there is a strong need to create standardized treatment approaches for rare gynecological cancers.

Receipt for Success

EURACAN, the European Reference Network for Rare Adult Cancers, has established a virtual network to connect adult patients with rare cancers to expert healthcare centers across the continent. Its 'G2 domain' focuses on rare gynecological cancers.

According to Jubilee Brown, MD, director of gynecologic oncology at the Atrium Health Levine Cancer Institute in Charlotte, North Carolina, multidisciplinary tumor boards are not new, but what makes EURACAN unique is its focus on rare tumors.

EURACAN G2 virtual cross-border multidisciplinary tumor boards are held monthly and coordinated on rotation by the Karolinska University Hospital in Stockholm, Sweden, the San Raffaele Hospital in Milan, and the Hospital Clínico San Carlos in Madrid, Spain. Before each meeting, patient case studies are collected using standardized intake forms. Following the meetings, the board returns a recommendation protocol to the clinicians responsible for each case study. "This was a receipt for success," said Brown.

Impact of Multidisciplinary Boards on Patient Outcomes

A study examined the impact of EURACAN G2 tumor boards on patient care over 6 years, from November 2017 to October 2023. During this period, 67 multidisciplinary tumor boards with participants from 18 European countries reviewed 260 patients with complex gynecological cancers. Follow-up data were collected from 155 patients.

Most patients presented with rare epithelial ovarian tumors (29%), malignant ovarian germ cell tumors (20%), and gestational trophoblastic tumors (20%). Other cancers discussed included rare uterine, rare cervical, and sex cord-stromal cancers. Half the cases involved relapse and disease progression discussions, while 40% involved primary treatment discussions.

In more than one third of the cases, further diagnostic testing was recommended, and new treatment opportunities were suggested for more than half of the women. Surveillance was recommended instead of adjuvant chemotherapy in 17% of the patients, sparing these women the potential side effects of chemotherapy.

As a result of recommendations from the virtual tumor boards, one in four patients gained access to off-label therapies or were enrolled in clinical trials abroad.

At 1-year follow-up, 46% of patients were alive and without disease, 34% still had the disease, and 12% had died, while follow-up data were missing for the remaining 8% of patients.

The results also showed that the number of patients reviewed nearly doubled over the 6 years, and adherence to treatment recommendations was high (94%).

Bergamini emphasized the need to keep monitoring the survival rates and outcomes of recommendations from pathologic reviews.

She added that EURACAN G2 is working to reduce disparities in rare cancer care across Europe. This is particularly important because some countries have more resources than others. For example, France has a very structured network dedicated to rare tumors, while other countries might be less resourceful.

"Rare cancer patients are feeling alone," said Strömsholm, who is EURACAN G2's patient representative. "EURACAN is doing a great job highlighting that rare cancer patients are not so rare, and they have different needs than [more common] cancer patients."

Bergamini serves in an advisory role at MSD/AstraZeneca and GSK.

Brown serves on advisory boards at Verastem Oncology, Genentech/Roche, GSK, AstraZeneca, Caris Life Sciences, and Eisai. She is also a PI/advisory board of research at GSK and Genentech/Roche.

Strömsholm is cofounder and vice chair at Gynecological Cancerpatients in Finland and also chair of the Nordic Gynecologic Patient Organizations Network. She is also a patient advocate in the International Gynecologic Cancer Society patient advocate network and ESMO patient advocate working group. She serves as a patient advocate in the EURACAN rare gynecological cancer domain.

Manuela Callari is a freelance science journalist specializing in health and medicine.