Endometrial cancer is being diagnosed with increasing frequency. Patients are not always informed of all available treatments

FIGHT FOR DIAGNOSIS

- Mom was 56 years old. She took great care of her health and examined herself regularly. At some point, her abdomen started to hurt, so her natural reflex was that she went to get checked. A vaginal ultrasound revealed that her ovaries, especially one of them, were enlarged. Suspicious lesions were also visible on them. An abdominal ultrasound brought the same findings. A CT scan of the abdomen of the small pelvis visualized distant metastases, including those to the liver," Magdalena Mówinska recalls.

Doctors who diagnosed the woman suspected malignant cancer of the ovaries. Based on the imaging results obtained, they qualified her for surgery to remove the reproductive organs. As Magdalena Mówinska emphasizes, no tests for microsatellite instability, MMR or ProMisE were performed before the operation. Nor were MRI or PET scans ordered.

- When I read the description of the histopathological examination carefully after some time, it turned out that everything pointed to clear cell carcinoma of the endometrium with metastasis to the ovaries. At the end of the description there was also a statement that the exit of this cancer could not be clearly determined," says the patient's daughter.

FIGHT FOR TREATMENT

However, the doctors, when talking to the patient's relatives, continued to talk only about ovarian cancer. There was also a lack of information about all, reimbursed and non-reimbursed treatment options.

- The only treatment option offered was chemotherapy, given in six cycles. Because of the fact that I didn't know that everything pointed to endometrial cancer, however, I searched for information about treatment for ovarian cancer. The data I found showed that indeed a lot of people respond to treatment with carboplatin and paclitaxel," the woman recalls.

After four cycles of chemotherapy, a CT scan was performed, which showed progression of the disease. Magdalena Mówinska then carefully analyzed the descriptions of the tests performed so far. After reading in the aforementioned histopathological description about clear cell endometrial cancer, she began to look on foreign forums for information about the treatment of this disease. It turned out that the standard treatment there starts with chemotherapy, but if it turns out that the disease is spread, patients are put on immunotherapy with pembrolizumab and lenvatinib. Such therapy has produced spectacular results in many patients describing their experience.

Ms. Magdalena's mother, meanwhile, was offered so-called "red chemotherapy" after the failure of the first line of treatment. Since clear cell endometrial cancer is 90% unresponsive to chemotherapy treatment, the patient's family decided to consult another doctor about her case.

- He said that my mother was long overdue for immunotherapy. On the other hand, doctors should be guided to the diagnosis of endometrial cancer by at least liver metastases, which are rare in ovarian cancer. He also suggested contacting a specialist in Warsaw, where we live, so that contact with the doctor would be easier for us," the patient's daughter recalled.

The doctor to whom the patient was referred was ready to apply for funding to administer the drug under emergency access to drug technology. Unfortunately, the disease was already so advanced that this procedure could not be finalized - Ms. Magdalena's mother died. The woman stresses that she realizes that perhaps her mother's life ultimately could not have been saved anyway. However, she would like to be sure that she used all available options to fight for her. Unfortunately, at the beginning of her journey, she did not get this information from doctors. By the time she got to one who knew what treatment should be sought and was ready to take steps to get it - it was too late.

THE FIGHT FOR KNOWLEDGE.

- It's good that we're raising awareness with women, but let's do the same with doctors. Not all female patients are able to access information on their own, nor does everyone have the courage to ask their doctor about something. Being informed about all possible treatment options should be the basis of contact with a medical professional," stresses the daughter of the deceased patient.

Ms. Magdalena has gained a lot of knowledge about endometrial cancer not only from foreign forums, but also through her contacts with patients who are members of a Facebook group dedicated to endometrial cancer. As Anna Kupiecka, president of the OnkoCafe Foundation, which initiated the founding of the group, admits, patients all too often have trouble getting comprehensive knowledge from their doctor about all treatment options.

- Patients too often do not have complete information about what the treatment pathway could be. The care of this group of patients is often chaotic, incidental and scattered. Because of this, they circulate between different doctors, which prolongs the path of correct diagnosis or then the course of treatment viewed horizontally: assuming surgical, but also systemic treatment," points out Anna Kupiecka.

A big problem is that some doctors do not inform about all the options that exist for treating a particular disease entity.

- It's a bit of a systemic problem. Doctors have too little time to see one patient and not everything manages to be communicated right away. I am outraged by situations in which some doctors decide that they will not tell a patient that there are therapies available that are not reimbursed in Poland, judging that the woman in question will not be able to afford to finance it and not wanting to make her uncomfortable. Such words should not come from the mouths of doctors. It is necessary to inform what treatment in accordance with the latest medical knowledge could be applied to the patient," he points out.

With such information, women can make decisions or take actions that will often help save their lives. The doctor can also suggest contacting scientific societies or patient organizations.