Breast cancer in young women and YouTuber videos...

In today's world, where we encounter people speaking outside their expertise in almost every field, the reckless sharing of information, especially regarding health, harms patients the most.

The principles in medicine of “there is no disease, there is a patient” and “first, do no harm” are unfortunately either not taken seriously enough or forgotten! Recently, a segment of people who “pretend” and steal the spotlight from experts have begun sharing their vast knowledge with thousands of people in fields they became experts in over just 3 days. They can do this easily because, unlike in the past, no one respects experience or knowledge anymore.

This issue of “not leaving the job to the expert” is one of the primary complaints of those working in the health sector. Because no matter which meeting or conversation we join, before getting to the main topic, we listen to how the “incompetent” harm patients.

At the beginning of the week, important messages were given regarding this topic at a meeting where the results of the “Patient Journey in Triple-Negative Breast Cancer” research, conducted by the Cancer Warriors Association, were announced. It was explained that individuals without expertise or patients who film videos titled “How I beat the disease?” can sometimes create excessive confusion and thoughts of abandoning treatment, and sometimes provide false hope.

Informing / obtaining information for cancer patients is one of the most delicate issues.

Another dimension of this issue is that we have a sufficient number of medical oncologists, i.e., cancer specialists, to meet the needs of patients. However, due to the problems in the appointment system that have been ongoing in hospitals for a long time and the short examination times, some patients try to seek information from sources other than their doctors.

IT CAN BE MORE AGGRESSIVE EVEN IN EARLY DIAGNOSIS

Getting to the main point; why is accurate information important in triple-negative breast cancer?

According to World Health Organization data, while 19.3 million new cancer cases are seen worldwide annually, this figure is expected to exceed 30 million by 2040.

According to Ministry of Health data, approximately one in every 6 deaths worldwide, and one in every 5 deaths in Turkey, occurs due to cancer. Breast cancer ranks first among cancer types in women in terms of incidence and mortality rates globally.

Triple-negative breast cancer (TNBC), one of the types of breast cancer which is the most common cancer in women, has a special significance because it targets young women. The TNBC subtype accounts for approximately 10-15 percent of all breast cancer cases globally.

AWARENESS IS NEEDED FOR TIMELY DIAGNOSIS

While triple-negative breast cancer is often diagnosed in young women and before the age of 50, the age of diagnosis for most other breast cancers is over 60. In Turkey, the average age of diagnosis for TNBC ranges between 44 and 50.

Since triple-negative breast cancer is seen in the 20s, it is not caught in screenings. Sometimes, misconceptions and negligence lead to “not suspecting” the disease in this young age group. This means a loss of time in a vital disease like cancer.

Sensitivity and awareness are needed for a timely diagnosis. Before receiving information from social media, or even being exposed to misinformation, NGOs and the Ministry of Health need to work together.

Belma Kurdoğlu Akgün, President of the Cancer Warriors Association, also believes that the research they conducted will create awareness in society.

FAMILY HISTORY OF CANCER IS AN IMPORTANT FACTOR

In this type of cancer, which tends to grow rapidly, the probability of it having spread at the time of diagnosis is higher. Furthermore, the risk of recurrence after treatment; the probability of spreading to other parts of the body, especially the lungs, brain, and liver, is described as high.

The importance of continuing cancer treatment with a personalized plan is great. Before starting treatment, criteria such as whether there is metastasis, the patient's comorbidities, the dose of the drug, and the intervals at which it will be administered must be considered.

Medical Oncology Specialist Prof. Dr. Özlem Sönmez states that triple-negative breast cancer differs from other breast cancer types in terms of disease progression and treatment response. In other words, standard information and approaches may not be valid for this cancer subtype. Prof. Sönmez continues as follows:

“Triple-negative breast cancer patients usually consist of young women, and a significant portion of them have a family history of cancer. Because the disease is diagnosed at a late stage in young women and progresses aggressively, rapid access to innovative treatment options for patients is even more important. In this process, it is essential that patients are informed in detail and accurately by their physicians.”

DO NOT EMPATHIZE, LEAVE THE JOB TO THE EXPERT

Emphasizing that patients searching for treatment methods from sources not created by experts in the field, especially social media, can lead to irreversible negative results in diagnosis and treatment processes, Prof. Dr. Özlem Sönmez's call is as follows:

“People want to believe the easiest information they see on social media. However, comments should not be made according to anyone's treatment. A YouTuber comes out and publishes videos saying 'this is how I beat cancer.' But after a while, you see that they have passed away. Everyone tells their own story on social media, but the patient being lost after a while causes other patients to lose hope. That is why we say do not share your illness and your memories.

For the treatment and follow-up of the disease, a medical oncology specialist must be consulted. There is a problem with the time allocated to the patient, but in fact, there is no problem with access to physicians in the field of medical oncology in Turkey. The knowledge level of medical oncology specialists working in this field in our country is at the highest level. Patients should be ensured to refer to reliable sources where accurate information can be obtained, such as the website of the Turkish Society of Medical Oncology.”

Prof. Dr. Sönmez also has a warning for her colleagues; “Every doctor should not speak on topics that fall under the scope of medical oncology. This is not empathy. You have to leave the job to the expert.”

SOCIETY IS NOT CONSCIOUS ENOUGH

Marmara University Faculty of Medicine Faculty Member Prof. Dr. Gürkan Sert emphasizes that during their research process, they found that there is not enough awareness in society for the diagnosis of triple-negative breast cancer, that patients have significant knowledge gaps regarding diagnosis and treatment, that they cannot foresee what they will experience during the treatment process, and that the diagnosis and treatment processes cause difficulties in the lives of the patient and their family.

Some of the findings Prof. Dr. Sert obtained in the research are as follows:

* The time to receive a diagnosis varies according to the health institution the patients apply to.

*Young age and not having a family history of cancer cause the diagnosis time to be prolonged.

*The prolongation of the patients' diagnosis time complicates the treatment processes.

*With the start of treatment, patients may experience difficulty/pain, fatigue, nutritional problems, and psychological problems during the chemotherapy process.

*The processes experienced by those receiving services from private hospitals and public hospitals during the treatment process may differ.

*Financial difficulties directly affect the patient and their relatives at every stage of the disease.

* There are problems in accessing innovative treatment options used in cancer treatment.

*Lack of knowledge and information about diagnosis and treatment increases anxiety and worry in patients.

*Patients who cannot reach accurate information about their disease or are misinformed may resort to obtaining information from the internet.