The last day of February every year is the International Day of Rare Diseases. As its name implies, Rare diseases refers to diseases with a very low incidence. According to the definition of the WHO, rare diseases account for 0.65 ‰ ~ 1 ‰ of the total population. In rare diseases, rare tumors account for an even smaller proportion, and tumors with an incidence of less than 6/100000 can be called "rare tumors".
Not long ago, FasterCures Non-invasive Cancer Center received a 21-year-old college student Xiaoxiao with a full 25 cm malignant tumor in her body. This is a rare disease called "Ewing's sarcoma", and most of the patients are between 10 and 30 years old. Since the tumor is too large and malignant, her family decided to come to Beijing to find a treatment.
In 2019, 18-year-old girl often felt chest and back pain and felt a bag. Her family took her to the hospital for examination, and there was no abnormality. She thought that she might be tired of her high school studies, so she put on a plaster and seemed to be relieved. After that, the matter was left behind.
A year later, Xiaoxiao felt a tingling pain and was diagnosed with Ewing's sarcoma in repeated examinations. several hospitals recommended surgery after chemotherapy. "We don't feel reassured, and not confident in curing this disease," said Xiaoxiao frankly. She was full of fear of chemotherapy and surgery, and finally chose cellular immunity and traditional Chinese medicine treatment.
In 2021, re-examination showed that the tumor was enlarged to 25 centimeters, and the pain in the right low back was more severe than before. Xiaoxiao began to take the painkiller ibuprofen to relieve the pain.
If there is no effective treatment, Xiaoxiao's situation will be very dangerous, the family has to put their heart in their mouth to live, worrying about death will take Xiaoxiao away any moment.
"Why is this rare disease happening to us?"
As the saying goes, a storm may arise from a clear sky, man's fate is as uncertain as the weather.
No one can predict the future, and no one can predict what will happen to his body. But every life has the right to live.
Flowers in the same age should not wither so early!
Xiaoxiao, hovering between hope and disappointment, came to Beijing and chose a non-invasive treatment.
Focused ultrasound ablation has long been a case of this similar disease, and limb salvage has been successfully performed for patients with bone tumors facing amputation, which is younger than Xiaoxiao.
The operation was carried out on time, because the operation was carried out in a fully awake state, Xiaoxiao sobbed softly, or lamented the injustice of fate, or thanked God for opening another door for her. Her crying seemed to be a release of life, but fortunately, the result of the operation that day was good, and there was hope of life.
According to doctors, soft tissue sarcoma is a very rare tumor with an incidence of less than 1/100000. The number of new cases in China is less than 40, 000 every year. Once metastasis occurs, the median survival time is about one year.
"Soft tissue sarcomas can occur in all organs of the body, even the skin."
Doctors said that the onset of the disease is hidden, and the corresponding symptoms will appear only when the lump is oppressed on other surrounding organs. For example, a patient with soft tissue sarcoma of the nasal cavity is currently being treated in the ward of the rare disease department. Because the nasal congestion has not healed for a long time, the CT examination found the lump.
"However, the corresponding symptoms are not typical, such as a stuffy nose, everyone's first reaction must be a cold, and almost no one would think of a tumor, which means that even after showing symptoms, the patient may not see a doctor in time.
The survival time of soft tissue sarcoma is related to staging. Once bone metastasis occurs, that is, relatively late, the median survival time is basically about one year."
Chen Qian, senior doctor from FasterCures Center, mentioned that soft tissue sarcomas mostly occur in teenagers, because during this period, both muscles and bones are in the stage of exuberant growth and development, and some abnormal hyperplasia may occur in the process of rapid cell proliferation.
Some may be benign hyperplasia or precancerous lesions at first, but without timely attention and treatment for various reasons, it may eventually lead to soft tissue sarcoma.
"Generally speaking, the tumor cure rate of teenagers is significantly higher than that of adults, which is based on early detection, early diagnosis and early treatment, but a considerable number of teenagers find the tumor too late and lose the opportunity for a radical cure, so in any case, the three 'early' are very important."
Chen Qian warned that many middle-aged and elderly people have formed the habit of regular physical check-ups, but there are still a considerable number of young people who have not done so.
"Many parents are puzzled after their children are diagnosed with a tumor. the school organizes a physical examination every year, so why can't they find out?
School physical examinations are very basic items, in fact, even the unit's annual regular physical examination can only do rough screening, found abnormal and then fine examination can find the problem."
Therefore, whether they are parents of teenagers or young people in their twenties and thirties, they must pay attention to physical examination, do not take a superficial form, but consult a doctor to select projects in a targeted and comprehensive manner.
Post time: Mar-09-2023