Isabel Cristina Costa (or Bel, as she prefers) is 24 years old and has been fighting breast cancer for four years. The diagnosis, as aggressive as it was early, worried the doctors, who, thanks to a genetic mapping exam, discovered that the law student has Li-Fraumeni syndrome. The condition predisposes to having several types of cancer throughout life.
Therefore, Bel removed not only the left breast, where stage 3 cancer was lodged, but the right, preventively, to avoid a second mastectomy in the future. Since the diagnosis, she has changed several of her habits: food, sun exposure and mental health care. He did all this with the intention of preventing or postponing new cancer.
In testimony to all, she told about the shock of being diagnosed with cancer at age 20, the relief of knowing Li-Fraumeni Syndrome, the fight against hair loss, and, mainly, how she transformed her experience into quality information for other patients .
“I had a silicone prosthesis since I was 19 and at 20, when I was taking a shower, I felt a lump in my breast. I had done a photo shoot just before that and I thought my breast was strange. I thought it was nothing, but I decided see a doctor because he had an exchange trip scheduled for a few months from now, he examined me and, the moment I put on the bra, he said to my mother: ‘The only thing your daughter can have is cancer’.
I went crazy, I thought ‘this guy can only be crazy’. I’ve never seen anyone giving a cancer diagnosis like that. That same afternoon, I had a breast ultrasound and the doctor saw an image that hadn’t been there before. I was, indeed, with breast cancer at the age of 20, in stage 3. The tumor had already reached my armpit. Exactly 13 days later, I had already had a biopsy, passed by the oncologist, done a battery of tests and was sitting on the chemotherapy chair. There were 16 chemo sessions in six months. And in that period, I was hospitalized twice.
I wanted to worry about anything else at that point, except cancer.
I thought I was living a nightmare, but when I opened my eye, I thought ‘it’s true’. At first I was very vain, I worried about how to avoid going bald, because before, I had my hair around my waist. I tried to use that thermal protection cap to keep my hair from falling out, but it was awful, it felt like my head was in a freezer. At the end of the session, ice came out of my hair, I felt a lot of migraine and was losing hair just the same, so I gave up.
I already suffered from chemotherapy, I was sick, and I was still going to get a headache? I thought: ‘my vanity is not worth it’, and I decided to go bald. My mother shaved my head at home, on the condition that I wear a wig.
I was in the middle of college, I had to stop, I couldn’t leave because Brasília is very hot, I couldn’t drive, so I had a lot of free time. I decided to create a blog to tell my story, canceraosvinte.com. It boomed, people started to follow me and it served as an exchange network for me and other young patients who did not know stories similar to yours. Even today girls come to me to say that I can be the reference for them that I didn’t have back there, when I discovered my cancer.
Before surgery to remove the breast, my oncologist referred me to a geneticist to do the genetic mapping. He thought it was important because I was very young and had very aggressive cancer. Here in Brazil it is very complicated to do this test, it is very expensive, it usually causes problems with health plans, and you have to do it several times to understand a possible diagnosis. So my geneticist suggested taking the material here and sending it to a laboratory in the United States. At the time, this process cost $ 750 [valor equivalente a quase R$ 4,2 mil, na cotação atual]. In 30 days, the result came: Li-Fraumeni syndrome.
Is it a serious, relatively rare genetic mutation that makes me susceptible to various types of cancer throughout my life? cerebral, pulmonary, sarcoma, in short, many. This diagnosis ended up giving a direction for my mastectomy surgery: instead of removing only the left breast, where I had cancer, doctors thought it better to take the right breast too, just in case. If I had had a single breast, I probably would have to return with cancer in the next few years.
Because of the syndrome, I do a complete follow-up every six months, tests that show from my head to my big toe. I need to be very careful too. If I had known it from an early age, I would have had a mastectomy there at the beginning, when I put silicone, at 19, and avoided suffering from cancer. I would also have avoided a series of radiation tests, since I have a predisposition to many types of cancer. Since the diagnosis, I cut red meat and I do not take the sun, I leave all smeared with protector. I avoid getting close to cigarette smoke and even experiencing stress. Everyone has to have healthy habits, of course, but for those who have Li-Fraumeni, everything is much more serious.
What reassures me is that now I know this, I have exams all the time, and I know that when I have cancer again, it will appear at the beginning, it has a greater chance of a cure. There are people who are afraid to take the test [o mapeamento genético] says ‘ah, whoever looks for finds’. Really, anyone looking for finds and heals soon right?
Today I am still under treatment, but I take medication at home. I ended my blog and created an Instagram profile to tell stories of other people who had other types of cancer. Because breast cancer has a lot of visibility, has pink October, which is a very glamorous date? and there is nothing pink in the chemotherapy process, we suffer a lot.
There are many people talking about breast cancer, but the language is difficult, it is not always possible to understand. Imagine other types of cancer. So I thought, ‘Why not gather quality information?’ I created the blog and picked it up.
No information that I publish comes out of my head, everything goes through the sieve of doctors that I know, that I trust. And there are testimonials from patients. Anyone who has cancer likes to read success stories.
I was very afraid, I felt that everything took me out of my comfort zone. I found myself very vulnerable, finite. The young man lives very intensely, and not that I was irresponsible, but I didn’t think it was going to hit me. But no one has cancer and remains the same. I am very thirsty to live, I think it is because I found myself facing death. Not that I associate cancer with death, but I was so sick that I saw how fragile life is. My biggest fear today is not to live the best way possible “.
Genetic mapping test
Here in Brazil, exams like what Bel did, genetic mapping, can only be done by medical advice. In her case, the geneticist made the request because she was too young to have cancer so aggressive, and understood that she should investigate. The only way to prove Li-Fraumeni syndrome is by genetic mapping.
But anyone can do, without a doctor’s order, a genetic test that analyzes DNA and detects variations that can increase the predisposition to certain diseases through a saliva sample – this is the case of meuDNA, the only test of its kind in Brazil. For R $ 999, the company sends the exam to the patient’s home worried about serious diseases, such as cancer, especially breast, prostate, endometrium and colorectal.
“These are serious diseases, but they can be prevented and have a high chance of cure when detected early. Hence the importance of a genetic predisposition test, which creates an alert for the risks of some diseases”, says the all the biologist Iuri Ventura, spokesman for meuDNA. “The knowledge of individualized genetic predisposition allows to create an alert about the best health care for each one. With the genetic information at hand, you and your doctor can make important decisions, such as changes in lifestyle, the choice of screening tests and treatments to prevent these diseases “.