Marisol Soengas, cancer researcher and tumor patient: ‘We shouldn’t say that everything is going to be all right’

Biologist and president of the Spanish Association for Cancer Research, Marisol Soengas, 56, has cancer. On January 3, she went to the hairdresser and asked to have her blond hair shaved off. She had discovered a three-centimeter lump in her breast one night, on returning from the gym. While half the country was watching the Christmas lottery, her doctor announced that she had an aggressive form of breast cancer that had to be treated immediately. “They told me that my hair would fall out with chemotherapy almost immediately and I didn’t want to find my hair in my hand, so I shaved it off,” she says. She bought a wig and continued to go to work as usual at the National Cancer Research Center in Madrid, where she runs a reference laboratory for the most aggressive skin cancer, melanoma.

Originally from the village of A Aldea do Monte, Pontevedra, in Galicia, Soengas continues to go to the gym, her shaved head on show. Her cancer is one of the complicated ones, but she feels well and, as if to prove it, plays a video of herself doing pull-ups. She knows that if the tumor had developed a few years earlier, she would probably be dead now. Two drugs, trastuzumab (authorized in 2000) and pertuzumab (in 2014), have extended the lives of patients previously considered to have little chance of survival. Soengas has decided to tell her story to EL PAÍS “out of a sense of responsibility” to people with cancer who are lost, and to flag up the lack of access to treatments. Recently, when the American actress Shannen Doherty, who played Brenda in the series Beverly Hills 90210, died of breast cancer, Soengas wrote on her social networks: “In this case, it wasn’t to be, but let’s keep trusting in science.”

Question. You hate being told, “Everything is going to be all right.”

Answer. Well, yes, you understand why it’s said, as it’s to encourage you, but we don’t know. The oncologists don’t know, and neither do you. So, this “Everything is going to be fine,” can actually hurt. You trust that the treatment will work, but you don’t know how long it will work for and you don’t know what side effects you’re going to have. It’s much better to say, “How are you?” And another thing that we patients don’t like at all is the typical talk about the battle against cancer: “Don’t stop fighting!” That is very annoying. The cells that are responsible for the tumor are there, they are mine and they have alterations. And I cannot control that. I cannot fight against myself, what I can do is not get discouraged.

Q. What is your diagnosis?

A. A breast tumor with a very large proliferative index and with amplification of the HER2 gene. I also have a mutation in a protein called PI3-kinase. In other words, I have two very powerful alterations. Fifteen years ago, my prospects of survival would have been very poor, but they have improved a lot as treatments have advanced. The same day I had the full diagnosis, which was three days before Christmas, I started the first round of therapy: seven hours sitting in a chair, receiving an intravenous treatment. Your world has just fallen apart and turned upside down, and you have seven hours ahead of you.

Q. What went through your mind in those seven hours?

A. I was crying most of the time. Knowing everything I know about cancer, I was very scared, because I didn’t know if I was going to respond to the treatment, or if I was going to have side effects. During the second treatment session, I took my computer with me because it coincided with having to write a proposal for a scientific project. People looked at me a bit oddly, but I wanted to continue working. I know I’m going to be tied to the hospital for a long time. That’s hard to take in. I am aware that there is a possibility that the tumor will evolve, but I am not going to stop working because of that.

Sometimes I look at myself in the mirror and I don’t recognize myself: your face changes a little with the treatment, you look sadder”

Q. How was your day at the hairdresser?

A. Because your hair tends to fall out with chemotherapy, I decided to shave it off first. The hairdresser asked me if I wanted the mirror covered, so I wouldn’t see myself. I said no. I have never been one to hide. She shaved me almost to zero, with the machine. It was a total G.I. Jane moment. I do go to the gym without a wig or scarf. The first time I went, I realized that, for some people, it was a shock. Some shied away from looking at me because they didn’t know how to react. You have to normalize these things. When I turned 50, I challenged myself to do pull-ups, and I did 10 with weights. Now it’s hard and I do them with a rubber band, but I keep training. Sometimes I see myself in the mirror and I don’t recognize myself: your face changes a little with the treatment, you look sadder. I’m a very cheerful person and I think: “I’m not like that, I don’t want to be like that.” Covering my head for this interview is intentional.

Q. Why?

A. I’m sticking with the hat. I used to wear scarves, but the beanie is more daring and gives a more dynamic impression. I go to work wearing one, but it’s true that at some events I wear a wig, although less and less. It’s more about making others feel more comfortable than for me. If people see you without hair, they think you look bad. And that’s because of everything that is happening to you, but physically I feel fine. Maybe at some point it won’t be like that, but right now it is. I don’t like the idea of feeling sorry for myself. I don’t want people to come up to me and say, “Oh, I’m so sorry, Marisol.” I don’t want pity. What I want is to have it recognized as a situation and that’s it.

Q. How much does a good wig cost?

A. You can get them from €100 to €1,800 or more. I have a good one, made of natural hair. That is important. Depending on your purchasing power, you get better or worse. In fact, there is a lot of data showing that patients become poorer during treatment, and that worries me.

Q. Why are you making your situation public?

A. I gave it a lot of thought, because exposing yourself in public leaves you vulnerable, but I have always recognized the need to make cancer patients visible. I felt it was a responsibility, and even more so being president of the Spanish Association for Cancer Research. Many patients are afraid of how people around them will react and, above all, of losing their jobs, which would be very unfair. There is also a lot of misinformation about treatments and clinical trials. Psychological support is very flaky, and personalized medicine is not advancing as it should. I now want to help as a scientist and also as a patient.

A drug approved by the European agency takes 725 days to reach patients in Spain, compared to 93 days in Germany. That is not fair”

Q. The American scientist Dennis Slamon, who came up with the drug trastuzumab, said in an interview with EL PAÍS in 2019 that millions of women have benefited from this treatment. You are one of them. Have you spoken to Slamon?

A. Yes, because I wanted to know about advances in the field. I have received eight rounds of chemotherapy and two antibodies: trastuzumab and pertuzumab. There was a clinical trial with variants of these antibodies, but it was closed just before I was diagnosed. It’s a little frustrating to know that there are other treatments that are working well but are not yet approved. I want to buy time to get to these improved antibodies.

Q. Could these clinical trials be accelerated if more patients were participating?

A. Yes. And that requires funding and more coordination between different scientific and clinical groups. As researchers, we are very used to long time spans. We know that it can take as long as 10 years or more, from the time a therapeutic target is identified until the compound is on the market. We patients don’t have that time. Breakthroughs have to happen sooner. Another big problem is red tape. Spain is among the European countries that take the longest for a drug to reach patients after being approved by the European agency. For oncology products, the average is 725 days, while in Germany, for example, it takes 93 days. That is not fair.

Q. There are people who slip through the net.

A. Of course. Health systems have to make decisions about how cost-effective a new treatment is. But it is necessary to speed things up, because there are patients who have no other option. If a treatment is already approved in the U.S. and Europe, a new analysis and reanalysis in Spain is like reinventing the wheel. As a scientist, I can understand that, if you are talking about extending a life by five months, the health system may not consider it a significant enough amount of time and, if the treatment is too costly, it will not be approved. The other day I spoke to a person with brain metastases and he said, “Well I made it to my son’s wedding.” Those five months can also get you into another clinical trial. Decisions can’t just be made on an economic basis.

Q. Do you participate in any experimental treatment trials as a patient?

A. I am currently in a maintenance clinical trial, with an inhibitor against the PI3-kinase protein mutation. This mutation is present in 40% of women. As it is a maintenance trial, it is very long. It will be years of treatment, with pertuzumab and trastuzumab as a base. This trial is double-blind: neither my oncologist nor I know if I am in the group that actually receives the inhibitor or if I am in the control group that receives a placebo. As a patient, this is very hard to cope with.

It scares the hell out of me to be in physical pain and to get to a point where I am not me, to be dependent on someone else”

Q. What was the survival rate before trastuzumab and what is it now?

A. Pertuzumab and trastuzumab have a very powerful effect in early-stage breast cancers, before metastasis happens. We can get a response for more than 10 years, 15 years, even a cure. But if there are metastases, survival drops to less than 30%. Is that not enough? Yes, of course it is not much, but it is more than what it was, because before it was less than 10%.

Q. And the remaining 70% of patients with metastases?

A. Well, they are no longer around. What science has to achieve is for that 70% figure to improve with a better quality of life. It’s about gaining time and access to better treatments. There are women with metastatic breast cancer who are doing quite well. You have to look at it in a positive way: you don’t get anywhere by getting depressed, you have to keep going. But you have not asked me about my fears as a patient, and I think it is important that we talk about that.

Q. What are you scared of?

A. I have two fears. The personal fear of suffering, of having physical pain and of reaching a point when I will not be me, when I will be forced to stop working and depend on someone else. That scares the hell out of me. And then I worry about the pain that you can cause others. I am also afraid of losing hope. I want to be excited about things, so I have asked for funding for new scientific projects and I am very involved in training and advocacy actions. These are fears that I can talk about now without getting emotional, but a few months ago it would not have been so easy.

Q. And fear of dying?

A. Fear of dying, yes, because of what you miss, but mostly I’m afraid of the pain before I die. And not being myself. But in a little while I’m going to the gym. I want to run 10 kilometers again.

Q. It’s going to be all right.

A. [Laughs] It’s going to be what it has to be.

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