Waiting for breast reconstruction: "Abandoned, that's how I feel"

Terrassa / Figueres"Abandoned, that's how I feel," says Ester Lizandra Artigas, 46, unable to hold back her tears. She has been waiting for five years to have breast reconstruction surgery after suffering breast cancer. It is because she is desperate that she has agreed to pose in front of the camera and show her amputated body, so that this little-discussed side of breast cancer may also reach the public conversation and, above all, so that no other woman has to go through what she has gone through. It is the same motive that moved the other women who took part in this report to allow themselves to be photographed, despite their pain and shame.

When a woman has breast cancer, the public health system in Catalonia acts with diligence: the patient is treated and operated on immediately. But once the tumour has been removed, she is put on a waiting list for breast reconstruction, which can take two, three, four or even five years. Sometimes their breast is completely deformed with lumps, folds and scars that are visually damaging to look at and would undermine anyone's self-esteem. This is not just an aesthetic issue.

In other European countries, the situation is totally different. The waiting list is a maximum of six months and in some countries there is even specific legislation that establishes the maximum waiting time for this type of intervention because it is considered unheard of for a woman to have to go through such suffering after the trauma of having had cancer and often having had to undergo chemotherapy and radiotherapy treatment. Not in Catalonia. Here about 6,000 cases of breast cancer are diagnosed each year. It is the most widespread tumour among women. In fact, it is estimated that one in eight women will develop breast cancer in their lifetime. It can happen to anyone.

Ester is an administrative assistant and lives in Terrassa. She is a woman who doesn't mince her words, but who can't help but break down when she talks about her ordeal. In 2014 she had a preventive bilateral mastectomy, that is, both breasts were cut and silicone prostheses were put in, because she constantly had cysts, polyps and nodules in her breasts and her mother had already suffered breast cancer. The decision to have such a major operation was hers, even though she was still healthy at the time. However, that did not save her: two years later she developed breast cancer between the skin and one of the prostheses and the implant had to be removed. She underwent surgery on January 2, 2017 at the Hospital Mútua in Terrassa. Since then she has been waiting to have her breast reconstructed.

"Of course I'm not just my breasts," she answers indignantly when questioned about the trauma it caused her, precisely, after she did not hesitate to have her breasts amputated to dodge cancer. But that is another issue: her chest is totally deformed, she has lumps and scars where one of the prostheses used to be, and she has no idea how long she will be on the waiting list. "If they tell you that you have to wait five years, logically it would be a bummer, but at least you can count down. The problem is that nobody tells you anything," she laments. The days go by, the months and the years go by, and nothing changes. "I've come to think that no one would operate on me, that I would stay like this," she claims. "I don't want to put on a breast to please men. What I want is to get up in the morning, look at myself in the mirror and like myself," she adds with anger and impotence. She does not understand that mastectomy is part of breast cancer treatment, and breast reconstruction is not, and is relegated as if it were a secondary intervention, without any kind of priority.

Letters of complaint

On September 20, 2018, a year and almost eight months after the prosthesis had been removed, Ester was referred to the Hospital de Sant Pau in Barcelona for surgery using the so-called DIEP technique, which consists of reconstructing the breast with skin and fat from the abdomen using microsurgery. This technique is only performed in nine of the 68 public hospitals in Catalonia. On June 11, 2019, or almost a year later, the Sant Pau hospital summoned her for a first visit and put her on the waiting list for surgery, and never contacted her again. Ester did send repeated emails to the hospital's customer service department, in which she no longer asked what day she would be operated on, but in what year. They did not give her any specific answers either.

Last summer, exasperated, she sent letters of complaint everywhere and even contacted the mayor of Terrassa. A few months later she was referred to the Hospital de Terrassa, where she was successfully operated on on December 20. Weeks before, she had given an interview and allowed herself to be photographed for this report and, after the operation, she also wanted her testimony to be published as to denounce the situation. The Hospital de Sant Pau has declined to make any statement on the long waiting list for this type of surgery because, it has argued, it prefers that the Department of Health comment on this issue.

"It worries us and we are working on it", summarises Ignasi Carrasco, the director of the care area of the Servei Català de la Salut, who on Tuesday received me in his office in Barcelona. ARA had been requesting an interview with a Health Department official since March 7. "We do not have a specific code for breast reconstruction after cancer within the Servei Català de la Salut," Carrasco began by explaining. In other words, there are no specific statistics for these cases. All breast interventions – whether it is a cyst or a breast reduction – are lumped into the same category. "If we don't have specific codes, we can't separate the wheat from the chaff," admitted the head of the Servei Català de la Salut. Even so, he provided some data.

Of the 6,000 women diagnosed with breast cancer each year in Catalonia, 25% undergo mastectomy. "In February we did a survey in the breast oncology units and there were 600 women pending reconstruction. Of these, 180 have been on the waiting list for more than a year," explained Carrasco. These statistics, however, do not show the full picture: patients are not put on the waiting list when the mastectomy is performed, but when the oncology treatment is completed or when the wounds from the first operation are well healed. This usually takes a year. In practice, this means that women who have been on the waiting list for over a year have actually had their breasts amputated over two years ago.

"In Germany we have a waiting list of two to six months," says Dr. Riccardo Giunta, who is surprised by what is happening in Catalonia. Dr. Giunta was president of the German Society of Plastic Surgery and is currently a member of the executive committee of ESPRAS (European Society for Plastic, Reconstructive and Aesthetic Surgery). Precisely last year ESPRAS conducted a survey with the aim of bringing post-cancer breast reconstruction standards into line across Europe. According to Dr. Giunta, the most advanced countries in this field are in Scandinavia.

Dr. Lisbet Rosenkrantz Hölmich, of the department of plastic surgery at Copenhagen University Hospital, corroborates this: "In Denmark we have a law that says that a woman has the right to have her breast reconstructed within a maximum of one month from the moment her body is ready for the operation after cancer treatment," she explains. "If the public hospitals cannot assume the intervention, it is done by a private hospital but paid for by the regional government," she goes on to explain. She is also astonished that in Catalonia women have to wait years.

Sara, 49, has been waiting for almost three years. She is a sales clerk and also lives in Terrassa. She does not want her real name or face to appear, but she wants to show what state her body has been left in. As soon as she begins talking about it, she starts crying. She can't help it. On June 6, 2019, she had a mastectomy at the Hospital Mútua in Terrassa and received an expander implant. That is, when they took the breast out they put in an empty bag that then gradually filled with serum every month. Its aim is to generate new skin and implanting a prosthesis in a second operation.

A reputed plastic surgeon who works in the public health system in Catalonia and who prefers to remain anonymous clarifies that expanders are used when there is not enough skin to close the wound or when the surgeon does not know whether the skin of the removed breast will be strong enough to hold a new prothesis. "Knowing that depends on the surgeon's experience and having special technology," he says. But not all the hospitals in the public network have this technology, nor are there plastic surgeons in most of regional hospitals, he denounces.

In fact, "the main problem is that there are very few plastic surgeons in the public health system. They earn a lot of money in private healthcare," continues this physician. According to him, whether a woman can have her breast reconstructed in the same operation in which the mastectomy is performed often depends on where she lives and on the resources available in the hospital nearest to her.

Silicone prosthesis

Sara's expander got infected during radiotherapy, and she had to return to the operating room to have it removed. Then her breast was completely deformed: one side with a particularly large breast, and the other with nothing at all. To conceal it, she wears a silicone prosthesis that she places in her bra. "It is worst in summer because I wear fewer clothes and it shows more," she laments. She, like Ester, was also referred to the Hospital de Sant Pau for reconstruction.

"In October 2020 I had a first visit and the surgeon promised me that, if I quit smoking, he would operate me in under six months," Sara recalls. So that's what she did: quit smoking radically. She called the surgeon, but couldn't get through to him. She called again and his secretary told her not to bother them anymore. She sent e-mails to the hospital's customer service department, desperately saying, "I kept my word about quitting smoking. Please keep yours". And all they replied was that they could not give her a date for the operation.

Last December, when Sara went to Terrassa Hospital for a check-up on the effects of radiotherapy, the doctor who saw her was surprised that she still had not had reconstruction: "Let me see what I can do", she told her. Sara has now been referred to that hospital and is waiting to be operated on there. Since her cancer diagnosis, she has been under psychiatric treatment. She takes eleven pills a day. "Sometimes I think about taking the car, crashing and getting it over with," she confesses. "At the beginning I could handle everything: I had surgery, chemo, radium, they took out the expander. But as time goes by, I can't do it anymore."

"Society and doctors don't give losing a breast the importance it has. It especially affects women's self-esteem, their self-conficence by their partner, their sexuality," Laura Bendesky, who is a psycho-oncologist at the Association Against Cancer in Barcelona and perfectly understands it should cause so much trauma and suffering. "It is not a mental weakness," she insists.

In April 2019, the then Catalan Health minister, Alba Vergés, announced that she was working on a decree to guarantee breast reconstructions in six months, in the same way that hernia operations, knee prostheses and cataracts are also performed in that time frame. But then came the pandemic and the issue was forgotten. Now the director of the care area of the Catalan Health Service has this to say about it: "I don't see that the solution is to set a deadline. The solution is to work so that all women can be operated on as soon as possible". But what does "as soon as possible" mean? "First we have to carry out an analysis to find out what the situation is. We cannot promise we will guarantee something if later we cannot guarantee it". With that goal in mind, she explains, she has already contacted the president of the Catalan Society of Plastic Surgery, Dr. Josep Prat.

Initial phases

For the moment, however, it seems the process has not yet made much headway. Ignasi Carrasco cannot specify which hospitals have a waiting list for this kind of operation, nor how long the maximum waiting time is at present, nor how many operations of this type are performed each year. Even so, he affirms that the problem "is not a question of money, it is a question of organisation". Does he at least know when the analysis he wants to carry out will be ready? "We can decide now. In July it could be ready," he declares, implying that his answer is totally improvised.

The Catalan Society of Reconstructive and Aesthetic Plastic Surgery made a study in July last year in which it denounced the long waiting list for this type of intervention. Now its president prefers not to make any statements before his meeting with the Catalan government.

Carme Valls, a physician and expert in medicine with a gender perspective, considers that there is a clear gender bias in this issue. "If a man has a testicle removed, he gets a replacement right away. And I've never seen a man have to wait five years for a penile reconstruction either," she says. According to her, long waiting lists for breast reconstruction are a subtle form of violence against women.

Maria Àngels Afonso Vergés also believes that the Generalitat would seek an immediate solution if it were a penis that needed reconstructing. She has also had a mastectomy. She is 45 years old, she is a social worker, lives in Figueras and everyone knows her by the name of Angi. At the end of 2019 the doctors detected a small lump in one breast, but told her not to worry because it was only a water blister. However, almost a year later she was diagnosed with cancer in that breast and also in the other one. It had spread.

"Initially I was supposed to have the mastectomy and reconstruction in the same operation, but I had metastases in the skin, they brought the operation forward and could only do the mastectomy because they didn't have enough operating room hours," she says. On July 7 last year she was operated on at the Josep Trueta Hospital in Girona. Both breasts were amputated.

Initially she was told to rest assured that her breast would be reconstructed within a year. Later, however, she was told that this meant within a year not of the operation but of the end of radiotherapy, last November. And then that it could be 18 months because there was a lag in operations due to coronavirus. Every time she is told not to worry, the opposite happens.

"My mother also had a mastectomy and died after five years without having had her breast reconstructed," she says, showing some photographs in which the smiling mother can be seen, full of life, before her cancer was detected. "I used to wear a medal of hers, but now I've taken it off," she confesses. She fears that this pendant will make history repeat itself with her. Since the amputation of both her breasts, she has not had sexual relations with her husband. Not because he doesn't want to, but because she no longer feels attractive, she says.

The Josep Trueta hospital did accede to provide data on breast reconstruction operations: it has 197 patients on the waiting list. Sixty-seven percent already underwent immediate reconstruction when the tumor was removed, but need a new operation; 27% did not undergo a mastectomy, so they keep part of their original breast; and 6% must undergo a preventive bilateral mastectomy due to the high genetic risk of suffering breast cancer. According to hospital sources, Angi's case is completely exceptional.

Cari Nicolàs Curti is 56 years old, is a nursing assistant and lives in Terrassa. She is an example that the problem of waiting lists for breast reconstruction after cancer already existed before the pandemic. She had a mastectomy at the Hospital Mútua in Terrassa on July 9, 2015 and had her breast reconstructed with the DIEP technique at the Hospital de Sant Pau on March 9, 2020, a few days before the Spanish government decreed the lockdown. In other words, she was on the waiting list for four years and eight months. And according to her, she was operated on because she filed a complaint. Now she is waiting for an operation to symmetrise both breasts and to have her nipple reconstructed, but she does not lose sleep over it. She has no idea when this whole process will end. It has been going on for almost seven years now.

She did inquire about having the surgery done in a private hospital. "It cost between €21,000 and €24,000, and they wouldn't do the surgery on my arm," she says. Cari has lymphedema in her left arm as a result of the cancer. During the reconstruction operation, she also underwent a lymph node transplant from the groin to the armpit. The operation lasted twelve hours.

"Before covid, the waiting lists for breast reconstruction were already long in any hospital, two years or more," she says. "I work in the health system, I know how healthcare works and I know everyone is working as hard as they can. This is not a problem of organisation, it is a problem of lack of resources and of how badly public healthcare is being treated despite the good professionals it has," she concludes.