Two years waiting for breast reconstruction

TerrassaStretched out on a stretcher and with her hands clasped on her abdomen, Mila Fernández, 51, could not hide her anguish and her joy this Monday. Believe it or not, both feelings came to her in equal measure. The nurse was making the last preparations and the anaesthetist asking the last questions before taking her to the operating room of Terrassa Hospital. "This way I can finally close the circle," Mila sighed. A circle that has lasted no more and no less than "four years with its days and nights", as she says. An eternity. That's how long she has been on the waiting list for a breast reconstruction operation after suffering from cancer.

This Tuesday is World Breast Cancer Day and everyone is wearing pink ribbons and talking about the need to fight this disease. But in practice many women who have suffered from it feel forgotten and undervalued by the administration once they have already overcome the worst: they have to wait months or even years to have their breasts reconstructed after being mutilated. In some Catalan public hospitals the waiting time is downright shameful.

Mila was diagnosed with breast cancer in January 2016, but was not operated on until September that same year after undergoing chemotherapy to reduce the size of the tumour. She had what's called a radical mastectomy, meaning they cut out her entire left breast. And they also opened her armpit to remove about twenty lymph nodes to prevent the cancer from spreading to the rest of her body.

After the surgery, she had to undergo 25 sessions of radiotherapy and inject a drug, trastuzumab, every three weeks, "a kind of chemo in disguise," she says. She finished the treatment in July 2017 and that's when she was put on the waiting list to have her breast reconstructed. She has an official document from the Hospital de Sant Pau in Barcelona – which is where she was treated for cancer – that proves it. Because that's another thing: public hospitals do not include this type of patients on their waiting lists until they have finished the treatment and can be operated on, despite the fact that the reconstruction operation is never carried out immediately and the wait may take months or years.

Wearing a prosthesis inside a bra

During the four years Mila has had to wait, she has worn silicone prosthesis. "You have to buy a special bra with a kind of little pocket to put them in," she describes. Dressed and at first glance it looks like a normal breast, she says, but, of course, the suffering is on the inside. "I can't wear pretty underwear or cleavage. These are small things, but they add up. The truth is, I can't talk about it without ending up crying".

Crying is also how Mila always ended up when she had a consultation with the surgeon, because she never gave her a date for the desired operation. In fact, she admits, her life came to revolve around that: "I didn't go on holiday in case they called me for surgery". And she even filed two complaints against Sant Pau hospital, the last on February 5, when she had been on the waiting list for three years and seven months. The hospital replied the following on 23 April: "At present we cannot predict a specific date for your operation [...]. At the moment, the waiting list for the procedure you require is still longer than we would like and we have to prioritise the most serious patients for whom the wait for surgery could be life-threatening".

And though it may be true that her operation was not life-threatening, she felt undermined. This applies to her but also the many other patients who are still on a waiting list. In fact, the Catalan Society of Plastic, Reconstructive and Aesthetic Surgery (SCCPRE) conducted a study in July among public hospitals that have plastic surgery service that showed that patients who cannot have their breast reconstructed immediately in the same operation in which the tumour is removed, often fall into a bottomless pit: one in three has to wait an average of one to two years, or even more, to undergo a reconstruction procedure, with all that that entails.

"Such a long waiting time is not acceptable. Breast reconstruction should be part of the oncological treatment due to the emotional consequences involved," says the president of the SCCPRE, Dr. Josep Prat. The SCCPRE has formally requested the Department of Health to include this type of intervention in the group of priority operations for which the waiting time cannot exceed half a year, as with cataracts or hip replacements.

In fact, in April 2019 the then Catalan Minister of Health, Alba Vergés, already announced that they were working on the development of a new decree to ensure breast reconstructions were carried out within six months, Dr Prat recalls. But then came the pandemic and good intentions fell on deaf ears. This Monday the Department of Health repeated the same tune: they are still "working" with that goal. But so far, without any result.

And not only that. The SCCPRE study also states that only one in four public hospitals in Catalonia can offer all breast reconstruction techniques, such as the one applied to Mila in Terrassa Hospital: they have reconstructed her breast from tissue that has been removed from her own abdomen. But other much simpler techniques are not available in all centres, such as micro pigmentation of the nipple's areola, which is a kind of tattoo that looks like the nipple. When a radical mastectomy is performed, the reconstruction is carried out in at least three interventions: first the breast, then the nipple protuberance and finally the areola.

There is no equity of treatment

"There is no equity, the same treatment is not offered in all public hospitals," regrets Dr Prat. In other words, it is a postcode lottery: having access to a certain treatment or waiting more or less simply depends on where you live. Mila waited three and a half years to be operated on at the Hospital de Sant Pau. On the other hand, at the Terrassa Hospital she was operated on in just six months.

More examples: Esther – who is 46 years old but prefers not to give her surname – had a mastectomy at the Hospital de la Vall d'Hebron in 2015 and was given a list of three private tattoo artists to go and have her nipple areola done. At her own expense, of course. It was in 2016 and 2019, because pigmentation only lasts a few years. On the other hand, Vanesa Subirón, 41, has had it done in a public hospital but has had to go through an ordeal. She can't remember the dates because there have been too many things: she only remembers that in 2016 she was diagnosed with breast cancer, that she didn't have a breast for a hear and a have and that she has gone through three operations that she wouldn't wish on anyone.

In the first one she had a radical mastectomy of the left breast; in the second one they in an expander. This is a kind of bag filled with serum every month so that the skin of the mutilated breast starts to give; and in the third they put in the prosthesis. In October 2020 they reconstructed her nipple and last September, almost a year later, they did the micro pigmentation of the aureole. "When I saw it, I started crying," she confesses. She couldn't believe that she could finally turn the page and forget the cancer that almost took her life.

The Department of Health has issued a press release on Monday in which it points out that eleven public hospitals perform micropigmentation of the areola. But it does not specify how many public hospitals ought to do it – according to the study carried out by the SCCPRE, in Catalonia there are at least 28 public hospitals with plastic surgery service – nor the waiting time.

Mila says she has needed sleeping pills since she was diagnosed with cancer. She doesn't know if she will be able to sleep after the operation this Monday, but she hopes that no other woman will have to go through what she has suffered. And that the pink ribbons are not just symbolic.