Women with breast cancer who do not want breast reconstruction after an amputation do not always feel respected by doctors. This is evident from research by ‘Pointer’ (KRO-NCRV).
Of the almost 450 women who participated, more than half indicated that the consultation room only focused on breast reconstruction. The option to continue living without breast(s) was not presented to them or taken off the table. ‘We must prevent that, he said, because flat is simply not beautiful.’
‘It’s a shame to stay flat’
From conversations with women, a picture emerges of oncologists who actually do not want to discuss the option of ‘no reconstruction’ at all. Former breast cancer patients speak of an ‘all-in package’ and say that a mastectomy and reconstruction are mentioned in the same breath. “The emphasis was very much on repairing,” one woman wrote. “It’s my hospital’s showpiece: implants, and I was clearly not the ideal customer.”
When women themselves suggest living without breasts, they are told that they will regret it. Ex-breast cancer patients tell ‘Pointer’ that the oncologist thought they were too young to go through life without breasts. “It’s a shame to stay flat,” doctors told several women. They were also told that staying flat after a mastectomy would worsen their quality of life. “My doctor said that it would make me depressed and that it would be bad for my sexuality and self-esteem,” says one woman, “she said it was a good thing that I had to do chemo first.” Another tells Pointer’ that she felt slighted by her oncologist when she expressed her doubts about a reconstruction. “He said I probably couldn’t think straight because of all the emotions.”
Controversial research
Doctors rely on research when explaining to patients that breast reconstruction will improve their quality of life. Women who remain ‘flat’ after an amputation are said to be unhappier than women who have had a reconstruction. But these studies are controversial, to say the least, explains plastic surgeon Nathalie Roche of the University Hospital in Ghent in the radio broadcast of ‘Pointer’. ‘This is a very heterogeneous group. This includes either women who are still waiting for a reconstruction, or women who are not eligible for a reconstruction but would like to, or transgender people. So that’s comparing apples and oranges.’
A recent study from 2023 shows that women who consciously chose not to undergo reconstruction were in most cases satisfied with this choice. And that is why she believes it is unjustified for doctors to include these studies in their advice to breast cancer patients. ‘It is of course really presumptuous to have breast reconstruction forced on you. You notice that there is a kind of male thinking pattern in that whole process. That is simply a certain idea that prevails in social thinking, which is so deeply rooted: a woman must have breasts, otherwise you are not a woman. I think there’s more to being a woman than having breasts.’
Lack of support from doctor
Patients’ experiences with doctors mean that some of the women ‘Pointer’ spoke to experience their journey in the hospital as a ‘struggle’. Women sometimes actually have doubts due to the information and lack of support from surgeons. Some women were put on the waiting list for breast reconstruction, against their wishes. “If I changed my mind, I would be grateful to him for that, my doctor said.”
Oncological surgeon Caroline Drukker of the Antonie van Leeuwenhoek in Amsterdam – which mainly performs reconstructions with implants – thinks that she may play a greater role as a doctor than she realizes. ‘But in essence it should not matter which doctor someone speaks to. Because regardless of how we tell it, we will always present all options. And women receive so much information from us, leaflets to read at home. So I wonder if my story actually leads people to a different choice. And then the question is whether that is something someone will regret later. But I hope I’m not too decisive.’ This conversation with ‘Pointer’ took place before the results of the questionnaire were known.
Mutilation
More than 40% of women who chose to remain ‘flat’, so to speak, after a mastectomy are dissatisfied with the aesthetic result of the operation. This does not mean that they regret their choice, but that they are dissatisfied with the work of the oncological surgeon. Some even feel mutilated by their doctor. Where their chest used to be, they see retracted scars that make their entire chest appear hollow, they see bumps, dents, excess ‘patches of skin’ and asymmetrical scars. “It’s a battlefield, I just don’t look at it.” It is difficult to imagine that flat women experience this this way, chairman Bert van Drunen of the Dutch Association for Plastic Surgery, he tells ‘Pointer’. ‘Flat’ is by definition mutilated. It’s just accepting whether or not you have breast(s). But what the result is, that is predictable and then you have to accept that it has become that way. There are many women who are at peace with that.’
‘Pointer’, Van Drunen speaks about the wish of patients without reconstruction to be operated on by a plastic surgeon, just like with breast reconstruction. The expectation is that it will pay more attention to aesthetics. The study shows that little attention is paid to this in the oncological surgeon’s office. A conversation in which breast cancer patients could exchange ideas with their doctor did not actually exist or had to be ‘claimed’. More than 85% of women who chose ‘flat’ had no say in the placement or shape of the scar. While there are indeed different options.
Regret
One in three former breast cancer patients who opted for a mastectomy without reconstruction did not feel supported by the doctor who operated on her. One in three women who had a reconstruction did not feel sufficiently informed about the risks of their operation. And 25% would have made a different choice if they had received different information from their doctor.
Several doctors tell ‘Pointer’ that in their consultation rooms they don’t actually see much regret among women who decided to live without breasts. ‘No, and if they already regret it, then a reconstruction is of course still possible later.’ says Caroline Drukker of the AVL.
‘Pointer’, Sunday November 19 at 7 p.m. at KRO-NCRV on NPO Radio 1.
2023-11-18 15:00:45
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