In 1996, Uta B. had a rock-hard feeling in her left breast. At that time she was 35 years old. Her gynecologist told her not to worry and that she was far too young to have breast cancer. She went to the mammogram – there she waited in the room where the picture of her breast was on the X-ray box. The doctor came into the room without looking, just looked at the picture and said to Uta B. that the tumor was too big and the breast had to be removed. She was never properly educated or prepared for what she would look like with only one breast. “The surgeon was proud of her first operation with a breast removal. She loved the scar. I fell over after the first look in the mirror because my eyes went black – I didn’t expect that. The sight was shocking. “
It was only after her breast was removed that she found out that she still had to undergo chemotherapy and radiation. For a long time, Uta B. lived with epitheses that she put in her bra. “But you always wonder if the prosthesis will hold up or if it will slip. I couldn’t wear a blouse with a real décolleté anymore either.” In her work as an educator, one day she was helping the children tie their shoes when their epithesis slipped and became visible. One of the children asked her what that was. “Hearing that and not having a proper chest felt cruel.” Uta B. says: “The thought of finally having a real breast again haunted me every day.”
Women’s self-help cancer has been supporting cancer patients for almost 50 years. The focus of the self-help organization is on breast cancer and gynecological cancers. Cancer patients are supported here after the diagnosis and can find out all about the disease. There are local groups all over Germany.
But for a long time Uta B. believed that breast reconstruction was only possible with silicone – which she does not want. Today, in the vast majority of cases, breast cancer patients can be offered breast reconstruction, reports Dr. Lisa Steinhilper, specialist in gynecology and obstetrics and senior physician in the clinic for gynecology at the University Hospital Hamburg-Eppendorf (UKE). “A distinction is made between autologous reconstructions (use of the patient’s own tissue) and heterologous reconstructions (implant-based). A combination of both methods may also be necessary. A reconstruction can be unilateral, i.e. as part of the removal of the mammary gland, or bilateral, i.e. after the therapy has been completed , take place. Each reconstruction is preceded by an individual consultation including all relevant aspects.”
During the course of her illness, Uta B. became involved in self-help groups. Eventually founds a cancer self-help group in Brandenburg and still works there today on the board. The women can be brought up to date medically. In 2007, Uta B. heard a lecture about breast reconstruction with autologous tissue for the first time. “It was mine – I knew that,” says Uta B. It took another three years before she was 100 percent convinced of the operation. Her husband and colleagues would not have understood – they were afraid that something could happen to Uta B. during the operation. But this desire grew in her.
Reconstruction with autologous tissue leads to the greatest satisfaction among patients in the long term, says Lisa Steinhilper. “With this method, autologous tissue is ‘transplanted’ from the stomach, back or thighs to the chest wall. These operations are complex and the occurrence of early complications is more frequent. Additional scars also occur in other parts of the body. The advantages of the method are the natural appearance and behavior of the ‘transplanted’ tissue, for example the acceptance of body temperature and the changes in weight fluctuations. Even after radiation therapy has taken place, very good results can be achieved with autologous tissue.” However, this method is not appropriate in every case.
59-year-old Christiane H. was 51 when she found out about her breast cancer. “The doctors at the time had the good news for me that I wasn’t dying and the bad news that I had to have a breast removed. It was a consolation for me that they told me straight away about a breast reconstruction with an implant.” It was clear to her from day one of the diagnosis that she wanted to have her breast rebuilt. “I couldn’t imagine for a second that I would put such a silicone part in my bra or swimsuit. For me there was no question.” At the thought of having a breast removed, Christiane H. shot the images she saw more than 30 years ago while working as a nurse: “The women were really mutilated back then.” But her treatment didn’t go as planned: the breast removal was not enough. Christiane H. needed chemotherapy and radiation.
Due to the radiation, Christiane H. was no longer able to build up her breasts with an implant. Tissue is removed from her abdomen in order to form her a second breast in an operation. “I knew that for a few days after the surgery I wouldn’t be able to get up and it would be exhausting. It wasn’t that bad for me because I had breasts again – I was just one step further.”
Christiane H. had to spend one night in the intensive care unit after the operation in Berlin’s Spandau district. Every half hour, a device was used to monitor whether the breast was supplied with blood, because the vessels had to be connected and the blood flow showed that the procedure had been successful. After four days she was allowed to get up again and after ten days she was able to leave the hospital with her new breast.
Whether the complex breast reconstruction procedure can be carried out depends on individual risk factors, says Hamburg gynecologist Lisa Steinhilper. “These include, for example, risk factors such as the presence of diabetes mellitus, nicotine consumption, obesity, arteriosclerosis, serious previous and secondary diseases, the use of certain medications (e.g. blood thinners) and advanced age. Radiotherapy in the breast area is also a relevant risk factor. If there are several risk factors, the reconstruction should be reconsidered or the benefit-risk ratio should be explained in detail.”
According to estimates by the Robert Koch Institute, around 66,800 women are diagnosed with breast cancer every year. For women, it is the most common type of cancer. Young people are also increasingly affected. The German Cancer Society speaks of over 18,000 women dying of breast cancer every year. Men can also get breast cancer, with them there are around 770 new cases each year. The breast cancer month of October draws attention to the situation of patients.
After her negative experiences with doctors during breast cancer diagnosis and treatment as well as the fear of a new operation, it took Uta B. time to decide on the procedure. But she never regretted her decision: “When I woke up from the anesthetic, the doctor sat by my bed and I was allowed to touch my new left breast – and it was a warm feeling. Tears came to my eyes because I hadn’t experienced for 15 years,” says Uta B.. An experience that she will never forget in her life. After the operation, she had a completely different self-confidence. “No one sees the breast, but people feel it. At work they told me that I was a new person.”
Christiane H. is also happy with her new breast. But three weeks after her operation, she received a message that knocked the rug out from under her feet: bone metastases. “It felt like going out of the house in the summer and standing in the middle of the snow.” Christiane H. is happy today that she received this news only after the breast reconstruction. “I don’t know if I would have decided to have the operation after this diagnosis.” But Christiane H. had a new problem with the metastases: After 36 months of illness, she was no longer entitled to sick pay. She had to make ends meet with unemployment benefits and received a disability pension because she would not have been able to continue the physically demanding work as a nurse and curative teacher anyway. “I’ve worked my whole life and as a result I had a lot of social anxiety.”
Although a breast reconstruction after breast cancer is covered by the statutory health insurance, the health insurance companies of the two women did not want to pay the costs for the reproduction of the nipple. Uta B. had already verbally agreed to a medical nipple tattoo when the health insurance initially refused to cover the costs. But in the end, the health insurance also paid for the nipple tattoo. It was different for Christiane H.. Her health insurance only gave her a subsidy of 200 euros for the medical tattoo, which cost 3000 euros. Enormous costs – which Christiane H., as a new pensioner, could not bear. But the Berliner is a real doer: she wrote to a tattoo studio. And so her breast isn’t adorned with a nipple, but with a butterfly and a tendril. With her style and her knowledge, she helps other women who have been diagnosed with breast cancer in the women’s cancer self-help group in Berlin.
Nowadays, a reconstruction of the nipple is also possible with autologous tissue. This can be taken from the opposite nipple, groin or eyelid, for example, explains gynecologist Lisa Steinhilper.
Your breasts are no longer what they were before breast cancer, but Uta B. and Christiane H. are happy that they have two breasts again. “She looks different with the butterfly, but it was on my chest from day one,” Christiane H. describes the feeling. Cancer changed her. She is grateful for every year that is given to her. Christiane H. has to be treated for the rest of her life due to the metastases in her bones. She doesn’t know how long that will be. But in the end nobody knows that, says the Berliner.
