Most women have time to decide on reconstruction options and first undergo their breast cancer treatments (chemotherapy, radiation etc). Some women emphasized the importance of waiting for the surgery and taking your time to make this decision after treatment; reconstruction can even be done many years after treatment.
For some women though, a key decision early in their treatment pathway was whether or not to have breast reconstruction surgery after their lumpectomy or mastectomy. Some women could opt for immediate reconstruction which could be done during surgery following the mastectomy. Samantha and Nalie underwent this procedure and described feeling less of a loss as they already had some chest ‘volume’ after the mastectomy. Others explained that they sought immediate reconstruction to combine surgeries and thereby save an additional surgery later on.
Some women mentioned the disadvantages of immediate reconstruction from their experiences. Shelley experienced serious complications which caused a 10-week delay in the start of her chemotherapy.
Choosing no reconstruction
Women had different reasons for choosing not to have reconstruction after their mastectomy. They were for example concerned about the risks of complications and infection from multiple surgeries. May-Lie, Tina and others did not feel physically or mentally ready for more surgery. Others felt they didn’t want to take the additional time for more surgery and recovery; some were uncertain about whether it was covered by insurance; others factored in their age as a reason for deciding against reconstruction. A few of the women we spoke with could not have reconstruction due to factors related to their illness. Christa, for example, had to get spots removed from her liver before she could think about reconstruction and Iceni, had too much tissue damage caused by the radiation.
Some, but not all, women used prostheses – a matter of personal preference. Many women felt that they could be irritating, were too hot or too heavy, that they moved around too much, and certain clothing, like V-necks, could not be worn anymore. Specialized mastectomy bras are more expensive than regular bras and some women could not afford them; they are not covered under public insurance plans in every province. (You can read more about this in Managing within the health care system).
Lorna wears her prosthesis all the time, sometimes with a little lace bra so that it looks like she is wearing a camisole.
Different women had different types of reasons for choosing to have reconstruction. Younger women seemed to have greater preference for surgery; some women found it difficult to be flat-chested and some hoped to have nice breasts again. They spoke about several different kinds of reconstruction, e.g.: implants, a DIEP or TRAM flap reconstruction, a latissimus dorsi reconstruction, a breast reduction on the healthy breast, and a Goldilocks mastectomy.
Implants required two steps – an initial surgery to place skin expanders on their chest, and then a second surgery to replace these with implants. Women had different reactions to the procedure and the results. One advantage was the shorter surgery time overall.
The disadvantages included negative feelings about having a foreign element in their body, the need to change implants every 10 years, the risk of the implant bursting, and the need for another surgery to remove the expanders. Jocelyn and Kathryn found the expansion process after placing the implant to be painful. Shelley was surprised about the tightness around her torso after the intervention.
TRAM and DIEP procedures
With a TRAM flap, pieces of skin, muscle and fat and blood vessels are moved from the belly to the chest, and along with a piece of back muscle (from the latissimus dorsi muscle). In a DIEP reconstruction, no muscle is cut or removed but a piece of skin is used to craft the breast. Women who opted for this kind of procedure, appreciated that the breast was crafted from their own skin and that it had a natural look. Gaye felt very happy with the result and described the natural look of the breast.
Isla, however, said: "if you do the TRAM you’re really losing your stomach muscles, well they’re handy right?" The procedure is long, and Shelley described having a scar from hip to hip which required a long recovery. Christa, who underwent a latissimus dorsi flap, says that the scarring on her back feels like a rope around her trunk and that she prefers not to wear bras anymore.
Although rare, some complications were mentioned. Deann, for instance, developed fat necrosis post-surgery, and Shelley had a blood disorder which had not been detected before; eventually her breasts had to be removed due to a necrosis. Shelley and Sirkka both underwent further surgery after the DIEP and the TRAM flap did not work for them. They have implants now.
Patricia's operated breast could not be reconstructed although she was able to have a reduction on the healthy breast. Laurie researched options and found the ‘Goldilocks mastectomy’, where healthy remaining skin flaps are used to create smaller breasts during a single surgery. She presented this idea in a PowerPoint presentation to her surgeon, and convinced him to try this procedure for the first time in his life. See here to learn more about the Goldilocks procedure.
Creation of nipples and aureole
After reconstruction, it is possible to create a nipple and get a tattoo to re-create the aureole. Not all women opted for this, feeling they didn’t want another procedure or that it was not needed. Gaye’s tattoo was not too great, and she didn't return for another intervention. Sirkka didn't want to get a tattoo but her doctor advised her to consider it, given their experience was that so many women felt much better after the tattoo.
Decision-making and reflections on results
Women were highly varied in their decision-making and in their feelings post-surgery. Women who didn't experience any surprises or complications were generally satisfied with the results and thought the new breast looked good or at least acceptable. Shelley described being happy with her surgery, after waiting two years without reconstruction, because she no longer had hollows on her chest. She wore a bathing suit for the first time in three years. Most women mentioned some disadvantages of reconstruction. They spoke about differences between expectations and the actual result, the consequences of the complications, and the importance of having a good surgeon. Debbra and Sirkka described being unhappy with the results and felt that the results were different from what they expected. It is important to keep in mind that women described undergoing sometimes only one surgery but more often they had to undergo several surgeries to get the desired result.
Even though rare, Patricia had a hematoma after the operation. She now has little lumps on her breast which she thought might be breast cancer. She went through some scary moments with appointments for additional testing. She was advised by her doctor to not do more reconstructions. Women expressed the importance of being presented with the different options and risks and permitting time for decision-making.
Sirkka selected her own surgeon and opted for a TRAM flap, but was not told that a mesh would be placed in her body as part of the procedure. She wished that she had been told about this; when she noticed a lump in her belly, a biopsy was done through the mesh (something that she learned later should not have been done) causing a serious infection. Debbra described how every procedure has its own risks and benefits and how important it is to ask questions or get a second opinion if that can help you.
Challenging relationships with health care team
Gaye and Debbra had a surgeon who was rude to them; Gaye decided to find a different surgeon who was more kind and attentive. Debbra felt pushed in opting for implants. She did not feel happy with the results and later thought she should have responded to the red flags she felt with regards to the surgeon's behavior.