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.
Immediate reconstruction… The goal for me, I told myself: “I must save my own skin, my life. The esthetics, we’ll think about it later. But right now, it is my treatments, it is saving my own skin…” I am trying to survive this and will see after.
Interviewer: It is a question of priority?
It’s me… For me, I am pragmatic… It is a question of priority. The esthetics will come after. Frankly, I didn’t know how I was going to react. I didn’t know. And I don’t know because I am telling myself that some people are living without arms, legs, without… And the breast, I can… we can live without… We can live without it. I was more scared of the reconstruction because I didn’t know if I was going to have radiotherapy, knowing that I had something inside me… I had many questions because… But even the reconstruction it is still two surgeries. Well it was… Even if it was immediate but I had to be operated a second time. Am I ready to undergo this and go every week, go to inflate the expander that they were going to install? What… I didn’t have enough strength for all this. So, I told myself, as well… I must first save my life and then we will think about the esthetics later and knowing that I would have to undergo another surgery; because I must have the ovaries and the fallopian tubes removed because I am a carrier of the Hubert gene.
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.
No. In my case, in the case of inflammatory cancer, they tell us to wait at least one or two years after the radiotherapy. And in the case of inflammatory cancer, they must remove as much skin as possible because in this case, the skin is affected, which is not necessarily the case of other forms of breast cancer.
Interviewer: Do you want to have a reconstruction after one or two years or you still don’t know?
But right now, I don’t want to have the reconstruction. I found the surgery so difficult and I was told that reconstruction is an even bigger operation. So right now, I don’t have the intention to have it. However, what would, what I liked, and this was confirmed by my surgeon, if let’s say next year or in two years I am not ready, but in five years I change my mind, it will never be too late for me…
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).
Because that’s a huge thing that I think patients need to understand and have a lot more information in terms of what’s available out there. There are so many products now, mastectomy products that I didn’t know, that I wasn’t aware that they were available.
Interviewer: Prosthesis you mean?
Prosthetics. There’s a company here in the city that actually does light weight prosthetics and they breathe a lot better. They could actually take a mold of your breasts before you have surgery and then they take pictures so you have the same colour. Let’s say you’re doing one then they’ll have the exact same size for the other side when you actually have your surgery done. And so the lady that I was walking through the journey with just recently, she chose to go that way. So I went with her and it’s really quite cool. Now she has the option of having prosthetics made to match her other breast if she chooses not to remove her other breast so it’ll be the same size. They can do the same colour and they have incredible ability to do these techniques.
They also do the areola and the nipple area. If you do reconstruction you can just have that made and put on so that if you’re wearing a T-shirt or something like that, you can have that. So that’s, there’s a lot of options now where it wasn’t available before. And I think it’s a very personal decision in terms of “Can you wake up in the morning and see those scars and being flat?” I was incredibly chesty and I had a very big bust when I was diagnosed and I, me personally, the idea of being flat was just foreign to me. So I, that’s again one of the reasons why I chose reconstruction.
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.
When I first did reconstruction, I did…Okay! This is a real boob, this one has a fake one and I’m wearing a little paddy here (pointing at her chest). When you get a mastectomy, there’s nothing there. It’s just like a weird warped looking scar. It had a weird little cleave in it and it was just completely flat. And then, they put a tissue expander inside.
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.
I ended up with fat necrosis, probably a week to 10 days post-op(eration) and I know when I had my surgery… If you’re not familiar with a DIEP flap* (Deep Inferior Epigastric Perforator Artery Flap), it’s a free flap.
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.
And then I thought well okay there must be something better and I looked in the (name university) library online and found the most recent textbook on breast surgery. At the very end of the chapter on mastectomy there was a short section on this new thing called the Goldiloks mastectomy, which was exactly what I was looking for.
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.
I’ve had them done a few times. The lady that does it is just awesome. She does it… because I didn’t have another one to look at, she looked at the inside of my lip, at the pigment there and what it looked like, to see what colour your… because apparently your areola is generally about the same colour as the inside of your lip, I guess. She went quite light at first and they almost went to skin colour. So the last time I went, she ended up doing it like really, really, really dark. It’s been 2 years now and they’re… I’m going to have to get them done again. But they look quite real, she does it with different colours and spots. For some people that didn’t even have the nipple made, she can tattoo on shading so that it looks like there’s the nipple there.
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 1 surgery but more often they had to undergo several surgeries to get the desired result.
He sent me to another doctor. Most of them are plastic surgeons and because any time you have cancer, it’s all done here under Medicare, so it’s free. You can choose any plastic surgeon you want. So I went to see the doctor he recommended and he looked at me. He looked at my breast and I don’t even think he really touched it.
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.
Well I had done a lot of research because they’re, when they tell you “You have breast cancer and you need to have a mastectomy.” Well that’s it. But then when you decide to have reconstructive surgery, there’s so many. You can have nothing done, or you can have this done, there’s four or five different things you can have done. So, of course, the decision’s all in your hands.
Actually I went back and I looked at my Facebook page. All the pictures I’d put up of me doing stuff and in no picture did my breasts figure as an important part of what I was doing. So I thought well, why not just remove the breasts because that seems like the safest thing to do.
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.
So we’re going to go into reconstruction. So as I said, the first, I guess my first clue to this plastic surgeon that I originally had should have been that he asked why I was here. Obviously he didn’t read my file or anything. I knew nothing about plastic surgery and I really hadn’t had time to really research reconstruction. So he made me feel like it was my responsibility to do all this reconstruction. He really didn’t give me sound options or even viable options. He sort of pushed me into the tissue expanders which is you put a plastic container with a valve underneath your chest muscle to expand it and expand the skin. They can then take those out and put in implants. And you go in for injections every week. Again, not knowing anything, he really over expanded me. I went in for 17 injections and I guess that’s way past where they do it and so that stuff was fine, the injections were fine but he just wouldn’t communicate with me. And there was one point where I had to bring a friend in, to stand at the door. I had my hands over the port sort of things that were over your chest. So I had my hands over my chest, I wouldn’t let him inject me with the saline, because that’s all he needed to do, until he answered my questions. Because he’d come in and then I’d try to ask him a question and he goes “Oh, oh, oh,” And he’d inject and then he’d take off. That’s another trick, put your hands over the ports and they can’t move. And block the door.