Saturday, 30 March 2019

Weekly Discussion Summary ~ Breast Cancer Surgery

Mastectomy - single or bilateral. Lumpectomy. Mammoplasty. Quadrantectomy. Reconstruction - immediate or delayed. Implant. Skin-sparing. Nipple-sparing.

These are just a few of the words used to describe our surgeries to remove breast cancer, and, by those of us who have opted to have reconstruction and in this week’s discussion, we explored the impact of breast surgery on our self-esteem and self-image.

When we are first diagnosed with breast cancer, we are in shock, emotionally traumatised and many of us reflected that we had found it hard to think clearly about the surgical options that may be open to us. When we hear that treatment may mean removing one or both breasts, or removing part of one or both breasts, understandably, our focus is to rid our bodies of the cancer. Many of us found it difficult to make decisions about whether we wanted immediate reconstruction or balancing surgery as we lack confidence and the knowledge to do so. We shared that we had often made decisions without fully appreciating the risks, or, we chose to delay reconstruction without realising that we may face a long wait to get this done later. We are vulnerable and frightened.

For many - but not all - of us, our breasts are a huge part of what makes us feel female and sexual beings. Some of us have fed our children from our breasts, some of us feel deep grief that we will be unable to breast feed our future babies. 

For some of us, breasts are an integral part of our sexuality, both in terms of how we look and how we feel. We mourn the loss of, or the changes, to our breasts. Even when reconstruction is a success, we know that we now have “false” breasts. We may feel less womanly, less sexual and less confident in our appearance or our sense of self. Some of us hide our bodies, even when others would be unlikely to notice what we see as imperfections and imbalances. 

Some of us choose to remain “flat”  - that is to say we do not have a reconstruction. Sometimes, we wear a prosthesis, sometimes not. 

Irrespective of our surgery, our body image, our self-confidence, is affected. We have to adjust to fundamental changes, sometimes with limited choices. Intimacy following breast cancer surgery is a subject in itself, and it is, for many of us, tied intrinsically to how we feel about our new breasts. The impact on us may be different, depending on whether we are single or in a relationship, and if in a relationship, whether our partners are supportive.

Those of us at the start of their treatment, perhaps awaiting surgery, described fear and sadness at the prospect of losing their breasts, and for some, hopelessness at the thought of ever being intimate again after surgery. Other women later down the line offered reassurance, that we have healed, that we have been able to come to terms with loss, including the loss of our breasts or part of them. 

Some of us do not associate our breasts with our sexuality. Some of us find it hard to have only one breast and feel that being asymmetrical is a struggle. We feel very strongly that the choice to have a breast removed and to remain flat should be straightforward and respected. This is particularly pertinent for women who have had a single mastectomy and for whom surgery to balance them out ie to remove the other breast and achieve symmetry is not given the same weight as reconstruction. This surgery is not offered routinely and is only offered after counselling. Women reported feeling belittled or dismissed when they either declined reconstructive surgery, or requested a mastectomy to achieve symmetry.  Such a reluctance may push us into going for reconstruction as it is common to seek balance rather than lopsidedness. We are angry that doctors presume to know what we want and we want to be supported in making our own decision. It also seems ridiculous that a straightforward mastectomy is far more cost effective and has less risk of complications than reconstruction surgery, and yet so many surgeons are reluctant to perform a mastectomy on a healthy breast in favour of a complex, riskier reconstruction.

Many of us had experienced complications following reconstruction, including wounds that are slow to heal, infections, unsightly scars and a few of us reported operations that fail completely and reconstructions have to be removed or re-done. 

Reconstruction can sometimes lead to ongoing discomfort and pain. 

Reconstruction can be done from our own body tissue or with implants, and the operation does come with risks. It often involves several surgeries, even when it goes smoothly, and can be a long drawn out process, which is disruptive to our lives. On the positive side, many of us had experienced successful reconstruction, often at the same time as mastectomy or lumpectomy, with no complications and an excellent outcome. 

The degree of our contentment with reconstructed breasts varies: some of us are very happy with our new breasts but many also find them uncomfortable, almost alien. They can feel hard and heavy, and have no feeling in them. Some of us regret having reconstruction and wish we had stayed flat. Some of us would like to have reconstruction but are unable to due to medical issues. 

The decision not to have more surgery is one that many of us make, including sometimes but not always those of us with secondary breast cancer. We feel we have spent sufficient time “under the knife” and our priorities have shifted so we prefer to avoid the demands of surgery and would rather retain our lopsidedness or flatness. For others, the decision to remain flat is simply a preference and many of us are extremely comfortable with this. Modern prostheses are quite realistic and comfortable for many of us. For some of us, failed reconstruction (often after several painful attempts and subsequent complications) means that remaining flat is our only option. Learning to accept this isn’t always easy, but we find the inner strength and determination to do so. There are also reasons why wearing a prosthesis is impossible, due to pain from scarring or lymphoedema. 

What became clear from our discussion is how rich and varied our views are, that we want to feel in control of our bodies and the decisions made about breast surgery. We want to be informed and consulted, not rushed into decisions we might later regret. We are grateful to have our cancer treated, the tumours removed, but we also want our psychological health to be considered. We want to feel we are individuals and that our views are respected and supported, our feelings validated - what happens in the operating theatre changes far more than our physical appearance. 

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a private message via Facebook.


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