I wish someone told me …

By | October 4, 2016

Lucinda: “I wish someone told me more about how my reconstructed breasts would look after surgery. I wish I knew that when I flexed my muscles my breasts would move sideways leaving a flat gap between them. It seem so unnatural. I wish someone told me that when I exercise they would move this way.

Lucinda: “I was at a conference last week and I learned that there is a name for this. It is called I was surprised to learn there is a name for this. It is called ‘window shading‘. It is common enough that they have given it a name, and yet no one told me.”

Surgeon: “When would you have wanted to be told?”

I was having a conversation with my friend Lucinda yesterday. We were talking about information overload, but also the desire to know more about the potential issues/complications with our reconstruction surgeries.

Having done neo-adjuvant chemotherapy, I had a lot of time to research my surgery. I learning a lot about possible side effects not from the literature, but rather from participating in online support groups (e.g. there is a DIEP flap Facebook group). Listening to the stories of other women helped me better understand the real side effects – not just the one or two ones that the doctors inform you about.

When patients are doing surgeries that involve immediate reconstruction, they are usually still mentally coping with having been told you have cancer. In some cases you only have a week or two (or less) to make a decision about the type of surgery you want. You are overwhelmed with information about cancer itself, and yet need to decide what surgical options are best for you. It is overwhelming at best.

I’ve helped a few women through their early journeys in treatment. I have given ‘the talk’ a few times. The talk that I give is about how breast cancer metastasizes and what you really need to look for / worry about. I find that doctors don’t give enough detail. They tell you that you are now cancer free (in remission) and only give you a vague idea of what symptoms you should be looking for. After that, every ache or pain scares you. I should know, I’ve gone through many scares. So now I help educate women about what it looks like and what warrants worry and what doesn’t. But I also need to wait until they are ready. When you are making chemotherapy or surgery decisions you are not ready to hear about the next steps. You are still dealing with the now. But there comes a time when you need more information–a time when you need to know more about the longer term impacts of the disease you are living with. I know when the time is right because I develop a relationship with these women. I know when they are struggling with anxiety largely because they lack information rather than the anxiety related to dealing with diagnosis (it looks different). It is when that anxiety shifts from the present to the future, that is when I give ‘the talk’.

The surgeon asks a good question. When is it appropriate to bring up the different possible side effects? When would you like to know? And my question is, when are you ready for ‘the talk’?

Feature image public domain via Pixabay.

One thought on “I wish someone told me …

  1. Alene Nitzky

    Becky this is such an important issue. Anxiety and lack of information are very costly, in terms of exacerbating the stress associated with having cancer and putting people at risk of missing important clues that could help them manage their health going forward. We put too much of our resources into the outrageous costs associated with treatment, so that there is little left over to help people improve function, reduce symptoms, and improve quality of life after treatment.

    Reply

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