"Breast prosthesis appointment"

Following my recent mastectomy surgery, I received a follow-up appointment to be fitted with a prosthetic breast at University Hospital Wishaw.

My journey from investigations to diagnosis to surgery and eventually to the prosthetics team was very efficient with no waiting and wondering about next steps.  I felt very well supported, involved and informed until it reached the point of the prosthesis appointment.

I feel the environment of the prosthetic clinic was not conducive to feeling at all welcome or relaxed.  In fact, it was so cramped that my spouse who accompanied me couldn't even sit down.  The room consisted of an examination bed, small desk and chair and one single chair for the patient.  Otherwise in the room, it was stacked with long canvas boxes including some stacked on the examination bed.

The clinician was friendly, introduced themself and confirmed the reason for my appointment.  However, they did not take a moment to check in with me about how I was feeling (given the nature of the appointment I would have expected that).  Instead, immediately after the brief introduction, I was asked to undress. The clinician then explained that they were going to check that I had no excessive swelling which might impact on their continuing the fitting process.  They then asked me to put on the bra that I had brought with me and then without any explanation or preparation about how the appointment would proceed, they turned to the examination couch behind them and opened one of the stacked containers.

Inside the container there were a large number (I have no idea how many) of small boxes containing a range of different breast prosthesis.  The clinician looked through the box and selected one and turned back to face me suggesting I should try this one.

Having recently had my mastectomy, I had been utterly unprepared for being faced with what (to me) looked like a coffin full of breasts. You might think that this descriptor statement is a bit exaggerated, but let's think about someone who has had a limb amputation for a sec... are they led into a room filled with different sizes, shapes, tones etc. of limbs to choose from?  It's difficult to describe how I felt... humiliated and traumatised though would be a good starting point.

As the clinician turned back to ask me to try the selected prosthesis, I had turned away to face my spouse and was in total distress.  I could not continue the appointment.  Although the clinician seemed surprised, they did say in a sympathetic tone that it wasn't a problem and that they would make another appointment for me.  They accessed the system there and then, agreed another appointment and then they left the room to collect the printed appointment letter. I then got dressed.  

Whilst I understand that there will undoubtedly be space constraints for storage of prosthetics and that clinical/examination areas will necessarily be multi-purpose, I cannot emphasis the impact that this appointment has had. I know that I dealt really well and very pragmatically with my breast cancer diagnosis and the mastectomy surgery - not a single melt down!  I think that this is because the rest of the process was quite clearly trauma informed.

I think what would have made this a more bearable situation would be if the guidelines/standards recommended by Breast Cancer Now (BCN) website were followed.  NHS Lanarkshire advise patients to refer to this website for the most accurate information so I was definitely not expecting what happened at the appointment.  I have included below the BCN information about what to expect and what should happen at a breast prosthetics clinic for reference:

At the fitting

*The fitter will explain what will happen during the fitting and check you have a suitable bra.

*At your appointment you should be given:

A selection of sizes and styles of prostheses

Privacy

A large mirror and good light so you can see what the prosthesis looks like in your bra and with clothing over it. If you would prefer not to face the mirror, let your fitter know

Enough time for you to make your choice

*Your prosthesis should feel comfortable, give you a good shape and be a reasonable match to your skin tone.

In addition to all the points above, I think all clinicians should be trauma informed/trained.

It has taken me a number of weeks to be able to write this experience down and even in doing so today, I am still really upset, in fact tearful, at the telling of my story.

I have a further appointment coming up and really hope that the telling of my story makes a difference to my next experience.