Six weeks ago, at the age of 35 (for another week anyway!), I had a double mastectomy. My understanding is that this is sometimes called a bilateral mastectomy (meaning both sides) and also referred to as a contralateral mastectomy (where breast has cancer and the other is healthy). Regardless of the terminology, I had both breasts removed. This is my story and what I recall following diagnosis, in the lead up to surgery, and how I responded. Sorry it’s a little long – I have quite a bit to say!!
Diagnosis to surgery
I do like to be prepared and in control and, if I’m not, I feel unsettled. So, while I waited for my biopsy result I researched potential outcomes. It helped me to find out what answers I’d get to all the “what if” questions that I couldn’t stop entering my mind. When the breast clinic doctor called to tell me the biopsy results, I had already prepared myself for the outcome that it would be cancer and that I’d need a mastectomy. Although I hoped I was wrong, I had suspected this because of the Google search results for “what happens when breast cancer comes back in the same breast”. I discovered that a mastectomy would be required because radiotherapy (which I had following a lumpectomy last time) cannot usually be given to the same area twice. The doctor confirmed this but said I’d need to speak to the surgeon for more details.
The weeks following diagnosis and prior to surgery were a total whirlwind. There were a whole raft of decisions to make. These included options to remove the other ‘healthy’ breast during the same surgery and to undergo an immediate reconstruction (rather than delayed or potentially not at all). We also had to decide if we wanted to freeze eggs/embryos and if we should return home to the UK for treatment (and moral support of family and friends!). I could write reams on the lengthy discussions we had for each of these options but I’ll stick to the main points relating to surgery here.
It was emotionally draining but my husband and I wanted to understand all the possible outcomes so we could make informed decisions that we would not come to regret. I carried a file around and filled it with any info, forms and notes I took during the meetings. After a lot of thought, discussions and even a decision tree analysis (that’s the management consultant in me!) here’s what I decided for my surgery:
- Delayed reconstruction: despite the possibility of reconstruction in the same surgery, the option to delay meant a simpler procedure and thus lower risk of complication – which would be important if I needed chemotherapy (we had to wait for the pathology results following surgery to find out it was required/recommended).
- Mastectomy on both sides: primarily because I wanted to minimise the risk of a recurrence in future. As odd as it may sound, I also found the concept of symmetry less distressing. I was concerned about not having a ‘good side’ during recovery – particularly for lifting my daughter – but I felt that the long-term risk reduction was more important.
That period was busy. I knew I should have been resting but I couldn’t stop until I’d sorted as much as possible. I had the occasional emotional moment but a bit of a cry and a few deep breaths helped.
I started to tell friends the week before surgery, once decisions were made because I knew there would be a flurry of questions and I wanted to have a good understanding myself of everything before I answered.
I didn’t have much in the ‘boobie department’ to begin with, so it was no great physical loss to me, and I was glad to be rid of the cancer more than anything. However, I was not prepared for the psychological impact that seemed to catch up with me just before I went into surgery.
As I got called into theatre, I phoned my husband to let him know I was heading in. I’d been ok until that point but then I burst into tears. I wasn’t particularly emotional about the actual surgery but it was the general situation that choked me – the “why is this happening to me?”. I was still crying as I was being prepped for the imminent surgery on the other side of the theatre doors. My awesome surgeon came through and reassured me that she’d be worried if I wasn’t feeling emotional. She talked through everything with me and took time to explain where the incisions would be, drawing it on with a marker pen. I felt ready and took deep breaths to stay calm (my yogi-bear dad would have been proud) as I went through to the operating room.
The next thing I knew I was waking up, feeling pretty groggy but fine. I initially had bandages across my chest so I couldn’t see the wounds. They were removed a day later to reveal small steri strips which covered my scars. It took a while before I was ready to take a peak but it looked much better than I thought (I am pretty squeamish!)
Post-surgery I was very sleepy. I felt dizzy and sick from the drugs but this subsided after a while and when I stopped taking Endone, which I think was a bit strong for me.
I felt physically and emotionally fragile. I know this is a perfectly normal response to this sort of situation but it was so unlike me that I was overwhelmed by both my feelings and reaction.
This point was distressing. For me, it marked the start of my treatment and I could not hold back the tears. They were relentless! It felt like all the emotions that I’d been suppressing (or at least trying to) in the preceding weeks were let loose.
The picture is of me skyping my beautiful family. I’m smiling, happy to see them, but my eyes are puffy from all the crying and the look on the faces of my boys says they know I’m not ok. My daughter was happily distracted with her toys!
I was pleased my husband and kids came to visit me each day but on the third day in hospital I was feeling really down. I phoned to say I wasn’t sure it would a be good idea to visit as I wouldn’t be great company. Not realising I was on speakerphone, I heard my son shout out “mum, you’ll always be great company”. My heart melted 🙂
I can watch fictional gore on tele (even without Derek Shepherd, I still love Grey’s Anatomy) – but I’m not great with blood in real life and all the medical paraphernalia like tubes, needles, drains etc.
I was grossed out by the post-surgery drains. I was worried my two-year old daughter would pull on them (she just poked them a bit saying “what’s that mummy?” but they were actually quite secure!). They were so long (see picture!). When I explained how they worked to my son he said they were “cool but disgusting” – I think that’s a pretty accurate description!
Back home and healing
Returning home it wasn’t long before my spirits were boosted. The encouraging messages continued. And the gifts!! The little elephant my husband got me reminds me of the love and support he has given me. My son made a wonderful, thoughtful surprise (that took him an entire weekend to prepare). Beautiful flowers were delivered from family in the UK, friends (in the UK and Australia) and work (old and new). And cakes, biscuits, and homemade meals arrived on my doorstep too. I continue to be in awe of all the kindness and love.
I do have days when I feel down. I don’t look much different in my normal clothes but getting them on and off has been challenging at times. My husband had to do my hair while I couldn’t lift my arms so I had some interesting hair dos but I was happy when I regained control (before the chemo started anyway… I will cover this in another post that’s on its way!). These days are usually triggered by the way I look which may partly be a vanity thing but more because, looking at myself, I’m reminded of the general situation. But then they are followed by special time with family and I’m thankful for that. Who can be sad about a trip to the beach with people you love?
Looking back at this time, I found it really hard. I’m trying to be positive (which I think I am a lot of the time) but this is about me being true to my emotions and speaking from the heart. I think that is important because I need to face and deal with my feelings. I’m healing well physically (aside from a few minor complications, which I’m hoping the physio can help me resolve) but I think it will take me longer to heal emotionally. I’m getting there and have absolutely no idea how to thank everyone for all the love and support. For now, I’m sending big (virtual) hugs – love you all.