When I first learnt I had cancer in 2009, I couldn’t help but look up at the sky and ask the universe “Seriously… what’s next”?
Back then, I was caring for my daughter, who lives with Locked-in Syndrome, a condition of complete paralysis, and I was focused on her recovery at the time of my diagnosis. When I found a lump in my breast, the idea of having cancer didn’t even cross my mind. The lump I found was a rectangular shape and I thought to myself, surely cancerous lumps are circular - isn’t that what everyone thinks?
Turned out I had a unique sub-type of breast cancer called invasive pleomorphic lobular carcinoma of the right breast (IPLC). I had a right (breast) mastectomy in 2009. Seven years went by after my procedure and during this time, I didn’t consider breast reconstruction as my focus was always on taking care of my daughter. Years later, when the timing suited, I met with a Brisbane surgeon to consider my options. With the advent of new technologies, I decided it was time: I would undergo breast reconstruction.
While surgeons can be wonderful and informative (as mine was) they won’t know every question that’s on your mind. In fact, you’ll even have questions you didn’t know you needed answers to. While I felt prepared before my breast reconstruction, there are five things I still wish I knew ahead of time:
1. The drains… really drain.
Breast reconstruction is painful. Most people don’t know this, but after breast reconstruction surgery, some patients will have surgical ‘drains’ placed at the incision to help clear the wounds and prevent a block up of blood and fluids. I don’t know if the word ‘drain’ just didn’t register with me but, to my surprise, it was a real drain in every sense of the word. I had two real drains in my body connected to a removable storage bags - you need to empty the fluid and measure the amount. Managing this helps speed the recovery process, but expect this to be part of your recovery journey. Other people I spoke to found the drains quite confronting and they were difficult to conceal.
2. There will be normal redness that follows
Following my surgery, I was told by my surgeon to report any ‘redness’ on my breasts. If you’re wondering what ‘redness’ means - we’re in the same boat. I wasn’t given any indication on what sort of redness to look for and what was considered concerning, or not. It wasn’t until some redness appeared that I consulted the nurse as requested. Then I realized – some redness can be normal. Don’t overwhelm yourself thinking about this, just know that it’s important to clarify with your doctor or nurse what to expect and what to look for after your surgery.
3. Schedule downtime after the procedure.
Because the surgeons are a little removed from this side of the experience, it can be difficult to anticipate how your body will react after your breast reconstruction. Your body just went through a huge procedure– give yourself the recovery time you need. The drains can be limiting and movement is restricted for a few weeks after surgery to ensure proper healing. If you lead a busy, active lifestyle like me – make sure you are across what the recovery process entails and allow yourself enough downtime. You’ll be back at it in no time.
Breast reconstruction is honestly the best thing I have ever done for me. Pick what suits you, and your journey - but do your research and be informed.
4. Don’t be afraid to ask questions
Breast reconstruction can be daunting, but you can make the journey easier by being an informed patient, so remember to ask plenty of questions to your surgeon. For example: What type of reconstruction options are suitable for your situation? What new technologies are available? What sort of breast tissue expansion device should you choose? What will your breasts look like after the reconstruction?
These are all questions to ask your surgeon and nurses and will help you better understand what to expect. Don’t be afraid to ask questions: your surgeons are there to help you.
Breast reconstruction can be daunting, but you can make the journey easier by being an informed patient, so remember to ask plenty of questions to your surgeon.
5. Having private insurance increases your options.
On the public system note, I realized investing in private insurance was the best option for me. I’m aware it’s not something that may suit every individual financially, but if you’re able to do it – do it. When I met with my private surgeon, he introduced me to new techniques for the surgery that I noticed weren’t publicly available. Before my implants were put in, rather than use a saline tissue expander, I used AeroForm (a patient-controlled tissue expansion system); an option I didn’t even know existed before moving private. Moral of the story: if you’re able to go private – it’s worth the investment.
I’m now eight years’ cancer-free. While my life continues to be devoted to my daughter, breast reconstruction is honestly the best thing I have ever done for myself. Pick what suits you, and your journey - but do your research and be informed.
X Jane
