This year more than 15000 Australian women will receive a breast cancer diagnosis and around 6000 of them will have one or both breasts surgically removed. After their mastectomy only one in ten will have reconstructive surgery.
In America one in two will have a reconstruction and in the U.K. it’s one in five.
After surgeons took my breast I swore I would never have a reconstruction, that was until the day I was at physio and I was asked if I’d been massaging my scar line.
SAY WHAT? As if I was going to massage the raw and painful scar! She explained that if I wanted reconstruction it would be beneficial to massage it and pull it away from the chest wall to stop adhering. Nuh uh, no way! I wasn’t going through more surgery and I certainly wasn’t going through reconstructions. My physio curled her lips into a smile and said “that’s what you all say’.
Fast forward a couple of years and eight surgeries later, I’m now proudly sporting two new boobs made from my back by incredibly talented surgeons.
So what changed? Well cancer is a journey, I knooooow there’s that freakin word, but I gotta say until I can find a better word ‘Journey’ it is.
Breast cancer is a rollercoaster ride of appointments, fear, weakness and the unknown and somewhere along the way all the negative was replaced with strength, will, pride and optimism. For me it was around the half way mark of chemo that my mindset changed and I had this ‘Aha’ moment that I might not die. Instead I realized that this shit they were pumping into me just might save my life, yeah….I was going to live.
It didn’t matter how long I lived for as long as I truly lived and made the most of my time. So mid- way through eighteen rounds of chemo I started thinking I might like to have a reconstruction. I didn’t like my prosthesis and I didn’t like not being able to wear the clothes I wanted to. I didn’t like looking down at my barren chest and thinking “I have cancer”.
Surgeons carved up my chest and my breast went to research, then radiotherapy seared my skin red raw. A month after radiotherapy was done the surgeons removed my ‘port’ and an appointment was made to see a plastic surgeon. I was diagnosed in September 2012 and in late August 2013 I had my first appointment with the plastic surgeon at the public hospital I was being treated at.
I met with my plastic surgeon every month for three months before I gave him the green light, he would discuss my options and tell me the risks and I would head home to research and digest the information.
I also met with my breast surgeons who gave me the green light to have my other breast removed and eventually a surgery date was booked for March 2014…for the first part of my reconstruction surgeries. See I wrote plural there. Yeah, it’s a long process!
People often ask me why I had my other breast removed. I chose that path as it was my original wish waaay back in the beginning, I had wanted both removed but the surgeons were hesitant. They knew I needed chemo and they also knew that a double mastectomy meant a longer healing time and double the chance of complications so recommended just a single mastectomy. I was cool with that at the time because I trusted them and I was of course shit scared.
Down the track, and every single day I would shower and look down at my breast that was left hanging on its own and wonder when it would turn on me. Was this remaining breast going to try to kill me too? I wanted it gone for future proofing my health and I also wanted it gone for vanity. Why would I want one reconstructed breast and one that been on my body for a very long time that was feeling the pull of gravity? I wanted them both to look as similar as possible.
Here’s the thing though, the doctors like to keep you in the dark a little. They don’t like to tell you all the gory details and after having my surgeries I can kinda understand why. Not all breast reconstructions are the same and recovery is an issue. There are a few different types of reconstructions available and they won’t all suit everyone and not everyone will be a suitable candidate for a reconstruction. Yup that’s right, the choice is snatched away from some women. Things like age, weight, skin condition, treatment undertaken and recovery all come into play.
I was young with time to recuperate but a few things came into play like my damaged radiotherapy skin, my gorgeous stretch marks on my tum (rendering that skin useless) and my weight. The only option my surgeon would consider was a bilateral Latissimus Dorsi reconstruction…it’s big words because it’s a ‘bloody big surgery’. Put simply two surgical teams would be involved, one to do the mastectomy and one to do the reconstruction.
It’s taking tissue and fat from your back and transplanting them to your chest, oh they also take your Latissimus Dorsi muscles and tunnel them through and do fancy stuff to create muscles on your chest.
While they’re in there they pop in a tissue expander which is like a balloon that is later injected every couple of weeks with saline to stretch your skin. Once it’s stretched enough (or to capacity) it’s removed and exchanged for implants. Then it’s time for nipples.
Reconstructions are not for the faint hearted, which is one of the reasons so few women have them. After all a breast cancer patient goes through it just feels impossible to face any more surgery…any more intervention.
For some women their choice is influenced by time to recuperate and whether they have support or can afford to take the time away from work. For some it’s financial, private surgery is expensive. You can have your surgery done publicly (like me) but depending on the state you live in the wait times can differ. Rural patients face even greater disadvantages and it can all feel overwhelming and just too much. There’s a lot to consider when considering a reconstruction.
The other thing to consider is reconstructed breasts look and feel very, very different to real breasts. I was hyper aware of this and prepared, but I meet many women who feel disappointed their breasts aren’t more like some of the pictures they see on the internet of perky boobs.
If you have the opportunity to ‘check out’ some actual reconstructed breasts, take it. I had a shop assistant eager to show me hers and I gotta say while I was a little shocked at some of the scarring I was also super impressed, seeing hers sealed the deal for me. I had seen some absolute shockers on the internet that left me worried about what I could end up with but after seeing some in the flesh it settled my fears.
I’m going to leave the details of my reconstruction for another post, today it’s about how I came to my decision, what’s at play and why it’s important to be informed. It’s ok not to reconstruct, it’s a good idea to shop around and you don’t have to make up your mind straight away. You can wait years before you make a decision but if you’re going public it may pay to get your name down quickly.
For the record I’m pleased I did reconstruct because these days I look down at my cleavage and say “I HAD cancer”…that right there makes it all worth it.
Thanks for sharing Jenni.
I do consider it for a few minutes at random times. i was diagnosed in June 2012 and had bilateral. My surgeon told me up front – i’d be a poor candidate for reconstrcution and I was happy with that. I don’t wear protheses much either, they are uncomofrtable.
Since I have numerous other unrelated surgeries I doubt I’ll ever change my mind. I’m happy.
It’s such a personal decision Trish and there’s no right or wrong choice. You’re right too some women aren’t candidates at all and some are poor candidates and really need to weigh up all their options. We were diagnosed in the same year. Hope you’re doing well x
Gah – can’t see to spell properly today .
I feel like I’m a step behind you chasing my end goal… I too hate my prosthesis, hate choosing clothing and am constantly reminded by the mirror that my left reamaining breast may turn on me at anytime… I can’t wait to dress normally and at least look like me from the outside in. Cancer is not kind… and reconstruction scares me… But I’m soooo ready. Thanks for sharing Jen. Xx
Not long now for you Michelle and I reckon you’ll have better options to choose from re surgery. You’ve been amazing throughout you cancer journey I’ve no doubt you’ll nail it 🙂
Thanks for this post, mind you I have found all of them so relevant and find myself nodding away! I only had my mastectomy 4 weeks ago but at the time I told my surgeon I would have a reconstruction. I still have a wait as I have just started radiotherapy but it is still something that I want to do as soon as I can.
Thanks Tracey, once radio is done get booked into your plastic surgeon so you can start the ball rolling. Good luck ?
Thank you for this. When I had my left breast removed 15 years ago I had already had 3 lumpectomies which had not achieved clear margins. Somehow the thought of more surgery was not the slightest attractive, and I was pretty sure I would need to use the tissue from my back, as you did. To be honest, the recovery from the reconstruction seemed as if it would be worse than from the mastectomy. With a job I needed to get back to, and happily married and not super disgusted by my body in general, I chose not to pursue it as an option. Again, thank you – maybe I’ll investigate once I retire.
Lyn for me the mastectomy was a walk in the park compared to reconstruction. All surgeries and recoveries are different, be informed and be prepared. Xx
Thanks for this information. I had a bilateral surgery on October 22,2014. I have decided not to have reconstruction surgery. If I were younger, I might consider. But I am a widower it will be 2 years october 30,2014. And I just do not feel like I need to.
It’s such a personal choice Roxie and we’re all at different stages in life. It’s important women do what’s best for them. Wishing you good health lovely x
From the moment I found out I had breast cancer I had already made my mind up that I wanted both breasts removed and reconstruction. There wasn’t even a hesitation or second thought about it. I had just turned 36. I didn’t want to worry about it reoccurring, I wanted to reduce the chance as much as I could and I wanted symmetry. So two new breasts for me! I have just had the reconstruction with expander bags two weeks ago. Yes I’m still in pain but it’s getting better and so will the movement. It just takes time and it’s hard when you’re impatient like me!
Glad to read you’re doing well Theresa x
thankyou jen! I make myself read these realities and it blows me away everytime!
amazed by you and the women who have to go through such torture on every level of their being!
my very best to all of them/you! … much love m:)X
Thankyou for caring Merilyn x
Thanks for sharing. It’s really useful to be able to read about other people’s decisions in similar situations.
All the best with your treatment and beyond xx