PROPHYLACTIC MASTECTOMY: HOW TO CHOOSE YOUR SURGEONS?

In the UK going private is the privilege of the rich and with a dad, and now a step mum as highly respected NHS Drs, not an option I would consider. Also, as much as everyone complains about the NHS, Brits don’t realise how lucky they are to have access to world class health care they don’t have to pay for.  But lucky or not, a free health service means you don’t get to choose your Drs. You may not like them, but you generally just go with it because Dr knows best.

In Australia however, unless you are going public, you get to choose your Drs. I found this fascinating at first. You mean I get to decide if this person gets to operate on me? But they have gazillion years of training and letters after their name, surly they know better than me? Who am I to decide?

But decide you can, so I thought it would be useful to put down a few bits of advice on how to find, and choose your surgeons to conduct your prophylactic mastectomy.

Location, Location, Location

I had some constraints in terms of who I could interview or audition for the role of chopping off and building my new tits. As my insurance covered me as a private patient in a public hospital, I had to find surgeons who operated in the public system. Not all of them do? Some of them only do private – so that was my first filter.  And it may sound stupidly obvious, but do they operate in the hospital you want to be operated in?  You may have heard about the best surgeon in the world, but if it’s Pete from The Real Housewives of Orange County, he’s probably not going to be much use to you if you live in Sydney.

Who does your hair?

If you want to find a good hairdresser, ask someone with good hair. If you want to find good surgeons, ask someone who likes their reconstructed boobs. And reconstructed is the key. Your mate, Gina, may have the best fake boobs, but if her surgeon doesn’t have any experience in building them from scratch, they are unlikely to be the one for you.

Wherever you live, there are lots of forums and support groups for high risk women considering prophylactic surgery.  Asking these women to recommend good surgeons is probably a great way to find good people and feel reassured that they have done a good job of this, at least once before.

In Australia Pink Hope have private forums on Facebook for the different states. Other forums on Facebook include Previvors, Young Previvors, Prophylactic Mastectomy and BRCA sisterhood. Aussies are pretty conservative and their chat is mostly chat, however the US groups are a bit more open and they may even show you pictures of their reconstructed boobs to prove how good they are. But you may want to decide whether you want to do this pre-op. However good they might be, they will look reconstructed and you may not be ready to face that before you go under the knife.

Respected colleagues

Another way to find good surgeons is through recommendations from other surgeons. I spoke to surgeons who I couldn’t go with because they only operated in private hospitals, but they recommended surgeons, who they rated, who fitted my insurance constraints.

Working together

Strangely, my step mother is a breast surgeon. Would I have wanted her to operate on me – no – a little close to home – but she was able to give me a great piece of advice in choosing surgeons. You want to a breast and a plastic surgeon that are experienced in working together, as a team. When the breast surgeon has done his thing he needs to seamlessly high five the plastic surgeon on his way in. They also need to be able to communicate with each other in your recovery so, you may have found an amazing breast surgeon, but if he has never met your plastic surgeon before, you may want to reconsider if he or she is the right choice for you.

Practice makes perfect

You may have found your ideal surgeon, but you want to do straight to implant and they’ve only done the procedure a handful of times in their career. Once you know what surgery you want, ask your surgeons how experienced they are in it. Surgeons have their specialities in certain procedures and will naturally lean towards conducting these so you also need to be careful that you don’t get pushed into a procedure you don’t want to do. If you want nipple sparing and your breast surgeon is pushing you to remove your nipples (or vice versa), it might be because this is what they are most confident and practiced in. Don’t feel pressured into changing your mind because it’s what your surgeon wants to do, not what you want to do.

Oooh sometimes, I get a good feeling

You don’t have to like your surgeon, but you have to trust them and feel as though they are the right people for you. Do you feel comfortable asking them what you need to ask? Do they answer you honestly? Do they do what they say they’re going to do? Are they clear? Are they responsive?

In short – do you feel like they are the right surgeons for you?  If your gut says no, trust it.  It doesn’t mean they aren’t great surgeons and they may be the ideal choice for someone else, but that doesn’t matter. This is very much all about you, so have faith in your judgement and you can be confident in making the right choice.

Let me know if anyone has any other suggestions for finding the perfect breast and plastic surgeons for your prophylactic mastectomy?

THINGS THAT ARE DIFFERENT SINCE HAVING A MASTECTOMY: #6 SHAVING MY ARMPITS

Well, it’s not so much shaving my armpits, but more, how much of my armpit I can shave.

When I lift my arm to trim my under-hair my expander pops out like an angry soccer ball and constricts 1/3 of my armpit. It’s a section just above where my drains were and it’s nigh-on impossible to get a razor in the crevice.

This leaves me with a patch of hair, not dissimilar to a little goatie beard.

Any suggestions for removing hair from small places, (that isn’t laser- too near the implants, or nose clippers- too humiliating) please send them my way.

Things that are different since having a mastectomy: #5 Pumping up tires

When I was a little girl my brother would make tunes in the sound of farts via his armpits. I thought this was the most amazing thing I’d ever seen and was unbelievably jealous.

However hard I tried and closely I copied his actions, I could never make the same sound via my armpit.

Fast-forward 30ish years and I decide to take advantage of Sydney’s amazing autumn day by going for my first, post-op bike ride.

Any road-bike rider worth their salt knows that pumped up tires = a good ride. My poor bike had neglectfully been sitting in my work for the past 3 months and both tires were in need of filling.  So obviously the first thing I decide to do before getting back on the saddle is pump up my tires.

The motions and process of pumping up the tires is the same, albeit a little tougher than it was pre-mastectomy.  The main difference was the sound my armpit made, every time I inserted more air into the tire and my expander made contact with my pit.

Yes…it was the sound of a child-like parp.

So you see, child-hood dreams really do come true.  As long as you wait long enough and decide to get both your breasts removed…

If this is just a creation of my warped upbringing and imagination and you have no idea what I’m talking about, here is some kid on the internet mastering this skill:

Booby Dysmorphic Disorder™

Most of us who were small fry, pre-mastectomy, seem to want to be bigger post-chop. Never say never, but it’s unlikely I would have opted for a boob job BF (in the time ‘Before Foobs’), had I not found my deformed gene.

Some of you know my feelings about drawing comparisons between a prophylactic mastectomy and a breast augmentation. If wanting bigger boobs was my motivation, I could have found a load more pleasant means to get them… Eating lots of pies, chicken fillets and, if I really, really wanted them, a run of the mill boob job, which would have been a much more pleasant and less psychologically treacherous stroll in the park than the route I have chosen.

However, if I have had to have my boobs lopped off, one small payback is going to be the opportunity to increase the size of my love jugs.

I’m currently at 300CC in my expansion process.  This last fill has been the most uncomfortable to date. I wake up each morning feeling like my breasts might explode through my armpits and I have pins and needles where my bra straps would normally be on my back. They are also so hard I feel like I’m wearing a bra stuffed with shot-puts. (The irony is, and you can ask Mr F, I am very much not wearing a bra at the moment. Well, it hurts like hell! We now have a morning game where we anticipate how visible my nipples will be in the day’s choice of clothing… anyway, I digress)

My point is, even though they feel like the biggest breasts in the world, I currently have no real idea how big they are which is why I have diagnosed myself as suffering from Booby Dysmorphic Disorder™. Like the body version, I think my view of how big my boobs are, is pretty out of whack with how they actually look.

How big are my boobs?

I don’t know? But they are definitely bigger. I put on a shirt the other day and for the first time in my history (apart from when I’m carrying a little holiday weight) the buttons were in danger of taking out a few eyeballs. Then I also almost got stuck trying to get my sports bra over my Foobs, which was quite embarrassing as I was with a relatively new colleague. It was so tight that when I took it off my right boob was a squashed oblong (I swiftly reached for the cocoa butter and began to desperately massage it back to ‘normal’).

But as head to my final fill next week, I’m a little sad not to keep going. Maybe if they were squishy and pendulous they’d feel more substantial?  I’m also worried that when I make the exchange to the softer, more realistic implants, I’ll lose some of the fullness that my current shot-puts provide. After everything you go through, I really don’t want to feel ‘deflated’ (pardon the pun) with the final result.

But… will they look ridiculous? I’m only 5’3” and a UK 8 – 10. In reality am I modelling myself on Barbara Windsor? Who knows? I am suffering from Booby Dysmorphic Disorder after all.

Taking over-sharing to a new level

Today I went on national TV and talked about getting my boobs chopped off. I almost cried when I talked about my mum, and I now want to remove a mole I have on my face but apparently I did very well. I managed to get a plug in for http://www.pinkhope.org.au and am chuffed that I did my bit to get our story out and raise awareness of BRCA. I’ll try to get a clip and post it up here.

The other highlight was that Angelina Jolie ‘favorited’ my tweet to her. We’re so going to be BFFs forevs and evs.

Angelina; Helping Previvors find their place

So it appears that I have more in common with Angelina Jolie than I ever thought possible. No, it’s not a gaggle of children, adopted from the far corners of the world. We’re both women who have voluntarily decided to undergo mastectomies in order to prolong our lives and reduce our risks of breast cancer. And like Ange, I also have a (better looking) version of Brad Pitt in my rock, Mr F.

Her letter to the New York Times about her decision to undergo a prophylactic mastectomy following her BRCA1 diagnosis is beautifully written. I applaud her for using her celebrity status to raise awareness and understanding of what it means to be a Previvor and the choices we have available. http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?smid=tw-share&_r=2&

Finding our place

Part of the reason I think that Angelina’s sharing her experience with the world is so important is because as Previvors, we’re a bit of a funny bunch that don’t neatly fit anywhere. We’ve not actually had cancer, but at the same time, face a different reality and decisions from your genetically favoured, Josephine Bloggs.

Not cancer enough

When people first found out about my decision to get my boobs chopped off many, very kind and generous friends offered to put me in touch with people they knew who had been diagnosed with cancer and had undergone a mastectomy.  I found this generous offer a difficult one to reply to, or explain.

Most Previvors will be too familiar with the heartbreaking effects of cancer and many will have lost more than one family member to the disease. But we haven’t actually had cancer. We’re the lucky ones who were given a choice and could take a part in somewhat guiding our fate. Many of us have no idea what cancer personally feels like and hopefully, if we follow the course of continued expulsion (boobs, followed by ovaries or Fallopian tubes), never will.  At low points, when things get tough during this experience, I often feel ashamed that this fact is not front of mind.

Our surgery follows a similar course, but aesthetically, physically and mentally, a Previvor’s journey is much more straightforward. We don’t have to endure chemo or radio-therapy and as a result, things are much easier.  So for me at the time, talking to a cancer survivor to help me come to terms with my experience felt a little insensitive.

Not quite healthy enough

For many of us, we’re not sick at all and could be living extremely healthy lives. However, we don’t fit into the genetically favoured crew either.

Imagine waking up each morning with the mindset that one day you’ll get cancer. Not maybe, but you will definitely get cancer? I’m not saying statistically this is the case, but there is a really high probability that you will and for me, mentally, it was definitely going happen.

Many Previvors have had to face their mortality from a very young age. I avoided mine throughout my twenties, but I was always running from it. For those who do face up to it, how young is too young to put the information you have been blessed with to good use?

You see, we have been given a gift. The gift of information and more fool us if we don’t use that information responsibly. If we are diagnosed with carrying a BRCA mutation and continue to smoke and drink too much alcohol, are we complete idiots? Should we never take the contraceptive pill because we know the risks? And if we don’t decide to get our boobs chopped off and we get breast cancer, is it our fault for waiting too long and not acting?

On the subject of breeding, am I selfish for wanting to reproduce the normal way and just hope for the best? Will I be able to forgive myself if I pass my faulty gene to my daughter who has to undergo a mastectomy in her twenties?  Will I be able to watch her make decisions about freezing her eggs just in case she doesn’t meet Mr Right before she has to have her ovaries removed?

I’m not playing my small violin and complaining about it, it’s just, we don’t quite fit here either.

The Previvor crew.

Thank goodness for my crew, the Previvors. Like any group of people, we’re a disparate bunch spread all over the world and our stories are all different.  Some women are happy to share their experience along with their post-op booby pictures, and others aren’t. We’re all at different stages in our lives and being BRCA positive has different implications for each of us. What we do share is a huge level of compassion and a willingness to be there for each other. We are all, in our own ways, pulling together to form a strong community. To be there for each other and help others understand us too.

So thank you Angelina, for helping more women like us find our crew and know they are not alone. As well as helping the rest of the world understand where we fit too.

Everyday things that are exactly the same since having a mastectomy: #1 Nipple Hair

Before you think I’m disgusting or freak-like, let’s get one thing straight; every woman has nipple hair. Look I found an article to prove it. http://www.tressugar.com/How-Common-Female-Nipple-Hair-2431028

As for myself, it’s not as if I have a mane of hair keeping my areola warm. But there are a couple of stray suckers that I need to tend to from time to time.

Call me naive, but I did think that one of the few plus points of getting my boobs surgically removed would be to say goodbye to my nipple’s lashes.

It appears not.

Now bear with me. I’ve had all my breast, bar some skin and my nipples removed. Blood supply has been severely restricted, causing my poor nipples to cling on for dear life by their imaginary finger nails. The artist formerly known as total eclipse of the nipple, went so black I was ready to wave it goodbye.

What’s more, their senses are dead. The other day Mr F asked if I could feel my nipple. I put my hand to it and confirmed I could. It turns out that I could feel my hand with my nipple, but on closer inspection, I couldn’t feel my nipple with my hand.

I have created the most inhospitable environment known to nipples and despite this, the stray nipple hairs survive!?!

I guess no one really likes change do they.

 

At least you’ll get new tits!

I read this article the other day from one of my new previvor friend’s web sites entitled ‘What Not to Say to a Previvor‘. http://www.mydestiny-us.com/what-not-to-say-to-a-previvor.html

Before I go on, a Previvor is essentially me. Someone who minimises their risk of getting cancer by making pretty bold choices, like getting their boobs chopped off.  In my own small bubble I may be unique, but there are loads of us and they are pretty amazing.

Anyway, I digress. I found this article and boy I wish I’d had it before my op.

Some of you reading this will have been in the situation where you heard what myself, or someone you know was about to do and…. you didn’t have a clue what to say. I get it. I like and need to fill spaces myself. Silence is an opportunity to talk.

And for those of you who have told others about your decision? It’s tough. I had a practiced monologue that accompanied my informing people about my decision to have a prophylactic mastectomy. It laid down the facts about my testing, then what BRCA meant and what my risk factors were (including statistics) and then, and only then did I tell people I was getting my boobs chopped off.

As you’ll see in the article, there are many things that people say, and you may have heard or used some yourself. The main one I got early on was what Lisa lists as ‘saying nothing at all’. I call this, ‘the face!’ It’s ‘the face’ that verbally says nothing but visibly says….”I can’t comprehend what on earth you are doing or why and wait, you don’t actually have cancer and hang on, I feel incredibly uncomfortable now, I wish you hadn’t told me this and … oh, swallow me whole.”

If this sounds familiar, I do describe this with a heap of sympathy and empathy and no judgement.

The other point from the article that most resonates with me, is ‘at least you’ll get a new pair of tits’ (or something more eloquently put).

Now I’m a glass half full person and yes, I will get a new, shiny pair of bazookas, but this statement does grate a little. And it’s not as bad for me as it might be for some women. I’ve never had boobs big enough to define me or my body image. However for some people their sense of self is very much wrapped up in their breasts. So this statement is probably the worst thing you can say for a number of reasons:

–          The other day me and Mr F were looking pictures of non-mastectomy, augmented breasts and wowsers, they are so pretty. They appear symmetrical and they are a lovely shape and I swear the nipples point up to where a guy’s eyeline will naturally be, winking like diamonds. You see, real breasts act like bubble wrap for implants. They cushion them, they keep them warm, they allow everything to jiggle a normal amount, and they make the process a whole lot easier.

–          I would pay a significantly smaller amount of money for a normal boob job.

–          I wouldn’t worry that my nipples may drop off or may not make it.

–          I wouldn’t have drains attached to my body for weeks trying to make sure that the empty cavity where my breast was is fully healed and unlikely to get infected.

–          There would be less chance of infection and my body rejecting an implant. I am in a good place now, but this could still happen. If that was the case I’d have to walk around with no boob/s until my body was significantly healed enough to start all over again.

–          For many women scar tissue may be an issue which means the final product will look less than perfect.

–          I would be up and running a whole lot quicker as someone probably wouldn’t have cut open my pectoral muscle and chucked some balloons underneath there, prohibiting my arm movement.

–          I might still be able to breast feed.

–          However good the result, they will look like false boobs that are so firm, no man should ever attempt moterboating them for risk of brain injury.

So what about the partner of a woman who is prophylactically getting her boobs off? Well I’m afraid the same also applies for similar reasons to the above, alongside the following:

–          This is going to be a really tough time for the bloke. I’m sure he’d be OK with his partner not having new boobs in order to avoid the worry, the stress, her moods, the upheaval to daily life etc.

–          Regardless of how shiny and new they are, emotionally his partner may struggle to accept these new boobs.

–          He may get really weirded out by the new bazookas and not find her as sexy as he used to.

So look, I think you get the picture.

However, as I was saying, I get it, you need to say something. So, here are some things you can say when someone else tells you similar news that makes you feel equally as uncomfortable (p.s. this may just be my preference so apologies if you offend someone as a result of my advice):

–          Wow, you’re actively embracing your risk of getting cancer and are and taking life by the balls, telling it to look out! (feel free to paraphrase).

–          I know you’d rather have your own boobs and not have to go through this, but I guess yours will never ever sag ever again? (For me this one’s OK. One of my boobs, small as it was, had started to look like a foot coming from my chest)

–          I have no idea what you’re going through. Good luck man, I’m here if you need me.

Or simply, ask questions.  I love questions as it’s all about me and gives me a chance to spout off all the new information about BRCA, hereditary cancer and prophylactic mastectomies that I have worked so hard to acquire.

Good luck with social minefield. Hope this helps? x

 

 

Shopping for a post-mastectomy bra to wear during the expander process

We’ve chatted before about whether you need to wear a bra after a prophylactic mastectomy. To save you reading through my previous musings, I will summarise my findings. Do you need to? Not technically, no. These bad boys, especially during the expander phase are rock solid and won’t be going anywhere. Could you if you want to? Yes, of course.

However, as is often the case, the real questions don’t come until after the event. I know I don’t want to be splashing out on fancy lingerie before I get my final Foobs. I’m a little cheap and what’s the point, they’ll change size each week? But as I prepare to head back to work very soon, the following concerns have arisen:

Wearing a bra post-mastectomy: The real questions!

–          To pad or not to pad? Or to put it more succinctly, do I want to wear padding to go back to work so people can’t see how little my current boobies are? Or do I want to just show my baps as they are, regardless where I am in the expanding process?

–          Do my nipples show through some of my clothes?

–          Do I want my colleagues to be able to see my nipples?

To pad or not to pad?

I was given a bra in hospital. It’s a decent one by Berlei that does up at the front. Yes it’s beige and extremely non-sexy, but it was free. It also comes with generous pads that are much better than any of the rolled up tissue paper I used to use as a pre-pubescent teen.

But do I want to pad my bra? Mr F thinks I do and I’d have more confidence when I go back to work?

For me, I don’t know if I give two stuffs? Surprisingly enough I’ve been pretty open about what I’ve had done, so people aren’t expecting me to return with a full rack. So returning wearing humungous padding feels a little disingenuous, as though I’m denying what I had done.  I also think it would draw more attention to my chest than not having anything.

What’s more, contrary to what most people think when they’ve seen me for the first time since the op, I’m not concave, or completely flat. There is some shape there and in the words of my friend, I just look like a sporty, small chested girl.

So, to pad or not to pad?

Nope. People can see the progression as and when it happens.

Do my nipples show through some of my clothes?

Yes, they really do. Seemingly more so now as the left one is in a permanent state of not erect (that function is now defunct) but not flat.  The right one is currently sitting underneath a bandage, which is also showing through clothes.

Do I want my colleagues to be able to see my nipples?

Hell no!

So what to do?

Well I found my solution yesterday in these very, tween-like cammi-bras from Ambra http://www.ambra.net.au/. They are soft, have no wires, will stretch as my Foobs grow, and most importantly, WILL HIDE MY NIPPLES FROM MY WORK COLLEAGUES!

They do look a bit like ‘my first bra’, which essentially they are, but they were tres cheap at $19.95 and are exactly what I need for now.

 

Things that are different since having a mastectomy: #4 Reaching for avocados

Have you ever noticed how supermarkets hide the ripe avocados at the back of the shelves, underneath all the other avocados?

No?

Neither had I until today when I thought I might dislocate my arm from its socket. You know, how you accidently used to do to your Barbie doll after you’d made her do a load of somersaults….no…? Just me then.

You’ll be pleased to know that a) my arm is still in its socket and b) I got the ripest avocado in the house! Go me!