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?

Muted celebrations of the simple things in life: Day 12

simple things 2

Over the last few days I am acting a little more cautious and my celebrations of ‘get Trisha the heck out of hospital milestones’ are somewhat muted. It is within this context that we recount Day 12 (yes day 12) since the operation (hurray, smiley face. I don’t really like emoticons outside of social media), and day 12 in hospital (really, 12 days? She must be going out of her mind? Correct).

Health Rating: 6/10

Mental Health Rating (where 1 means sane and 10 means mental): 8/10

Day 12

–          CPS (Child Plastic Surgeon for any newbies) comes to see me at 7.30 am. He is either a) scared of me because I shout at him all the time, or b) punishing me because I shout at him all the time.

He says the left drain that has been in my body for 12 days (yes 12 days!) can come out.

–          I go get a coffee in my hospital gowns, pushing my IV and carrying my drain bags. One of the drains is so long and the fluid inside is so yellow it looks like a catheter. Everyone smiles at me. Pity smiles!

–          Silver-fox Plastic Surgeon comes to see me. He is sporting a healthy, tired look that can only have been achieved through water sports and beach walks with chilled white wine chasers on the veranda each night of the Easter break. These tired eyes are brought out by a deep, mahogany tan that even Australian’s wouldn’t frown at.

He confirms that the left drain can come out and switches my IV antibiotics or oral. Main benefits of this:

  • I can walk around without pushing my 6 foot friend (the IV)
  • I can take off the gowns
  • I can wash

Downsides:

  • People will invariably stop pity smiling at me and just wonder why I’m wearing an adult baby-grow?

–          The nurse comes to remove my left drain. The incision site looks like an angry, inflamed, teenage piercing (I had plenty of these so I know). She then goes to take it out and I swear it’s grown feet the thing’s been festering in my body for so long (did I mention anything about 12 days?). So she has to give it a good yank, I feel its claws dislodge, it comes out. I never want to see it again.

–          MT comes to see me. I have a smaller visiting pool now as I’m too tired and unpleasant to entertain anyone who doesn’t have to be my friend due to longevity. When I wake up, high on the news that Hollyoaks is coming to Aus, we both watch a round-up episode that introduces me to all the latest characters and their story lines. See below footnotes for more information on Hollyoaks.

–          Mr F comes to see me – HURRAY! He brings Vietnamese. We watch the first episode of Game of Thrones Season 3.

And those are the highlights of Day 12. There is a lot of talk of ‘home’, but this is causing me different levels of optimism and distress for reasons I’ll discuss in Day 13.

p.s. one of the search terms that led someone to my site yesterday was ‘Intimacy hot boob play’. Ah ha ha ha! How disappointed they must have been. Ha ha. Insert smiley emoticon 🙂

Hollyoaks

Hollyoaks is a UK soap opera set in the fictional town of Chester.

It only features incredibly attractive actors between the ages of about 15 – 28. They may be attractive, but on the whole they are very common. For those in the UK (who probably know Hollyoaks anyway) by common I mean chavvy, Australians, I mean bogan.

Anyone who is not attractive or falls outside the above descriptor is what is known as a token character. Examples of token characters may include:

–          Not attractive people

–          Overweight people

–          Ordinary looking people

–          Old people

–          Crazy people e.g. cult leaders or murderers

When I was in the UK, Hollyoaks was on about 5 nights a week, which was then re-shown as an omnibus on Sunday morning. Hungover, me and my friends, or my brother’s friends, or just me, would eat a bacon sandwich and watch Hollyoaks for the majority of Sunday morning. It was ace.

The Patience of Being a Patient


Patience1
I went for a walk today and felt something smeg-like on my arm. I looked at my arm pit and I had a mini freak out that my right drain – the previously well behaved one – had fallen out.

I pegged it back to the ward and no, it hadn’t fallen out, but it had come out a bit from where it should be and has stopped sucking the smeg out of my right breast cavity.

The Dr tried to plug this up but it didn’t seem to work. This would be OK if my drain amounts were low enough not to worry. They weren’t. There are several potential outcomes as a result of smeg-gate:

a)      My body fixes itself and gets rid of this waste by itself and all is well with the world

b)      The fluid builds up in my cavity and they have to drain it with a needle

c)       The fluid builds up in my cavity and they have to go in and drain it with an operation

How will I know which one will happen? I can’t. I simply have to be patient.

None of these things sound too bad, until you get to the potential sub-outcomes of b and c. You see, both b and c increase the risk of infection and if I get and infection, the likely sub outcome is, they have to remove my expanders, I am fully boobless (even more so than now) for some time and I have to come back in and have another, stage 1 operation, and new boobs are quite a way off.

How will I know if this will happen? I don’t. I just have to be patient.

So that’s smeg-gate. Combine this with drain-gate on my left side, which doesn’t seem to be abating…

Me: Hi plastic surgeon. If after 10 days, if my left drain is still going, what happens?

Plastic Surgeon: Nothing

Me: I’m not getting out of here for ages am I?

Plastic Surgeon: I’ll get you out of here within a month

INSERT > EMPTY SILENCE

Tumbleweed_rolling_2

The Power of Patience

DalaiLama

For me, the boobs were the easy part, something in my control that involved action. This part however, that I have no control over and as an otherwise healthy and able person, just have to let it take its course, is taking me to limits of my puny patience.

With even more time on my hands I decided to look at the definitions of what it means to be ‘patient’, versus what it means to be ‘a patient’, to see if I can pick up any pointers on how to be better at both.

Patient

Definition 1. Bearing or enduring pain, difficulty, provocation, or annoyance with calmness.

Trisha’s Patient Barometer: Trisha is enduring pain, difficulty, provocation from her annoying drains and smeg and the annoyance of being in hospital with limited calmness.

Patient Verdict: Fail.

Definition 2. Tolerant; understanding: 

Trisha’s Patient Barometer: Trisha is tolerant to pain but shows very little understanding for the fact that the body will do what the body will do.

Patient Verdict: Fail.

Definition 3. Persevering; constant.

Trisha’s Patient Barometer: Trisha is constantly persevering (to try and go home).

Patient Verdict: Pass (questionable).

Definition 4. Capable of calmly awaiting an outcome or result; not hasty or impulsive.

Trisha’s Patient Barometer: Trisha is incapable of calmly awaiting the outcome of drain and smeg-gate. She is hastily trying to behave like a normal person and impulsively crying.

Patient Verdict: Fail.

Being A Patient

Definition 1. One who receives medical attention, care, or treatment.

Trisha’s Patient Barometer: Trisha is definitely receiving medical attention, care and treatment.

Being a Patient Verdict: Pass.

Definition 2. One who suffers.

……

According to the above I am rubbish at being patient but really good at being a patient. So, with my prognosis unclear and my exit date, within this month, I have decided to seek guidance and motivation from the Dali Lama. He says:

“The practice of patience guards us against losing our presence of mind. It enables us to remain undisturbed, even when the situation is really difficult. It gives us a certain amount of inner peace, which allows us some self-control, so that we can choose to respond to situations in an appropriate and compassionate manner, rather than being driven by our disturbing emotions.”

Roger that, Dali. What’s another week between friends, eh?

Patience2

Day One: Surgery Day

blogger

Mr F has told me that I’m only allowed to write a very short blog due to the fact that since I have come out of recovery, I have not stopped and have been bouncing off the walls.  So as he’s been amazing and I need him to do quite a lot for me, I am going to listen to him and limit this blog post to the highlights of today:

  • 5:50am: Alarm call – read messages on Facebook, cried
  • 6:45am: Got to hospital, paid $270 to get a room on my own – it’s more expensive than a posh Travelodge (p.s. I don’t actually have my own room at the moment despite this – but can’t be bothered to write about it)
  • Get changed into my gowns, me and Mr F debate whether I should wear pants for surgery or not. He wins, I put my pants back on
  • Go down to theatre and sit on a bed. About 3 mins later it’s time for Mr F to leave. This is much sooner than we thought. We say our goodbyes, he looks more worried than me. I am wheeled off
  • Starting to get hooked up when my plastic surgeon comes down to tell them he hasn’t marked me up yet.  I walk to a little room, protecting my modesty at my derriere, conscious that I wore terrible pants today. He marks me up with those really toxic pens that people in Merthyr Tydfil use on the weekend… The drugs begin
  • 8am: I’m back and a very charismatic, Maltese anesthetist comes to pump me up. He’s shouting at people to get all number of drugs and, before I know it, unknown substances are pouring into my body, via my hand
  • 08:10am: In the theatre, it’s freezing! It is now that I have a little ‘ARE YOU KIDDING ME’ moment. I have been the most positive patient in Randwick all morning so this is a contrast.  Have a pep talk with myself, which is aided by the anesthetic.  We debate whether I’m going to Miami or Cardiff… I choose Miami … OUT COLD
  • 12ishpm: Wake up in recovery and want to see Mr F. They won’t let me leave until my heart rate goes up – it’s at a worrying low level – I inform them that I am incredibly fit and so my resting heart rate is amazing, and low. After a while they buy this and move me to the ward
  • 3pm: Mr F is waiting for me, he expects me to be woozy, I’m high as a kite and so excited to see him.  Have my first glass of water in 17 hours. The water goes through the gas tubes in my nose
  • I have a support bandage on my chest – looks like one of the boob tubes I was fond of wearing to Astoria when I was 17. Two drains coming out my armpits. A morphine button to my left – ACE
  • Mr F sets me up for any eventuality – WI Fi hot spot, iPad, Heat magazine, mobile phone, laptop

  • 5pm: I get a little Hangry. It’s been 20 hours since I’ve eaten anything. I also start telling Mr F that for breakfast tomorrow I’d like a skimmed latte with fruit and yoghurt for breakfast. He sighs – this is going to be the cue for when I push it.  Note to self, don’t piss off the carer
  • 5:45pm: FOOD! Chicken soup (reminds me of uni), small cheese sandwich, vanilla slice and a cup of tea. Mr F has a sandwich and half the vanilla slice
  • I crash for a second. Food had made me realise pain.  I cry for 2 seconds, press the switch of pain relief love, am happy again
  • 6:30ishpm: I decide to write a blog post. Mr F is not that impressed. My breast surgeon comes to see me. He is impressed, for him, this is a positive thing. He’s going to check on me over the next few days to see if my nipples look like they’re going to survive… Good luck nipples!
  • 6:45pm: I tell Mr F to leave as a) I want to write my blog post and b) I feel bad, he’s been here a while and has done at least 48 patient duties – which he has excelled at I might add
  • Mr F goes to leave and I start crying. Oh

And here I am. Nearly 12 hours with no boobs and everything is OK. I feel like I’ve done one million push ups and my range of movement is really limited, but my head is good and at this moment in time, there’s no regrets.

Back tomorrow. (p.s. this blog aint short, sorry)

ANSWERED: I’m not going to have any boobs – do I really need a bra?

Some of you may remember my post that asked the question, if I’m getting my boobs lopped off, do I really need a bra? http://www.imgettingmyboobsoff.wordpress.com/2013/03/05/

Despite having done quite a lot of research, at that point I did not have a definitive answer. So as I went to my last pre-op appointment with my plastic surgeon, I was keen to get the answer.

I like my plastic surgeon, as much as anyone needs to like their plastic surgeon. He’s pretty straight up, honest and seems to have my best interests at heart. As a result, I trust him and that’s what’s important for me. However, am I going to invite him and his family over for dinner? It’s unlikely. Does he laugh at any of my ‘I’m a really positive patient’ jokes? No. Not even one.

I arrive at my appointment with my bra questions printed out on a piece of paper and wait for my cue…

Plastic surgeon: “So Trisha, do you have any questions?”

Me: “Yes, do I need to wear a bra after surgery?”

Plastic surgeon: “No”

Me: “Oh, I thought you might give me one?”

Plastic surgeon: “No”

Me: “Oh, I see. I read somewhere that I won’t ever need to wear a bra ever again?”

Plastic surgeon: “No, you don’t.”

Me: “I’m not sure about how I feel about that. I quite like wearing a bra.”

Plastic surgeon: “You can choose to wear a bra, but you don’t need to.”

I probably cracked a bad patient joke here and that was that. I’m not going to lie, I was a little bit disappointed. As we have discussed before, whilst I haven’t been the best lingerie buyer to date, I was keen to treat my new boobs a little better. So I left with the answers to my questions, but a little despondent.

That was until I received a call a few days later from one of the breast nurses at the hospital. She was calling to introduce herself and let me know that she’ll be getting me a bra to take home with me from the hospital.  HURRAH!

She explained that whilst you don’t need to wear a bra, lots of women want to, and so they get you a bra for when you’re ready to wear one. What’s more, as I’ll have the chest of a prepubescent girl during the beginning of the filling process, they also give you some soft foam to fill the bras with to give you some shape and confidence until the new boobs come into play.

With the encouragement to go forth and wear a bra, regardless of whether I need one or not, I am ready to go lingerie window shopping again.

Post Surgery Bra Shopping

Before you start, this article is a good checklist for what you need to bear in mind when buying a post-surgical bra. http://breastcancer.about.com/od/lifeduringtreatment/tp/bras-camis.htm. Key points are, focus on comfort and look for wide bands on the shoulders and beneath the breast.  Underwires are a no no until your surgeon says so, avoid seams and choose front fastening, especially for the months immediately following surgery.

Across the pond, the great British institution that is Marks and Spencer, has pulled together a video lingerie guide to post surgery, which is good to watch before you buy anything:  http://www.marksandspencer.com/MS-TV/b/311612031?intid=emtv_2_42_1375671779001

They have quite a good range of bras, very reasonably priced, but their post-surgery ones do look a bit like my grandma would wear. It might be worth looking at some of their non-wired options, which are much prettier, for a bit further down the track.

I like this Carefix Post-Op Bra, Alice that I found on http://www.undiewarehouse.com.au (which has loads of options BTW). It does up at the front, is wireless and recommended for post-operative stage, immediately following surgery.

alice-_front_

Another one from Carefix that I found on Westfield is also pretty cool. Again it does up at the font, holds dressings in place and says it’s great for use in the recovery stage after breast augmentation, reduction, reconstruction, mastopexy, lumpectomy or radiation. Sounds pretty comprehensive to me? http://www.westfield.com.au/au/search?sq=post+surgery+bras

CarefixWestfield

This Berlei wirefree post-surgery cotton bra looks a bit ‘surgical’ and asexual, but I like Berlei and you can trust they’ll probably be good. It has both front and back opening and cotton inner pockets to accommodate prosthesis. http://www.berlei.com.au/bras/shop-by-range/post-surgery/

Berlie

Finally, another great site for Aussies is Zodee http://www.zodee.com.au/search/?w=Post+surgery. They start from just over $25 for a basic wire free bra, and go up to around $60 for something more special.

 

So I’m not going to have any boobs – do I really need a bra?

The answer is I don’t know just yet.

bras

I’ve never really been one for fancy lingerie. Every once in a blue moon I will buy a pair of matching underwear, which very quickly becomes non-matching when I wear my new favourite bra 50 x more than the new matching pants. Much to my boyfriend’s dismay, I’m a little partial to big, comfortable pants and knowing I’m about to undergo a radical change in breast size, I have held off buying new bras to replace my existing ones that are pretty much falling apart.

However, I am a planner and so questions as to, do I need bras for after surgery and how soon do I need them, are currently on my agenda.

What I do know?

  • I know I can’t wear anything with under-wire because of the wounds and stitches
  • I know I should get one that does up at the front as I’m likely to have limited movement in my arms

What I don’t know (and this is the long one)?

  • Do I wear a bra straight away? Some sources say you do and that I’ll need to sleep in one for a while? Other sources say it depends on the individual and what the surgeon advises
  • Will the hospital give me a bra or should I have a couple ready for the hospital?
  • Do I need to get a bra the size of where my reconstruction will end up or do I go conservative for more support?
  • And the one that’s flummoxed me: Once all is well and I have a new set of boobs, do I need to wear a bra ever again? Christina Applegate, who was diagnosed with cancer and then found she had a BRCA gene mutation made this claim on Oprah and I don’t really know how I feel about it. http://www.oprah.com/health/Christina-Applegates-Breast-Cancer-Battle

Part of being a woman is wearing a bra and you never forget how happy, not to mention relieved you were when you could finally justify wearing one. And whilst I am a big fan of being able to go sans boulder-holder to the coffee shop on a Sunday morning, I’d don’t know how I’d feel about doing that on a daily basis. You never know, having my current boobies taken away from me, I may treat my new ones a little better and invest in something nice to carry them in.

Myself and Mr F are off to the plastic surgeon next week so I will endeavour to find out as much as I can.  In the meantime, I am impatient and love to be prepared, so I’m going to buy a couple… just in case.  I’ll come back and will show you what I decide upon and where I’ve found some good options.

Exercise