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?

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Confirmation I did the right thing

WARNING: THIS POST CONTAINS GROSS DESCRIPTORS. DO NOT READ WHILST EATING BREAKFAST

Right Thing

Yesterday, I had my first breast surgeon appointment since my discharge from hospital. Part of me felt like there wasn’t really much for us to chat about, having just escaped 4 days ago. However, it came at a really good time. It was my first weekend on my own and on Sunday I had started to imagine a) there was fluid build-up in my right boob and b) my right nipple was definitely dead and about to fall off.

My sensible side realised that both of these options was unlikely but I was looking forward to getting some reassurance.

My post-op nipples

My poor post op nipples haven’t looked great. I have been assured this is perfectly normal and they do tend to get dinged in the surgery process, forming a blister or scab that will eventually drop off to reveal a healthy nipple.

My left nipple on my preferred boob (preferred because it was 2cm higher than the right breast, a better shape, was never biopsied and didn’t get an infection) had a little scab on the bottom of the nipple. In proportion it was a little like Tasmania to Australia, or Anglesey to Wales.

australia.tasmania.lg_

My right nipple however on my rubbish boob (rubbish because it was more saggy, had been biopsied, was home to an infection, and something else I’ll tell you about in a minute) was complete scab. Yes, my whole nipple was a scab. Imagine if you will a total eclipse of the sun. That was the scab on my nipple and the reason why I repeatedly believed it was about to drop off.

eclps12

A surgeon with a scalpel

I arrive at my breast surgeon appointment, take my top off, lie on the bed and the next thing I see is my surgeon going to the cupboard to grab a scalpel.

OK.

He goes back to my nipples. I don’t really want to look and I can’t feel a thing as all my nerves are dead so I ask him, “what are you doing?” To which he replies “oh just taking the scabs off your nipples”.

Oh well, that’s OK then.

The left side. Simples. Pops off with little persuasion.

The right side. Even before he goes to tackle the total eclipse of the nipple I’m feeling nervous. He takes the scalpel to the scab and assures me that the skin under the scab looks healthy and pink. Reassured by these words I decide to sneak a peak when he goes to get something else from the cupboard. URGH. My eclipse scab is lying to the side of my now, bloody right nipple. Vomit. Thank god he got a plaster and dressed it up because my stomach couldn’t handle any more.

Time bomb tits

Dressed and scab free we return to his desk where he gives me my pathology report, which is the analysis of my removed breast tissue.

Again, the lovely left side had no abnormalities to note.

My rubbish right side however had a couple of warning signs. There was a 3mm fibroadenoma that I already knew about as I had a biopsy needle injected into 4 times it about 12 months ago. Fibroadenoma’s are lumps composed of fibrous and glandular tissue.” Unlike typical lumps from breast cancer, fibroadenomas are easy to move, with clearly defined edges.” OK, job done.

What was also there was an atypical ductal hyperplasia. My surgeon described this to me as “proof that it was on the turn.”

Oh, right. So I came home and Googled it and found this description. “Atypical ductal hyperplasia (ADH) is not breast cancer, but is considered a precancerous condition…  If you’ve been diagnosed with atypical ductal hyperplasia, your risk of developing breast cancer is 4 to 5 times the average lifetime risk.”

Wowsers.

Combine this with my BRCA2 stats and the way I see it, Rubbish right boob was just waiting to make its move. Whether that be in one year, 5 years or 10 and thank god it hadn’t started already. So no, I didn’t need confirmation that I had done the right thing, but with these odds even I’d place a bet and I can’t gamble for toffee.

Infection = Bad: The last 48 hours

Boy. That’ll teach me for being bored. A lot has happened in the last 2 days (days 9 and 10) so I’ll cover everything in bullet form so this doesn’t become biblical. Before I do here’s a quick synopsis to bring you up to speed.

In a nutshell:

Some of you will remember my right-side drain leaked on Day 6, we tried to save it, but it looked like it was on the way out so we removed it on Day 7.

I woke up on Day 8 to find my right boob had swollen up and felt like a water balloon.  I freaked out because I’ve repeatedly been told fluid in the breast cavity is bad, fluid can lead to infection, infection = bad! Ultimate consequence, removal of the expander that is sitting behind my pectoral muscle, we have to wait until it heals, we can then run this show all over again.

Both the plastics and breast surgeons didn’t feel I had anything to worry about. The fluid wasn’t much, it would in all likelihood dissipate through my body in time, otherwise they’d drain it with a needle…

Got it? Now we can begin:

48 hours

Day 9

8am – 10am

  • I woke up and updated my Twitter and Facebook status claiming that today was a think positive day.
  • Nice breast surgeon from Manchester came to see me. He checked my right boob, said it was OK and unless I was in pain, to leave it. Looked at my left side drain and said if plastics were happy, I could go home today or tomorrow. IMMENSE!
  • My lead breast surgeon comes. He agrees with what everyone has said. Offers to overrule everyone and take out my left-side drain and discharge me there and then. I may be a bit bolshy at times, but I don’t like breaking rules so I say no. If it wasn’t for the fluid build-up in the right side I would have jumped at the chance and agreed.

12pm

  • Plastics team come to see me. They are less enthusiastic about the discharge chat, but agree that the right boob still looks fine and IF, IF, my drains are low enough tomorrow, I can go home.
  • I hit rock bottom, cancel my visitors for the afternoon, but head out to meet Mr F for lunch. There are no trips to the beach today, just up to my usual coffee shop around the corner.
  • Lunch – I cannot stop crying. Mr F has a rubbish lunch.
  • I come back and try to read but am too woozy so I got to bed for a couple of hours. Wake up shivering  Put some more clothes on and get back into bed. My chest is really tight so I loosen up my binder and try to go back to sleep.

6pm

  • Can’t sleep, still shivering, I feel sick and my chest tightness is becoming unbearable. I can’t breathe and I’m having sharp pains down my back.
  • I call the nurse and ask her to take my temperature. She does and it’s fine. However I can’t sit still long enough for her to take my blood pressure and run to the toilet thinking I’m going to be sick. No vomit.
  • My breathing and pain in my back becoming worse. My most matronly like, and Welsh, nurse tries to run an ECG but my back pain is too bad to sit still. She calls a Dr.

7pm

  • Before I know it I have 3 Drs in the room asking me questions. They have felt my right boob again and still don’t think that’s the culprit. I have blood taken from 3 different places. A 4th Dr comes, lots of questions, finally an ECG, and they take my temperature again. My heart rate is 100 beats per minute and my temperature is 39.3.

8pm

  • They want to take a chest X Ray and ask if there’s any chance I might be pregnant. It’s very unlikely, but this whole surgery thing has played havoc with my cycle so is there any chance? A minute one, possibly? I think I could maybe sue them if I am and my unborn baby is damaged by the X Ray radiation? So, I take a test… Not pregnant! Don’t worry; X Ray commence.

10pm

  • Cut a long story short, it is determined that I have some sort of infection, they pump a lot of antibiotics in me and my temperature comes down. By this point I’ve called Mr F to hospital from the pub. He is lovely, concerned and smells a little of beer.
  • I am shattered and terrified.

Day 10

8am

  • Wake up feeling better than I did, txt my friend who I had cancelled on to tell her about my infection, she calls straight away, I can’t stop crying.
  • She calls my ward and requests to break visiting hours protocol to come and sit with me.

9am

  • She brings me breakfast and sits with me to do crossword puzzles.
  • My nice Manchunian breast surgeon comes, he looks at my right breast. He’s not happy. The fluid has increased and my breast is red. He recommends we do an ultra-sound to determine how much fluid in there. We’ll stick a needle in to drain the fluid (remember, plastics don’t like this as it’s a foreign body, which also may risk infection).

10am

  • My Child Plastic Surgeon (CPS, who I now really like but I need consistency in my names so you know who I’m talking about) comes. He also thinks we need an ultra sound, but at the same time he is concerned. Wants another urine sample. I am forced to drink a lot, quickly, in short succession. I pee on demand and, sorry this is gross, but it’s boiling hot!

11am

  • CPS returns to say he has spoken to a plastic surgeon (not my main guy, but another guy who I don’t rate for reasons too long to discuss) who recommends that I go back into surgery, they open me up, remove the expander, clean out my cavity, sew me back up again and add another drain. I ask CPS what the chances are of this not working and me losing my expander – he says’ there’s a 15 – 30% chance I will lose it. CPS is clearly a glass half full kinda man, and I think he’s made up these stats.
  • The surgery can’t be until 5pm as my lovely friend just brought me breakfast.

11.30am

  • Mr F arrives with a Cadbury’s Whisper Easter Egg, which of course I can’t eat as I’m nil by mouth. My temperature fluctuates throughout the day and my chest is still tight, making it difficult to breathe.
  • I have a moment where I question everything and wonder what the hell I’ve done. I’ve mutilated my body on the off-chance I might get cancer, and now I’m about to go back into surgery which may or may not increase the chances of this whole thing failing?

6pm

  • I’ll be honest with you, I’m still not in a great place as we head into surgery. Just as we are about to go through the double doors into theatre, CPS tells me that he has spoken to my main silver-fox plastic surgeon and he doesn’t want to remove the expander and just wants CPS to open my right chest cavity, drain it and give it a good clean. Everyone seems really pleased about this and is implying I should be too. In retrospect I understand it’s a much less risky procedure.

8.30pm

  • I return. CPS says it went well and the infection had’t spread to my muscle and my chest expander. My temperature is down and I can breathe a little easier.

So, as I was saying, a lot can happen in 48 hours. What happens next is anyone’s guess. All I know is I’m going to sit very still, not move very far from my bed and hope for the best.

Time

Questions for the Dr

Questions

On Thursday, three weeks away from the operation, me and Mr F are going to see my breast surgeon, Dr John Thomson at Randwick.  This is our chance to get more prepared for what’s about to come.

This is the first time Mr F has come to one of my appointments.  Not that he wouldn’t have if I’d asked, but to be honest, I’ve not wanted to waste his time with A LOT of appointments. So I went and updated him afterwards. But as this next next chapter effects us both hugely, hopefully, going to the remaining appointments together will ensure we’re on the same page and that we’re doing this as a team (for which, I thank my lucky stars, every day).

Now the hard questions have already been asked and answered along the way;  Do I think this is a good idea? Do I need to remove fat from my belly or back as part of the reconstruction? Do I want one operation or two? And do I want to keep my nipples?  Just a couple of small considerations… But with those out the way,  we need to ask the seemingly, simple questions.

Me and Mr F are pretty different people and we have incredibly different ways of thinking about things, so we’ve each both pulled together our checklist of questions to ensure we have as few surprises as possible in about 4 weeks time. Some are a bit frank, for which I apologise in advance.They also are pretty reflective of our personalities. I realise that some of mine may seem a bit futile in the grand scheme of things, but those who know me will understand I’ll be keen to be up and running ASAP.  I’ll report back in a couple of days to let you know the answers.

My Questions

  • What do I need to stop doing before the surgery?
  • How long will it be before I can exercise?
  • When can I walk? And then when can I ride a bike?
  • If I can’t use my upper body, could I do squats / use resistance bands?
  • What can I do early on to get movement back in my arm?
  • What do you suggest I do if I get my period in the first two weeks following surgery?
  • Am I able to go to the toilet alone?

Mr F’s Questions

  • What levels of bruising should we expect and what is too much?
  • What are the potential injuries that might happen during healing process i.e. minor tears or over stretching?
  • How best to stop any post op infections?
  • What things will she realistically be able to do and what won’t she?
  • What things will I have to help with?
  • What’s a realistic distance to travel and how soon after?