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?

GETTING TESTED FOR THE BRCA MUTATION

Since starting this blog and especially since Angelina’s BRCA mutation and subsequent prophylactic mastectomy hit the news, there has been more interest from friends and family who might be considering being tested.

The process isn’t necessarily complicated, but there are things that I discovered along the way, that you might not read in a manual or that your Dr will tell you. With this in mind I thought it would be a good idea to outline what I did (and should have done) when I got tested for the BRCA mutation.

I will say that this is my experience and my experience in Australia (with a bit of the UK health service thrown in). This is not a definitive guide and I have listed reference points at the bottom of this article where you can go for more information. If any Aussies want to tell me their experiences I will continue to update this post to make sure it’s relevant.

Before you do anything, sort out your admin

Before you think about getting tested it’s worth sorting out certain things you may not have already and may need further down the road.

If you don’t have life insurance, it’s probably a good idea to sort that out before you get tested so a positive result isn’t taken into consideration when calculating your premiums, or working out whether or not they will insure you.

More important than this, GET DECENT HEALTH INSURANCE.  I cannot stress this enough. I had some health insurance, which meant I was somewhat covered when it came to my operation. But my poor level of health insurance affected some of my decisions, including what hospital I could choose and what surgeons were available to me. Also, as a non-permanent Australian resident, as I am, you also need health insurance, otherwise you won’t be eligible for any rebate under the reciprocal Medicare agreement.

You need the health insurance before you get tested otherwise the BRCA mutation or any surgery resulting from a positive result will be seen as a predetermined condition and your insurance company may not cover you.

Know your family history

In order to qualify for testing, you will need to demonstrate why you might be eligible i.e. you have high incidence of cancer in your family. You will be asked this from the start and then time and time again if you do test positive and decide to undergo surgery.

Speak to your family members and find out who in your family has had cancer, what cancer they have had and what age they were diagnosed.

This quiz will help you determine whether you are at high risk, and shows you some of the questions your Drs will be asking to determine whether you are a candidate for testing. They include a family or personal history of breast cancer before the age of 50, incidence in two or more relatives, breast cancer in a male relative, cancer in both breasts or twice in the same breast, breast cancer and Ashkenazi or Eastern European Jewish ancestry and ovarian cancer at any age.

http://www.inheritedrisk.com/inherit-risk-cancer/

If you have not had cancer but think you may be at risk, find out if anyone in your family has tested positive for the mutation and request a copy of their pathology results.

If no one in your family has been tested, but you have surviving relatives who have had cancer, you may want to request that they get tested first. The reason for this is a little complicated but this extract explains why quite succinctly:

Genetic testing for mutations in the ‘cancer protection’ genes is complex. First, the mutation has to be identified in a family member who has or had the cancer.  This is called a mutation search and may take considerable time.

Second, and only if a mutation is found, other family members without cancer can be tested to determine if they have inherited the faulty gene. This is called predictive genetic testing (see Genetics Fact Sheet 21)”

http://www.genetics.edu.au/Information/Genetics-Fact-Sheets/Cancer-Genes-and-Inherited-Predisposition-Overview-Cancer-Genetics-1-FS47/view

My Dr explained it by saying, looking for a gene mutation is like looking for a needle in a haystack. But if someone gives you a map – in the form of your relative’s genetic mutation make-up – it makes it easier to determine an accurate result.

Speak to your Dr

To get the process in motion, I first went to my GP, explained my family history and that I wanted to talk to someone about testing. They referred me to the Hereditary Cancer Clinic in Randwick but your Dr will refer you to the best place for you.

Armed with my family history, my uncle’s pathology results and the name of the clinic where he was tested, the Drs at the Hereditary Cancer Clinic were able to put the wheels in motion.

Before you sign a piece of paper and give your blood to be tested, the clinic will ensure you have talked to a genetic counsellor.  They aren’t like normal counsellor in any way shape or form.  Their job is to ensure you have enough information about testing, what a positive result means for your risk, its implications and the options that are available if you do test positive.

Then when you are sure you sign a piece of paper and the testing process begins.

It takes about a month (if not less) to get the results. Mine was longer as they were getting my uncle’s blood from the UK and the NHS didn’t make this very easy for them.

Get some support

As a lot of you know I am a stubborn person who is determined to do everything by myself. Looking back I wish I’d sorted my support system a lot sooner. I have great friends, but you need people who get it. It didn’t help for me that I broke up with my boyfriend and got made redundant couple of days before I got my results.

Pink Hope are the Australian charity that helps women with both support and resources and I have met amazing people through them who told me things I needed to know, but would have never asked.

Other Facebook groups I’m a member of are called Previvors and the BRCA Sisterhood group.  These are closed groups and you may have to explain why you are qualified to join. I would say, these groups are brilliant, but I am glad I didn’t join these particular groups until I was ready to have my preventative mastectomy. Culturally American groups are very different from Aussie and UK groups – we are a lot more conservative and less likely to share so honestly, or visually. This is brilliant for when you’re going into surgery, but at the BRCA testing stage I’m not sure how helpful it is to see women’s reconstructed breasts. The ‘freak-out’ potential is a little too much.

I started seeing someone professionally following my diagnosis. I only went a few times but I do think it was useful to help try to process everything.

Results day

Take someone with you and get them to drive you.

Despite having broken up with Mr F a couple of days before the test, he was the person I wanted to come with me.  Go figure huh.

Just having someone there immediately after helps avoid those feelings of despair and the opportunity to overthink.  We went and had a lot of wine and spoke about everything other than my new BRCA status and our relationship.

A positive result

Remember throughout all of this, you may not test positive.  But if you do, it’s not a death sentence. You need to remember you don’t have cancer and chances are, you may not get it any time soon. Take your time deciding what you do next and like I said, lean on everyone you can for support.

Resources

–          http://www.australianprescriber.com/magazine/34/2/49/51#.UZoFQ7Vgd2A

–          http://www.genetics.edu.au/Information/Genetics-Fact-Sheets/Cancer-Genes-and-Inherited-Predisposition-Overview-Cancer-Genetics-1-FS47/view

–     http://www.genetics.edu.au/Information/PublicationsBrochuresandPamphlets/Genetic%20Tests%20for%20Breast%20and%20Ovarian%20Cancer%20Decision%20Aid

–          http://pinkhope.org.au/

–          http://www.mydestiny-us.com/

On the TV

So as promised, here is me, talking about Angelina Jolie‘s BRCA mutation and mastectomy, as well as my own experience as a carrier of the BRCA2 mutation, on TV. 

Please don’t judge my initial stuttering or how my chest gets blotchy towards the end of the interview. I also apologise in hindsight to the reporter for seemingly arguing with him about the statement he makes on whether people would get on a plane if there was an 80% chance of it crashing.  It’s clear I haven’t actually listened to what he is saying and just respond how I want to. But look, that’s the key to effective media relations and a tactic politicians use all the time so I’m not too worried about it.