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First consultation for DCIS - private or public?

FriedeggsFriedeggs Member Posts: 6
edited April 26 in Newly diagnosed
I was diagnosed a few weeks ago with low-grade DCIS, showing up in 2 clusters of microcalcifications on my right friedegg.

All quite sudden given I'm 42 and was expecting to be chased away from BreastScreen NSW telling me it was cysts, which has happened to me previously. Instead, I got the works (mammo, ultrasound, biopsy wootwoot), with the diagnosing doctor recommending a mastectomy because:
1. I'm small (barely a B cup) - so a wide-local excision would leave a "poor cosmetic result"
2. I have a family history of bad boobies - my grandma had a mastectomy in her late-50s, and recently 2 of my cousins (also in their 40s) have had surgery and chemo related to breast cancer.  

So while I'm grateful that it's been spotted early, I'm still reeling from the recommendation of "just-in-case" breast removal, and wondering about "wait-and-see" DCIS trials that are happening in Europe and the US... In any case, when my logical brain can function it's telling me to chill the hell out, and just go see a practising surgeon to get more info. 

My question: I don't have private health insurance due to just moving back home to Sydney, but I am prepared to cover some of the consult costs myself (probably not the surgery... if it's needed) if it's better to meet with a doctor at their own practice. The doctor I'm thinking of seeing (Cindy Mak) operates out of her own consult rooms and the RPA Lifehouse. Does anyone know if it makes any difference which consult rooms you start with? Should I save myself a couple hundred and blow it on much-needed anti-anti-cancer-diet supplies of wine and chocolate?

And any feedback on Cindy Mak or Belinda Chan? 

Thanks in advance ladies.  <3 And sorry if I sound flippant, I'm actually feeling quite blue after starting all this research and need to gee myself up. 

Comments

  • Ausmum2Ausmum2 QueenslandMember Posts: 14
    Hi @Friedeggs
    Welcome from another newbie. I’m post surgical and chemo round #1. 
    I have a mate who was treated through lifehouse and cannot speak more highly of the whole process and team there, so based on her feedback and excellent results I would say save yourself the $$. 
    I’m not in Sydney, so will leave it to more experienced and learned locals to comment on feedback further. 
    I will say however, things changed really rapidly in this first early part. What you think is going on and what test results say and then what gets recommend can change very rapidly. I started with a simple lumpectomy based on first test result and ended up with a double mastectomy, chemo, radio and DNA sequencing (and triple negative grade 3 to boot). i also learned not to google doctor pretty quickly and had the surgeon, oncologist, BCNA team and Breastcare nurse tell me how far things have come in the last 5 years, let alone 10, so the teams considerations would be measured in their recommendations. 
    Breast cancer treatment is a team sport, so build a team you trust (not just a surgeon). The team should case manage you. Personally I find this very very helpful as they consider my case, make recommendations, show me the research about it and I have the save team in infusion, rooms, wards, theatres, radiology etc. 

    Go gently 
  • FLCloverFLClover Sydney Member Posts: 1,197
    Hi @Friedeggs
    I had my surgery at the Lifehouse. Not with the surgeons you mentioned. I changed because I had a very bad experience. The hospital is very nice and the nurses are wonderful, but not all the surgeons are fantastic so choose carefully. 
    The consultant surgeon you see should tell you your options based on your breast size, tumour characteristics etc., so don’t stress too much just yet. Also, you might be able to have a lumpectomy, but if they find more in there than they anticipated you still might need a mastectomy. This is smth we don’t have control over sometimes. 
    Do more research on the surgeons, pick one you trust and see what you can do in terms of payment etc. 
    Good luck! ♥️
  • Julez1958Julez1958 SydneyMember Posts: 130
    Hi there
    i am in a private health fund but still had quite serious out of pocket expenses for my left mastectomy( with insertion of tissue expander in anticipation of reconstruction)  and right breast  reduction.I was at St Vincent’s Private for 6 nights and under the care of both a breast cancer surgeon and a plastic surgeon.
    My care was top class and I love all my Doctors.
    Both my surgeons also operate in St Vincent’s public but if you are a patient there you may not get them and there may be delays for the reconstruction part.
    So I don’t know if that helps or not , I do know a couple of people who had double mastectomies in the public system here in Sydney and were also very happy.
    The other thing is that I started out thinking I was having a lumpectomy but the mri showed the size of the tumour such that a mastectomy was recommended so sometimes things change rather quickly.
  • HallaHalla Travancore, MelbourneMember Posts: 150
    I have top private health cover but they only covered $250 of my $6000 private surgeons bill for lumpectomy. I think I was almost more shocked by that than the diagnosis!! Medicare covered $750. The private health did cover the day surgery hospital costs which would have been around $1400 I think. 

    Having said that, once I adjusted my mind to the huge out of pocket fees, I’m glad I went private. My surgeon saw me within 24 hours of suspect report, she got clear margins and I think a good cosmetic result too. 

    I guess the point is that it didnt make much difference to the cost that I had insurance.
  • FriedeggsFriedeggs Member Posts: 6
    Thanks for all the replies guys! How much do you all rock!? This is such an isolating event, and you/ this forum is helping me feel less alone and fearful, and better armed with info and your shared experiences.

    Cheers so much @Ausmum2 for telling your story. I'm sorry to hear about the escalation over time, but glad you found a good team to work with. I hope I'll find some decent people too. 

    @FLClover - Great to hear reassuring feedback from someone who's used the Lifehouse. Thank you also and I'll reply to your PM after this!

    @Julez1958 - Good to hear other positive feedback about the public system.

    @Halla - My god, I haven't really started looking at all the surgical costs yet but it could come to quite a sickening amount of money. Just glad we're in a country where there is decent public healthcare. 

    And as you all seemed to point out, quite reasonably, it is very early days for me and things can change quite significantly.

    Big hugs to you all from Sydney.  <3
  • Anne65Anne65 Member Posts: 395
    @Friedeggs My diagnosis was pretty much the same as you - stage 1 DCIS but aggresive, left boob & small boobs!! I had a lumpectomy & the surgeon filled in the gap with tissue from just beneath my breast so looks normal as before. She did an amazing job & you wouldnt even know I had any surgery as the small scar is hidden under the breast. 
    i went private & had no out of pocket expenses at all. The entire surgery didnt cost me a cent!! The only cost was for my radiation & i chose to go private so i could select my treatment facility & also the times/days I wanted my appt. & I dont regret it at all. I was so well looked after but I know others who go public, have also had good experiences.
    Sounds like you may be a candidate for genetic testing as you have family history. I went through that also & it is advised to get that done before any radiation as the results may effect your treatment plan as its harder to do recon surgery after rad as the tissue is so damaged. Good luck with it all. love & strength xx
  • BlondyBlondy Ruse Member Posts: 234
    @Halla, paying only $250 is preposterous. Heaven knows we pay enough  that gaps like that  shouldn't be. I remember my surgeon saying I'd be 300 out if pocket with her bill. It never arrived. I rang off and on for months for the bill only to find out that it had been completely covered. I only had a small mount for the anaesthesist 
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