My first post and so confused...

@annie79 - I have been receiving regular treatment for almost eight years and because I opted to go public my only cost has been hospital parking. I've had CT scans, a couple of MRI's, Heart Scans, one radiation treatment and four surgeries. I have access to the hospital's Breast Care Nurse and have had sessions with the physiotherapist. All at no cost. This is thanks to my GP who took time to explain the differences and possible consequences between public and private. BCNA has some very useful information which may help you make your choice.

@annie79 Welcome! We have all been in the fog of confusion and where you are, so it's great youve got some incredible support.

I have a few similarities to you but I am further along..so here goes...at 43 I had DCIS lumpectomy, clear margins, radiation and tamoxifen for 4 years. at 47 my routine mammo/u/sound I had a recurrence in the scar tissue of the previous lumpectomy. I underwent another major lumpectomy together with sentinel node removal. My margins were clear and no node involvement. I had IDC stage 2, grade 3, so I had to have chemo, cant have rads twice, now on Aromasin. post chemo my Oncologist suggested a single mastectomy, I was horrified, it wasnt what I wanted to do EVER!!! I was so frightened and confused and thought why?? anyway I had genetic testing which was negative, so all Specialists agreed a single only was needed.

My Surgeon works closely with a PS, so I had a single mastectomy/diep flap reconstruction in Feb 2017. I couldnt be more happier with the result and the decision. I am now 4yrs clear 2nd diagnosis, I didnt make it that far 1st time. 

All I can say to you is, it's not about anybody else, your loved ones will have opinions but at the end of the day this is about you and your body. It took me a year post treatment to do it, so mine was preventative.

I've always been a private patient but my surgeon also works in public, because I had a recurrence, he was able to put me as priority on his list together with the PS. However, for my revision surgery, he did not do it, but his colleagues which I didnt realise. 

I have zero regrets the path I chose, I had aggressive treatment for DCIS, they have no idea what happened. I could not have done a mastectomy at that point based on my diagnosis. If it had been a more severe diagnosis, however, I wouldnt have hesitated obviously.

All the best, get clear margins, and do what youre comfortable and happy with doing.

Hugs M x

All the best for your surgery @annie79 .... fingers & toes crossed for you xxx

@annie79 . Good luck on the 29th hopefully she gets it all this time.  Only a few days to go . Xx

@annie79 The use of MRIs is very varied. Despite the fact that my mother had breast cancer and my sister died from it, I did not qualifiy for a subsidised one when I was diagnosed. At 51 I was considered too old! My breast surgeon isn't keen on them anyway. In retrospect I wish I'd had one at the start as the mammograms I had failed to detect two areas of DCIS, and I had to have a re-excision for margins. That discovered one of them. If I'd known about the other I'd have bern spared a great deal of agonising about whether or not to have the double mastectomy.

Thereis a great deal of variety across breast cancer treatment. All the docs have their preferences. Of course you can insist on a variety of tests and scans, but it can get expensive, quickly.

It's important to feel comfortable with and trust your breast surgeon and oncologist. They're going to be in your life a long time. K xox

I live in Sydney Metro in the Hills District. It would be very much appreciated if anyone knew some good oncologists, plastic surgeons etc for afterwards

Thank you so very much for all of your stories! I don't feel so alone anymore. 

All your stories have helped me with some decision making and has made me really question my Dr’s intentions. She has offered me the public hospital where she said that it can be done for free but she cannot guarantee it’ll be her that’s doing the surgery. So each and every time she’s said that it confuses us because it’s like she offers it but not with her doing it so we rather not risk the chance and just go private.

I've decided to proceed as usual with widening the margin but I did question my doctor about MRI and why I am not having one. Apparently the MRI won't pick up the cancer cells right now because it'll only pick up the current scarring. I'm wondering why she didn't offer this in the first place. How was I to know that I am supposed to get this done first or I would had suggested it. She used my Mammogram as a diagnostic tool.

Wish me luck on Tuesday 29th! That's when I go in for the second time and fingers xx'd they get it all.

xo

Hello @Annie79. Making these decisions is just dreadful eh? So much to process, under pressure, with everyone's emotional investment and your own distress.

Firstly, there is no need to make a hurried decision. As others have said above, keep asking questions, get a second opinion and keep going until you're satisfied. You can talk to your breast care nurse, call BCNA's hotline on 1800 500 258, or speak to someone at the Cancer Council.

I had a wide local excision, and a week later a re-excision for margins. Subsequently, for a variety of reasons, I had a double mastectomy and immediate reconstruction. I had chemo between the first two operations and the third and it gave me a lot of thinking and questioning time. I have no regrets about my decision. Sadness, but no regrets. It was my decision.

I asked a lot of the medical people what they'd do in my position, and the answers were mixed. However each question asked slowly bought clarification.

Most importantly, most importantly, was listening to my gut. If you need time to step away to listen to yours, make it. It's your body. Odds are you'll be living in it for another 40 or 50 years. You know what you're prepared to do to feel comfortable and happy in the future. You don't want regrets or if onlys, no matter what you decide. Listen to everyone, but mostly listen to yourself. I truly believe you know this instinctively. You just have to be able to hear it.

Big hug, K xox

Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

How to post on the main forum – use this link to get to the main forum and begin a new post. https://onlinenetwork.bcna.org.au/post/discussion

 

Navigating the online community formerly the what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey online tool and other resources. 

My Journey Online Tool resources
https://myjourney.org.au/hp/step5

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

 

How to understand your pathology reports

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

I think that you need to go with what you feel is right based on your surgeon's advice, although I can understand your husband's concern.  I am surprised that your surgeon can't take you as a public patient.  One thing I would ask, though - with the second lumpectomy, how much is going to be taken.  I had a wide excision first and was really happy with the result - was very hard to tell.  However, there were no clear margins on the path report so I had to go back for further surgery.  The surgeon said that he had taken as much the first time as he could with the result being that the breast still looked okay.  So, that was one of the reasons for going the full mastectomy.  That side is still flat as I am undecided about further surgery to reconstruct but he has done a really neat job - I'm guessing because there was enough room for him to do so.  My point is - ask what the resulting breast will look like as that may affect your decision.

Hi @annie79.  Before you take anything I say too seriously you need to know I'm a fully paid up cranky old cynic. I have, however, been on the cancer bus for a long time. So, with that in mind...

Your breast surgeon is only one of many. I don't like the sound of 'If you don't pay ME you may not get such a good result.' You have many other responsibilities and there are excellent practitioners in the public system. This shit can be insanely expensive through the private system. Which is fine, if you can afford it. That she is employing some form of emotional or financial blackmail on you at this stage gets all my bells ringing. Not just bells, claxons of alarm. You don't need that pressure at the moment and, if I am reading the situation correctly, you may be better off dealing with someone who puts your interests first.

Your husband is a different matter.  Some of our folk are really good at putting up links ( @SoldierCrab ) BCNA offers some excellent phone services which can help everyone concerned get their heads around the mess.

If it's any consolation, none of us are ever ready for this. You just have to take it a day at a time and do the best you can. In the end, it's your body and you get the final call. MXX