My first post and so confused...

System Posts: 63
edited January 2019 in Newly diagnosed
This discussion was created from comments split from: DCIS.


  • annie79
    annie79 Member Posts: 2
    Hi All,
    This is my first post...I'm so confused and I have so many issues that need to be addressed.
     I am a 39 year old healthy mother of 2 and I have invasive ductal carcinoma stage 2. I've just had a lumpectomy last week, negative lymph nodes but the margin wasn't clear. We have booked in again to have another go at it.

    My husband is now of the opinion that I should undergo a mastectomy rather than have a second lumpectomy. He's quite adamant. I'm emotionally unprepared to have the whole thing off. 

    My breast surgeon doesn't think a mastectomy is necessary because she thinks she can get it all but cannot guarantee it.

    Has anyone here had that issue where they've had to reopen a third time?

    Not to mention the costs. She can only guarantee she'll do it if we pay for her private services. Where in the public system she said she isn't guaranteed to be the one to do it. So we are extremely out of pocket at the moment because of various issues with our private health fund who won't cover.
  • kitkatb
    kitkatb Member Posts: 442
    edited January 2019
    Hi @annie79 Sorry you have to join us on this forum but it has been a godsend to so many of us. Last year I was also diagnosed with Invasive Ductal Carcinoma stage 3 with no lymph node involvement.  I had my first surgery like you a lumpectomy, then they again widened the safety margins 3 weeks later.  ( this is quite a common thing as they prefer if possible to take the less invasive options.)  I then had an MRI to check everything and it was only then they found high grade DCIS  as well.   I went through the public system and I was very lucky to have a great surgeon who was 1 of 3 who specialised in Breast Surgery. My treatment was then chemo to mop up any stray cancer cells from the grade 3 tumour and then lastly a Mastectomy to deal with the DCIS.  which are just cells in situ not yet graded.  So I was hit with the 3 surgeries last year as with others on this forum.   
    It is very overwhelming when getting bombarded with information we totally get it,as well as the very thought of having a boob off made me want to hide under the doona and never come out.  I did not get a reconstruction but many do have them straight away whereas others wait for 12 months or more.  Have you had an MRI yet.
    There are many on here who have swapped over from private to public for the very reason you talk about so definitely worth looking into. I'm sure there are other lovely ladies here who can advise you on how they did it.   I found ultimately that we have to control what our gut feeling is telling us and arm ourselves with as much well informed information as we can. Have they mentioned Chemo at all. If they do IDC does respond well to chemo.  But just to reassure you I had great treatment on the public system and even my Oncologist is the director of Oncology so absolutely blessed. Wishing you all the best with your decisions.   Any questions at all just ask away.   This is the best place to have a rant and rave and some laughs along the way.  xo

  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    @annie79 - I had lumpectomy, partial mastectomy and then full right sided mastectomy - I think surgeons do try for breast conserving surgery if possible.  
  • arpie
    arpie Member Posts: 7,565
    Gosh @annie79  - that is a tricky decision to make - shame she didn't get the margins the first time.   I am sure others who've had to go down that road will jump on with more advice to help you in your decision making. xx

    Whereabouts are you?  City/town?  Some members are bound to know of other surgeons/resuources in the area that would be available to you .... you can swap between public & private.  I had private surgery & public rads & onc ...... Have you asked her if she DOES do public?  It may just mean a bit of a wait - if you really want her to do the 2nd surgery?

    I was let down by my own health fund - I am about $6,000 out of pocket at this point .... so know how the financial side of things can affect you too  :(  

    All the best - take care xx
  • JulieVT11
    JulieVT11 Member Posts: 90
    I had a mastectomy in November after a couple of weeks of indecision. I had a small tumour and DCIS which were a bit spread out.  Surgeon suggested an MRI so she had a better picture to get clear margins and glad I did as they found more DCIS so it was best to have the mastectomy to get it all.  Only issue was the MRI was over $700 but compared to 2 surgeries etc and all the out of pocket with private health insurance   Huge decision to make but in the end the MRI made it for me and I have no regrets knowing that all the cancer is gone.  Good luck
  • Vallerina
    Vallerina Member Posts: 183
    Hi annie. Sorry you had to join us.
    The thing that struck me in your post is you say you dont want mastectomy and surgeon thinks it isnt necessary. I think you have the answer right there. Go with what feels right to you. Its ur body and its a huge decision . Once the breast is gone u cant get it back and it also isnt a 100% guarantee  .  Have you had an mri. As with kitkatb and julieVT above it was the only way the true extent of  my 7cm dcis was seen. I asked surgeon for referal for and was given a free mri in the public system  right at the initial diagnosis stage and saved the trauma of multiple lumpectomy surgeries. It was easier to accept mastectomy when there was no other alternative. They should do mri as a standard diagnostic test it shows a lot more detail  specially in younger women and others  with dense breasts. They dont do it routinely because it costs more. A lot of women on this site struggle to get free mri in public system.  Im not sure why my surgeon agreed to refer me  but luckily he did and  the follow up clinic i go to has also approved an mri every 12 months on my remaining breast so i know its possible. As you are young and trying to make this awful  choice you seem a perfect candidate for extra diagnostic testing. Good luck with it it really is a scarey and confusing time. Xx
  • Sister
    Sister Member Posts: 4,960
    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.
  • SoldierCrab
    SoldierCrab Member Posts: 3,445

    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.


    Navigating the online community formerly the
    what and how thread.

    Breast Care Nurses 

    My Journey online tool and other resources. 

    My Journey Online Tool 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

  • kmakm
    kmakm Member Posts: 7,974
    edited January 2019
    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
  • annie79
    annie79 Member Posts: 2
    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.


  • kmakm
    kmakm Member Posts: 7,974
    @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
  • Vallerina
    Vallerina Member Posts: 183
    @annie79 . Good luck on the 29th hopefully she gets it all this time.  Only a few days to go . Xx