Just diagnosed

Claudia21Claudia21 Member Posts: 6
Hi I've just received results for core need biopsy (DCIS intermediate grade) and am seeing a breast surgeon later this week.  It's a lonely and daunting time and I thank the ladies on here for your advice and knowledge. Obviously from reading posts on this forum I understand that the next (surgical biopsy) might show a different picture and different treatment path. But at this stage, based on what I do know, I wondered if any Brisbane-based ladies found a good oncoplastic surgeon who did a good job with the lumpectomy?  And whether those with DCIS have done ok with the lumpectomy + rads or ultimately needed mastectomy due to biopsy results or recurrence? thanks in advance
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  • iserbrowniserbrown Member Posts: 1,643
    @Claudia21 ; welcome to the forum!  It is a place none of us really want to be but it certainly gives us comfort at any time of day or night.  We know when we are on here either reading a post, writing a post or responding to a post, we all get it!  We understand where you are at and your curiosity of what is coming next!
     
    If you use this link you can then click on the type that is relevant to you - this is information that is available on the BCNA website  https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

    As to surgeon, I'm not from Brisbane but I am sure as they day goes on someone from your end of the country will come along with advice.

    In the meantime have you received your My Journey Kit?  It is a wealth of information for now and as you settle into treatment and or surgery it is a guide to help you along, as well as keepings notes, track of appointments, expenses and so it goes  
    https://www.bcna.org.au/understanding-breast-cancer/my-journey-kit/

    Wishing you wellness as you navigate your way through.  Take care x
  • Molly001Molly001 Member Posts: 293
    Hi @claudia21 and welcome. It is a daunting and lonely time early on but you'll feel more in control and get more determined once you start treatment. I had a mastectomy, chemo and rads, so can't help you with your lumpectomy question. Your breast surgeon or nurse should be able to answer questions or some other lovely ladies may jump on and share their experiences. This is a great place for questions and clarity!
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,077
    hi @Claudia21

    have you been in touch with a breast care nurse yet ? 
    here is a link to find them in your area .
    https//www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

    I had a bilateral mastectomy so can't answer the lumpectomy questions, I am sure once members read your post as the afternoon continues you will have more replies from those closer to you and able to answer those questions. 

    SoldierCrab

  • kezmusckezmusc Member Posts: 30
    Hi Claudia,  Welcome, you'll get some incredibly helpful information from the beautiful ladies on here. As far as the lumpectomy goes it can depend on the size of the tumour v size of breast as to how cosmetically good the lumpectomy will be and if it can be done. Your surgeon will discuss all that with you.

     I had a lumpectomy (25mm stage 2 tumour vs 14 C breasts) and level 2 lymph node clearance. (5/24 postive) + 6mths chemo + 6 weeks radiation.  I've just passed the 12 month mark from surgery and all my scans (mammogram, u/sound and MRI,bone scan) have come back clear.  My surgeon was fantastic (he operates at Ipswich both public and private. I'm not sure about Brisbane though.  I did have to go back the week after the original surgery to have a little more removed as when the pathology came back the margins were very close and he wasn't happy leaving them at only 2mm clearance. The scarring from the axillary clearance has faded into hardly noticeable and the breast scar is fading out as well.  There is still  a small seroma left and the skin is a little less soft from the radiation but its improving all the time and is nearly back to normal colour.  I am really happy with the outcome.  Nobody can tell that anything has been done to me from the outside, I can wear all my normal bras (have to be careful where the wire sits though some are better than others).  Even with no shirt on there is only about a 5mm difference in size.  Not bad considering there was nearly 150 grams removed.  I just have one slightly perkier boob than the other. LOL  Absolutely happy with my decision to go the lumpectomy!  All the best.  Message me if you want to talk or the Doctors details.
  • primekprimek Broken HillMember Posts: 3,182
    Hi and welcome. Looks like the ladies have it covered. I thought you might find this helpful in regards to pathology results.

    https://www.bcna.org.au/resource/fact-sheet-breast-cancer-pathology/
  • Claudia21Claudia21 Member Posts: 6
    Thanks for your comments back and you're right -  the bcna resources have been amazing. I think I have read - but definitely not fully absorbed - almost everything that this site has made available. I was doing a far bit of homework before I got my results so I had some clue about 'what next'. Which was good. Because the GP I saw told me nothing about the pathology report that confirmed my worst fears. Her only piece of advice was not to go home and 'Dr Google'. I wanted to shout at her that in the absence of any morsel of information from her I really had no choice. Nor did she direct me to a terrific resource such as this, which I found in the days following my CNB. Such a lost opportunity and terrible way to have cancer entire your life.
  • primekprimek Broken HillMember Posts: 3,182
    I know I had a good handle on it before my breast surgeon appointment which meant I was able take in what he said. Not just be at the shock stage. Reading helped me enormously....mostly. 
  • VallerinaVallerina Member Posts: 64
    Hi claudia. I had high grade dcis. The week b4 lumpectomy i requested mri.much bigger than they thought.  It showed 70 mm high grare dcis . Nambor said sorry we can no longer do lumpectomy its mastectomy for u. 2 days b4 surgery!! I then had to go to royal briz on new referral and wait again. Diagnosed 6th jan had mastectomy on 27th march. Was freaking out at the time. Never heard of dcis had healthy lifestyle etc total shock. I then had aeroform expander 3 months and an implant was put in on 4th july. Didnt get to pick the doctirs as it was public system but totally happy with everything putting it  in perspective. Today i  tried on all my old bra collection (lingerie freak) and i only had to chuck about 6. I was in my bikini swimming in whitsundays on the weekend feeling totally confident. Good thing is pure dcis is not invasive meant no chemo or rads no tamoxifen. I count my blessings every day despite losing my beautifulboob so much to b thankful for. My dcis was huge and aggressive but had not spread. Thank god. I am waiting to go back for a nipple recon now they offered lift of other natural boob to match implant side all on public system but i have decided not to do thatthe difference is minimal. My point is it is a terrible shock i was newly engaged at time ofdiagnosis felt the world was ending but hav now found a new gratitude and come to terms with it all. All private drs i asked for 2nd opinion said public system is best. Hugs vallerina xx
  • Claudia21Claudia21 Member Posts: 6
    Hi Vallerina. Glad to hear you're doing well and thanks for shining some light. I'm looking forward to being at the point you are of acceptance and moving forward.
  • MaryAnnieMaryAnnie Member Posts: 8
    @Vallerina Glad you are doing well and have the mx behind you. I was also diagnosed with high grade DCIS. BS recommended lumpectomy. After lumpectomy, path report came back, actually there were 2 DCIS near each other and I didn't get clear margins. So next day it was back for another surgery. Yesterday I was told I had clear margins. Wonder why no one ever suggested MRI before surgery. Now I am wondering if there are more in there which was left behind.
  • Claudia21Claudia21 Member Posts: 6
    HI MarryAnnie
    It's the unknown that is a concern. What did you treatment team recommend for you post lumpectomy for the DCIS?
  • Claudia21Claudia21 Member Posts: 6
    @Vallerina I wondered knowing what you know now about the journey with your mastectomy (but no rad or hormone therapy) would you have chosen that if you could have done a lumpectomy +/- radiation and hormone therapy? 

  • MaryAnnieMaryAnnie Member Posts: 8
    @Claudia21 Before the lumpectomy, my BS said RT may or may not be required. After first path results post-surgery, it was confirmed DCIS with no signs of micro invasion. 10mm. But I will need RT for 5 weeks.  No need hormone treatment (still don't know why). No need chemo.

    After much thinking and agonising, I have decided not to do the RT. Will do a double mx plus reconstruction due to strong family history of bc and increased risk of recurrence / new primary bc. Will meet with the ps this Monday to discuss the surgery. This morning I had a good cry to say goodbye to my boobs. But I know that this is the right decision. Scared but soldiering on....
  • primekprimek Broken HillMember Posts: 3,182
    @MaryAnnie i had a farewell boobie party and wrote a poem bidding farewell. It was funny and sad as well.
    Food was boob themed. And it was dress up. I had my bras hanging up everywhere and wore something that showed off the girls in all there glory. Just a bit of fun before the big chop. My husband thought it strange...but it helped me and quite frankly got my mind off surgery. I also took nude pics of the girls.  
  • Claudia21Claudia21 Member Posts: 6
    @MaryAnnie  Oh. I know that can't have been easy for you and I hope you have good and caring support around you to embrace you and let you express that grief and fear. XX
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