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New Diagnosis - DCIS - trying to decide on which surgery to have

BelindaGBelindaG Member Posts: 1 New Member
Hi Everyone, I'm new here and it's so lovely to see the support here.

I was diagnosed last month with non-invasive DCIS and now need to have a mastectomy (I have very small breasts so there's basically nothing to save).

I'm 39 and have no family history, so I don't have any friends or family who have been through this. My friends and family have been incredible and supportive but there's noone who can even grasp what I'm going through.

My surgeon is happy to support a double mastectomy because it's a high grade cancer and they couldn't see it in ultrasounds or mammogram as I have dense breasts. At this stage they don't think I will need radiation etc.

I'm also a candidate for mastectomy and reconstruction in one surgery.

I'm finding it almost impossible to decide between have one breast removed or both. I'm worried about my breasts becoming uneven as I move through the next 40 odd years with one implant and one real breast, but also worried about removing both breasts and the impact that it might have on intimacy with my partner.

I'm also absolutely terrified of the recovery time and any possible complications with reconstruction as my kids are only 6 & 8.

Would love to hear others experiences who have been in a similar situation.

Thank you xx

Comments

  • arpiearpie Mid North Coast, NSWMember Posts: 4,580
    Hi @BelindaG - SO sorry to see you here, but Welcome to the club that no-one really wants to join!  Make sure you stay away from Dr Google, as everyone's case is different & a lot of the stuff that pops up with searches is often old & out of date (and downright scary!)

    Try not to get too scared about recovery time etc ..... barring complications, many recover fairly quickly & are surprised that (barring lifting/doing heavy stuff) that they 'get back to life' fairly quickly.  Once it is 'out', a HUGE burden is lifted from your shoulders ..... I had a 'mini recon' done during surgery (shifting some fat around) so didn't have a 'large' procedure - I am sure others will jump on & give you their stories soon xx

    Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you.  Nothing is off limits.  We have ‘private groups’ for some more personal discussions - a Young Women's Group and choosing reconstruction (and others) .... so feel free to join any of them, if they suit you.

    Whereabouts are you?  You can add your town/state in your Profile - as other members may live nearby & be able to point you to various services in your area.

    We all know the absolute turmoil that comes with the bc diagnosis .... specially after a ‘clear mammogram’ and no family history. This was also my story and like you, I have dense breast tissue, so mine wasn't found on MG or obvious on Ultrasound either.  My MG was clear just months before my wonderful GP found it, by accident!  I had lumpectomy, Rads and now on AI Tabs.  Mine was Invasive Lobular.

    If you can, take someone with you to your appointments for support - as it can be daunting sitting there alone.  A 2nd set of ears also picks up points raised that you may have missed - and ask relevant questions too (as did my Sister in Law with me.) Also, consider recording your meetings on your mobile - so that you can go over it again later, if you have to, to query a statement, or just to have as a record.

    Your whole world is turned upside down in a millisecond, as you navigate unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this .... and it may take a year or two for your life to settle down.

    It is totally 100% ok to skip between anger, denial, sadness - but if your find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you ... or your local Breast Cancer Centre May have help there .... where you are more likely to find a bc specific psychologist.  Just talking about it openly and sharing it with a professional should be able to give you coping mechanisms ... 

    You will make new friends who will support you (specially on this forum) and may lose some old ones, who just do not understand what you are going thru. Most of us here, have found wonderful friends within the group and have even met up with them in ‘real life’ before this Covid thing! 

    Personally I found that it mucked with my BRAIN more than anything else! I've found that Keeping BUSY doing things is the secret .... get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before.  

    Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
    https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
    If you are into arts & crafts, we have a 'Creative Corner' 
    https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
     and if into your garden, a Gardening post as well!! 
    https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078

    We have some posts here on what to take with you to hospital, to make it 'easier' on you.  
    https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1

    and for your annual checkups/followup appts, here are some ‘tick sheets’ to help you put your questions together for your medical team.
    https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest

    Take care - all the best with your appointments xx
  • June1952June1952 Member Posts: 1,023
    @BelindaG - sending you a private message
  • FLCloverFLClover Sydney Member Posts: 843
    Hi @BelindaG
    I was diagnosed in Feb this year, also at the age of 39, with no family history. In the beginning, my surgeon suspected DCIS, but it was bilateral and multifocal in the right breast, and the MRI before surgery showed other changes, so we agreed on double mastectomy. I have larger breasts, around a D cup, so there was plenty to lose, but I had a nipple and skin sparing mastectomy on both with immediate insertion of tissue expanders, for later reconstruction. I didn’t get immediate implants in case I ended up needing radiation (which I did) and that would have done damage to the implants. Post surgery pathology showed it was IDC but luckily stage 1, and relatively low grade. I skipped chemo. I’m sort of glad that both my breasts got the same treatment, because as you say, otherwise it might’ve felt weird with one breast one way, and the other another. Plus, I will worry a lot less about getting it in the other, as it already happened 😆, and also because the tissue is all gone now. I’m hoping that, plus the radiation, is enough to keep it away for good 🤞🤞. I can’t say I was happy to lose my breasts, or at least the inside of them, because I’m not. I just wanted the tumours out in the beginning so really wanted the surgery, but now I miss them quite a bit, or at least the way they felt. In terms of recovery, I recovered quite well and quickly from my main surgery. It was annoying at first with all the drains and getting used to the tissue expanders, but after a month I pretty much felt ok again. Now I’m doing pretty well physically. My daughter was 7 when I was diagnosed so also pretty small. She’s been great through the whole thing, but I understand the whole being scared for her thing. I’ve been seeing a psychologist about  the whole thing and she has helped immensely, so I would highly recommend one. But be careful it’s the right fit, as my first psychologist told me that he understood me being sad and wanting to be here to raise my daughter, but that she’d be ‘just fine without me’. She’d ‘get over it and live a happy life’. My current psychologist has apologised on his behalf for those comments. 
    Now, almost a year later, I’m 40, daughter is 8, and we are happier than ever ☺️. I’m on monthly Zoladex injections for artificial menopause and take daily Letrozole as my cancer was hormone receptive. I have a couple side effects but managing well, I like to think. 
    Good luck and ask more questions if you need to 😊🍀♥️
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