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saffygirlsaffygirl Gympie QLDMember Posts: 7
I have been diagnosed with stage 1 IDC. I had a lumpectomy right breast on the 11th Nov. Then they told me it was  a grade 3 tumor and a mastectomy was their recommended choice or plan b was to have 2d surgery to remove more tissue. I refused mastectomy and are now considering 2d option with radiation in 6/8 weeks time but I have implants (2006) and am trying to decide whether to have the right implant removed before radiation or wait and see what happens. I cant find any info on removal of implants prior to radiation and anything about the impact of that surgery itself. Feeling a little lost and confused.



  • FLCloverFLClover Sydney Member Posts: 1,439
    Hello, I’m obviously not an expert, but from what I’ve read and been told by breast specialists, radiation has a very negative impact on breast implants. I had radiation on expanders, and have waited over a year to have them exchanged to implants. Plus, the advice is to have the implants changed every 10 years or so. Talk to your surgeon about maybe having an exchange after radiation, if the need arises. They should know what the best option is. 
    Good luck 💜
  • saffygirlsaffygirl Gympie QLDMember Posts: 7
    Thank you for replying. Im still very ignorant about what is happening to me at the moment and have times of being really overwhelmed with information .....and then fear about lack of information. Making decisions with the long term repercussions in mind is so hard and confusing. Finding someone to talk to with the relevant knowledge is difficult as well.
    we all have such a hard row to hoe I think. 
  • AfraserAfraser MelbourneMember Posts: 3,884
    Dear @saffygirl

    Ate you able to take someone else with you to discussions? It frequently helps to have someone else who is better equipped, just at the moment, to take things in and ask pertinent questions. Can you make a list of questions to discuss with your surgeon? It would be good to have clear information on the 2nd surgery and radiation requirements as soon as you can. Do you have a breast care nurse to assist you? Best wishes. 
  • FLCloverFLClover Sydney Member Posts: 1,439
    Yes @saffygirl, we do 😕. Almost 2 years later and I’m still confused about what recon I want, if any at all. A lot of the time we’re forced to make really hard decisions in a rush. Then there’s the info overload as you said, which is a lot to take in, and it seems to never stop, so we end up feeling like we know nothing. Incredibly hard to go through. Just take it slowly though, don’t allow yourself to be too rushed, and ask your doctors as many questions as you need, and repeat them until you understand. They know all that info, we don’t. Once is not enough to remember and understand it, especially in our state. Also, get a second opinion if you’re not satisfied with the current doctors/answers. It’s your body, do what you feel is best for it. 
  • saffygirlsaffygirl Gympie QLDMember Posts: 7
    I have a great Breast Care Nurse who I can contact about anything any time. She probably knows more than the surgeon...but when you are in the system its hard to know if everyone has YOUR best interests at heart and that other influences are not driving their decisions about your body...your life. I hate  to be cynical but Ive had conflicting comments from surgeon and it does my head in. After my lumpectomy he said he got it all.  Then when they tested or whatever they do to the tumor it was a grade 3 aggressive cancer and they threw the mastectomy bomb at  me....and the chemo.... after that the mastectomy was the preferred option... with the second option more surgery to remove more tissue. Last time i saw him he told me again he got all the cancer and now I'm confused again about the reason for 2d surgery at all....and why not just get on with the radiation and maybe down the track hormone therapy. Aaaaaaahhhhh its too much to think about and make the best decision. This stuff is really hard.
  • iserbrowniserbrown Regional VictoriaMember Posts: 5,028
    There's a lot to take in.  Pathology as a result of surgery will give a true picture.   Clear margins are what they are chasing 

    What type of Breast Cancer do you have?

    Here's some links from the BCNA website to help you



  • FLCloverFLClover Sydney Member Posts: 1,439
    Yeah, definitely conflicting info from your doctor. Very frustrating. I really do think you should get a second opinion. It’s too important to be confused. 
  • StrongCoffeeStrongCoffee Member Posts: 109
    My surgeon explained that they cannot 'see' the cancer during surgery - it just looks like the rest of the breast. So, if I hadn't had an MRI scan, he could have performed a lumpectomy removing the 10mm of tissue around the DCIS microcalcifications which showed on my mamogram and thought he'd got it all. The MRI showed the IDC was 35mm, expanding well beyond the DCIS, but not everyone is offered/can afford ($700 out of pocket) an MRI prior to surgery. Without it, my experience would probably have been exactly like yours. Small lumpectomy revealing much bigger surgery needed.

    I'd ask on here for recommendations for a plastic surgeon specialising in reconstruction and talk to them. They will know all the ins and outs of the risks to implants from radiotherapy. You may even find that you lose enough breast tissue that you'll want a slighter larger implant on that side after everything, and they can talk you through how all that can work.

    I was very happy with both my Melbourne based surgeon's (breast and plastic - I had a mastectomy with immediate implant recon) if that is where you are based.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,120
    Sorry to see you here, @saffygirl - but you are in the right spot for support and info from those who've gone before you.

    Your medical team will definitely be making decisions that they believe will give you not only the best visual outcome, but also hopefully, no recurrence in the future (tho sadly, this can never be guaranteed.)

    Definitely chat with your breast care nurse about it - they often explain things in 'simpler English' than the surgeon.

    The aggressive cancers can be the 'really sneaky ones' - that don't always present as a lump/tumour .... but can also have 'legs' that spread out & infiltrate other areas.   Grade 3 is on the 'not so nice' end of results, hence them suggesting the mastectomy/2nd surgery and/or chemo as well as radiation.

    Getting the 'clear margins' (as mentioned by @iserbrown) is what the surgeon is trying to achieve - having 'clean flesh' around the removed tumour site, as it is a better insurance against recurrence.   If you think of it like a tomato - if there is a 'BIG off bit' - depending on the size, you'd throw out the whole tomato - as most of the tomato would not be edible.  If it was only a small spot - you'd cut it out & eat the rest of the tomato - but if you haven't cut enough out - you will still taste the remains of the 'off bit'  .... which shows you didn't cut enough off ....  In a way, your Boob is the same.  Quite a few of our members have had to go back for a 2nd surgery to get clearer margins - for peace of mind.  

    Maybe tomorrow, call the helpline here & have a chat with them? (The phone number is in the blue line at the top of the page.)  They may be able to explain it better than us.

    Whereabouts are you? If you add your town/city to your Profile, members in the area may be able to point you to specific services available to you.

    As well as taking a buddy with you to your appointments, consider taping the appts on your phone too, so that you can go over it again later, for clarification.  It is easy to miss bits, as it is all a tad stressful.   

    Ultimately, it is your decision & you have to be happy with what you go with.  xx

    take care & all the best xx
  • saffygirlsaffygirl Gympie QLDMember Posts: 7
    Thank you all for your comments and suggestions.   I was having a bad day that day...being told it was a grade 3 tumor was just as big a shock as the original diagnosis I think. I have spoken to my Breast care nurse again and was told that the tumor was laying on the capsule surrounding the implant and the implant was in the way of taking out more tissue during surgery. So they are going to go back in and remove the implant and take more tissue of the surrounds and capsule. I'm assuming there wont be much left of the breast but skin and nipple...but its my skin and nipple so I'll take it. Its the 2 weeks wait that is messing with my head even though I'm working like a demon and trying to keep busy. It helps a lot to talk out my thoughts on here. Sometimes I'm overwhelmed with the need to talk about it all to someone. Thank you all so much.
  • June1952June1952 Regional VictoriaMember Posts: 1,435
    Thank you @saffygirl for the update as we have been thinking of you.
    Yes, sometimes we need to just vent a bit to someone not close to us and this site is great for that.
    Good, too, that you have put your location as maybe there are others near to you.
    All the best for the next chapter of this BC saga.  💖  (The word "journey" seems somehow wrong as I think of a journey as being something fun).
  • arpiearpie Mid North Coast, NSWMember Posts: 6,120
    Good to know that you have a plan and that you are comfy with it ... all the best  xx.

    Gympie ... not far from Nambour?  I lived there as a kid!  ;)  I know we have a heap of Qld members - not sure who is near Gympie tho.  I know there are quite a few on the Sunshine Coast, Gold Coast & Brisbane areas tho .... 

    Yep, the waiting really sucks!   This disease really does muck with your brain as much as your body. :(  

    Keeping busy is good xx.  Take care
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