I was diagnosed with IDC on 11/12/13, with 2 separate tumours in my right breast. I underwent a lumpectomy on 6/1/14. A visit to the surgeon yesterday yielded results that I was not prepared for. The tumours were spread over an area of 7cm, with margins that were only 3mm. The surgeon was not happy with the clearance and recommended mastectomy based upon the amount of remaining breast tissue. She then went further to tell me that while my left breast is currently cancer free, there are indicators that are pre-cancerous and it will be likely to become problematic in the future. She recommended mastectomy to be on the safe side. I am scehduled to have bilateral mastectomy done on 20/1/13 and I am so worried. I'm wanting some ideas about the effect it may have on me - I do know that I cannot work for at least a month and that reconstruction is not an option until further treatment has finished. I'm also worried for my husband and son. Any advice or guidance that you could give would be wonderful. Thanks in advance!

So sorry that you are facing this, but welcome to this network and I hope that there will be some ladies who have had bilateral mastectomies without immediate reconstruction who can tell you of their experiences. I had a left mastectomy due to a 3cm IDC and 3cm area of DCIS. Like you I was unable to have immediate reconstruction due to chemo and radiation being part of my required treatment. Firstly, it was my experience that it was surprisingly not that painful. I had some issues with swelling but was healed and able to start chemo within 3 weeks. My husband has been wonderful about it and we were all just glad that the cancer was gone and that with chemo etc there is every reason to think that that will be the end of it. I had my mastectomy in May and have finished chemo and radiation 2 months ago. I feel very well and am enjoying a new lease on life. Hazel is right that the absolute best advice is just to take it one step at a time. The most important thing is to do what needs to be done to get well and stay well. It is natural to worry about how your husband and son will handle things but I found my family just wanted to do all they could to support me. Letting them help helps them to cope with it all. This is one time when you just need to put yourself first. As Hazel has said, there are some great resources for partners available through BCNA. There is also some great info on how to handle things with children. Do you have your My Journey Kit yet? I hope that everything goes well with your surgery. Just remember that when you wake up, the cancer will be gone. Everything else will sort out. If you have questions as you go along, there are many ladies on here who will do their best to help you through everything. Let us know how you go. Take care. Deanne xxxx

Hi again Just noticed your user name ends with 2259 If that happens to be your postcode my postcode is 2258 and I live at ourimbah and would be happy to meet up for a coffee and chat so let me know Mel :)

Hi Karen, I am glad you found your way here and it looks like the amazing women who make up the online network are already sharing their experiences and offering you support - I hope this helps to ease your worry! As Hazel mentioned above, there are some really useful resources on our website. See some links I thought you would find helpful: You can download Fact sheets and Booklets from our website including a new resource for Partners - http://www.bcna.org.au/fact-sheets-and-booklets I am not sure how old your son is - but it might be worth looking at Canteen's website. They have a specific section for dealing with a parents diagnosis of cancer -- http://www.canteen.org.au/cancer-in-my-family/mum-or-dad-has-cancer/ If your colleagues or friends have any questions you might find this booklet helpful - http://www.bcna.org.au/new-diagnosis/helping-friend-or-colleague-breast-cancer There is also a specific section on our website for surgery - http://www.bcna.org.au/new-diagnosis/treatment/surgery This is a blog post I always go back to - I think it has some really practical info straight from those who have been there - 'What has helped you through your journey': http://www.bcna.org.au/user/9176/blog/28978 I could go on, but I don't want to overwhelm you with too much information. So, when you are really ask as many questions as you like and shout if you need a hand finding your way around. ~Daina

Karen, our lovely Daina, BCNA online network coordinator has given you some great links especially the last one on the blog, "What has helped you through your journey?"There is also another one which Mich (a wonderful, inspiring woman from WA) posted recently that has brought a lot of us good feelings of hope and I hope it will for you too. It's called "What helps you when you are down or stressed" and here is that link. http://www.bcna.org.au/user/8430/blog/70425 I hope we having overloaded you with too much information Karen. Please let us know if we can help further. Janey xxx

I too started with a lumpectomy but they did not get it all and was told I could have another lumpectomy of mastectomy. To avoid having to go back and forth I got the mastectomy on one side. Having worn a prosthesis for two years (the time has gone very quickly) I am totaly sick of it. Honestly I did not notice it so much during recovery but now I am better I am ready to have two new boobs as the one I have left is very large so off with it too. They are working on better reconstructions and I am looking into it. Problems from Radiotherapy damage is sometimes the bigger problem. Talk to your oncologist who should make it clear by presenting you with percentages of benefits from procedures you can choose then the surgeon. I considered most things that would prolong my life, the quality has not changed much, those who stuck by me I appreciate ten fold those who have not have lost my respect. Just some food for thought. Love Chrisy

Bilateral mastectomy | BCNA Online Network

24 Replies

Melg
Member
12 years ago
Hi again Just noticed your user name ends with 2259 If that happens to be your postcode my postcode is 2258 and I live at ourimbah and would be happy to meet up for a coffee and chat so let me know Mel :)
Deanne
Member
12 years ago
So sorry that you are facing this, but welcome to this network and I hope that there will be some ladies who have had bilateral mastectomies without immediate reconstruction who can tell you of their experiences. I had a left mastectomy due to a 3cm IDC and 3cm area of DCIS. Like you I was unable to have immediate reconstruction due to chemo and radiation being part of my required treatment. Firstly, it was my experience that it was surprisingly not that painful. I had some issues with swelling but was healed and able to start chemo within 3 weeks. My husband has been wonderful about it and we were all just glad that the cancer was gone and that with chemo etc there is every reason to think that that will be the end of it. I had my mastectomy in May and have finished chemo and radiation 2 months ago. I feel very well and am enjoying a new lease on life. Hazel is right that the absolute best advice is just to take it one step at a time. The most important thing is to do what needs to be done to get well and stay well. It is natural to worry about how your husband and son will handle things but I found my family just wanted to do all they could to support me. Letting them help helps them to cope with it all. This is one time when you just need to put yourself first. As Hazel has said, there are some great resources for partners available through BCNA. There is also some great info on how to handle things with children. Do you have your My Journey Kit yet? I hope that everything goes well with your surgery. Just remember that when you wake up, the cancer will be gone. Everything else will sort out. If you have questions as you go along, there are many ladies on here who will do their best to help you through everything. Let us know how you go. Take care. Deanne xxxx

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Bilateral mastectomy

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