Have just had a very long and helpful chat with a breast surgeon about future surgery options for me. Brief history is I am 43 and I was diagnosed in Sept with grade 1 fairly small invasive breast cancer but with larger DCIS (15mm and 43mm respectively). Er/pr positive but Her2 negative. No node involvement. My treatment so far has been WLE which was successful. Am due to start tamoxifen and then radiotherapy in New Year.
I am (like everyone) very scared of recurrence and/or new cancer. Have had repeated reassurance that survival for lumpectomy and radio is same as mastectomy and told today that latest research indicates that recurrence rate for lumpectomy is now no higher than mastectomy.
I feel like I have a window of time to act now though as doctor says reconstruction after radio is much trickier…and need to ideally start radio within 12 weeks of op to be most effective.
What would you do/have you done in my shoes? I am going to get some genetic testing done privately and may go to see a clinical psychologist which might inform my decision. Will getting rid of my boobs worsen my quality of life or will living with the worry be the bigger problem. I just don’t know what to do!
I am glad to hear you’ve had a helpful conversation with a breast surgeon about future options. It’s no wonder you feel uncertain about what decisions to take at this time.
I am sure that the wonderful forum members will share their wisdom. We’re thinking of you and I hope you find the clarity you are looking for.
From my own experience I can say that recurrence after reconstruction is higher. I wish I had your choice. I went down the reconstruction route and eventually, was very pleased when the implant was removed (because of the recurrence). I didn’t have a choice of lumpectomy, I wish I had. But please this is only my story and everyone’s situation is different, the decision is a hard one for everyone. Hope it goes well. x
Hi Miriam. I am sorry to hear about your recurrence and hope you are doing well now. Because I have already had the lumpectomy, I am not sure that my risk will go up with mastectomy and reconstruction. From what I have heard my risk is the same
…it is primarily the fear of another cancer that I am really scared of. Part of me just wants rid of them to not worry. I am not sure whether that is just too drastic. I am struggling both ways with the ‘what ifs’…
I’m in a similar position of deciding how to go forward with surgery… it’s great we have options but it’s also so confusing. I used the someone like me service and spoke to someone who had gone through similar circumstances a couple of years ago with the same subtype of BC. I asked her how she made her decision and she told her surgeon she didn’t want to be given options, she wanted to be told what would be the best medical option to give her her best chances. It really helped me mentally to actually speak to someone who had gone through the same treatment plan that I’m on. Though I haven’t made a decision, it’s given me a lot more questions for my surgeon on our next appointment and it’s definitely helped me start narrowing down what I want the outcome to be and how I want to feel afterwards. If you have the time to use the service I would highly recommend it.
Hi, I am also 43 and having my Lumpectomy tomorrow. I also have a small grade 1 HR + HER2 - Cancer.
I am very keen to have a double mastectomy as a preventative measure I do not want to go through this again and will take whatever % it gives me to stop this.
I have no wish for reconstruction just want them gone. Sadly I haven’t had any positive discussions with my team as all they see is an emotional women who doesn’t know what she wants and they know best… I currently feel I’m a non person with cancer on a conveyor belt and have absolutely no say or choice in what treatment I have.
I have very valid reasons why I want my Breasts removed. I will most likely have to pay for this privately along with the generic tests you also mention.
I’m also extremely worried about reacurrance but I’m also aware that I have extremely dense lumpy painful breasts and the ongoing stress this will cauae me going forward. My Breasts are so dense that in August 2023 my cancer wasn’t seen on the mammogram and was missed. It didn’t show up this time either so having them removed will also get rid of this concern too.
I will be having a mastectomy after my Lumpectomy as soon as I am over all my treatment.
Good luck for tomorrow. Honestly you sound exactly like me. I did go ahead with gene testing that came back normal. The problem I had was I had consultations with 3 different breast surgeons (I paid to speak to 2 privately) and they basically all refused to perform a mastectomy as they deemed it unethical for me. This initially put me into a tailspin. I just wanted to prepare you for that. I wrote down all of my fears and questions and grilled my doctor. After I got good news on the gene testing and after MANY conversations and some counselling I decided to stick with the lumpectomy and radiotherapy plan. It hasn’t been an easy process mentally at all - like you my tumour didn’t show on mammogram at all which isn’t very reassuring but I have been promised MRIs for at least the next 2 years. I have made peace with the decision now though. Happy to message more if it helps once you are feeling better post-op. Whatever you end up doing, this operation is a massive positive step forward at getting rid of this horrid thing. Take care xxx
