So scared to have mastectomy - feel I wont be ME anymore

Hi.

I’ve recently been diagnosed with DCIS in two parts of my breast so I need a mastectomy.  When they first tell you its OK its “just” DCIS - you think that’s good.  Then they follow it up with but it means a mastectomy.  Was quite a shock.  I just can’t get my head around loosing my breast.  I am in discussion with a consultant about instant reconstruction and have chosen a DIEP.  But there is only a certain size they can reproduce so will also mean a reduction in the other breast at some point.  I’m in such turmoil and there just doesn’t seem to be any support.  Consultants view seems to be - its not serious so just be grateful for what breast we will be able to give you.  The thought of loosing all sensitivity scares me.  The thought of looking so different scares me.  That side of my relationship is hard enough as it is, without adding this into the mix.  Has anyone else felt like this ? Has anyone had a DIEP was it OK ?  Thank you.

So sorry you’re going through this, Jem. It’s awful, such a shock, and I totally agree that the attitudes tend to come across as ‘be grateful we’re curing you’ regardless of the body image issues, and the support doesn’t feel there from the medical side. I’m glad you’ve been able to reach out here. Do you have something like a Maggies near by, they can be great in these situations.

Following my diagnosis, just as the whole world was going into lockdown in 2020, I had such similar feelings about a mastectomy. I woke up crying every morning for over 2 months trying to make the decision to go through with it. And honestly, I am so glad I did it - feels like a no brainer in hindsight.

Like you, I was ‘too big’ for reconstruction to match my old size. Mine was a bilateral mastectomy, January last year, so it wasn’t about matching the other side. However, I had to have a reduction beforehand - and going from a 34H to a 34DD was actually a huge relief! I had immediate implant recon, and sure it all took a while to get used to, but now they feel very normal, very ‘me’, and I really like the perky new look.

When something like this happens, I think your mind - over time - adjusts to the ‘new normal’, if you let it. It won’t be the same, but it’ll still be you.

Do reach out if you have any more questions about anything, and take care of yourself xx

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It’s is just rubbish isn’t it?  This has been my experience.  Same diagnosis on 3rd December last year and i had my mastectomy a week ago.  I was in bits initially.  It was just so shocking.  I couldn’t imagine how I could be expected to be able to do this.  But the brain is an amazing thing.  Everyday it processes the trauma a little bit more and then it starts to be less shocking.  By the time it was my op day, I was focussed and calm.  The op was simple and the pain was not bad.  I am very capable of liking my adapted body.  So far so good.  I’m surprised how quickly I have got used to it.  I don’t mind seeing it.  I thought I would but I don’t.  It doesn’t feel like my new normal just yet.  It is weird of course as it is a massive change.  But I have hopefully just gone through something that has saved my life.  I don’t mind having a scar to signify what I have endured for survival.  I am staying flat.  I wanted this process to be kept simple.  The surgery has gone well.  I asked my surgeon for a good scar for staying flat and I think he has done a good job.  I don’t want anything more.  What I would have wanted would have been to keep the same, but that isn’t on offer so I have decided to embrace the change.  I have spent a lot of time looking at social media of awesome women who have embraced looking different.  I found them so inspirational and they have helped so much.  instagram.com/idontneedtwo/ instagram.com/trineamazon/ .  I won’t be the same person as before.  I will be an evolved version of myself.  So far, not so different after all.  My focus is now on my results appointment.  If I get the news that all is as they hoped and I get to leave the cancer world as quick as I have arrived I will see the loss of a breast as worth it.  I want all the years I can get.  

I am sorry for all you are going through.  I found the lack of support difficult too.  At time it felt like it was being treated like a wisdom tooth removal or similar.  Try and have some regular contact with a breast cancer nurse.  I called her a few times with some specific questions and found it helpful.  

I feel the same! I haven’t had the Mastectomy yet but it’s a big shock! Tomorrow meeting with the consultant…