Hello mcsparkle, I had a right side mastectomy last August after two unsuccessful lumpectomies. I never considered reconstruction and I found a prothesis uncomfortable. It was hard at first to get used to it especially as it was in the summer and I thought it looked odd even in loose summery tops, but as time went on I got used to it and it was only what I saw, not what others could see. I wear a little cami top from a well known store a pack of three for around £12.00 they work well and are comfortable. The first few times you go out you may be self conscious but that will pass. Be confident with your decision,good luck with it all and do not let it define you. JSP
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I’m in pretty much the exact same place as you.
I don’t like the idea of a foreign object in my body, hate the idea of going flat (at least right now) but diep surgery/recovery terrifies me too.
I’ve already spoken to two surgeons and seeing a third tomorrow. I’m supposed to have surgery the beginning of Feb so we’re cutting it fine.
First surgeon doesn’t do reconstruction so it was easy to say I wanted to speak to someone else (I wasn’t fond of him anyway).
Second surgeon I’d done some research and was erring towards delayed reconstruction, with an expander in the meantime, so I could make a decision when I feel my brain may hopefully be working better. The second surgeon just pushed and said he didn’t like expanders and thought I should just get an implant (he tried to say oncologists don’t like them either but my oncologist said that wasn’t true).
I’m hoping this third surgeon listens and is more helpful cos after this I don’t know what to do.
I’m probably open to immediate reconstruction as I am due to have some gynae surgery later in the year which may scar the potential diep area if I have it first (which may mess up reconstruction results). If the surgeon says I can’t have diep after that surgery I’ll probably agree to immediate.
After the last several months dragging with the chemo it’s so stressful everything now feeling so rushed.
Whatever your decision or how you get there, I can’t help (wish I could help myself let alone anyone else) but just know you’re definitely not alone. I wish the surgeons (or at least the ones I’ve met) could just acknowledge what a monumental decision it is, especially after many of us have spent several months being bossed around and told what to do with little to no control and now suddenly the big decision that we have to live with is ours (and sometimes even then it’s poo-pooed by the surgeon).
Stay strong. 
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Morning @mcsparkle
Just seeing how you are? Saw my BN on Monday to talk through some more and I am going with my gut instinct of staying flat with the option of reconstruction at a later date if I want. I think the disruption and recovery times of an immediate recon plus the fact that it would have to be at another hospital over an hour away and with a wait time just doesn’t fit with what I need right now.
Still feeling it’s a huge decision but I think at the moment I am happy with it.
Also this has all been going on since September and frankly emotionally it is exhausting .
I hope the meeting with your surgeon has helped you with your decision xxx
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Thank you all for your replies, it can very like a very lonely time can’t it? So hearing from other people in similar positions really does help. I hope you’re all doing well, it’s great to hear that there are lots of people who are happy with their decision 
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It’s so draining isn’t it @Dramajo? I only found the problem just before Christmas but it already feels like I’ve been going through this for months!!
I met with the plastic surgeon yesterday. I found it really helpful. She talked through the procedure and we discussed some possible side effects / future issues I may have with reconstruction. In terms of the short term, it sounded full on but doable. It’s more the long term complications that worried me. She said that the tummy is usually where issues happen; pain in the immediate future and possibly indefinitely, especially when exercising or stretching, numbness at the scar. She said that the tissue is taken from the lower tummy and so it would flatten that part out but it can make it appear as if any hip fat or higher tummy fat is more pronounced. She also said that the breast would be completely numb so obviously that would take some getting used to. I wonder what everyone’s experience is with numbness? @KChest it’s so good to hear you are happy with the results of your reconstruction, what has your experience been like in terms of feeling/numbness in your breast? If you don’t mind me asking?
One thing the plastic surgeon did say is that if someone isn’t 100% sure about this surgery, they shouldn’t have it. She said that if I told her I was 80% sure, she’d say that wasn’t enough and that I shouldn’t do it, at least right now. I think that’s something for people in a similar position to consider. She also said that mentally she finds patients cope far better with delayed reconstruction (on the whole, obviously everyone is different), because it means they’ve had time to fully consider the options without the stress of a cancer diagnosis hanging over them. She did say that immediate reconstruction had better outcomes aesthetically but that it was a huge operation and so, she feels, it isn’t worth the risks if you’re unsure. If you’re sure you want reconstruction, immediate seems the better option, but for those who are wavering, maybe consider delaying it?
We spoke about the fact that my surgeon wants to conserve my skin and nipple, so a delayed reconstruction would mean losing the nipple which worried me. She told me not to be too concerned with that and said she could create a nipple with skin or a tattoo at a later date if I went for delayed reconstruction. She said the nipple would be numb anyway so it’s simply for the look. She said that reoccurrence chances are higher if the nipple is kept as it is breast tissue in itself. Albeit only a 5% risk. There again, I was considered extremely low risk for developing breast cancer at all, so % don’t mean all that much to me right now. A risk is a risk so that’s worth considering.
I have a very active job that involves lots of movement, and an energetic young child. When she talked about pain with stretching and movement, it set off red flags for me. She also said that it would take at least 5 months to get back to the same kind of activity level I’m at now (hours of activity, 6 days a week), and that I may never fully get back to the same level. At 42, with (hopefully) many years of work ahead of me, I want to very carefully consider that. My job is my passion and something that I’ve worked really hard at.
For me, at least at the moment, I don’t think reconstruction is worth the risks. I am so worried about going flat and how that will feel, but the possible long term effects of reconstruction terrify me more. Knowing that I’ll be completely numb anyway is definitely on mind.
Let’s be honest, noone would actively choose either option if it weren’t for the dreaded cancer! I don’t particularly want to go flat, but I don’t want to put my body through another operation either, especially given the long term risks! So I’m choosing the option that will have the least impact on my body as a whole, and with the least possible complications. It’s not ideal, nothing in this whole situation is, but it’s what is necessary to get rid of the cancer. It feels like the right thing for me and I don’t think I’ll change my mind, but I’m sleeping on it for a day or two, until I see my surgeon again.
Thank you to everyone for sharing your stories, it gives so much comfort knowing that other people are happy with their choices long term.
Good luck to everyone who is having to make this awful decision. I hope we can all make the right choice for us, and feel good about it!
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@mcsparkle that sounds like a very good in depth talk with your surgeon. I too have a very active job which I love so have also taken that into account for recovery and long term effects.
It sounds like you have made your mind up and I have to say, once I had spoken again to my BN and put all the options rationally on the table I feel happy about my decision. I am a very positive person so have decided to embrace it and hopefully over time I will be happy with that decision.
Also on a personal note with 2 grown up boys I would rather be here with 1 boob than not here at all x
Do you have a date yet?
We’ve got this! We can be single boob buddies xxxXxxx
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@dramajo exactly, being here is the most important thing! Of course. It is sometimes hard to focus on that though, when all the options just seem so unappealing ! I do keep having major wobbles. I had a panic attack last night imagining how I’d feel post surgery, I just really freaked out, and I’m worried that’s how I’ll be after the op! No date yet, the surgeon wanted to give me more time but did say he will put a provisional date in for me so that I’m not at the back of the queue. How about you?
I had a rather disheartening discussion with my surgeon today. He told me that if I have a simple mastectomy then I’d be left with ‘an ugly scar’ and said that choosing to stay flat is ‘not an aesthetic option’, but rather a necessity (the reconstruction is for aesthetics) which I can appreciate I guess, but it has really made me worry! How is your surgeon about your decision?
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I’ve been following this discussion since it started but not got round to commenting until now
I have to say that I don’t think your surgeon’s comment was very helpful @mcsparkle It really sounds like he is trying to push you towards reconstruction. I don’t think my scar is ugly. It has mostly faded, it is straight and smooth.
I will say that, in my experience, the Breast Cancer Now leaflet gives slightly the wrong impression about the size of the scar (I have fed this back to them), it is longer than I thought it was going to be. This may be from the surgeon choosing not to make a separate incision to remove the sentinel node.
I had a single sided mastectomy back in 2020 after finding a lump, that turned into a diagnosis of two areas of DCIS. I chose to go flat and don’t wear a prosthetic or even a softie. Honestly people generally don’t notice anything different.
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@scientistamafier I completely agree! I can only go from images, but from what I’ve seen I wouldn’t call them ugly at all! I am really concerned about him saying that. He’s very blunt so I’m not sure if I’m being too sensitive and he’s saying that because he just isn’t a fan of flat closures in general, or if he’s saying that he doesn’t make the effort to make them neat?! Pretty unclear and not sure how to take it honestly!
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I have recently had smx and I was worried how I would feel after surgery. I was surprised how calm I was afterwards and could look at the dressing straight away. It doesn’t help when you are getting negative comments from your surgeon. I found it helped to focus on the positive reasons I chose to go flat. No regrets so far and recovery is going well. Good luck 
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This is exactly how I felt after my double mastectomy, no recon. I was terrified I would be unable to face the scars.
Then I saw these neat little dressings, okay that’s fine, then they came off and I had these little steri strips, they were fine, and then my husband was saying - gosh, the scars look great, so I proper looked when the strips came off and I really didn’t mind. Plus was my surgeon was really supportive and we kept joking that he’d done his best stitching and much better than a plastic surgeon.
Six months on (check up on Monday) and I absolutely love my chest - I was wearing a little string bikini top on holiday in October (could never do that before as they wouldn’t fit 
) and love it.
I think had I had recon I would have been paranoid about feeling lumps. I genuinely can’t remember my chest before.
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Hi @mcsparkle.
It’s so difficult isn’t it. At 47, in a public facing job, i wasnt ready to go flat. They tried lumpectomies and after 3, a masectomy was needed. I had a diep reconstruction with my masectomy. It was only 5 days ago, so I’m very sore, but i feel pleased with how it looks, albeit swollen and raw, and i can see that it looks and feels like my real boob.
Everyone who has posted has their different feelings for their reasons. For me, i wanted to look as much like me as I could because cancer has stolen so much from me - my hair, my social life, my career plans, my finances, my confidence, my breast. I wanted to feel i had some control back and could get back to feeling good. I’m hoping I’m going to be pleased with the results when a few weeks have passed.
Whatever you decide, good luck and keep us posted. X
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I think your surgeon’s comments were extremely unhelpful!
I am seeing my surgeon on Friday so will update you x
Hope you are ok, I know exactly how you are feeling, I was saying to my sister that I have absolutely no doubt about the mastectomy, just want to make sure my decision for afterwards is informed and right. Xx
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Thank you @bluesatsuma that’s what’s so hard isn’t it? Thank you for sharing your story. It’s such a personal decision and everyone has to weight up their own priorities, risks, and expectations. I’m so pleased you could make a decision that works for you. For me, I have a very public job too, but it involves being active all day everyday. As you say, cancer takes so much, and for me I just don’t want to risk it taking my active lifestyle or make that more difficult for me. For me, it isn’t worth that risk. When I can’t move for a long time it hugely effects my mental health. Just the recovery time alone would be a real challenge for me with the DIEP. It’s tough though and certainly isn’t an easy decision. I wouldn’t choose any of the options willingly, who would?! For me no reconstruction just feels like the lesser of three evils and something that feels more fitting for my situation. Wishing you a super speedy recovery. X
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@Dramajo I hope your surgeon is more helpful. I’m considering asking to see another surgeon, because he didn’t seem a big fan of going flat, which doesn’t fill me with confidence.
I’m doing ok. How are you? Gathering all the information and then making the best decision you can is all we can do. As you say, the mastectomy is the important bit! Best of luck x
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Hi,
I think the surgeon who said anyone who is not 100% should probably wait and have more time is probably right. The one who said people with mastectomy with be left with ‘ugly scar’ is not.
I think my scar is fabulous. Of course, I would have preferred for none of this to have happened and never been told I had a cancer diagnosis BUT I have never regretted my decision for mastectomy and think my surgeon did a really good job. I think he (and many other surgeons) would be totally offended if they heard this comment!
We are all different, which is why there are different options and it is up to the doctors to explain those options, in a non-pushy way so we can pick what is best for us and our lifestyle.
It sounds like he has his own agenda - shame he feels it necessary to put that onto you when you already have so much to think about.
My surgeon did ask if I was sure, talked about alternatives (which he probably had to do to ensure I didn’t waver, and ensure I could sign a consent form to say I had gone through all the options) and added that I could have additional procedures later if I changed my mind. But on the whole, apart from saying that, he listened and accepted my decision.
For info, I am a senior nursing manager, who had met the surgeon on a few occasions before my diagnosis. I don’t think that made a difference to his approach though.
I have wondered on a personal level and reading the forum, whether surgeons prefer DIEPs and implants because more interesting than a ‘basic’ mastectomy and whether that ‘steers’ them in a certain direction?
May just be the cynic in me though…
If you have any uncertainty, I would suggest talking through with the nurses on the helpline, who will be unbiased and help you to decide what YOU want to do.
If you are now sure I would suggest explaining to your doctors that you have thought about it and made your decision. So any relevant information will be gratefully received but otherwise…
I think deciding what is the ‘best thing’ to do in these circumstances is just sometimes too hard. We don’t really want any of the options so how can we pick one? What I try to do when I am stuck, is to turn it on its head and think ‘what is the worst option’ and by process of elimination, I tend to get to the ‘best’. The decision sometimes comes to me easier that way round?
Not saying it always works but can be worth a try when stuck.
Big hugs
x
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A few days late having a little catch up here but WTAF? Your surgeon sounds awful @mcsparkle. I notice you said ‘he’. Might I suggest the only nasty scar around is the hole commonly known as his mouth. What horrible things to say.
I am mighty proud of my mastectomy scar. I’ve 4 other major scars (hips and knee) and they’ve all been hypertrophic (bumpy, red and ugly - bit like a bop on your surgeon’s nose would be 
), long, slow recovery ones. My mastectomy scar was hardly visible after 6-8 months and remains a neat, pale, silver, smooth, fine line. There are a few little lumps and bumps in a few areas where my boob was cut away but nothing ugly at all.
I don’t want a recon. It flitted into my mind a few times and gone straight out again. I am happy mono-boobed and I am not having another major scar (that could turn ugly) purely for vanity purposes. No surgeon would change my mind either - still so annoyed with yours. My hubby was never bothered about my mastectomy (apart from obviously it’s a reminder that I had BC) - even at first viewing he could see it was shaping up to be a nice scar.
My only niggle is that they don’t cut off the side boob so you are left with a flap at the outside (underarm) edge - puppy ear as some refer to it. Though if they did cut that off, I suspect post-op movement would be more difficult. Of course, I might’ve had a bigger side boob as I was a DD and overweight. Still am a bit but I’m about 2-3kg than before diagnosis. My puppy’s ear has shrunk a bit.
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Thank you @LauraR I am still shocked about my surgeon saying that. He hasn’t said that about reconstruction scars! I’m just baffled. It hasn’t swayed me, I know this is 100% my choice and it doesn’t matter what others think, but it has made me really concerned about him operating on me! I’m considering talking to my BCN about seeing another surgeon, if I can. I don’t want it to effect my care but I feel like I need to trust my surgeon and I am struggling with that now. Lots of people say he’s a great surgeon and he is very experienced, but there’s just this niggle I have… Am I overreacting?!
In terms of making this decision, I’ve been thinking the same way. I wouldn’t choose any option willingly, so I’m going with what feels like the lesser of the evils honestly. I’ve thought long and hard about it, as I’m sure everyone does. Implants just aren’t for me for many reasons. I don’t want to put myself through everything that the DIEP involves and I feel like the risks outway the benefits for me personally. So that leaves going flat. It isn’t an easy decision by any means, and I do keep having panicked feelings about missing my boob! But I am going to have to come to terms with that. I have to have the mastectomy, that’s non-negotiable!
It’s so good to hear from people that are happy with their decisions long term, thank you for sharing. X
Horrible isn’t it @Gelbel ? I can’t wrap my head around why he thought that was an acceptable thing to say?! He’s never mentioned anything else being ‘ugly’. It has rocked me, but not in terms of my choice, just in terms of having him as my surgeon!
I’m so pleased you’re happy with your choice! It’s lovely to hear and I hope that one day I can feel that way too. The surgeon did mention he can take that side bit off to make it smoother (I’m sure he said it in a more technical/medical way though!!). But he said he’d ‘leave that incase you change your mind, as you’re so young’ 
he’s obviously not a flat fan!! I’m really thinking a second opinion might be on the cards, but I’m nervous to ask.
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I think it is very reasonable to ask your BCN if you could discuss this with another surgeon. I was lucky that I fully trusted mine and that was really important to me. I have no regrets with going flat and decided it was the least worst option for me. Good luck xx
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