Hello everyone, I am looking for advice from anyone out there who has opted for a single mastectomy without reconstruction. This is my elective decision for grade 3 IDC ER+/HER2+ because I want to refuse radiotherapy and also reduce the risk of needing a 2nd operation. I am a 66 year old widow. Although this is my decision I am scared that I won’t be able to cope with the emotional trauma of the mutilation. Can anybody suggest what I can do to prepare myself emotionally in advance, and also how to cope with the trauma afterwards? The operation is likely to be in the next two weeks. Thank you from Tulip
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Hi,
I too decided not to have a reconstruction mastectomy eleven years ago. I was 45 at the time and my consultant would speak as if having a reconstruction was self evident in my case. He was very surprised when I said I didn’t want one. I couldn’t hear the idea of a major operation and was worried I would hate the look of it afterwards, because I would have had one boob that was pert but completely without feeling and the other one would look droopy! Best decision I ever made. I’ve never regretted to having a reconstruction. In fact for the last five years I don’t even bother wearing a prosthesis and nobody gives me a second glance. Hope this helps.
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I was 72 when I had a mastectomy without choosing a reconstruction . To my surprise it hasn’t been that hard to see the scar and flat chest . I think I was just relieved, certainly initially , to see it all gone . I guess I did grieve a little about the loss but that’s natural . I found the nurses very caring about it after the operation. I don’t now 2 years down the line bother much with wearing a bra with prosthesis other than going out certain places .
I hope you don’t find it too upsetting but do reach out to people like on this forum or friends or Macmillan support if you need to . Journeying with others who understand is good .
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Dear Mateface67, Thank you so much for your reply. Yes, that helps a lot! Are you happy with the scar? I’ve asked my surgeon for a curved one but she only has one incision method-the eye shape - and I don’t know if that will achieve the desired effect? Do you have any feeling at all in your flat side after 11 years/do nerves regrow? Sorry, so many questions but it’s so hard to find people like us. Love Tulip x
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Hi Tulip,
When I first saw the scar it was a shock and I remember crying every day I woke up and saw it anew for about a week. After that I really did adjust quite quickly. I now view it as a sign of strength and how strong I was to come through the ordeal. I do have sensation around the scar area bit my armpit is quite numb because I had to have node clearance. The main issue I experienced after the mastectomy was cording, where you feel the ligaments in your arm are really taught, affecting your movement. Of that happens get some physiotherapy straight away. My physiotherapist was marvellous and completely resolved the issue for me. My initial scar wasn’t that neat but then I had a general surgeon do it, not a breast specialist. A few years ago I went to Addenbrookes and had the scar neatened. Now looks amazing. Good luck with everything!
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I had a masectomy June 22 and havent had reconstruction. I became comfortable with my decision by looking at images of other ladies online and realised they looked ok.
My scar is not totally flat due to scar tissue again im ok with that. I wear a Marks and Spencer post surgery breast form £10.00 (very lightweight) and on occasion i wear my normal bras and use their breast pockets which are 2 for £10.00. Very rarely wear my actual prothesis. I have been on holiday, and wore used my breast form which is totally washable ! Many bikinis have the pocket space for light padding and i just slip my breast form in them
Embrace your change and i assure you , you will get used to it as I did.
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Thank you Theresa, I will look into m&s breast forms. I appreciate your sharing your experience. It helps me feel less alone. Have made note re cording. X
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Also interested. Mastectomy due 25th Sept. Aged 56. Had decided on immediate reconstruction so not to have to have 2nd op, but surgeon advised me to wait till after radiotherapy as it will screw implant up and I’d have to have it done again afterwards anyway.
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I had a left side mastectomy without reconstruction in 2020. I don’t wear any kind of prosthesis. Not even when I go “out out”.
Before definitely deciding to go flat I spoke to a friend who had made a similar decision. It was useful to listen to her reasoning and realising it chimed with my thoughts.
If I may gently suggest something. Changing it from a “mutilation” to something much more positive (life saver perhaps?) may help get your mind in the right place.
A supportive doctor will also help. My surgeon left it completely up to me. Unfortunately I am now having treatment in the other breast. At my post surgery meeting this surgeon (different person) asked if I had thought about reconstruction and made me briefly doubt my decision. Even when I said I was happy with everything he said he could easily do the operation if I ever changed my mind.
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At age 49, I had a left side mastectomy without reconstruction this February. For me, I found it difficult to make the choice between the type of surgery options I was given (I was given several reconstruction options) primarily because I didn’t have the information I needed to help make the choice at the time and a lot of rapid changes were happening to my treatment plan. But once I had seen a plastic surgeon I had the opportunity to ask the questions I had the decision was easy. I didn’t consider an impact due to skin allergies.
I feel it’s such an individual & personal choice. For me I needed facts and I couldn’t be swayed by what others told me once I had made my mind up - that’s not to say that I knew how I would feel after the fact, I sort of took a leap of faith that I made the choice that was right for me. At the time I decided I would have a delayed reconstruction but 6 months on now, I’m not sure that I will. I don’t see myself as scarred in the sense that someone else may and believe the journey I’ve been through is one of strength, time will tell if I decide to remain flat or have a reconstruction later if my feelings change, but so far I feel content from a physical perspective. But there are the practical challenges that I haven’t yet figured my way around such as bra’s, softies if and what type of prosthesis to get so that I can wear my regular clothing with it hanging right - I’m still wearing cotton bralets, but haven’t worn any formal wear which highlights the asymmetry.
Regarding the question about numbness, I had a axillary dissection surgery as well as the mastectomy so have numbness underarm and on the flat side. The numb sensation has been gradually reducing over time, but as it’s only been 6 months it’s still early days for me. My understanding is that there will be long lasting numbness due to nerve damage.
I wish you well for your surgery, and hope sharing my relatively recent experience helps.
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I too decided not to have reconstruction 2 years ago. Im 72 and single with no wish to get involved in another relationship now. I was told I could only have reconstruction in a separate operation so that wasnt for me, having had 2 surgeries for mastectomy then lymph node removal. I live quite happily with my prosthesis. Best of luck and sending hugs.
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I’m in my 40’s and had a single mastectomy in May and opted for no reconstruction. It felt like a simple and straightforward decision at the time even though my surgeon initially was talking as though I would want recon.
The thought of having further ops and bits taken from other parts of me to make a breast which was never going to be like my natural one just didn’t make sense to me. But I do appreciate that is not the case for everyone - it is a very individual decision which you need to make and be at peace with. It helped that I knew if I changed my mind I could opt for reconstruction later.
After my opt when I had the dressing off I made a decision to look at myself in the mirror everyday to get used to how it looked which was hard at first but really helped me to come to terms with it. Yes I had one less breast but I was still me.
4 months on I have bras with pockets and a prosthesis which I don’t wear all the time but when I do it looks very natural under clothing and is comfy.
Good luck and best wishes x
I had a single mastectomy without reconstruction in 2022. I also was Grade 3, but I had Triple Negative Breast Cancer which I understand is more aggressive, so I also had radiotherapy. I had no problem with radiotherapy. I don’t mind having only one breast now, it is just such a relief to have surgery, etc., over. I have bras with prothesis so no problem there either. I am 84 years old. Good luck with what you decide but your Breast Cancer Team will know what is best for you, so do trust them.
Hi, I too was 65 when I had my single mastectomy. It’s been almost 3yrs now and during lockdown so a very scary, lonely place at the time as my husband wasn’t allowed in with me. I didn’t get offered reconstruction it was more lumpectomies or a single mastectomy as my cancers were many in my milk ducts. I decided a mastectomy just get the little beggars out. I didn’t really think much about anything except I didn’t want them growing inside me and also having the mastectomy meant no radiotherapy or chemotherapy was needed. I’m not in the best of health so again mastectomy was best I thought. It all came pretty quickly. It was mainly after that the demons came and boy did they come. There is a lot of help and support out there to get you through it. I had sessions with a psychologist organized through my bcn and she sorted me out. My scar isn’t that neat and I have been left with what I call my mini boob which still gives me a bit of a cleavage. I’ve been waiting a longtime for corrective surgery but have moved on from worrying about what I look like. Sorry this is so long but what I’m trying to basically say is you will be fine I’m sure. Lots of support groups out there if needed. I think we ladies are unique, stronger than we think and born survivors. Good luck
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Hello Tulip, I had a right side mastectomy and lymph node clearance in April 22, i was 54I couldn’t bear the thought of another operation to do reconstruction. Before the op i imagined not having one breast whilst in the shower, covering it with my hand and looking down. I had a big transparent plaster so next day could see the scar, it was a straight and neat and not really a shock, I was just so please that the triple negative big cancer third boob had gone. It was tender and tight afterwards but not really a problem, just keep moving gently. I was back to work five weeks later milking cows! I have found nice soft sports bras with pockets in primark, I haven’t ordered a prosthesis as I thought they looked weird instead I found knitted knockers a charity who knit boobs, they are soft and I forget I am wearing one, you can stuff them to your exact size, obviously if you have bigger breasts this may not suit but for me I quite like my knockers. For me I won’t say I like the scar and I would maybe prefer two boobs but the most important thing was that the cancer was out and that I could get on with my life and Nat have another op as they couldn’t reconstruct straight away, even if they could have I wouldn’t have it as it’s just another thing for my body to cope with. Hope this helps, happy to chat if you need or want to.
Ps, radiotherapy after was a breeze !
Hi. I had a mastectomy without reconstruction 4 months ago. I have actually felt quite empowered about making that decision and don’t feel at all self-conscious (which has surprised me). I still wear low(-ish!) cut tops and it really doesn’t feel like it has changed that much for me.
I make sure I massage the scar and look at myself regularly and I feel I’m at the point where I’m fine with the new me.
I hope that everything goes well for you xx
That’s such a good point. I have never regarded my mastectomy without reconstruction as mutilation - just about getting rid of those vile cells. I usually take ages to make a decision but refusing the offer of a reconstruction was instant and I have never regretted it. We are all so much more than our breasts!
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In 2016 after having 2 lumpectomies without clear margins, I decided to have a mastectomy with no reconstruction. My consultant seemed surprised at the time as they automatically think that you will want reconstruction. I just asked for him to make it as neat as possible with no excess flaps of skin. Due to the size difference in my breasts I did wear a prosthetic, but found the silicone ones heavy and sweaty and opted for a Been a Boob which was more comfortable during hot weather. I had a contralateral mastectomy in 2019 and am very happy being flat. My scars are hardly noticeable and I regard them more as a sign of survival rather than mutilation, plus you can feel any differences a lot easier, giving you more peace of mind. If I do decide to wear a bra, I use a Sloggi Zero Feel Bralette which I find just enough to give me some shape without wearing a prosthetic. There is a charity called Flat Friends which offers support via their website, Facebook or Twitter. Good luck for your forthcoming surgery. I found that taking Arnica 30C helped my recovery although everyone is different so please check that it is alright for you to take.
Dear all you lovely ladies who have taken the time to share your experiences with me. I am overwhelmed and immensely grateful to you all. I also hope that there will be more posts on this thread as it seems to have touched so many. I have collected all your thoughts into a document that I can carry with me for courage and reassurance in the days ahead. With much love and thanks to you all from Tulip xxx
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