My name is Viv and I was diagnosed with widespread DCIS in my right breast and 1 node with micro metastisis (extensive and high grade 5, 6cm lump). I had a full bilateral mastectomy in August last year and was given temporising implants with the view of being reconstructed in November this year. 6 weeks later I had a severe infection in my left implant and had to have it removed. I have been living ‘wonky’ since then and at my last appointment with the breastcare nurse, I requested removal of the remaining implant so I would be flat. I have decided I don’t want reconstruction after having so much surgery, I just couldn’t face anymore for now! I also went through genetic testing, I was lucky not to be a brca carrier.
I had the implant removed privately last Wednesday (waiting list for non essential surgery was long and I wanted it over with) and I wasn’t prepared in any way about how I was going to feel afterwards. I know it’s early days but I have hardly stopped crying since I saw myself in the mirror for the first time on Sunday! I am overweight and my upper belly looks enormous. I am going to start to get a grip and gradually get back to gentle exercise and eat well.
I was completely unprepared for how I was going to react. I am a very happy go lucky person and have taken it all in my stride up until now. I am always smiling and everyone has said how strong I’ve been. I feel awful too because a friend of a friend passed away from BC on Friday and I feel so lucky to be alive. I’m sure all these negative feelings will pass but for today, I feel like I’ve been hit by a truck. The op to remove the implant was quite big and the surgeon had to mess with my muscle. I have dressings from one side to the other on my chest as they tidied up my left hand side too. There is a 1cm gap between them. I suppose I’m a bit frightened and all that’s happened has hit me like a train.
Sorry to sound so negative but I know that if there is anywhere I will find people who understand, it’s here!
I’m sorry to read that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Hi Viv. I can only imagine how you must be feeling and want to send a big hug your way.
I expect some of your emotions are part of a grieving process and hopefully you have the support you need around you. Undergoing an operation is, on it’s own, an emotional time without the added trauma you have experienced. Time is a great healer and I’m sure ladies who have had similar experiences to yours will be along to comfort you soon.
Big hugs
Take care and best wishes
Emma xx
You’re right that you can come here to talk to people who understand.
I’m not surprised that you want some time off from all the surgery and I’m sorry that you’re feeling so bad about things at the moment. I HATE my mastectomy but have come to tolerate it for now while I wait for a recon. I’ve tried to hide how I really feel from people but I think they’ve now come to realise. I think your feelings about it will lessen in time but it’s obviously very raw at the moment. I’ve met people who have got used to being flat and have chosen to stick with it rather than further surgery. And I think maybe being balanced/symmetrical will help. For me, being - as you say - wonky doesn’t help and I don’t find the prosthesis comfortable.
Don’t feel bad about the way you feel about your own circumstance. Yes, you’re still here but you’ve had a really hard time and the fact that your friends friend has died and you’re still here doesn’t lessen what you’ve been through.
Hi Viv, I’m afraid I’m not at my sharpest, (had fec no 3 this pm) but couldn’t not reply to your post. I can understand your shock and trauma at how different you look - there really isn’t anything that can actually prepare you. You will adjust though I can assure you… I had my bilateral mx on 26th march and after spending an absolute fortune and every waking hour in pursuit of a bra to make me feel normal, I think I pretty much achieved my aim! It is actually an advantage to have had a bilateral, as it makes achieving symmetry easier and comfort mora possible. (Results of my search - and I was only ever a b cup so won’t suit all - Anita bras pretty, comfy and good quality; genie bras quite good and supermarket copies pretty good but cheaper; amoena a bit more glam, but great quality and pretty comfy. Another thing I have found v useful as well as the prostheses offered by BCN and various websites are Seafolly Shady Lady Full Cup Beach Bust (£22 for a pair as it mounts up when you always need two!) which you can also swim in. Once you find a comfy bra and prosthesis combo you will feel a lot more confident and that is probably the time to treat yourself to a new top or something to make you feel good.
It is probably early days for you and you just need to put everything into healing well and remembering how well you’ve done to come this far. I just wanted you to know that two months (or less) down the line I am accepting of my shape; when clothed or in a bikini no one would have a clue what I’ve had and that I’ve moved on to stress about my hair loss!!!
i don’t think you say if recon is an option for you further down the line? They say that I can,but have to wait a while because of rads; however I do find that I’m not unhappy with the way I am now…
Give yourself time, be kind to yourself and let others be kind to you - you’ve been through a hell of a lot, but it will start getting better. If there is anything at all that I can help with please let me know (trivia and vanity heartily included!).
With all the very best, xxxxxKatie xxxxx
Hi Viv,you wouldn’t be normal if you didn’t feel downat times,we all try and put a brave face on it for the sake of our families but this is one place where we can say how we truly feel and others here will understand completely and will be able to empathise with you.Sending a cyber hug,your not alone,
Love Di.x
Hi. I had a bilateral Mx six weeks ago. I do not want any reconstruction. Originally I had an expander because I was going to have a reconstruction from my stomach tissue and they were saving the skin. Then discovered cancer in my other breast and also in the skin around my R breast. Eventually found mets in my bones…tho not very extensive, but also ‘shadows’ in my abdomen…so can’t take tissue from there. I had to persuade them to do a bilateral and take expander away…they wanted me to have implant. I just don’ t want them. I am much more comfortable now … I have both of my prosthesis now and am going tomorrow to find some bras. my scars are not pretty but I am much happier. I know that we are all different. After I havre got the bras fitted I will treat myself to some new tops. Now that my breasts are gone I can see my stomach and am not happy with it’s size, but like you I hope to work on that. Healthy eating, exercise etc.
Thank you all of you lovely ladies who have taken the time to reply, I appreciate it massively! Carrotjuice, thank you, you must be feeling fried!
I think I will get used to it! I’m going to see the BCN sometime in the next few days and I’m also seeing the consultant to have the dressings off and stuff and I think once I’ve seen the scars, I’ll feel better. Weird isn’t it how for the last 5 months I’ve gone around everywhere lopsided without a prothesis and not batted an eyelid. Now I’m symmetrical it’s sent me into a tail spin. I’ll never say never to reconstruction but I need to lose about 4 stone before they’ll do a DIEP and I want to get my head round losing weight and getting myself fit before I even consider it! I think it’s all about relinquishing control again too! I have a lot of things to sort out before I can give up control. My kids are about to go into their GCSE year and they have been through enough!
The mind is a strange thing. I’ve also decided to write a blog about being breast free and starting the rest of my life from here. It’s something that I do for weight watchers and find it really good. I’ve written a lot on there about how I’ve felt about my body and all the surgery and stuff. They are people that I’ve virtually known for a few years and it’s really helped. I don’t want an opinion from them, but getting it out of my head has helped a lot and knowing they understand is enough!
I hope everyone has a peaceful, comfortable day and thanks again for listening to me!!!