I had a single masectomy back in early Feb for multifocal DCSI . Very fortunately they have found no invasive cancer in the lymph nodes and there is no follow up treatment .Very good news you might say and you are right ! however I am finding it very difficult to adjust to having one real breast , and find myself becoming withdrawn and low , tearful and bad tempered. Trying to cheer myself up with new clothes , makeup etc has had no effect . Anyone out there with similar experience how do you cope with this and how long does it last . I know I should count my lucky stars but it still is an enormous shock to lose a breast .
Hi sunflower3
I’m sorry to hear you are feeling down following your mastectomy, if you would like to give the helpline here a ring the staff will support you through this. BCC are holding various support days around the country throughout the year and the staff on the helpline will be able to tell you more about these if you are interested.
I hope this helps, take care,
Jo, Facilitator
Hi Sunflower
I am so sorry you are feeling so down, I would be exactly the same hence I was lucky that I was able to have immediate recon after my Mastectomy. Though I still have days when I feel upset that I have lost my breast. It is only natural for you to be upset, as a nurse said to me - you are grieving.
Have you not been told you can have a recon or do you not wish to have one?
Sending you hugs
x
Hi Sunflower,
I feel just like you.
I had my mastectomy at the beginning of Feb after two lumpectomies last year (Sept and Oct) and my recovery has not been straightforward with seroma drainage and a dead right arm and now cording through my breast…
Just had emergency physio and am on wall to wall painkillers but even so I feel just so very disappointed with everything and feel very down indeed.
Still can’t wear a bra as it is too painful. The lack of symmetry is just too awful and it is taking so long to get over the op.
Like you mine was extensive DCIS and of course I am grateful that I don’t need chemo and no invasive cancer cells were found but there is
no joy anywhere with this. I have to have radiotherapy later this month but living in this limbo where nothing is happening is making me very sad and self conscious. Lost my spirit really.
Also not finding anyone here on the forum to identify with is pretty lonely too.
I’m so sorry you are finding it difficult to adjust. I have no real words of wisdom for you but just wanted you to know you are not alone. I’ve been told it takes a year to feel ‘normal’ again but after 8 months of recovering after each operation I’m losing patience and feel very angry with everyone who doesn’t understand and thinks I’m ok now!!!
I do sound very bitter don’t I?
Sorry but your post just hit a nerve. Even getting dressed is a nightmare as I’ve lost confidence in what to wear and I normally love clothes. So I’m usually dressed in black like some sort of shameful uniform!!!
I will eagerly await any tips as to how to cope. I will follow this site with interest but I doubt there is anything but to try and live one day at a time and don’t expect too much…
It just seems such a waste of a year!
However, I should point out that the helpline can be just wonderful to try and help you balance everything out. They are great listeners and I have blubbered with them on occasions. At present, I don’t feel able to go for another operation to have a reconstruction as I’m just too fed up with hospitals etc. More likely to have the other one removed at this rate just to have some symmetry back…
I think it’s very difficult when you have gladdening thoughts that the cancer is not advanced but the treatment is just the same isn’t it? I know I feel I don’t belong anywhere…
Losing a breast to a tumour or DCIS is still losing a breast…
Losing a breast and not having reconstruction is a constant reminder that we’ve lost a breast! I know I don’t look at the space nor do I look in a mirror anymore… I suppose it’s going to take a long time to accept and adjust to.
Good to meet you Sunflower3
With supportive hugs from Welsh girl x
Hi Sunflower 3
I had a right mastectomy mid February with an expander implant put in which they haven’t started to expand yet - so I am completely lop sided. Somehow too I find it difficult to share my surgeons ‘vision’ of how the one on the right will ever so much as vaguely resemble my original on the left. Fortunately, like you, I didn’t need further treatment other than Tamoxifen and for that I am grateful, I really wouldn’t want to be doing chemo.
However, I somehow expected to ‘get over it’ and for the most part I suppose I do but I feel mutilated. I think of my self now as maimed and ugly and what with that and the Tamoxifen removing the last vestiges of female hormones too - it is very depressing. It doesn’t help that my partner has shown absolutely no interest in seeing my scar or looking at me either. So no supportive words there!
Like you Welshgirl, I don’t look at myself in the mirror anymore. I have been grateful too that the weather has been so dire because at least I can hide behind big baggy jumpers. My mainstay have been bras that are moulded and padded which hide the disparity to some extent and the ‘comfie’ I was given was huge so I have taken out some stuffing and sewn it into a smaller more manageable shape to use. It moves though within the bra, so as I work with teenagers I shall have to be very careful when I go back after Easter. I don’t want that falling into a teenage boys lap!!
The only thing that keeps me going is the hope that the implant will work and make me look normal again but I think I shall always mourn my real breast. It is part of our identity isn’t it, so it is only natural to be upset and depressed about it. Maybe you should think about a recon as psychologically it may help. I couldn’t have even considered a mastectomy if a recon wasn’t on offer.
I’m sorry I don’t have any words of wisdom really to help you. Perhaps a visit to a decent lingerie department with a good fitting bra will help? At least that way you feel ‘normal’ while you are dressed. It is going to take time unfortunately and how long depends very much I think on how life treats you in other areas too.
I wish you luck! I wish all of us luck in coming to terms with this - as you said Welshgirl, losing a breast is losing a breast regardless of why and it is going to take time for all of us to adjust to our ‘new’ bodies.
Take care
Val
Thankyou everyone, particularly Aqua and Welsh girl , it is so comforting to know that you are not alone !! I will reply more at length in time, I have to make an appointment today to go and have my prosthesis fitted , what joy! a piece of Mrs Doubtfire! I will try the help line it sounds good and many thanks . Hope you have a good day. Sunflower3
We have a large group of sisters over the Pond and as there are more of them it’s worth looking at their forum. Breastcancer Dot org. They have a support forum like this one and there’s an active thread running “Hating my unilateral mastectomy” in the DCIS section that deals with just this issue.
(moderators, I hope its okay to share this, not meaning to offend)
I think it’s totally normal to feel awkward and odd when we are lopsided, my only plus is that it beats cancer. I felt really good when i got back to swimming. So far I’m still working with softie-boob and nothing has fallen out yet… but Oh, Vallee, you did make me laugh with the image of surprising a young lad beyond his wierdest dreams!!
Hi all
I can relate to hating unilateral boob, I had a right mx in Dec 2006 and axillary clearance 2 weeks later, there was 2 nodes positive, I am on Tamoxifen for 5 years then an aromatose inhibitor for a further 3 years. I have tried to like my prosthesis. I have sponge ones for swimming and have had 2 silicone ones, but I hate them. I thought I could manage without reconstruction but eventually began to realise that I unless I get this done I wont move on. I know it sounds vain but every day I wake its a constant reminder. My prosthesis never seems to match properly, I cant find a comfortable bra. The only good thing is that I have bought some lovely swimwear and its the only time I look good. Every time I look in a mirror all I see is one boob. I had chemo and lost all my hair. Its come in lovely and I have kept it short whiuch I never would have had the courage to do before
BC. I asked my surgeon about reconstruction at my Dec 2009 check up and he referred me to a plastic surgeon who is going to perform tram flap reconstruction and reduce and uplift the other boob. I know surgery wont bring back what I have lost but I feel at 52 I am young and dont want to feel like this all my life. Sorry for the rant.
Love to all and take care
Carolyn x
Hi everyone,
Just wondered how you all were…
How did the prosthesis fitting go Sunflower3?
I had mine fitted last week. I’m surprised how heavy it is!
Today it is lovely and sunny here in Kent and I went out this morning looking a little more summery with a T-shirt type of top on under my jacket, definitely not low but not high either! Felt so self conscious because as I bent over,the top gaped and as I am short anyone looking would have viewed my horrible ugly scar!!!
It spoilt my whole outing today as I was out shopping at a design fair and stooping down all the time looking at the goods!
I think the summer is going to be a real nightmare once the warm weather becomes permanent. Just feel so different to everyone else and although I’m quite a quirky person I suddenly want to fit in with the majority!!!
Maybe a high necked t-shirt will have to be my new summer look???
Or am I just wanting a chilly summer to emerge?
Hymil, I tried the DCIS site you mentioned but it couldn’t identify it…wondered if you could repeat the address again. Thanks!
Do hope you’re all managing your clothes/dressing regime better than myself today.
Best wishes from Welsh girl x
Hi, it was lovely to see the sunshine today and I sat outside in a small top and sunbathed. I was well aware that I only had one ‘normal’ side but the padded bra sort of filled out the other. The comfie I have is just too big unfortunately and I am so aware of it moving. This problem you had Welsh girl of stooping down though is one I must address as I work in a secondary school which has a disabled unit. There is a lot of bending down and leaning over. While I have never intended to give anyone an eyeful I must check and see if there is anything else visible - like scars and gaps.
I did find some modesty panels however,from Betterware of all places, which clip to the bra and stop clothes ‘gaping’. I haven’t tried them yet but I think they may be just the thing.
Hi - hope its OK to join this thread. I had a bilat mast in Feb with no reconstruction (no chemo) and although I’m not quite through the woods yet with healing (ongoing seromas & lately an infection post drainage) I can identify with alot of the feelings being expressed here. I am not trying to recreate my former 42E shape but am aiming for a 38B so I’m using the M&S post surgery camisoles with ‘secret support’, and just stuffing some of the softie filling into those cups. This works pretty well and is very comfortable (& light - I can run [not that I do run] without joggling). BUT in this warmer weather I am realising with dismay that when I lean forward/stoop I don’t offer a very nice non-cleavage view. So I’ve got to work on that - maybe its high necklines? At 50 I thought that I wouldn’t feel too bad about not having breasts but actually its worrying me more than I thought. I don’t regret the bilat although I only clinically needed one done - but losing even one breast is more devastating than I had anticipated. The thought of reconstruction however fills me with dread - I know I couldn’t go through with it. I try to build a picture of a strong confident breast free person - sometimes it works, sometimes it doesn’t. I’m hoping that as the weeks go by that picture will get clearer and that I will learn to love my scars and the way I look (!?!) [easier said than done]. My first job is to reduce my tummy so it doesn’t stick out so much…
Best wishes to everybody on here - its great to share…
Maggy
What a good idea!
I’ll have to look out for the Betterwear man!
Anything that gives you extra confidence is just a must at the moment.
Thanks Val.
Maggy I totally agree with your sentiments. I couldn’t have reconstruction because of an infection after second op (and I was terrified by the length of the surgery…) So had my mx and found DCIS was extensive so it was necessary after all and I have to have rads soon, and I really believed I could cope with being one breasted. But the pain and discomfort of recovery and not being able to find anything comfortable to wear has made me really feel the loss.
Deep down I think I’m very resentful…
This ‘recovery’ is so much more difficult than I imagined…
The waiting for results 3x was horrid,and the surgery but coping with the lack of symmetry and the ugliness of it all is quite overwhelming me!
It’s so good to share all this with women who understand but I wish it was easier for all of us.
Best wishes to you all from Welsh girl x
Hi Ladies
Maggy - I can’t say I blame you re not wanting recon. I possibly wouldn’t have had it either if I’d had both my breast removed due to length of op and recovery time, and will still need more ops if I don’t want to be lopsided.
I also wore the M&S post surgery camisoles and found them very comfortable.
Welsh girl - I too had to have 3 ops and 4 stays in hospital due to having wound infection after 2nd op. I do have the option of corrective surgery but whether I do is another matter as hate the thought of stopping in hospital again.
I can understand you being terrified of having a recon as its not easy at all but there again I don’t think I could cope with having one breast, hence I chose recon to cope psychologically.
Take care everyone x
Welsh girl, if I am allowed to post a link, the thread i was thinking of is here:
community.breastcancer.org/forum/68/topic/750797
(If i’m not allowed, then this post will be removed)
Hi ladies
To solve that “gaping” problem I use body tape to secure my top. I buy Eylure tape from Amazon, I usually get a few packs at a time so I can take advantage of the free postage.
Also, the first prosthesis I got felt heavy so the breast form fitter ordered me a lightweight one, that feels much better.
Love
Maude xx
Really great reading all the comments and tribulations post masectomy and I am very gratefull to people who are generous enough to share their thoughts as it really helps . I have been this week for the prosthesis and it feels much better than the softy, mainly because it responds to body temp, and I too am suprised how heavy it is . had a lovely talk with a lady over the phone , kindly arranged by BCC and that too really helped . I ended up with some plans of action and the decision to really slow the pace down, try to be kinder to myself and really focus on the getting to know the new me ,be pro active in structuring me time . I did buy a really great camisole bra, just need to get some nightwear and tackle the how to get your allure in bed back such as it is !! still find myself undressing in the bathroom and skulking around hunched up . Still early days. Not looking at the scar much except to rub bio oil in to try to smmooth the skin . Still low somtimes but improving . Love to all .sunflower3
Hi Ladies,
This is my first post and I really do not know where it fits in so hope you don’t mind me joining you. Had a left Mx with immediate DIEP recon for extensive DCIS but clear lymph nodes done in Oct last year. I suppose I recovered quite well and am back working, however troubled with moderate to severe pain in recon breast and now under chronic pain team. Has anyone else this? Also due to go back in for “tidy up” as they call it on Tues next week also reduction and uplift of the unaffected side. Really worried that it won’t sort the pain and I will be left using the emla cream for the next few years. Any advice?
Hi Marjay
I can’t help as my wounds are still healing. I’m bumping - hopefully, some of the other ladies can help you
Take care
x
Hi Aqua,
Many thanks for reply, do hope that you heal well and feel better soon. xxx
Thanks Marjay
xx