Can anyone help me manage post-mastectomy blues?
I had a mastectomy unexpectedly last week- I had bilateral mastectomies in Feb 2012 with implants and strattice. One of my breasts (it had had rads in 2009) developed an inflammotory response which failed to response to treatment. I had to have an emergency op to remove implant as I am having chemo (all a long story). I did not intially realise that this would involve the removal of the entire breast tissue. I was very philosophical and took it all in my stride until I got home on Saturday. I have been very weepy and shocked by how my chest looks. I doubt very much that further recnstruction is an option as everyone still worried about healing, so I need to come to terms with how I am now.
I met the breast care nurse y’day who ‘measured’ me for a comfie- well, it was hardly measuring an it certainly is not comfie. It was more like ‘lets see what we can stuff in here,’ and even though she was very lovely it was very dispiriting.
I know some ladies seem to cope very well ‘breast free’ (I have read some of the threads)- I want to achieve this mental outlook? Any words of wisdom or support gratefully received.
Emotions aside, I am finding the following things difficult:
Bras/vests- so, so sore -anyone any tips. As my other breast was recently reconstructed, it really needs a bra but cant bear anything touching the other side.
Any good suppliers? Is there anything better than the nasty comfie given me- it is too big and it wont stay in the bra?
Clothes and dressing- I assume layering? Scarves? High necklaces? Any tips or advice?
I would like to know anyone’s experiences of whether and what they told friends/family or not? The problem have is that everyone thought I had had mastectomies already and they dont understand that before I kind of had my breast and now I dont. I am too upset to explain it but I feel that if I dont then they wont understand.
Partners and how they coped- my partner is very supportive but I can see he is upset too.
Thanks, Rattles x
Hi Rattles
So sorry to hear you are going through such a hard time. You have certainly been through the mill. Hoping I can help somehow, but with most of this stuff, it takes time for your mind to accept what is happening to your body, mine seemed to play catch up most of the time! I had an mx in January, just had my last chemo session this week and am moving on to rads soon.
I had a softie which I was discharged from hospital with. Fortunately I had an old bra which I used to wear for the gym. It was really out of shape but I could do it up on the loosest hooks and it gave some support to my remaining breast. To be honest, I went without wearing a bra at all for the first while, until my surgery side felt more comfortable. I am not huge, 36D, and just felt I couldn’t bear anything fitted around me! Your chest area will look better as time goes on and the bruising / swelling goes down. Its very early days for you still, the swelling takes some time to go down, so I am sure you will be more comfy as time goes on. Are you doing your exercises? That may help things along a bit! Could you maybe take some stuffing out of the comfy to make it fit better?
As you need to wear a bra for your other breast, M&S do a sports bra which is reasonably priced at £16 for 2 (product code T336454D) or there is a soft bra (T337028A) at £12. I would recommend you get a larger size than you normally have (36 instead of 34 etc), but not go up on the cup size as it should then still fit your other breast reasonably well.
You are right, layering, scarves etc are good at disguising what has happened to you. Over the months since my mx, I have changed my outlook about it all though, and go without my prosthesis more than I wear it. I adapted some old bra’s I had pre bc so that I have a flat side now! For me, that part of having bc has paled into insignificance (along with the hair loss!), and I also feel that the prosthesis is not a part of me. It feels alien and most of the time I would only be wearing it to conform to normality. I do wear it at times though, particularly for socialising or if I am wearing something fitted where I need some shape. I realise that I am probably contradicting myself there, but its just how I feel about it and that is all you can go with. You will gradually adapt to your new situation and find your own way through it all.
For me also, it helped to tell everyone. Family, friends, work colleagues etc. That is just a personal choice and I totally understand some ladies prefer to keep it to closest people only. If you are not upset when you tell people, they will accept it easier. Could you do it in a ‘matter of fact’ kind of way, like its all part of the bigger picture and you had to have it done so that you could get better? Try to focus on the outcome in the future, like the mx is a necessary evil but the outcome is very positive although you have sadly had to lose a breast to achieve that. Could you maybe say that a further reconstruction may not be possible as you have had a lot of surgery to that area already, so you are going to learn to live without one of your breasts.
Sorry if I have been waffling! There is so much to adapt to, and I really believe that Time is your greatest ally. Take each day as it comes and try not to run before you can walk.
You have been through so much, its not surprising you are struggling emotionally. Just try to give yourself some time to adjust, you sound like you have great support from your OH, it’s a lot for him to take in too, but I am sure you will feel a lot better about it all as time goes on. You could maybe give the helpline a call, they are very good at listening and helping you along the way.
Lots of love and hugs coming your way
Joan xxx
It is very early days for you Rattles, I had a mastectomy in February and I couldn’t wear any vests or bras for at least 6 weeks because the area was just too sensitive and sore. Even after this time I could only tolerate a vest top (secret support one from m&s) which I pinned the comfy into and that worked. I wore loose clothing for weeks, usually dark, patterned shirts etc as this disguised the assymetry more than a fitted plain top.
It was only after 3 months or so that I could really tolerate to wear a bra for any length of time. I now have a silicone prosthesis which I find mostly comfortable but even by the end of some days I need to take it off and my family have just got used to me being lop sided and they don’t bat an eyelid. I’ve talked about reconstructive surgery with my surgeon but at the moment, I don’t feel I want to go down this route, I’m coping with me as I am
Some days I still wear my comfy; when I was first given it by the BCN it looked huge, it took a while for the penny to drop that I could take some of the stuffing out of it!! I always had to safety pin it to my bra so it stayed put.
I’ve told my family, friends and work colleagues because for me its better, but everyone’s different. I was very upset telling everyone but once it was out in the open I was more able to talk to them without getting upset, it was that initial ‘telling’. My problem is meeting people for the first time after what I’ve been through, I cry everytime but once I am over this then I’m ok with them. At the moment you are very upset as you are coming to terms with your own feelings and emotions, emotional healing takes time. If you want to tell your family and friends but feel that you can’t do it yourself as youd get upset then maybe your partner could help you or you could write to people and explain everything. I wrote to an old friend yesterday about me because she doesn’t know yet. I cried writing the letter as it brought back all the hurt and loss but its done and she will know today about me and we can move on now.
Most importantly, you do what you feel is right for you
Take care xx
Hi Rattles, as the others say it is early days for you at the moment, I have lost both breasts and have chosen not to go for reconstruction so I wear bright patterned tops and have a huge array of scarves( which look trendy) I have a problem with scarring and “dog ears” under both armpits as I was a 38 E. Time is a great healer for both body and spirit, be kind to yourself. There is always support and advice here for you. xx
Just wanted to thank you all so much for sharing your experiences with me. You are wonderful women.
I’m still feeling pretty miserable but it helps to know that my reaction is pretty normal and be reminded that this is a time for adjusting.
I think what is hard to accept is that only 3 months ago, my left breast was healthy (the new cancer was in the right breast) and there was nothing wrong with it. I can honestly say that my experienec of reconstructive surgery was like being dragged through the fires of Hades- I cant imagine how I would ever put myself through that again?!
It is a good tip to buy bras too big. As I never progressed from post-surgery bras from the first op, dont actually know what size I would be now- Patchit, you have even put the references in for me!!- but guess I can return them if the dont’ fit?
Thank you, Rattles
Hi Rattles
I posted you a long reply yesterday and it disappeared! So here I go again …
You have had lots of excellent advice so far but I thought my experience might help a little. I had a mx in October 2008. Before my operation I bought some post surgery bras from Asda (I got that tip off this forum). They are not too expensive. I bought lots of different sizes, brought them home and tried them on then took the ones that didn’t fit back and got a refund (it can be quite difficult to know exactly what size you are). I wore them with my softie (comfie) for about 8 weeks. As Elsa says, you can take stuffing out of the softie and put it back in to suit. I wore loose tops which were easy to take off and put on.
When you are ready to get your breast form and “proper” bra take your time to get everything right. I knew I wouldn’t look the same without my clothes but I wanted to look good with them on. I saw the breast form fitter at the hospital and the first breast form she gave me was too heavy so she got me a lightweight one. She also gave me a stick on breast form (Contact) to try, it didn’t suit me but lots of ladies think they are great. Go to a specialist shop to be fitted for a bra. Even if it is a pain because you have to travel to one still go, then in future you can order over the phone or online when they have your measurements etc. A problem I found is when I bent forward even high neck tops would fall forward and reveal everything so I secure my tops with body tape (I use Eylure tape which I buy from Amazon). I miss my cleavage but I didn’t really wear low cut tops before my mx so I have coped ok with that but I do wear quite tight fitting tops now with confidence.
As for telling friends and family, I told close friends who reassured me they loved me for myself and not for how many breasts I have. I did tell aquaintances but with hindsight I probably wouldn’t bother doing that again because, without sounding harsh, most people are only really concerned about their own problems and most of them have probably even forgotten about me having a mx. They still send me jokey emails about mammograms and tell jokes about boobs etc so it obviously isn’t such a big issue to them.
It is very early days for you but I promise it will get better and you will be happy again and cope with it all. It isn’t perfect but definitely doable. I might sound as if I am “sorted” but I cried myself to sleep many times in the early days and I still have a “downer” every so often but I forget about my mx most of the time now.
Lots of love and best wishes
Maude xx
Hi Rattles
I have to agree with Maude when she says she forgets about her mx most of the time. I am also the same, time is a great healer and you will come to terms with what has happened and work out the best way to cope going forward. Whether that is wearing a prosthesis all the time, or whether you decide not to use it all the time, it is entirely your decision and you will ultimately do what is best for you, of that I am sure!
Most of the high street stores will take purchases back and give you a refund without question. Just to get over the first few weeks, you really just need something comfortable. You can research what may be better in the longer run further down the line. I did find it all quite frustrating, getting the right prosthesis and bra wasn’t particularly easy, but I got there in the end, which you will too.
Big (gentle) hugs hon, be kind to yourself and take each day as it comes. It is early days still for you, you have lots of adjusting and acceptance to go through, so just don’t expect too much too soon!
Joan xxx
I had MX in May and hate being lop sided - I started with thr AAh bra type bras (you can get cheap ones in market stalls or pound shops) with an insert in and then I put the insert in on both sides and stuffed an ultra soft sock on the MX side - no one could tell the difference and i was comfortable…the insert made both sides look the same and some assh bras come with pockets for you to chooe whether to use the insert to its a cheap MX bra
I was REALLY distressed for first few weeks, never beleived I would get used to it but ahve to say I am now less upset than before but still upset about it, it gets me at odd times, but then i had two breasts for 55 years why should I adjust in less than 8 weeks? Too much to expect probably…
Be kind to yourself
Rattles, forgot to mention, I didn’t like my first prosthesis’ so after chatting to my breast care nurse she changed them for me and also gave me a extra pair for swimming and sport which are very light and comfortable and are the ones I use for special occasions. I am a year and a half down the line and still get upset in the nice weather when I seem to be surrounded by women with skimpy tops and lots of cleavage on show 
Hi Rattles
Just wondered if you are feeling any better yet? I hiope you have been able to adjust a little to your situation and also managed to sort out a bra to wear at ehe moment which is comfortable.
Thinking of you and wishing you well
JOan xxx
Hello Patchit,
Thanks to Maud too.
It is really kind of you to ask after me. I can tell the truth here!
I am crying less!! I think I am coping but I am still pretty upset. I am going out and about and getting on with life so outwardly I seem to be doing okay.
I had bilateral mastectomies in Feb because I have a brca mutation and was told I had a 50 per cent chance of a new cancer in untreated breast. Four operations later, the final outcome was breast cancer in one breast, and a mastecomy after infection and inflammation. Everything still looks messy (can you believe surgeon told me to try not to look when I saw him last week!) I realise that it would it would have been easier to accept ithe loss of my breast f it had had cancer. In Feb it was healthy but my actions led to it being amputated. So, I sort of feel like I brought this on myself. Also, my efforts to ‘escape’ cancer are not going very well as I now have a second cancer. (Maybe feeling a bit sorry for myself?!)
I am still not wearing a bra- this is partly because the skin is still so sore from the original post op problems. I dont have a bra and cant face bra shopping. I have been wearing my original post op bra (from Feb) but not with the comfie as I am too worried about aggrevating skin while I am on chemo. It is a shame the breast care nurses are so rubbish at my hospital. I ought to be able to go to them for advice and support. I am back on chemo again on Thursday so this will limit my ability to do much about this practically but psychologically I do need to- I know this. I hate that comfie!
I re-read your posts often because I feel like they help me to see that I wont always feel like this and I know I need to start moving on. Just not quite ready to at the moment.
Rattles, xx
Take your time Rattles, you will adjust when you are ready. Sometimes I forget totaly and then it is always a shock when I get ready for bed and see myself in the mirror. I go for my latest scan results tomorrow and feel a bit tearful, I am new to the area and miss the familiar faces and procedures, my last hospital was a cancer center and my new one is a general hospital with a cancer unit attached so everything seems strange, I know I will feel better once I have my new treatment plan.
Thinking of you, remember you are not on your own, you have us 
Oh dear Rattles, you really are going through a horrid time, I wish I could come and give you a big hug. Its not surprising if you are feeling sorry for yourself, I think most people would be feeling the same! You are allowed to feel like that, you know! Having bc is awful enough, you have other problems too, so I think you are more than entitled to feel sad.
When you were told you had a 50% chance of a new cancer in your other breast, you made a decision based upon all the information you were given at the time. Nobody knew you would have post op problems, but also you don’t know that you wouldn’t have gone on to develop another cancer if you had not had the op. It was the right decision for you at the time based upon the available facts. I do really hope that you can accept that, it sounds like you need to forgive yourself almost (does that sound daft?). For what? For doing the best you could, and for making a decision which could potentially have saved your life, or saved you from having further cancer treatment? You didn’t know what was around the corner at the time, but you will get better and you will get over the problems you are having now.
Have you thought about giving the helpline a call? Or asking for a referral for some counselling? It may help if you could talk through your feelings. Lots of ladies with a bc diagnosis have benefited from counselling.
You will adjust to everything in time, its still early days really. Just be kind to yourself and take each day as it comes. I wish your bcn had been more supportive to you. I hope you have support from your family.
Sending you a big hug and comforting wishes
Joanxxx
PS, Milo, good luck with your scan tomorrow xx
Hi Rattles, I can empathise with what your are feeling and going through. i had a WLE in 2004 in my left breast with no further treatment and then in 2008 diagnosed with triple negative in my right breast. I had TAC chemo first to shrink the tumour and give me time to decide whether to go for a bilateral, which I had, followed by rads. It took me a while to get used to my new body, I had dog ears and was very sore the side that had rads. I got post surgery bras from Amoena which were very soft and comfortable, I agree the ‘softees’ I was supplied with were horrible and I went flat chested until I was fitted with my two Amoena ‘falsies’. These were OK but I was not very happy with them and spoke to my BCN and was refitted with a different shape and make, Anita Vaio, which can be stuck on, which are wonderful. I have two lightweight sets and a swimming set. I tend to not bother when I am at home. I finally had remedial surgery on the dog ears last December and am now very pleased with the way I look. I still mourn my breasts from time to time, they had been with me for 62 years, but on the whole I don’t miss them!
Sending you great big but very gentle hugs and many comforting thoughts.
Lots of love to you all
Jennie
Rattles, just to say sending you love and hugs, I spent days thinking what if (I´d had chemo first or some oher thing), would I still have 2 breasts, but no outcome would have been the same and now I know beyond any doubt I had to do waht i did, and I would have done the same as you in your shoes.
Once you have healed I cannot see why you should not have a re-con if you want one, where is your second cancer?
I wish I had magic words, but i don´t, I can honestly say you have companions on this rocky road…and I feel for you…x
Thanks for the support, advice and kindness.
Patchit, I am well-supported. I use a local Maggies and also the BCC line has been a big support. My family and friends are supportive, but I am not sure how much they understand and they worry so I dont want to worry them. I think the whole thing has just caught up with me- starting in Feb with the initial surgery, and even though I am still on chemo, there was something about the failure of the reconstruction and removal of my breast which was an ‘ending’ somehow.
I am feeling better today- still upset, but coping if you know what I mean. I just had a rant yesterday - sorry! I had to stop chemo for 3 weeks to have the surgery (it was an emergency) so I am trying to get my head around another 4 lots of chemo too.
Sasha- surgeon thinks no more reconstruction. I had breast cancer in this breast in 2009 and had WLE and alot of radiation. He thinks this is what impaired the breast’s ability to heal. He said its rare.
New cancer in ‘good breast’- which looks amazing! But a bit lonely!
Nonny- agree, it is about getting to know the ‘new’ me and accepting the old one is gone and trying to embrace that. My grandmother, her mother and her daughter died at 40 (I am 42) so I know I am lucky to be alive, but still its a big change.
I will look at all the sites re. bras and prosthesis as I can see I have to get used to this if I am to wear clothes I like and which will make me feel better.
Milo- good luck with your scan. You mention treatment plan? Are you having treatment again?
Rattles, xx
Hi there. So sorry to read about your troubles. It is great to have this forum to share others journeys too. I am currently sitting in bed recovering from 3rd op in 6 weeks. I had a mx on right side with implant to save the skin for later reconstruction. I was very lopsided as the implant was a C/D and I am an F on the left. So I had one pert D cup and one pretty droopy F (2 babies and natural sagging!!!). I was pretty happy with the result and the plan was to rebuild and even me up following on from Chemo and possible rads. However, after a couple of weeks the wound started to break down and despite the best efforts of the consulant it eventually opened up and the implant had to come out. We tried to keep it for 4 weeks but it didn’t work and by the time we made the decsion to take it out I was quite pleased as ithe wound had been leaking loads and I couldn’t do anything but lay down with the breast exposed to try and dry it up - somewhat limiting. Anyway it came out and I now have a flat mx and a F cup boob! I am getting on OK with the softie but I am not exactly even. Floaty tops and scarves are helping and most people don’t seem to notice. Having always had big boobs I have got used to people looking so I don’t worry. I do have to take the softie out at home though as I am not comfie for long periods. Makes the kids laugh when I whip it out!!! I found an old sports bra at the back of my draw and took the wires out and that is working OK for me.
Sorry to hear that you are not having the best support. That is not ideal. Do you have a local support group at all? I have found one but haven’t been able to meet up with them yet They did send me a little heart shaped cushion that fits nicely under my arm to support the lymph node removal pain. Google for a local group they may be able to offer more practical help.
Oh yes - Op 3 was a day case yesterday for a Portacath to be put in. Blimey that was sore, managed to convince them to give me Tramadol and some to take home so am managing the pain but it seemed worse that the major ones when I can around! I am glad to have it though as my veins are not great and hunting around each time is not ideal.
I hope your journey improves and you get the support you need (physically and emotionally)
Love and hugs K
hi k glad u had the port is it like a pick line .i have been on tramodol since my ops can u stll take tramodol while on chemo? xx
Hi CoachK,
You sound like you are coping really well with the m/x.
My problem was not the wound healing, but so much inflammation and swelling (surgeon said he removed 3/4 pint of fluid!!) that the skin started to break down. He said it was a (rare) reaction caused by previous rads (I had a high dose previously) and he does not think the tissue will cope with further surgery.
When I went into surgery, like you, I was releived because it was such a mess and in so much pain. It was only aferwards I was caught off guard by my reaction but I have been through alot (four ops too and a new cancer diagnosis) so I think it sort of all caught up with me. I am feeling a bit better today and have even worn a bra for most of the day (albeit a post sugery bra). I am very nervous about using a softie as the skin is so damaged and I am still on chemo but thought I might been braver about putting it in the bra pocket when it ha healed more. I am wearing lots of layers.
There is lots of helpeful advice about bras etc here and I was given a Nicola Jane catalogue today. I could not bear a sports bra and need something really, soft. I found a silk vest the best thing initially.
Are you having more treatment?
This is a sort of ramble. but I do like hearing from you all.
Rattles, xx
PS Quinnny-Be careful with tramadol as it can cause bad constipation. Drink loads, prune juice and whatever laxative takes your fancy!
PS - I just wanted to draw attention to the work of David Jay, a photgrapher featured in Vista (the BCC mag). He took pictures of women with breast cancer - he says that he didnt want to take beautiful pictures, but honest ones, but actually I think they are beautiful.
The site is www.thescarproject.org
Rattles,
PS I assume its okay to plug it as its featured in a BCC publication.