Bilateral mastectomy

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I am having an op for a bilateral mastectomy on Thurs 2 Oct - is there anyone out there who is due to undergo the same, or has just had this done. Help please!! Any info or discussion on what I am about to undergo would be helpful. Worried and frightened of what I am about to undergo and what I am going to see afterwards. Been quite strong up to now, but the time is getting close and now I am starting to think ‘this time next week won’t have any boobs’ - now that sounds worrying to me. On the other hand I need to be thinking ‘this time next week I will hopefully get rid of this cancer!’

Angela

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Dear Angela

I’m not surprised you are worried, you are stepping into the unknown and no one wants to lose part of their body, even surgeons now realise that body image is important. I used to lie in the bath and try and imagine what losing a quarter of one of them would look like and never did have any idea. It is worrying and I didn’t think how fantastic, I’m going to get rid of this cancer, some people feel like that but i never did. I wanted to preserve my pert bosoms.

Sadly it was not to be, but I did get through it despite thinking I wouldn’t

Mole

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Molennium thanks for your comment. did you have two removed, I am putting my clothes on and squashing my tender breasts (after having 15 biopsies - bruised to hell) to try and imagine what i will look like. stupid isnt it. My bosoms are far from pert at the moment, unfort they look at the floor when i take my bra off. so maybe a benefit in the future. although at this point in time do not think like that. Please keep in touch need someone to talk to. thanks again for your rapid response

angela

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Hi Angela,

Sorry to hear about your planned treatment. I had bilateral mx in May. I was lucky that I didn’t need radiotherapy so was offered immed recon with implants. Like you I had been trying to imagine nothing there and I found it too shocking and jumped at recon though this is not without other problems. I guess I’m trying to say, there is always the option to have a delayed recon if you decide you want that.

A few things I experienced with bilateral mx. Most of the information/exercises I was given were for one mx e.g. use your unaffected arm to carry bags - but with bilateral you don’t have an unaffected side! I found the only way to sleep was flat on my back/or half sitting up - both uncomfortable - a big help for me was a V pillow to get into a comfortable position. I was told not to raise arms above shoulder height for the first few weeks - it helps to rearrange things you use often at home on lower shelves. At the start, I needed help with nearly everything really, washing my hair, dressing, making a cup of tea, I was in hospital for 6 days and had 8 weeks off work. I was able to drive in week 6 post op…

The week running up to the op is so hard with everything going through your mind. At least once you get into hospital things move quite quickly. Very best wishes for the op and your recovery. This site is also a great help once you’re back at home.

Luv Misha.

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Just noticed a thread under Reconstructive surgery which might be useful.

“anyone out there who has had bilateral mx and recon, then had all removed and now flat chested?”

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Hi Ang

Saw your reply on the other thread but thought I should reply here.

I’ll be frank with you because you’ll not trust me in the future if I’m not :wink:

I went in on the Wed evening, op was Thursday afternoon and I went home on the saturday. They said I could stay longer if I wanted or I could go home with the drains. Because I’d hardly slept (I’m a light sleeper and hospitals are noisy) I decided to go how with the drains. Drains is a horrible name but they’re actually tubes about 4mm wide that let lymphatic fluid from the surgery drain to a container, they just get in the way a bit that’s all. I wouldn’t worry about them (I did up front of course but actually they’re not that big a problem).

The pain was fine, I just took a couple of paracetemol every 4 hours for the first week and after a week I didn’t need them anymore apart from when they took the drains out which I have to be honest stung for 30 secs. Hold your breath when they take them out a little like having your legs waxed but actually it didn’t hurt as much as having your legs waxed (I am a wimp no 2 ways about it).

As for looking at the surgery site and how it felt. It was odd really, not monstorous or anything. I did the same as you trying to imagine what it would look like and my OH who’s a photographer found some beautiful portraits of women after surgery. The ones I saw at the hospital really upset me because they were just a picture of the womans chest not the woman. Pictures of people without showing their heads is disconcerting in itself. I’ll send you the link via a private message in a moment. It really helped me and I do look a lot like the woman in these portraits surgery wise now 6 months on. The scars have healed nicely and are blending in with the general colour of my skin and I don’t feel I have to quickly conver up when getting out of bed, and my Fiance doesn’t flinch when he seems me etc. I think we all worry about how it will affect us but I’ve been suprised by how much it hasn’t affected actually.

It took a month to get used to but me and my OH decided to look at the same time so that it couldn’t become a problem between us, we were just both delighted that the cancer had gone to be honest and I still feel that way. Having had 2 lots at the same time I was told that the chances of it happening again were far too high, especially at my age (34). So no messing around and I’m 100% sure I made the right decision.

You’ll be able to have reconstruction later if you choose to (I’m not) but it’s not a bad thing to have time to choose what kind you want and if you want it at all. I’ve adapted and don’t want more surgery and my boobs weren’t that important to me or OH so it suits me, I know very few people feel that way but it’s still good to have time to recover, do radiotherapy (and possibly chemo if you’re young as a just in case ) and then have reconstruction if you want. Having recon after radiotherapy is a much better plan of action as other will no doubt tell you when you get to that stage (if you choose).

Even with sentinel node biopsy they will take 1 lymph node out to check it’s all clear. but it sounds like you’ll be having a similar approach to my team which is to take as few as possible to check, this is good because it means you’ll recover faster and still have some flow of lymphatic fluid around your arms which means less risk of Lymphoedema in the future.

Don’t worry about chemo, rads, results blah blah yet, it’s all fine and manageable. I think we’d all rather go to alton towers but hey ho it’s OK. But thinking about it all right now will probably make you want to run and hide but there’s time to recover and have fun in between things.

One thing I would say is try and get some fresh air every day as soon as the drains are out. I’ve made a point of trying to improve my health this year by going for a short walk every day since my diagnosis and it’s made me so much stronger and able to cope so much better (and sleep better). You do have to work at the recovery from the surgery a bit, they’ll give you a sheet of exercises to do. If you do them every day you’ll recover much faster. It’s not a case of pushing yourself to pain, the opposite actually, it’s more gentle stretching so a little every few hours is what I did and I could walk my hands right the way up the wall after 10 days… that’s unusual apparently but I did gymnastics as a teen and stayed flexible so you’re state of health going into this really does affect how fast you get over it.

Sorry this is so long but I Hope it helps.

I’ll message you that link here in a sec, they’re really nice black and white photographs but they are of women who’ve had the surgery and healed (nothing gory) but they still might shock you a bit. I hope not, my imagination was so much worse than the reality.

I really really think that breast cancer care should make an album of pictures like this, we’re all scared at the start and need to know what we will look like after.

Angie

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Misha
thanks for your reply. My Consultant won’t do immed recon in case I need chemo/radio, so delayed recon will be my only option. I will not be having any lymph nodes taken away from my left brest as I have DCIS, which has not spread yet. The Consultant gave me the option to have a mastectomy on this and because she will have to take a fair bit of breast tissue away recommended a mastectomy on the left breast. (area of 3cm involved plus removing the surrounding tissue) I always thought I had a decent breast size but she thinks not (cheeky person). However I think I may need some lymph nodes taken away from the right side. I think she mentioned 2 although I could be wrong. I asked about sentinal node biopsy which she is going to perform, I dont know if this means I will get to keep my lymph nodes. Apparently this is a radioactive agent which is injected into the lymph nodes which tells you if its spread, the urine turns blue and also the body can turn blue, so look forward to looking like a smurf!!! (not)
I had not thought about sleeping. Did you not sleep because of the pain or because of the drains? I usually sleep on my side. I do have a V pillow as it happens, shall I take this into hospital with me?
I did not know about raising my arms either, pity most things in my kitchen are in wall cupboards!! My daughter who is 21 and lives with me will take some time off work to look after me. I did not think about washing my hair or dressing, I suppose ironing and hoovering are out of the question too. My daughter is in for a shock seems she will have a bit of housework to do. Think I’ll take advantage of it!
8 weeks off work to recover and 6 weeks to drive - oh sh…t (pls excuse the swearing - I have done a lot of this lately - dont normally swear), so I will be confined to the house or again be dependent on my daughter. I am soo niave. Thanks very much indeed for your reply Misha. Luv Ang x

Vertangie
Thank you for your reply I am suprised they let you out of hospital in such a short time. I am used to getting my legs waxed Vertangie and hate it everytime (which reminds me I am due - but may give this a miss for a while). Before long, if I have chemo, wont need to bother with that will I, I will have lovely smooth legs, along with my head! I will take your advice though and hold my breath. It worries me how I will look Ang as at the moment I have not got a partner and right now I dont envisage me ever having one. You are very luck to have the OH support you. The partner of 11 years that I had pis…d off to Tenerfie whilst I was awaiting my results. I decided I would not ring him and ignored his calls. His mum told him about me and he has now come back early but I think this is a guilt complex. I have decided I do not want or need him in my life right now. I need the time to think about me and come to terms with this awful thing that is happening to me. I think it unforgiveable that he left me in my time of need. I do feel I will need someone with me for the unveiling, I think that will have to be the breast nurse as I feel I will get pretty upset and I do not want my 21 year old daughter to see that. She is wonderful, I call her my brick because she is so strong for me.
Do you know Ang, I have always had a problem with losing weight as I have got older - Prob lose a few pounds now!
Ang I am so sorry about your problems, you are so young to have this happen to you, I am 51, If you have got thro this - then so will I. I do admire you.
Anyway I may or may not choose to have recon, we will see how it goes. As I said to Misha dont know if I need chemo/radiotherapy yet. My Consultant wants to send the ‘offenders’ off to the Path lab first.
I will get some fresh air every day, I think that is good advice and I think that must make you feel positive. I do try and keep myself healthy, eating right, exercise etc and this is what happens. I have done yoga before and found it helpful for the mind and body. I may take that up again at a later date. I was going to sign up for it before I got all this news.
Had a few drinks with my friend last night, and enjoyed it, almost forgot what was happening to me. (well nearly) Got a bad head this am.
Thank you very much for the photos they are tastefully done. Thanks for all your reassurance I appreciate the time you have spent in answering me. Luv Ang x

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Hey again.

You might find you’re not as shocked as you think, it’s all such a whirlwind in the first few months and the relief of getting the damn cancer out of your body is just as overwhelming I found. I practically skipped my way out of hospital like I’d been reborn or something mad.

They do like to study the offenders in great detail before deciding on the rest of the therapy. I was advised to do chemo because I’m so young and the cancers were so aggressive, because you’re over 50 that may not be the course of action for you, especially if the tumours aren’t high grade which may very well be the case. The younger you are, the faster your metabolism, the faster things grow etc so those of us under 40 are often advised to do chemo even if there’s no reason to believe there’s anything to be dealt with. As far as we know I am NED (no evidence of disease) which is as good as it gets but still doing pretty much everything just in case one little cluster of cells managed to break the barricades LOL.

Anyway whatever results you get there are loads of treatments now and some very effective drugs to help you through them too.

I don’t know what your daughters like but if it were my Mum (55 now) I’d happily have been there for the unveiling, it’s hard to know how to feel about it so don’t be surprised if you have lots of feelings. I expect you will.

As for your other half well I can totally understand what you mean. You want reliable people around for this roller coaster that’s for sure. But if you’ve been with him for 11 years I’d maybe give him a chance to pay penance, maybe he really didn’t think this could happen to you, none of us ever think we’ll be the ones diagnosed, I certainly didn’t.

But then my penances are tough… I mean breakfast in bed for at least a year, all the hoovering and if you can’t go to the pub then neither can he… that’s would be a start LOL.

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thx for your reply Vertangie. I hope I will feel like you did on coming out of hospital, but I used to like my breasts, and now they have turned on me, I need to think of getting rid of cancer and not my breasts. Re unveiling, maybe I should speak with my daughter and give her the opportunity to be with me if she choses. Incidentally iIf that is your mum in the photos that you sent me Vertangie she is beautiful. She looks fantastic, so young.

Blimey - Monday morning - how do I feel - 3 days before I get my beasts off. There goes my stomach again - feels like it’s knawing at me - like I’m so hungry - think I may need the toilet now! Period started yesterday again after 2 weeks. Although I’m 51, have had no experience of going thro the change yet so think this is nerves. I don’t know how I should feel… I don’t know whether I should give much thought to going into hospital and what I am about to undergo or whether I should try and put it out of my head until the time arrives. Do I try and get my head round this now, or try and put my head in sand? Can’t think straight, my mind is darting all over the place, can’t concentrate on anything for too long.

Oh dear, I feel so worried - going for my pre op assess on Tuesday - oh dear thats tomorrow. Need the toilet again…

Ang

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nah that’s me probably, mum’s not in any of those pics (shes a rock chic) although she is young and does still look it, we were often mistaken for sisters when I was a teenager (she was in her 30s).

I know what you mean about seeing it as getting rid of the cancer not the breasts. I didn’t feel like that until after the op but then I suddenly did. Can’t really explain it, apparently while I was still woosy from the anaesthetic I did claim that the cancers all gone now… how I knew that I don’t know, ravings probably but it was right.

I’d put it out of your mind if you can in the evenings… watch movies that make you laugh and distract yourself at least some of the time but at the same time you wouldn’t be human if it didn’t play on your mind some of the time, it just important that you try to relax if you can so you’re not totally wrung out before you go in, almost impossible to do but even an hours respite is a good idea if you can.

I went for nice long baths and ben stiller movies (just cause he makes me laugh… zoolander is one my faves) and stand up works for me too.

Try to think of it as removing the cancer and your boobs’ll be back in the future if that’s what you want later.

My stomach went to pieces before the op too. all part of the process of reminding you that you’re human and not completely in denial. I absolutely promise that the waiting is the worst… don’t think there’s a single person here who’d say otherwise.

Time to distract yourself I’d say.

Have you got all your bits together for taking in here’s my recommendeds list.

V shaped pillow.
wet wipes.
cotton knickers.
ipod/walkman
ear plugs and eye mask (wards are noisy)
good book
money for patientline and snacks etc
rescue remedy pastilles (actually the rest of my ward got addicted to those, but don’t let anyone have them pre op :wink:
magazines as your attention span is likely to be short
lucozade
nice comfy dressing gown

Where about are you BTW. I’m up north in Cumbria.

If I’m honest the worst thing I recall from the op is getting really really really bored :wink:

And I don’t *do* bored :wink:

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Oh yeah, you want button up pyjamas. you really wont want to (or be able to) pull anything right over your head for a couple of days.

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Hi again

I couldn’t sleep on my side as I used to as it was too painful even after the drains were out. It’s a bit of trial and error with V pillow and other pillows to try to find a comfortable position.

In the sentinel node biopsy(SNB) they inject radioactive markers and /or blue dye to identify which is the sentinel lymph node i.e. the first one (or it can be 3 or 4) that drains fluid from the breast. This node is removed and if clear of cancer then the others will also be clear so you can keep them. If the sentinel node is infected then another op is needed to remove all the lymph nodes. So SNB can save unnecessary removal of healthy lymph nodes and the bad side effects of this. Hope your result is good.

At least if you’re having your period now hopefully it will be over by the time you’re in hospital. Mine started the days after the op - just when I thought the nightmare couldn’t get worse. Well you should have seen me trying to use a tampon - sorry quick change of subject needed…

I know how hard the next few days will be. Just try to occupy your mind with anything to get through it. You know people on this site will be rooting for you.

Best Wishes
Misha

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Once again thank you vertangie and misha for your comments. I have taken note of what I need to take in hospital. I did get pj’s with vest tops but then someone suggested I get them with buttons as I prob wont be able to raise my arms so have been out today and got button up ones with short sleeves (for the drains), what you have to think about! Also just heard today how and where they inject you for your SNB oh perish the thought! just wont have to think about that one! I do like the idea of not having to have nodes removed tho. Oh dear 2 days to go… today Tuesday am going for preadmission assessment…May get to know a bit more today hopefully - what grade and how far its spread. Im told they will give me a copy of results, which will be written in english, so I can understand them. Just hope not spread into my body.

luv from Ang (worried, anxious, nervous, frightened, scared…etc etc) luv to you both
P.S. I am in the North East, Teesside.

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just thought of something. Can anyone help with this one? As I am having bilateral mastectomy do I need to take a bra into hospital with me for coming home? what size bra shall I take? I also think my consultant does not like underwired bras and all mine are underwired. Wonder if this has anything to do with the cause of breast cancer? Do I get to make my choice of what size I want to be afterwards? (at the moment I dont think I could make that decision). Do I want to be big, small or the same size that I used to be? Any comments please? (Before I go into hosp on thurs please) - time running out…or shall I just wear a boys T-shirt! Will my size change? I wear size 12 tops now will this change?
ang x

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Hi Ang

Please call our helpliners for some advice on your queries about your surgery, you can call today 9am-5pm (weekdays 9am-5pm and Sat 9am-2pm) on 0808 800 6000.

Best wishes
Lucy

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Hi Ang

I had a bilateral matectomy 2 1/2 weeks ago. All the advice above is great (would have been great to have pre-surgery). My breast Care Nurses advised tight fitting camisole tops (lycra type) for coming home so that I could pin the ‘softies’ (first false boobs) in as they are very light and fall out if using a bra. I did take a bra with me (my choice of cup size and fantastic to reduce significantly for me) so the softies would fit when I am ready. The Breast Care Nurse tried this on with me before I came home but my chest wall was swollen from the surgery so stayed with the cami tops anyway. I am very happy to go without - not too horrendous at all looking at the results - I think the surgeon did a fantastic job. One thing my breast care Nurses recommended, if you are into alternative therapy is the use of arnica tablets to reduce the bruising after surgery. You can get them at Boots I know, or a Health Food Store. I am so pleased to have had bilateral and the added bonus of choosing my own cup size is great. I have heard of people who have a range of sizes for different events even. The NHS supply prostheses every two years but you can also purchase them privately (though very expensive). I will get fitted in around another 3 weeks for my silicone prostheses but did see them in my bra already and they are great. I will be sticking with the NHS ones without a doubt. Hope it all goes well for you. Tanya, down in the South.

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I had a bilateral mastectomy 8 years ago, with immediate recon using tissue expander and then got replacement to implants 2 years later, however, I got a severe infection on the implants 2 years after that (4 years ago now) and had to get them urgently removed, and I didnt get the implants replaced at the time,and didnt get told this, so when I woke up from the operation, I had nothing there, just skin where they had stretched with the tissue expander, and my nipples hanging below, I was in total shock, as I thought they would have replaced the implants or just flushed them out and replaced them, but they didnt and when I asked the consultant about this, he said they needed to get the infection cleared up first and possibly 6 months before we discuss the reconstruction, however, 2 months later I got my nipples removed as there was still some infection in them, and they had a discharge. and they removed the excess skin that was there along with scar tissue and damaged nerves.

All so emotional upheaval, but I got fitted for prosthesis, the softie ones to start with, and then 6 weeks later got my silicone stick on prosthesis, and well my world changed for the better. I love my stick on boobs now, and when I put them on and wear what I want it is great, you cannot tell the difference.

But I must be honest, it was strange at first when I looked in the mirror to see myself. And I am slim, so at the moment you just see my outline of the ribs, (this isnt the size zero ribs, ) but no fat, I am naturally slim, and at 42, I didnt want further surgery, as I had been offerered reconstruction, using abdominal muscles, muscles from the back, and even my bum and thigh, but it would mean more surgery, and possibly more painful healing and risks of problems long term. So I decided that I wouldnt have any more surgery.

I then learned to love my body again, and looked at myself in the mirror to see how anyone looking back would see me, and it wasnt half bad. I got my partner to look at me and start to say how he really felt, and he said that he couldnt touch my boobs before my mastectomy as they were really painful, and he said I look just as lovely naked. I still ask for reassurance when he sees me in the shower etc, and it makes me feel good.

I do feel whole when I put my ‘boobs’ on, just like you do when putting lipstick or shoes on. They have become part of my life now, and I have now done loads of media with me wearing lingerie, or naked over the past 4 years. I was even on Trinny and Susanah Great British Body tv show this year as a feature, loving my body, and I have just done a photoshoot for a national newspaper for Breast Cancer Awareness Month, I did this with 2 other lovely ladies, one of whom had reconstruction on both breasts, and the other had one breast removed, we were all naked from the waist up. I think it will be in the papers The Mirror this week, look out for us.

I hope this helps, as being without my breasts has had its ups and downs emotionally over the years, but it does get stronger, and I have other things that bother me more, like cellulite, and wrinkles !! I have also got severe nerve damage around the chest area, and now diagnosed with Fibromyalgia, (painful muscles throughout the body, like having constant toothache but from head to foot), and they think this has came from a factor of my infection in the implants, as it is normally this that can trigger it off, with this also I have Chronic Fatigue Syndrome/ ME, so each day is like snakes and ladders, up and down…but I still have a pulse and that is what I love…

The only hardest part I have to deal with having no boobs, is getting lingerie that is feminine and sexy and colourful, but as you all know this is a strong subject, and dont get me started on it…!!!

take care and hope your operation goes well on Thursday… big hugs but gentle ones.
xxx

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Wow puppydog1, what a story. Glad you’ve adjusted to your new body shape. Like Ang I couldn’t do recon at the time and 8 months on there’s no way I will I think just don’t need to. Fibromyalgia is a tough disease to handle, respect to you for taking all that’s been dealt to you on board like that, I know it’s the only way with disases like that but still respect anyway.

As for the lingerie subject… yep know what you mean, maddening isn’t it.

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Ang.

I didn’t bother wearing the softies when I first got out, I just wore baggy jumpers as I didn’t want anything against my chest. But you can get post surgery bras online but if you want something just for the next couple of weeks go for a bra that’s soft and has a nice wide band around the rib cage so that there’s as few pressure points as possible.

Don’t know of any good mastectomy bra shops in teesside but there’s one in Leeds if that helps (Oops and Downes).

Angie

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Lucy
thanks for your comment. I will ring you at somepoint today Wednesday for some advice. I went for my pre assessment hoping to get more info etc. but I got a General Surgery Reg who did not have a clue on what my diagnosis was, let alone give me advice. Total waste of time for me. All he did were my checks, weight, height, bloods, blood pressure (which was up) etc. I thought I would see a breast nurse or someone who at least knew what I am about to undergo so that I could get MY questions answered. I did then try to speak to the breast nurse but she was off this p.m. Will get some questions together Lucy and try and catch you today Wednesday if thats okay. Thanks Lucy luv Ang x

TanyaA
Arnica eh? actually someone else mentioned this to me but thought I ought to wait for my pre assess to get advice but as you can see from above it was a total waste of time for me. TanyaA, I love the sound of choosing cup size - that is a benefit to this damn disease (that’s if there are any benefits), but then I suppose getting rid of the cancer is ONE BIG BENEFIT. Did you go for a different size initially or did you stay with the same size that you were? and do you have to choose whilst in hospital, or do you get time to decide. Thanks for your good wishes TanyaA. luv Ang x

Puppydog1
Sounds like you have not had a good time with your recon, I am so sorry. You sound very uplifting to me (forgive the pun), when you talk about your prosthesis -this sounds promising. I am short and on the plump side puppdog1 and I think I will just look flat chested and then pregnant, my belly does not look THAT big now, but it will probably look even bigger when I have a flat chest. I don’t blame you for not wanting more surgery, I don’t think I would (or will). I have no partner to reassure me and I have got to say that I dont think I will ever have another one now. It must be reassuring to you when your partner says that to you. I respect and admire that you have done photoshoots, how did you get into that? I like watching Trinny n Susanah and I probably saw you there. I did admire the lady who had alopecia she was fantastic, had a fantastic attitude. She was so beautiful too, even without her hair. I must get the Daily Mirror, I would love to see the article. Plse let me know what date you will be in, I will look out for your piece. After hearing your story Puppydog1 maybe we should be thankful for what we have. I am glad you have come thro this but sorry with how it has left you with along with your other problems. Thanks for your good wishes puppydog1 and hope everything goes well for you in the future. I have 1 day to go! Luv Ang x
P.S. I love my pulse too. Thanks for the hugs but mind my sore boobs!

Vertangie
Once again thanks for your comments - what a story on puppydog - how admirable - she has certainly done the rounds… but hey ho we are all still walking Gods earth. This website certainly makes me feel a stronger person. I will bear the Oops n Downs in mind Vertangie when looking for a bra. Leeds is not too far from me. Luv Ang x