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Risk reducing double mastectomy ... Feeling totally disheartened ...

(43 Posts)
Teardropsonthedancefloor Wed 01-May-13 12:03:47

I'm a BRCA1 gene carrier and I'm on the waiting list for a risk reducing mastectomy .

However , after going to get measured for the rounded implants , I've now been told I don't have enough skin to cover them sad

I'm only in my 20s and after 2 breasted kids , I was hoping for a bit of a lift and more confidence; it's taken me a long time to accept the fact that I need this surgery and the "boob job " was the one thing I was seeing as positive .

I don't mean to sound ungrateful - I know I'm lucky to be in a position to try and prevent cancer , but I just can't help feeling totally gutted .

My other option is reconstruction using my tummy muscles but with 2 toddlers and no childcare / support , I don't even think I can consider this one sad

I have been told I could have the "teardrop" style implants - but they are still going to hang low and because I want to keep my nipple , they will basically look like they are heading south as they do now !

I cried like an idiot in front of the surgeon whilst he stood there with his colleagues measuring me up like he was looking for the best cuts off a pork loin sad blush

I don't know if I should just wait for a few months to get myself in a position where I'm a bit happier with myself - I want to lose 3 stone for a start !

I'm worried in case I go ahead and I hate the results even more than I hate my natural ones .

Any advice ? sad

Teardropsonthedancefloor Wed 01-May-13 12:04:39

Also worried about deferring the operation in case I actually get cancer in the mean time as BRCA1 tumours are meant to be more aggressive sad

dustyhousewithdustypeople Wed 01-May-13 12:12:45

Could you speak to the surgeon again? It's hard to make decisions and think through the options when you're upset. They want you to be happy with the result.

Ledkr Thu 02-May-13 14:10:15

Sweetie. I had that when I was 26 already had cancer so one boob is scarred and the nipe flatter than the other.
But you know what? I'm ALIVE twenty years later I've had two more kids and I hardly worry at at all.
Pm me if you want to talk about living with less than perfection.
I live a happy life and went through being single like it and am nipe married to a gorgeous man.

gordonpym Thu 02-May-13 20:24:15

The fact to have insufficient skin for breast implant after mastectomy is quite common, and a normal procedure is to use skin expander. Did your surgeon mention this possibility? If not, I recommend you talk to him again to see if it can be done in your case.
You may read more about skin expansion and expander here [http://en.wikipedia.org/wiki/Tissue_expansion wikipedia]] and here american society plastic surgeons. You can also watch a couple of videos about it www.youtube.com/watch?v=J9B23xnIoTw and www.youtube.com/watch?v=esHztsX-uFE. No blood is seen, the first is an animation the second a speech by a surgeon.
Read, browse the net, do some research, and go back to your surgeon with questions and facts on a sheet of paper.
HTH

gordonpym Thu 02-May-13 20:25:55

sorry here is the link for the wikipedia page

uwaga Thu 02-May-13 20:32:19

I'm brca2 and had a risk reducing double mastectomy last December. I had immediate reconstruction with the teardrop implants and my boobs look great, even if I say so myself! I kept my nipples too - had some healing issues and have lost some of the areola on one side but that aside I couldn't be happier with how they look. I don't need to wear a bra but if I do my boobs are right up under my chin! I'm glad they're not there all the time as it feels a bit 'hello boys' which is not really me.
I didn't love my breasts beforehand (breast fed for 18 months) and although no one would choose this surgery I am happy with the way they look now. The best thing about having the surgery though is the removal of the constant fear of breast cancer. DCIS was found in my pathology so I know 100% that I did the right thing.
Good luck with the decision-making, it's definitely the worst bit. I took my time picking surgeons and type of surgery - it was 10 months from making the decision and going on the waiting list to having the surgery for me. Although it was stressful at the time, I'm glad I researched thoroughly as I ended up with the right procedure and team for me.
Let me know if you want any more info.

Teardropsonthedancefloor Thu 02-May-13 20:59:35

Thanks for the replies . Sorry I haven't been back sooner ; I'm in such a weird state right now .

I'm constantly crying and I feel so alone sad I have nobody in rl to talk to .
I feel so angry that I'm in this position . And again I KNOW I'm fortunate in another sense to have the opportunity - but it doesn't feel like it .

I swear if one more person says "just get it done and then you can forget about it ...." I may actually punch them hmm

I dont fully understand what he said i can have; he said Im nit auitable for ANY implant , then in the next breath he was talking about mesh and other stuff confused

ledkr that must have been tough but what a positive outcome ! I need to get my head around the fact that its not the end of the world !

uwaga I'm pleased you like them ! Can I ask, are they heavy / painful ? Have you had any problems with them rotating ?

uwaga Thu 02-May-13 21:21:53

I had strattice with my implants, which may be the mesh he mentioned. I can't imagine that you wouldn't be a candidate for implants full stop - it's normally only prior radiotherapy or more rarely autoimmune problems which preclude them.
No, not too heavy or at all painful. I'm the same cup size as i was before (32dd) but they feel a bit bigger and a bit heavier than my natural breasts. No problems with rotating but it is early days I suppose.
Did the surgeon show you any pictures of his results? Would it be worth getting another opinion? Surgeons understandably favour the reconstruction methods they're most familiar with, even though it may not be what you want or the best procedure for you.

Teardropsonthedancefloor Thu 02-May-13 21:41:54

Is Strattice where they kind of patch over to make the fit iykwim?

He mentioned scars on the actual breast rather than underneath ? I'm actually not too bothered about the scarring or where it is ; I just desperately want implants because I have young kids - the other Ops are not an option for me !

Teardropsonthedancefloor Thu 02-May-13 21:45:54

Also, how long did it take you to recover ?

Were you bed bound for a few days / weeks / months ?

Ledkr Thu 02-May-13 22:26:12

Bed bound? Nah. It was initially painful and you have drains in each side and I had a drip too plus a self administered morph one pump.
I was up the next day and home after a week but I think it's even better now cos obviously I'm old ha ha.
My boobs look beautiful under clothes. 46 and don't need a bra and wear back less tops etc.
I had one night stands and longer relationships since and it's not an issue.
Why don't you have anyone to talk to?
How sad. Where are you roughly?

paddyclampo Thu 02-May-13 23:13:39

I'm having this op later in the year due to family history. I'm having the strattice method. I've never heard of them saying you can't have implants cos you've not got enough skin - i'd be going back or finding myself another surgeon!

gingeroots Fri 03-May-13 08:24:55

teardrops so sorry you're going through this .

You might get even more advice/info on here
www.mumsnet.com/Talk/general_health/1741918--TAMOXIFEN-35-the-all-dancing-fat-boy-snacking-and-drugs-thread?pg=16
there are some very knowledgeable people who post .

love your username .

uwaga Fri 03-May-13 08:48:57

Hi
Strattice is a mesh they use to give better coverage to the implant. It can enable the surgeon to perform a one-step surgery direct to implant (without use of expanders, which is the traditional method). I had the one-step, mainly because I wanted fewer surgeries and a quicker recovery as I have a 3 year old. For this reason the other surgeries using muscle or tissue from other parts of the body were also out of the question for me. Plus I never liked the idea of sacrificing other body parts to recreate breasts.
My scars go under the nipple and out towards the armpit. They are very thin lines and I can imagine that in a few years they will be barely noticeable.
My recovery was pretty much what I expected. I was in hospital for 3 nights because I had a bad reaction to the anaesthetic and was extremely nauseous for 36 hours. That was the worst bit. Pain wasn't too bad and by day 3 I was taking nothing stronger than paracetamol. I left hospital with drains in and they stayed in for a total of 10 days. They are a bit grim but the relief when they come out is amazing. I felt pretty wiped out for a couple of weeks but was starting to get back to normal by week 4. How old are your little ones? There are lifting restrictions for the first 6 weeks so I definitely needed help with DS, who was 2 at the time. Luckily my husband was able to take a bit of time off work to help out. Like you we don't have a great deal of other support so it was tough, but just about manageable.
I'm sorry to hear you're struggling so much. It is a huge thing to deal with and it's ok to feel upset and stressed and bitter and jealous of all the non-mutants! I dealt with it by doing loads of research, reaching out to other women in similar situations online and having counselling. The latter was the best thing I could have done and I think I would have found it much harder without my counsellor to talk to. Is this an option for you?
The relief I feel now is as much to do with the fact that I don't have to think about the bloody operation any more as it is to do with reduction of breast cancer risk! It took over my life for the best part of a year and I'm so glad to put it behind me now. I'm sure you will feel the same way and will be saying the same thing to someone else a year from now.

GreenEggsAndNaiceHam Fri 03-May-13 08:58:16

Where abouts are you? Anywhere near London?

I had a mastectomy fir cancer, then a risk reducing one a year later. I had had previous breast surgery so my skin was scarred and thin. My surgeon was brilliant at making something out of nothing. I was advices not to keep my nipples as they are breast tissue. I have a friend who is braca. If you are interested I can pm you the name of my surgeon, where she did work, where she works now and the braca website my friend is on?

smee Fri 03-May-13 11:44:54

I'm like greeneggs, so one for cancer, one preventative. Had expander implants both times, now replaced with silicon. Also have no nipples, but then if you've had cancer already they do tend to take everything. It's a v.tough thing to do, but all I'd say is right now it's wrecking your life anyway. All you can do is go ahead - I mean that as kindly as I can, but you can't live in limbo like this and if you don't there's a huge chance of cancer, which you clearly don't want.

So take control - ask for another appointment, go back and take someone with you who's clued up and has can ask questions. Plan what they can do, get a date set. Another thought, but see if they'll let you have access to Breast Care Nurse - they're brilliant and will spend time talking to you, be your advocate at meetings with surgeons, etc.

It's very, very hard, but get past it and live. + yes, you can now punch me as hard as you like. smile

Ledkr Fri 03-May-13 11:49:54

Me too. One good un one bad un. They can both fuck off too.
Good riddance to bad boobies.

GreenEggsAndNaiceHam Fri 03-May-13 14:12:39

My experience of the operations was really very positive.

I had a 9 month old baby with the first one and the hospital let me stay in hospital for a week after the op till my drains came out. I was never in pain or even really uncomfortable.

I think hospitals try and discharge you with drains in place these days but I don't think that would have been practical for me with a baby at home

Dd could walk by then so I don't remember the no lifting being a problem. I could push the buggy a few weeks after the operation.

From experience there are done things I would recommend to make the experience easier. Ask for certain things to be put on your medication list by a doctor before the operation. So diazepam and ant sickness injections. Then if the painkillers make you feel a bit sick the lovely nurse can jab you and you will feel fine. You shouldn't be in pain, so don't suffer. The diazepam helped me sleep the night before the operation.

It is a horrid decision to make, I was lucky, I had no decision , mine had to be done. My wonderful friend who I met in hospital( see there are some positives!) had more to deal with I think as she is braca.

I think my breasts look a bit American fake, but who cares. Not me.

I am glad my nipples are gone too, less breast tissue to worry about.

Ledkr Fri 03-May-13 17:51:51

For me it was a very easy decision that I've never regretted and modern pain relief is amazing too.
I love my firm boobs especially at my age my mates are all jealous.
When I met dh I was a bit bashful of scars etc then he helpfully pointed out that a lot if women my age have issues with their boobs even without an operation.
I love the lack of worry and mammograms too.
My freind was with me for the op and said I seemed a different person even when I woke up she said the relief was on my face.

Teardropsonthedancefloor Fri 03-May-13 19:18:52

Thank you so much for the replies flowers ; every single one of your posts is so helpful .

I'm in Scotland . I don't really have anyone to talk to as my mum does of cancer a few years ago & the rest of my family are down south , we aren't close at all. sad I have friends but nobody close .

DH and I aren't on great terms either and I just don't think he undertands at all . My two DDs are 3 and 1.5yrs.

I'm worried about the hospital stay - I can't be in for a week - I have nobody to watch the girls ! And I have never been away from them for that long .

I'm irrationally worried in case I die on the operating table blush

And Im petrified of drains - do they hurt when they come out ?? I've heard stories of people passing out with the pain of them being removed .

I'm so pleased that there was no bed boundedness (word ?) and that you all seem to have had good outcomes .

uwaga that sounds similar to what he was talking about I think - I can't remember much through all the tears blush

ledkr you made me laugh "good riddance to bad boobies " grin

GreenEggsAndNaiceHam Fri 03-May-13 20:01:46

I thought I was going to die on the operating table too, it seems it is a common worry.

You don't have to be in for a week, I would imagine the hospital will want to discharge you after a few days .I wanted to stay in but I can see why you would want to come out.

I had no one to mind DD either, we managed it at very short notice. Wonderfully our local Sure Start centre gave our DD a free emergency place for a few hours a day. I don't know if you have anything like that in Scotland? DP had to take some time off work too.

As for the drains, if it hurts tell them to stop. I have had drains removed that hurt like anything, then I found a nurse that knew what she was doing...If it hurts ask them to stop for now, have a diazepam and get someone else to do it. I sound like a junky what with all the diazepam talk but have only taken it twice in my life, both in hospital.

I had never been away from DD for that long, she was fine. It a really odd way my cancer has helped make her the strong, independent, feisty, bright and loveable thing she is today. She went to nursery, all sorts of friends looked after her, she came to hospital appointments with me and loves hospitals now. All that riding on beds and animals made out of surgical gloves. She thinks all doctors are female as I had a female surgeon and oncologist.

I will PM you some info later .

Have a very un MN hug

uwaga Fri 03-May-13 20:29:49

I thought I was going to die on the operating table too, despite having had several operations in the past and knowing rationally that it was extremely unlikely.

If it hadn't been for the nausea, I could have been home the day after the operation. As it was I couldn't get out of bed so there was no way I was going anywhere. I'd never been away from my son for more than 36 hours so I was really worried about that side of things but he coped fine. He was a bit off with me when I first came out of hospital and called out for his daddy more than me but things soon got back to normal.

For me the drains were fine. One was a bit uncomfortable coming out but the other one I didn't feel at all, I think partly because I have no sensation on that side. It depends on the individual and the competence of the person removing them, as GreenEggs said.

Im sorry to hear youve lost your mum. My mum died of breast cancer 2.5 years ago. It was so hard going through this without her and I would have given anything for her love and support. But I knew that I would have had her blessing and that if she'd had the same information at the same age, she would probably still be here, enjoying retirement and being a granny.

I can't emphasise enough what a positive difference the surgery has made to my life. I laugh with my whole heart now and I feel like I'm really living for the first time in a long time.

Teardropsonthedancefloor Fri 03-May-13 21:30:21

I'm absolutely overwhelmed by all of your honesty and kindness ... I'm off crying again !

I have felt so alone on this journey and it has made me angry and snappy and tearful - reading all of your experiences has helped hugely .

I'm going to go back to my surgeon and ask about the Strattice - I hope I can do it without crying ! Every time I go there I'm on the verge of tears and I honestly don't know why because I feel ok at that point - maybe it's a sub conscious thing ?

I'm pleased I might not have to stay in to long .

Again, thank you all for your posts - I can not express in words how much you have all helped me . flowers

Ledkr Fri 03-May-13 22:42:13

Nice to be able to help.
Macmillan were very good to me and paid for a friend to stay nearby when I had my op.
I agree about asking at children's centre and see if ss can get you a home help.
Stranger things have happened than local
Mumsnetters helping strangers so post on local boards.
I thought I'd did too and when I had my sections and ill think it again when I have a minor op soon. Life dealt us a shitty blow so we can't help fearing the worse. Very rare to die under a ga these days and the anethetist will reassure you.
Drains feel a bit weird rather than painful and agree some nurses are better at it. It's momentary though so just breath deeply.
We will all be here with you and it will be the best thing you've ever done.
I have never regretted it even with my less than perfect right boob.
Sleep well.

Teardropsonthedancefloor Sat 04-May-13 07:05:00

Thank you ledkr

You mentioned sections in your last post - have you had c sections as well ? I've had one and recovery was fine - which would you say was easiest recovery wise - section or mastectomy ?

Sorry if I've got that totally wrong ! blush

Ledkr Sat 04-May-13 07:55:29

If I'm honest I'd say the section is easier but they are very close tbh.
Obviously movement is the sore thing but I don't remember being in agony. I was sick from the morphine which was worse than the pain and it took days to go off so my focus was on that really.
I had four sections my first 26 yrs ago .and my last two years ago.
I couldn't believe how good the pain relief is now, I was up few hrs later and home after two nights. I think things have moved on so far now with surgery.
I wish I was nearer to you. Me and my family would help you.
Would you like my mobile number so we can keep in touch over the coming months?

gingeroots Sat 04-May-13 09:42:34

They have really good and varied anti nausea drugs these days so please ask and ask again if you get to the stage where you need them .

GreenEggsAndNaiceHam Sat 04-May-13 13:44:26

yes, anti nausea drugs are the business. Get the injections listed on your med sheets pre op, so you can get one as soon as you start to feel sick. I found the injections worked a lot faster than the pills.

coorong Sat 04-May-13 16:43:51

Hello tear sorry to hear you're facing the double whammy. I've just had one for BC. I had a reconstruction using back muscle which I wouldn't advise if you're having both.

Anyway, re the drains. I had three drains, 3 back and 1 front and there was no pain having them removed, only a gently tugging on one of the back drains. As for recovery,. I had a long operation and lots of nause, but the drugs trolley was fab (think nightclubs!).

As smee says, take control. I found the BC nurse great, and I certainly shed a few tears - they're used to it. Don't feel embarrassed. Breast cancer.org has details of different operations, and if you're not happy with what your surgeon offers, ask if you can see a different surgeon at the same hospital.

Re child care. It would be a really good idea to get someone in the house the few days you get back. Can someone pop up from down south for a few days?. My sister inlaw was a lifesaver and gave my 2DD the attention I couldn't. I realise your DH and you are having issues, is it worth him attending the consultants with you? I don't know, just a thought.

flowers

bicyclebuiltforfour Sat 04-May-13 17:02:47

I have no experience of breast cancer, but I had ovarian cancer a few years back. Having DH sit in on all the consultations really helped: getting that extra person's perspective, having someone there who was (slightly) less emotionally affected by it all. It also meant that there was someone else who had heard what was said and so could remind me of it when my mind played tricks on me and I mis-remembered things.

I spent most of every consultation fighting back tears too, so don't worry about that. They'll have seen it all before. Cry, get it over with, and then you can focus on the job in hand.

My point is that I'd recommend you take someone with you for your consultations. It really really helps.

If you can't take DH, try Macmillan or ask at your hospital. They may well have someone who can come with you (hospitals sometimes have volunteers to act as 'friends' for patients). Heck, I'm sure someone from MN would come if they lived close enough (I would but I'm in the USA...). Having someone there sharing the burden with you may well be a huge relief.

Ditto childcare. Have you thought about asking at your local church (whether or not you attend one)? People there may well be happy to help out if you'd be comfortable with that, if only to cook for you: we do it over here all the time.

Teardropsonthedancefloor Sat 04-May-13 21:01:04

Ledkr thank you that is so kind of you .

I'm astounded at the support and kindness I have experienced on this thread ; it's nice to have support from people that have experienced this or similar .

Ill definitely mention anti sickness drugs and ask for them on my notes .

coorong is there a reason why you wouldn't recommend the back op for a double mastectomy ?

I did take DH with me to the appointments but as we had to take the baby too he didn't really hear much . I think I might ask a friend to come with me next time to be a listener and find out exactly what Im being offered .

coorong Sun 05-May-13 15:38:04

there is slight movement restrictions with the LD transfer and depending on your size etc, you may want implants aswell. But best go with what's clinically advised - talk to the surgeon and the BC nurse - they usually have a broad perspective having seen hundreds, if not thousands, of women go through similar experiences.

It's really important to have a second set of ears at the appointment. A friend is good, but perhaps your friend could mind your baby while DH attends the appointment. Sorry if I got the wrong end of the stick, but I got the impression he wasn't on the scene - please don't be upset - I rpobably didn't read your posts carefully enough. If he is, it would really really useful if heard from the surgeon about the operation, how long you will be in hospital and your recovery schedule (ie how long you'll be out of action, not driving etc).

Teardropsonthedancefloor Sun 05-May-13 20:40:25

coorong - thank you - that makes a lot if sense .

DH is on the scene , but things aren't great between us and I don't really get any emotional support from him .

After the appointment I was so upset and he went to play golf hmm

coorong Sun 05-May-13 21:47:27

That may be his way of coping. Some of us aren't great at dealing with health issues, particularly when its someone else to whom we are close. If he is a task oriented person, perhaps use the appointment as a way of getting some specific role he can play. before during and after.

So instread of asking for emotional support, ask for practical support. I don't know, I'm not a therapist, but perhaps this is a time to play to his strengths. good luck

Teardropsonthedancefloor Fri 06-Jun-14 19:51:13

Hello ladies! I'm back!

I've returned to this thread as a little over a year ago I had amazing support here flowers

I've been on a very strange journey with this over the last year with a breast cancer scare .

I finally got a kick up the back side and have my appointment in the next few weeks!

I'm in a much better place than I was before but still very nervous.

So the thoughts currently going through my mind..

Fuck fuck fuck fuck!

I'm going to die on the operating table!

What shall I have for my last meal grin

I still don't have any real support so I would love it if you lovely people could hold my hand for the next few weeks?

Teardropsonthedancefloor Sun 08-Jun-14 10:16:34

Anyone ? blush

Jenijena Sun 08-Jun-14 10:27:20

Hello teardrop, don't have any practical advice to give you, but glad you've made some progress and can at least say hello!

paddyclampo Sun 08-Jun-14 13:49:11

Hi Teardrop

I had my risk reducing mastectomy in November and I lived to tell the tale! smile

Also I'm very pleased with the results!

Like you I was convinced I would die under the anaesthetic and was very nervous. I don't even remember the point at which I was knocked out but I do know that I didn't have any sensation of time passing. I couldn't believe it when they said that all those hours had passed!

I didn't feel at all ill after the op, was a bit washed out that's all. The drains were definitely the worst bit, the pain was bearable and pretty much non-existant if I took everything they offered me!

Because I had the strattice I had to have the drains in for 2 weeks. The implants I had also had expenders to stretch the skin.

I have NO regrets about what I have done and am 100% back to how I was pre surgery now smile

Good luck!!

Teardropsonthedancefloor Sun 08-Jun-14 21:19:26

Thank you both for your replies.

Can I ask about the drains? Does it hurt when they are removed? I'm not good with pain!

How long were you taking painkillers for?

StillProcrastinating Sun 08-Jun-14 22:31:05

I've had one done, waiting to get the second off later this month. My drain didn't hurt at all. Nurse made me take a big breath in as she pulled it out, and i didn't feel anything.

My surgeon tried to push me down the back tissue rebuild root, but I pushed back and have gone for implants. Personally I think he just liked to do the other operation as it was more interesting for him.

Am sure you'll be fine. I had a wobble on the way into the theatre, but because I was there because of DCiS I knew I had no option. It will be different this time as I am electing to have the other removed, but I am just going to remember to breathe and get on with it.

Good luck!

paddyclampo Sun 08-Jun-14 23:14:04

The drains didn't hurt, either when they were in or when they were removed. I hated them because I had to carry them round everywhere and kept forgetting about them!!

I had painkillers for about a week afterwards but to be honest after the first couple of days I just took "over the counter" ones like neurofen.

I'm definitely glad that I went down the implants route as it's a much less complicated op!

ICanSeeTheSun Mon 09-Jun-14 20:14:54

Op I watched a documentary the other month and it's possible to have a nipple tattoo.

I don't know if this could be an option for you.

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