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

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

Message withdrawn at poster's request.

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

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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 [ wikipedia]] and here american society plastic surgeons. You can also watch a couple of videos about it and 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.

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

Message withdrawn at poster's request.

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

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

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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
there are some very knowledgeable people who post .

love your username .

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

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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.

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