Been lying awake for the past couple of hours thinking over stuff! As you do!
Had my last chemo today and now have to make a decision regarding surgery early,next year. Had 2 WLE on right breast before chemo but still showed DCIS and small invasive area. Only option now is mx but I am so undecided about what to do. Saw plastic surgeon and reconstruction nurse yesterday who were very helpful but the variety of options is just confusing me!! My gut reaction was to have a double mx - get rid of both and hope this horrible thing never comes back but my surgeon has explained that I will be monitored more closely now and that the chances of anything happening in my healthy boob will be picked up a lot sooner.
I’m so confused!! The DIEP flap seems to give the best result longer term but at the moment I don’t feel it’s the option for me as the long surgery and recovery time are putting me off, especially with 2 very active boys at home. The plastic surgeon did say that this could be done years later if I opted for implant now then chose other surgery in a few years time when it was more suitable.
I’ve been reading all the threads with interest and know everyone’s experience is different. We all make a choice and decision based on our own situation and advice from professionals and friends/family but ultimately I’m scared I make the wrong decision!! Anyone got any advice they can offer please! Xxx
you are right it is a very difficult decision to make particularly at a time where you are still going through surgery. I opted for a single Mx, did consider double but after speaking to my surgeon again was told they were reluctant to remove healthy tissue and the chances of it coming back in the other breast was very small - although since I have known of a lot of ladies who have had a reocurrance in their other breast and/or opted to have both off. There is no right or wrong it is a personal decision to make. I had a delayed diep as at the time I just wanted the breast taken away and I wanted time to consider my options and do some research on what was best for me - initially I thought I would never go for reconstruction as I had had enought surgery - but once I started feeling better I realised I did need to get my body back and opted for a diep as cosmetically the results are better and they last longer. Why not ring the ‘someonelike me’ support service here at BCC - they will put you in touch with ladies who have had to make similar decisions and you can talk one to one with them and ask as many questions as you like - that should give you a better idea and help make an informed decision when you see your surgeon in the new year. I am four years (nearly five) down the road since my diagnosis and I looking back I am happy with the decisions I made and am very pleased with my new breast and my body is nearly as good as it was before. Don’t feel rushed or pressured into having to made quick decisions on something that are so important. lots of hugs xxx
Hi Toughieone
Here’s the link to the ‘Someone like me’ service saffronseed has kindly mentioned,and please also feel free to call our helpliners to talk things through, they are on 0808 800 6000 weekdays 9-5 and Sat 10-2
breastcancercare.org.uk/breast-cancer-services/someone-talk
Take care
Lucy BCC
Hi Toughieone. Like you my initial reaction was to ask for a double mx and get implants. My surgeon was very honest and said they wouldn’t remove a healthy breast at this point and he would do the single mx and see me six months after radiotherapy to talk about reconstruction if that is what I wanted. My reaction was is he mad, I’m 44 of course I want reconstruction. However I trust him and realised he was looking at the long term and wants to give me the best reconstruction he can whilst I was looking for the quick fix. I’m now 8 weeks post surgery and am so glad I listened to him. I found the mx a breeze and had no pain what so ever. By only having the single I was able to do everything for myself re personal care and just needed help for a couple of weeks with hanging washing out and hoovering. If I’d had a double I would have really struggled mentally as I’m so independent and would have hated being reliant on others. The good thing is I’ve now got time to live with my body and decide the next step knowing I haven’t rushed into making decisions. I really don’t mind being flat on one side and will have an LD reconstruction or the other breast removed depending on the results of my BRCA test. My advice is keep talking to everyone as this helped me sort it out in my own mind and don’t rush into anything. Good luck. X
Thankyou to,you all for your kind words and advice. I’m still trying to decide but it’s good to hear what others have gone through. I’m going to try and call the advice line tomorrow.
Big hugs xxx
Hi Toughieone
Although I’ve been reading the threads for the last 6 months this is the first time I have posted. I am luckier than most as I have had DCIS non-invasive, node negative. This has not stopped me from having had 4 operations while trying to clear the DCIS but conserving my breast. After the first 3 ops which failed to clear the margins my surgeon said that he would advise me to have a mx with my choice of reconstruction if that was what I wanted. You’re right, there are so many options and I was given as much time as I needed to go through these with both surgeon and breast care nurses. I did a lot of my own research and decided that the DIEP was, for me, the only way to go. Why? Implants although probably the quickest and least invasive route will probably need replacing further down the road and may not be so natural feeling and looking. Other types of using own tissue etc usually involve using some muscle and again my preference was not to use any muscle unless absolutely necessary.
My surgeon did not do the DIEP but referred me to a surgeon at another hospital who did. Within a week of my referral I was booked in and had the op on 4th November last. Really quick, no hanging around. I can honestly say that although its only been 3 weeks everything has been brilliant. I 've had no pain as it was handled very well by the pain management team and when I left hospital on the 10th November I was off everything. My new breast is fantastic even though I don’t have a nipple at the moment. It feels just like my other one, warm and soft. It’s still a bit swollen and may change over the weeks but I’ll see how it goes. I do have a very long scar, hip to hip where the flesh was taken from but as no muscle was taken I have not lost any strength. I am now walking about a mile a day and doing the shopping, with my husband. I feel really well. I should add that I am 64, so no spring chicken but I was and have always been really fit all my life which probably makes a difference when it comes to recovery. The operation is a long one due to the complexity of it but you don’t actually know anything about it. As you say everyones experience is different and you have to weigh up the pros and cons for your situation. I just wanted everything done at once to get it over and done with. Might need a bit of tweeking though. Oh, do have a bit of a seroma in the tummy area but it’s being dealt with and not really a problem for me at the moment. I think it’s fairly common.
All in all it’s been a bit of a roller coaster ride and I try to keep positive. My treatment on the NHS has been brilliant, can’t fault it. Good luck with your decision, hope this helps.
Hi .Its tough for you to decide.after 2 failed lumpectomies no clear margins ,I was told mastectomy was the only option.I’d already researched about reconstructions and diep is what I had.these are reasons why implants and ld flap were a no no for me . 1----- diep looks the most natural and feels just like the other breast. 2------- it will age with the other breast ,when I loose weight it will loose weight also ,when I put weight on it will put weight on,it rises and falls exactly same as other one.implant don’t give this effect as the implanted breast will always be slightly higher and doesn’t move.ok it’s long surgery but you don’t know because you are asleep.I have a family and I went back to work after 13 weeks.I could of gone back after 8 but I get full pay while on sick so why not.don’t think about surgery times or recovery times you have to think about the rest of your life and what is best for you and your body not what’s best for your family and quick fixes ,it’s your body.and it’s how you want to look and how you feel afterwards.4------ one of the great things is I have no c- section scars anymore and no stretch marks as they have all gone along with my post baggy baby belly hooorahh .my scar is very low yes it’s hip to hip but bikini knickers cover the scar.,and my stomach is completely flat ,so diep is like a tummy tuck thrown in.I’m just waiting for a nipple reconstruction and then I will look as near as before diagnosis. I wish you luck in which recon you choose. diep was for me the best decision I’ve made .but we are all different .just thought I’d share my story
Thanks ladies. You all sound totally amazing and inspiring. As the days have gone on I’m finding I’m changing my mind all the time!! Maybe I have too much time to,think about it! I just don’t know? Reading what others have written and speaking to ladies who have been through it shows that their are positives and negatives to any procedure. As you say, life is too short to worry about the what ifs and what might happen in the future. I have to live for the here and now and make my decision based on that!, arghhh!, easier said than done. Hehehe
I had right mx and implant under chest muscle on 4th dec 2014. My BMI was too high for diep plus I have had hysterectomy so I did not have to agonise over a decision. The first 2 or 3 weeks it felt very uncomfortable but each day it feels more like part of my body. It feels and looks ok apart from no nipple, which I will have sorted later. I also had reduction done on left breast and in clothes they look very even although the reduction side is currently about 2 cup sizes bigger. Very strange having 2 very pert boobs c/d cup after huge j cups lol. Decision wise I was always going to be led by the plastic surgeon as I think they do know what is best for you as an individual x
Thanks ladies for reassuring I’m not alone with anxieties. Can’t wait to get it over and done with now and looking at the first few weeks home alone recovering, as a big adventure! Will look at pilates programme Roseka thanks for that. I’ve also signed up for a Paddlers for Life scheme on Windermere when I’m fit enough, which my local cancer support group told me about.
Had the op and recon at the weekend and now home after two days wobbling about with two drain bottles in a shoulder bag. Funny that! - don’t carry anything heavier than a cuppa but here are two huge drain bottles that weigh a ton! Plan A was a mx and immediate implant with mesh; what actually happened was a temporary saline expander implant which will be slowly filled over next few months then replaced with anatomical silicone implant and mesh later on. A bit of a shock finding that out just before theatre but given that the all-in-one op might have been fraught with problems - rejection etc, I might have ended up with two ops anyway.
So it wasn’t a case of what am I going to do after all, I just let the team get on with it. From starting this journey determined I was going for the minimum possible, angry, etc I think my head is just getting round the whole issue. I feel lucky that I’ve been involved in the clinical decision making as far as possible but just having to accept compromises and go with the flow and not fight it all the time. A wicked sense of humour has helped but it’s going to be a tough roller coaster ride. Anyone else just out of surgery and feeling that they are at the top of the Big One? Especially in the wee small hours of the morning…
Hope you recover quickly lankylass. Do they think there’s less chance of rejection by doing it in stages? I think that’s the route in going down after chemo.
Pugsey my thoughts are that with implant it leaves you with an alternative option if there are complications. Hope it goes well.
What surgery did you have kentstar? Are you happy with appearance or is that why you feel wobbly still?
riversidedawn kentstar thanks. Yes I think having recon in stages was felt best ‘for me’. I think surgeon also freaked out a bit tbh cos although I’m an ex-smoker, I fell off the wagon and had two cigs, a week before the op cos I’d had to have root canal treatment on a tooth and in a moment of weakness…(only two…but even so, he worried about tissue healing…oh well water under the bridge now and I won’t be making that mistake again). Wonder what would have happened if I hadn’t confessed? Me and my big honest mouth lol… I also think he didn’t want me to be disappointed if it all went pearshaped bless him. Cos I put so much faith in his clinical expertise.
You know, I think we are all ‘commandos can cope’ at heart and I was quite prepared to put up with the one stage process, but so glad it has happened this way. What might have been the right decision a month ago turned out to be totally the wrong decision on the day of the op. Getting used to the whole idea of doing it in stages, gently over time, even though that was the only option I hadn’t researched! Got a lot of catching up to do in the emotional department and like you kentstar, think I will be chugging along at the top of the rollercoaster for quite some time yet. Not even had a good cry yet…
Reassuring to know that others have been in the same boat and getting on with it
I hope everyday continues to improve for both of you. I was diagnosed on 3rd sept had mx and implant on 22nd sept! Unfortunately the implant got infected and after chemo no 2 was removed in December. I’ve got a fold if skin remaining all ready for imant when we’re ready. Chemo now until about 10 April. I’ve got to had radio too but surgeon wants to put expander in before rads than change to oermanenr one after rads. I need a bit if adjustment to good side too as it wasn’t at all symmetrical last time as I’m small and droopy! Watch this space. How long dies it take to fill the expander? I’m not sure oncologist will agree to the delay.
My expander was put in and partially inflated under chest muscle and will be gradually filled starting 3wks time when initial healing up done. Then will be about 2-3 mths a bit at a time to the right size. Then another op for the implant swap. It will be about 3wks before I get results of mx and snb so I assume if more treatment such as rads needed this can be done with expander in. But not final implant cos of ? capsular contraction? Have I got that right? It’s all a steep learning curve isn’t it?
A huge learning curve lankylass. I can’t see onc delaying that amount if time for my rads. Got to see surgeon towards end on March as chemo is coming to the end so we can discuss what we’re going to do. I don’t want Ld flap was I have a week back snd not enough tummy for DIEP so a bit stuck! Got a good book recommended by Macmillan nurse called the breast reconstruction guidebook, very interesting read but doesn’t rate implants very highly, but I still think that’s the only wat forward for me.
Hope your mx results are favourable and you don’t need any further treatment. My onc had already decided on chemo and rads from thx biopsy results. Funny how they’re all so different.
I think they can do rads with expander in. No I didn’t want implant either but like you not enough tummy and LD would compromise my shoulder as it’s my l side and I’m l handed. Sure it will all work out in the end…
Oh beryl sorry you feel low. Did you have immediate recon or have you been through chemo? It’s do hard to know what to do for the best and you feel led by the specialists. I have immediate implant recon in sept but it rejected do I’m now questioning what to do after chemo. Hope you feel better soon. I think implant us much easier to bounce back from than recon from other parts.