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I am new to this site and have read various threads but wanted to find out more about people’s personal experiences of the different breast reconstruction types.
I am 38 years old and have recently been diagnosed with high grade hormone receptive DCIS in the right breast. I have a 9 month old son which adds complexity in relation to recovery. I am a 38B/C in size but not particularly ‘full’ and a little droopy due to breast feeding my son until a few weeks ago.
Due to the extent of the DCIS the surgeon has said mastectomy is the only option. She believes this can be a skin sparing but is unsure if she can save the nipple. I am guessing that she probably won’t be able to.
I am going through what a lot of people on here are in terms for trying to decide what type of reconstruction to have (assuming all become available relatively soon in this COVID world)
I had convinced myself that implant was the way forward but I was very much focussing on the shorter term recovery because of my young son and not considering the longer term issues I.e. implant replacement in due course which due to my age means I am likely to need at least 1 or 2 further operations later in life due to how long implants last Irrespective of any complications. I have also not finished my family and therefore concerned about DIEP healing and pregnancy, which given my age I wouldn’t be able to wait that long to have another child.
So I am interested to hear about people’s experiences, good and bad, of prepectoral implant with biological mesh (on top of chest muscle rather than under) versus DIEP (using tummy tissue).
My main worries are:
COMPLICATIONS of each procedure and people’s experiences of these e.g. skin necrosis, fat necrosis generally. In the case of implants capsule contracture, loss of implant and rippling/kinking and infection. In the case of DIEP loss of flap, extent of numbness in tummy area. Ongoing long term pain generally for both procedures.
AESTHETICS of each procedure e.g. coolness, weight, sizing and shape of implant and in the case of DIEP how the tummy scar looks and feels and size/shape/feel of the breast. In both cases how does the symmetry compare and have you had to have further surgery to that or other breast for symmetry.
RECOVERY from each procedure. What in reality could you do after 1 week, 2 weeks, 3 weeks etc. How long is it before people returned to work?
Anyone who has experience of going though this with young children would also be of interest.
Sorry it’s rather a long post, I hope that some of you will be able to share your experiences.
Sorry to meet you on this particular journey. Afraid I can’t give any answers, but I’m interested in this discussion, as I’m in a similar position. I’m 45 with two young children and also making the decision between an implant or the DIEP procedure.
I’m erring towards a DIEP, mainly for emotional reasons. Think I’d prefer a breast made of my own tissue. But concerned at how big the operation is and the recovery. Especially with young children. Aesthetics wise, photos of completed DIEPs seem to vary so much, with the position of the stomach scar being different. I guess that depends on your own body and the surgeon does their best to position the scar below the bikini line, but can’t guarantee it.
Are you currently on chemo and when is your operation due? I’m on FEC-T at the moment and mastectomy (and reconstruction if they’re allowed by then) around October.
Hope someone who has experienced a DIEP can help more, but thought I’d just say hello and you’re not alone!
Thanks for your reply and sorry to hear you are also having to go through the same dilemma.
Today I am erring towards the DIEP too but my mind changes depending on the hour! It really is the extent of the surgery that makes me question it, the scaring and the risk of skin necrosis. But on the plus side I think it will get better results both in symmetry and feel and if there are no complications it should last a lifetime. I have spoken to volunteers, one of whom has had implant and one of whom has had DIEP and both are content with the results.
I have DCIS and as far as they can tell at the moment it is not invasive so I don’t need to have Chemo and also shouldn’t have to have Radio but obviously none of this is certain until they have tested the tissue after the operation. I am still waiting for the BRCA gene test result too but hopefully should know this before the operation.
I don’t have any dates at the moment it is really being driven by which reconstruction surgery I want. I haven’t yet had a meeting with the plastic surgeon for the DIEP only a conversation with the breast surgeon about the implant option. If I was having the implant it could be in a couple of weeks, if I opt for the DIEP probably a bit longer plus it is unclear if they have started this up again yet following COVD (this COVID just makes the whole thing more frustrating in terms of timescale of op, worrying about infection and childcare)
I hope you are managing with the Chemo and managing to keep positive.
hopefully this will be a useful thread to help us understand more about people’s experiences.
I'm not sure i can be of much help as i had a latissimus dorsi flap reconstruction surgery, where they used the muscle from my back to reconstruct my breast. I was 48 at the time so no young kids but my granddaughter was born 3 months after my surgery and i have always managed ok carrying her, playing with her. But this was only a few days a week and not full time. I would say it took around 3 weeks before i could do any lifting etc but please remember that everyone is different.
Reason i decided on this kind of reconstruction was because they do not disconnect the muscle from your body they just make a tunnel under your skin and push it round.
I didn't want a implant as the nurse explained that if i lost or gained weight the implant would stay the same size so could end up with 2 different sized boobs. n
I lost my nipple too, i am happy to send you a photo through private message if you want to see what it looks like, to be honest i was pleasantly surprised.
I am now waiting on cosmetic reconstruction to even out my boobs, i have one lovely firm one (the reconstructed one) and a droopy one. So my consultant is going to even them out and make me a new nipple.
I am 50 in October and hoping for a boob job for my birthday lol that is one sentence i never thought i'd say xx
It's gonna make us who we are, it's written in the scars "The Script"
I might have left this too late, and you may have already made your decision, but I can say that I had a diep reconstruction. I am really happy with my results. A friend had implants at roughly the same time and our recovery period was not that different. 3 weeks longer? It is so nice to have your own flesh on you, I think. It helped me come to terms with things mentally.
I am 8 months down the line from my operation, and all my scars have faded to white/light pink lines.
I am happy to answer any specific questions, that you might have.
Hey Jen38! Found your thread here while looking for answers to all the same questions you've listed.
I'm in a similar situation to you - 34, recently diagnosed with high grade DCIS, and changing my mind every hour on which reconstruction I am leaning towards. Every time I think I settle on one, someone tells me something about the other and I am confused all over again! Can't schedule surgery until I decide. I don't have children, so that isn't currently a factor; however, although I don't plan on having kids, I still would like to have the choice, so I worry the DIEP would impact that, should I wish to have a baby in the next few years.
Have you managed to make a decision yet? If so, what sold you one way or the other? I am waiting to speak with the plastic surgeon team who would be doing the DIEP should I choose to go down that route, so hopefully that'll clear it up a bit.. maybe wishful thinking?! They aren't actually sure yet if I even qualify for it, so we'll see. If I'm honest, as I'm quite flat chested anyway, there's a big part of me that just wants to leave it as is..
Sukki17 that's great to hear you are happy with your DIEP recon. How was your recovery / where you in hospital for long? How do you feel now, some months on? Has it impacted your ability to work with your core at all? I am a yoga teacher, and one of my hesitations is that I won't be able to move in the same way if muscle or nerves are damaged. Apologies for all the questions - it's so much different asking someone who has actually been through it than asking the nurse!
Hi Sunshine143 thanks for your message. Sorry you find yourself with the same dilemma. I had originally convinced myself that implant was the way forward. I read the literature they gave me on both and got blinded by the extent of the surgery for the DIEP and couldn’t see past that particularly as my main concern was just getting recovered as quickly as possible for my son (and me). I got measured up by the surgeon for the implant and they were ready to book me in once they had availability, which was to follow a lady who had been delayed.
After that discussion with the consultant the breast nurse then spoke to me further separately and asked was I sure that I didn’t want to at least meet with the plastic surgeons to discuss the DIEP, noting that the recovery wasn’t significantly different and that there were long term benefits (but obviously short term complication risks). She told me to contact her if I wanted to explore it. I phoned her the next day and said she’s right I should look at all options equally to ensure I was making an informed decision and asked her to line it up.
However in doing this I had completely unravelled where my head was at having been so certain implant was for me. I was a bit of a mess and I couldn’t see how I was ever going to make the decision. I got in touch with breast cancer now charity who have a volunteer schemed called someone like me (really recommend you explore this if you haven’t already) I had already spoken to someone who had an implant and was happy with the results but asked to be put in touch with another volunteer who had DIEP. I had a good chat with her also and she was also very happy with the results.
She pointed me in the direction of some Facebook support groups - DIEP reconstruction uk and DIEP flap support group (US version) and I read so many things on there. I started to consider the long term implications of implants much more and also wasn’t convinced my breast shape - quite small and a bit droopy after breastfeeding was suited to implants as well as the fact that that are cold and will need replacing more than once in my lifetime. One of my biggest obstacles for the DIEP was the possible complications and reading about other people’s experiences really helped, in particular those who had complications along the way still not regretting going down that route. Also interesting to hear about people who couldn’t get on with implants and then went for DIEP later down the line.
As you can probably tell from my response I have decided to go for the DIEP, as I said I really couldn’t see a couple of weeks ago how I would get to a point where I felt comfortable with my decision but I do (although bricking it obviously). There are risks and some of them are major risks but they are generally short term, if you heal effectively then there shouldn’t be any long term ones. I had originally been focusing on my short term situation (young son, due to go back to work after maternity leave etc) rather than thinking long term about more ops in future, long term risks associated with implants.
oh and on the pregnancy side they said it shouldn’t be an issue, it might be a bit tighter but people have got pregnant. You should make sure you ask your surgeon about this though and any other concerns. There are people on the Facebook support groups mentioned above who talk about having a baby after DIEP too.
I hope that helps a little, take as much time as you need, ask all the questions even if they might seem silly and read everything good and bad until you feel satisfied.
My operation is booked for the 19th June
Best of luck
Great to hear, thanks Sukki17. I have made the plunge and decided to go DIEP. Operation is on the 19th June, I just hope all goes as well as can be expected, it’s pretty daunting but I’m pretty sure it’s the right decision.
Hope your recovery stays on track
Sounds like you’ve gone through the mill making the decision. So pleased you’ve come to a conclusion and I wish you all the best on the 19th. It’s really hard, as every woman seems to have their individual response, physically and emotionally. I’m on that FB DIEP page too and have found it SO helpful. I’ll be thinking of you on the 19th. Can I ask you what hospital you’re going to? I have an appointment at the Royal Free on June 16th to talk to a DIEP surgeon.
Sending strength to you!
I am going to the Royal Marsden, my local hospital is actually Kingston but they don’t do the procedure there and instead outsource it to the Marsden.
Thanks for your thoughts and I hope your appointment goes well, ask everything and anything even if you feel stupid! I went with a list of questions, I think they were a bit daunted when I got my notebook out at the end of the appointment!!
Jen38 no way! I am also at Kingston Hospital, and have my consultation appointment with the plastic surgeon at Royal Marsden next week! What are the odds?! No pressure at all, but if you would like to connect off of here, happy to send you a message with my private contact info.
Either way, thank you so much for your comprehensive post on DIEP. I've joined both FB groups now, and will be contacting BCN about Someone Like Me. From everything I know so far, the positives of DIEP outweigh those of implants. I am really looking forward to meeting the surgeon next week and getting more answers (there is still the possibility I won't be accepted for it, as I'm quite small and they couldn't commit just from my pictures).
I think at the moment my biggest hang up is that if the healthy breast should one day develop cancer as well, then what? I guess that's a question for my appointment!
Thinking of you for your surgery - from everything I know and have experienced with KH and RM so far, you are in excellent hands (and we likely have the same 'hands' operating on us)! Also thinking of you Ms Burgundy and hoping your appointment goes well next week!
PS - You might both already know about this charity, but I was just put onto Trekstock, who are UK based and work with cancer patients on the younger side. They're fab, have so much support, and even give you a free Headspace subscription for a year if you give them your details. Definitely worth checking out if you haven't already.
Sunshine143 Small world!!! I have sent you a friend request but don’t really know how private messaging works on here?? Would be great to connect with you.
Oh and while I’m here on your comment about worrying about the other breast in the future, I had the same concern and kept asking whether I should do them both now even though my gene test came back negative (although I don’t think the nhs will agree to taking both unless you had the gene, they don’t like to mess with healthy breasts). They can use a different part of you, typically inner thigh but can also use back or buttock I think aswell, all slightly different procedures.
In fact after my CT scan to check blood vessels in the tummy they said I had one good blood vessel and one not so good so I don’t think they could have got two out of my tummy even if I wanted both done.
Jen38 I've just sent you a message with my details!
I imagine you’ll not be looking at this today, but just wanted to know I’ve thought of you today and hope that the surgery went smoothly. When you feel up to it, I’d love to know how you’re getting on. I know even being away from your child will be difficult, let alone everything else. Sending you happy and healing vibes
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