Hi everyone,
I was diagnosed with DCIS Level 3, progesterone and oestrogen receptor positive (classification). Had a lumpectomy, they found a very small amount of invasive cancer. The genetic test came back and I have BRCA2 mutation, so I had my sentinel node removed (it was clear) and my ovaries and tubes removed 2.5 weeks ago.
Given the genetic test my doctors and I have decided that I will have a double mastectomy in November and skip radiation. So to my question: anyone have experience with own tissue reconstruction or implants? I have this idea that I want a flap, but my doctor says I might not have enough tissue, so I might have to go with implantsā¦ but I also read I should wait until I meet my plastic surgeon. So I want to be prepared when I meet him at the end of the month: I understand the options from a technical perspective (reading, videos, the science), but would love to hear from ladies in this forum.
I should probably add I am 50, I am fairly fit (long distance runner) so getting back to my fitness level and ānormalā life are important to me. I understand I will be not be in work out mode for months, but I do want to go back to my regular life. Indeed most of this is to reduce my 95% of recurrence to a lot less 
Thank you in advance
Reconstruction wasnāt possible for me so canāt comment but BCN have a very helpful booklet which outlines all the options.
Best wishes whatever you decide to do.
Thank so much Holly, Much much appreciated.
Hi, I just wanted to ask if you considered going flat. Mine is a long story but I ended up flat on one side and very thankful that I have not got all the potential disappointment and complications of reconstruction. You can have delayed reconstruction so you could even try going flat and see how you feel. For me, I thought I would be horrified by it but it has turned out to be quite the opposite!! Oddly it even feels a bit empowering. Good luck with whatever you choose x
Just to add to Laneycassā post, if you want to look at the option of going flat have a look at Flat Friends who have a very helpful booklet on living flat as well as lots of other information. Itās also useful while living flat before delayed reconstruction
Hi
I too had DCIS and was recommended I had a mastectomy (left breast only).
I am relatively fit and flattish tummy and 52 at the time (year and a half ago), so when they gave my options I wanted to go for my own tissue over implants.
I was worried like you that there may not be enough fat, but after seeing my surgeon was told it would be fine.
I first opted for the fat from my bottom, but was told thatās pretty sore after and the DIEP flap surgery is the one they recommend. Which is what I ended up happening.
I was very positive about the whole thing and very determined to get up and out as soon as possible.
I had 4 days in hospital full rest and allowed home after that. I didnāt allow steps up or down to scare me and even though walking like a banana, went down the following morning to surprise all my open water swim buddies - there faces were a picture when I turned up.
Even though saying this, you must remember youāve had major surgery and donāt over do it.
I think a positive mindset really helps, but you may still have your lower days.
Really hope you can have the surgery you prefer and wishing you all the best with your upcoming appointments and operation.
Xxx
Thanks. In all honesty I had notā¦ not really. I have fairly large breasts (32E) and I am pretty small (5ā2, 56 kg) my breasts have not always been my best friends as it were. That said when I found out I realised I would definitely go much much smaller, but have not thought about none at all. I think mostly because I think that would be really shocking to meā¦ I am loosing several kilos as it is 
sorry, I know none of this is funny, but its my only way to cope with what often seems like a never ending story that started with: you have classifications, but donāt worry because you statistically super low risk (that was before we knew about the BRCA). That said I have time to explore everything. Can I ask why you feel this was a great option for you? Totally ok if you donāt feel like explaining and also it can be a really mixed set of feelings that are hard to explain. But asking just in case a few things come to mind aside from the empowering bit. Thanks again, I do very much appreciate the food for thought part
Thanks for the link, will look at it for sure.
Thanks for this. I will see my plastic surgeon on the 28th. I have the feeling you do, and everyone (except plastics because I havenāt met him yet) said its unlikely (DIEP flap). My will be both sides, but still, I really appreciate your experience. How long before your abdomen felt ānormalā and you got your abdominal strength? I ask because I had my ovaries removed a few weeks ago and for a few days I had a very hard time using my abs at all. Two weeks after the surgery I am actually feeling quite ok. I am not running at the moment because a) I promised I wouldnāt until I was given the all clear and b) I am EXHAUSTEDā¦ but I am honestly not sure if that is the surgery (I had my sentinel nodes removed at the same time), the immediate onset of menopause or the fact that I am in the middle of a business trip to africa and have been in 11 hour car rides (which all in all were not too painful), have had terrible sleep and my nutrition is horrible because I am not allowed to eat anything here until I get past all the cancer (I got coli on the trip right before my first surgery and ended up a week extra in hospital feeling like I was going to die)ā¦ so long prelude for I am concerned that my abs will never be as strong again??
I totally agree about the positive thinking. Iāve had pretty great GA dreams. To be honest the worst part was the recovery from the ecoli because that really zapped my energy. I was of course shocked when I was told I had cancer, but life is life and its really a miracle I didnāt get it before given the genetic mutation. I am lucky, I know what I have, I know what to look for and I have an amazing cancer recurrence prevention team ā¦ Anywayā¦ blah blah blahā¦ what about your abs. I am not a good swimmer, but I assume they are pretty important, as an ultra runner they are pretty essential. Thanks in advance.
Hi, you are right that it is mixed feelings that are hard to explain but I have absolutely no doubt that flat is right for me.
I also thought it would be shocking and as I looked at images of people online, I did find them shocking. My decision was as a result of (long story) my surgeon suggesting some very unusual techniques which scared me. So I chose to go flat with the knowledge that I could have reconstruction later. I assumed that I would be horrified when I saw the absence of my boob but when I did it was more of a shrug and, āoh thatās okā. When I chose to go flat I immediately felt that I was in control, there would be no long risky surgery, much less chance of complications or infections, no more correction surgery, no visits to hospital to pump up an implant, no need to replace an implant, nothing obstructing radiation treatment. I had already ruled out DIEP as too risky and painful for my liking. I read that implants donāt behave like normal boobs (cold, numb, sometimes tight and uncomfortable etc) so whatās the point of that I thought. Post surgery, I still feel in control and empowered by my decision. The thought of having a foreign body in there now seems utterly absurd to me. I know that many people are happy with their implants or DIEP but I am strangely grateful for the weird surgeon and long wait for surgery that gave me the time to make the right decision for me.
I felt I was pushed towards implants. The fact that you havenāt really considered going flat highlights the failure (in my view) of the medics to present it as an option. I feel they āsellā reconstruction as enabling you to be ānormalā and I think that is echoed in the campaigns of Flat Friends. And I would add that if you havenāt tried going flat you canāt know whether you are ok with it- personally I think all reconstruction should be delayed for this reason.
I really canāt see any downsides to being flat and I can see so many downsides with the other options. My only disadvantage is being lopsided. I assume that having symmetry would be easier and as you are having a double mastectomy you have that option.
I even find using a prosthetic a bit odd so I only wear it if a particular dress / outfit looks wrong because of the asymmetry. I wouldnāt use prosthetics at all if I were symmetrical. Why pretend I am ānormalā. I am OK as I am!
I really hope this helps. You will choose what is right for you and I wish you all the best with it.
Elaine
Thank Elaine, indeed that makes a lot of sense to me. You are right, the push is for ānormalisingā what ever that meansā¦ I am not sure anymore: I have scars already because Iāve had a lumpectomy and sentinel nodes removed and my lumpectomy scar is pretty nice, but not invisible AT ALL. And I admit it doesnāt bother me, actually. I donāt know, I have always been pretty healthy and pretty health neurotic and here I amā¦ without ovaries or tubes and soon to be without boobs and nothing much is ānormalā about that ā¦ unless all of it is normal Everything is relative. I guess my point is that with reconstruction, with implants, flatā¦ all of it is NOT normal or all of it IS normal.
Question, do you have the same sensation in your chestā¦ one of the things that I think will be very weird is the lack of sensation if I go with reconstruction.
Thanks again. I really appreciate your insight.
Hello again, sensation is ok, it feels like me. Very strange at first because obviously I have never felt those parts of my body before, my boob was in the way. There is (I believe always) nerve damage so there are some bits that are a bit numb and may stay that way. I think that is the same whatever option you go for. After radiotherapy I had a range of unpleasant sensations due to the cell damage but over time it is settling. I also had a lumpectomy and SLNB first but obviously the scar from the lumpectomy is gone. My mastectomy scar is huge but very neat and, after about 9 months, nearly invisible.
Wow you certainly have been through it. But sound so positive too.
I think you really need to go with how your body feels. My mind wanted to speed ahead with my recovery, but body lacked a little behind!!
As soon as I could stand pretty straight and wounds were healing, I was up and out doing things. Silly as I was, even in the garden raking, but that was really stupid and I thought I got a hernia. But thankfully all ok, but made me realise I needed to slow down.
I was determined not to let my operation stop me doing bits but obviously you must listen to your body too.
My tummy still feels numb across the scar and trying to hold in my core feels strange but that may always feel like that - not a problem at all though.
Thinking of you and wishing you all the very best whatever operation you have done.
If you asked me am I happy with my DIEP flap surgery and would I recommend it. 100% I would, just donāt rush your recovery as after all, itās a major operation.
Xxx
Thanks a million. Yeah, I kind of learned the : do as you are told bits after my first surgery. This time around I am taking it easy until officially told I can run again. I feel like I may have made things harder for myself after the last one for going a little two hard on myself. Lets see how my recovery is when I start running again. I have 1 week left before I can see the doctor and she gives me the go ahead. Thanks again!! xx
Thanks for the info. I will be able to skip radiation, so that is a plus, I guess. It was a trade off: double mastectomy or radiation and 90% chance of recurrence, so Iām skipping the radiation and going ahead with the surgery. Nice to hear your scar is so neat. I will certainly discuss this with the doctor as well.
All the best, xxx
Good luck, hope all goes well x
So sorry to hear of your dilemma. I had a single masectomy last Aug and was not able to have my own tissue used in reconstruction due to being quite slim. I had an implant and the recovery was quick. I was back to yoga classes in around 6 weeks, whereas ladies I spoke to who had used their own tissue seemed to have a lot longer healing time, esp when the tissue used was from their stomach. Itās probably not the choice I would have opted for but it was made for me and in all honesty I was amazed at how quick the recovery was. Good luck with whatever you decide x
Thanks Meeting the plastic surgeon tomorrow. Lets see what he saysā¦
Dear Sunny2,
Thanks for the info. Yes that is a little my concern also. On the other hand I am not so keen on repeat surgeries down the line. As you say, none of us are here because we want to (no offence to the great support and company)ā¦ but yet we are. I meet my plastic surgeon tomorrow and we will see what he says. I am looking forward to the discussion mostly because the whole thing has been hanging over me for almost 2 months and I deal better with clear things that I can process.
But from this we too learn. Mostly I am very pleased that your got well so quickly.
Best, Ananda
Hi @sunny2 - Iām currently considering a reconstruction with an implant and I was wondering, is an implant visible under the skin? Does it get visible over time? Iām asking because thatās my main struggle right now.