What type of reconstruction?(after double mastectomy)

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 implants… 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 “normal” 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 :slight_smile:
Thank you in advance

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Reconstruction wasn’t possible for me so can’t comment but BCN have a very helpful booklet which outlines all the options.

Best wishes whatever you decide to do.

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Thank so much Holly, Much much appreciated.

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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

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Just to add to Laneycass’ 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. It’s also useful while living flat before delayed reconstruction

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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 that’s 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 didn’t 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 you’ve had major surgery and don’t 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 not… not really. I have fairly large breasts (32E) and I am pretty small (5’2, 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 me… I am loosing several kilos as it is :stuck_out_tongue: 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 don’t 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 don’t 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 :slight_smile:

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 haven’t 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 “normal” 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 wouldn’t until I was given the all clear and b) I am EXHAUSTED… 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)… so long prelude for I am concerned that my abs will never be as strong again??
I totally agree about the positive thinking. I’ve 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 didn’t 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 … Anyway… blah blah blah… 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, ‘oh that’s ok’. 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 don’t behave like normal boobs (cold, numb, sometimes tight and uncomfortable etc) so what’s 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 haven’t really considered going flat highlights the failure (in my view) of the medics to present it as an option. I feel they “sell” reconstruction as enabling you to be “normal” and I think that is echoed in the campaigns of Flat Friends. And I would add that if you haven’t tried going flat you can’t know whether you are ok with it- personally I think all reconstruction should be delayed for this reason.
I really can’t 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 wouldn’t use prosthetics at all if I were symmetrical. Why pretend I am ‘normal’. 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 “normalising” what ever that means… I am not sure anymore: I have scars already because I’ve had a lumpectomy and sentinel nodes removed and my lumpectomy scar is pretty nice, but not invisible AT ALL. And I admit it doesn’t bother me, actually. I don’t know, I have always been pretty healthy and pretty health neurotic and here I am… without ovaries or tubes and soon to be without boobs and nothing much is “normal” about that … unless all of it is normal :slight_smile: Everything is relative. I guess my point is that with reconstruction, with implants, flat… all of it is NOT normal or all of it IS normal.
Question, do you have the same sensation in your chest… 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.