DIEP reconstruction or going flat

Hi judith0861​ 

I am SO Sorry to see you join the club that no-one every thought they'd be joining 🙁. Great that things are moving along smoothly.   It may take a little time to get back into your exercise routines following surgery ... (other than walking) as your arm movement may be compromised for a little time - plus waiting for the wounds to heal.

Being diagnosed Her2+ ... are you also Progesterone and Oestrogen Positive as well?  If yes, We have a Triple positive private group you might like to join, for chats with others with the same diagnosis.
Group: Triple Positive Breast Cancer (TPBC) | BCNA Online Network

You are right - choosing to stay flat or to have reconstruction is a very personal decision.  Also a very difficult decision, as it does involve extra surgery & recovery time (often some time after the original surgery) - and not everyone is 100% happy with the results.  :(   I've always said I'd stay flat if I'd had a mastectomy - and told the surgeon that, in case he had to 'do more' than he anticipated during my surgery.  Luckily, I didn't need one.

Do you have a Breast Care Nurse that you can chat with?  They'll become your first source of reference for reliable information. And  Stay away from Dr Google!

I'd suggest that you join the Choosing Breast Reconstruction group and put your question there - and also see some pics of some of the procedures.
Group: Choosing breast reconstruction | BCNA Online Network

Likewise, joining the FlatChat private group ... for those who chose to stay flat.
https://onlinenetwork.bcna.org.au/group/flat-chat-no-breast-reconstruction

It is so good that you found us, as you've found the right spot for support & honest info from those who've 'been there, done that'! So hopefully we'll be able to smooth the way for your own story.  Whack up ANY question - remember there are NO dumb questions!!!  Make sure you take a trusted friend or family member with you to your appointments, as a 'backup set of ears', as it is difficult remembering everything that is said.  Also, consider recording your sessions on your phone, so you can go over it again later, for the same reason. 😉

Mine was ILC (Invasive Lobular Cancer) - I was lucky to only have the one lumpectomy, rads & tablets .... and have recently finished with the tabs now!

As you progress thru your appointments/surgeries ... let us know how you are going, by continuing to reply to this post ... it is a good way of 'keeping a diary' of everything you're going thru, in the one spot!!  I look back on my original post too (up til I started the hormone suppression) and am amazed at the wonderful support afforded to me, too xx

This diagnosis can really muck with your brain too - so if you feel sad, angry, distressed - that is absolutely 100% NORMAL!  But you don't have to 'do it' on your own!  .... ask your GP (or your treating team) for a referral to see a counsellor .... or listen to Charlotte Tottman's podcast (link below).  You can also ring our Helpline on 1800 500 258 for a confidential one-on-one chat xx   

Try not to get ‘ahead of yourself’ with the ‘what ifs’ ….. as they may never happen - and going down that rabbit hole (specially if using Dr Google) will REALLY muck with your brain  :(  A lot of info on Google doesn’t relate to your diagnosis or is out of date - so put any questions you have, to your medical team (or here!) xx   Take it one day at a time, one hour, if needed ..... but keep trying to do 'stuff you love' too .... so you have good 'down time' as well!  I treated myself to a holiday on Norfolk Island after all my active treatment ..... as a 'Well Done YOU' for going thru all that stuff - as a reward!!!

Charlotte Tottman  is a BC specialist counsellor who was diagnosed herself, also had a double mastectomy, so knows EXACTLY what we've all been thru, both emotionally and physically!  Her reaction to her own diagnosis was also quite different to what she 'thought' it might be, given that she'd been counseling women's reactions for some years before, so thought she 'new' what to expect!  She is VERY easy to listen to, too xx
http://www.drcharlottetottman.com.au/my-podcast.html. 

Raelene Boyle's video is also well worth watching! 
https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/

There is HEAPS of info in the link below to help you navigate the blog & what to take to hospital with you ... and also some tools to evaluate your own physical and mental recovery thru your ongoing treatment! xx.
https://onlinenetwork.bcna.org.au/discussions/general-discussion/a-big-welcome-to-all-new-online-network-members-/222737

Take care & all the best for your surgery & ongoing treatment xx

Hi judith0861​ 

Welcome to the forum and sorry to hear of your diagnosis.  Arpie has provided some excellent info.

HER2+ breast cancer has some good treatments available.  Not to cause you anxiety, but if they confirm the HER2+ diagnosis, you may be recommended to complete chemo/targeted therapy prior to surgery - called neo-adjuvant chemo.  If so, one of the positives is having a bit more time to make a decision on surgery.

I too was diagnosed at stage 2, but mine was Triple Positive (HER2+, ER+ & PR+).  I completed 6 rounds of TCHP, being 2 chemo drugs and two targeted therapies specifically for HER2+.

Following chemo, I had a bilateral mastectomy direct to implants, as I didn't have enough flesh for DIEP flap.  The implants are small and above my pec muscle.  I too am active (swimming) and didn't want my shoulder movement affected.  I am now nearly two years out from diagnosis and doing all the sports/activities I was previously.

All the best and feel free to ask any questions xx

Hi judith0861​ - Welcome, and thank you for sharing your story. That’s such a big decision to be facing, and it’s great that you’re thinking about what feels best for you, hearing others’ experiences can really help. You’re not alone, and we’re here to support you through it. Please reach out if there's anything we can work through with you, many have found the images and information in our private groups very helpful:

Choosing breast reconstruction | BCNA Online Network

Flat Chat No Reconstruction | BCNA Online Network

Warm wishes,
Christina 🌷

judith0861​ 

I had a single mastectomy 13 years ago. Although a large breasted woman, I wasn't mad keen on reconstruction and as my surgeon preferred to wait 12 months before doing one (he was keen, just wanted time for everything to settle down!), I didn't get any more enthusiastic and have remained flat. I wear a prosthesis. I don't find it at all difficult, just pop it in in the morning and more or less forget it. I would suggest getting a qualified fitter to advise on size and a mastectomy bra, certainly at the start, as I think this can overcome some initial problems. Many women have never been professionally fitted for an ordinary bra! I don't swim much but had no difficulty in buying a suitable swimsuit, with a pocket for the specially designed swim prosthesis. Best wishes for your treatment and recovery.

Thank you so much for sharing your experience with me. I'm so glad to hear you're now 13 years past your surgery and that you're happy with your decision to go flat and have coped well. I'm leaning towards going flat and will definitely make an appointment with a qualified fitter.

Thank you for sharing 🙏

Are you being offered immediate DIEP recon? It can be done later. Do you need other treatments. I wasn't offered immediate, possibly because it was important to get on with Chemo and RT. I had a SMX with axillary clearance. 18 months later I had Recon. It is posted with photos in 'Choosing Breast Reconstruction' and labelled 'Not suitable for DIEP. My Reconstruction' I seriously considered going flat, but I decided that my body shape being a little large, would not look good flat. I am happy with my Recon choice. It certainly was a big decision. All the best with your choice.

Hi there, sorry to hear you have joined this elite club but you’re in the right place to get information.  I had my second breast cancer in 2023 and initially had a lumpectomy.  I had an ILC this time ER+ and a mastectomy was recommended to give me the best chance of avoiding another cancer later on. I was 63 at the time and my first cancer (same breast) when I was 47. I consulted a plastic surgeon and opted for a bilateral mastectomy with DIEP flap reconstruction.  I was told you can only do this once so with my history (and family history) a DMX seemed the way to go. And I have no regrets 2 years later. Yes it was a big op followed by a lengthy recovery then revision surgery 10 months later.  I have slowly returned to my gym work and have focused on regaining my strength working with a PT.  I’m now acutely aware of the effects of another 8+ years on hormone blockers and focusing on mitigating the effects of those on my bone and muscles as well as my general health. It’s been a long road but I couldn’t have gone flat! I am still a 16DD but now I have a perkier pair!! Plus a flat tummy which can still feel quite tight after core work!