DCIS, DMX reconstruction new diagnosis

Sorry to see you joining us here Adelaide2025​ .... I am sure we'll be able to help with most of your questions ..... I would suggest that you join the Breast Reconstruction group as they've 'been there, done that' and will be able to give you first hand info. (See link below:)
Group: Choosing breast reconstruction | BCNA Online Network

Cook up as many of your favourite recipes prior to your surgery - and freeze them.  Then you know you have good food ready to go, when you need it.  

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   Tho most will be having a break over Xmas from the end of next week til early Jan .... 

Try not to get ‘ahead of yourself’ with the ‘what ifs’ - just deal with stuff on a 'day to day' basis ….. as 'imagined stuff' 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Dr Google) will REALLY muck with your brain  :(  A lot of info on Google also doesn’t relate to your diagnosis or is out of date - so put any questions you have, to your medical team (or here!)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!!!

As mentioned above, 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 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

TIPs I can give from my experience - get good support bras and get at least 2 or 3 so you can wash and alternate as you will get sweaty wearing them 24/7. Food and diet wise, as you will be sedentary in recovery I did loads of batch cooking of good healthy meals so could just get one out the freezer when hungry rather than scavenging in my fridge and cupboards which had less healthy stuff in them! I got badly constipated and I still am so get Senna laxatives, prune juice and eat plenty of fibre. It appears to just be the way it is and to accept it and prepare which I didnt do and wish I had. I had prebiotics too post surgery and supplements for gut health. Also got a pregnancy pillow from painaustralia.com.au which was a godsend for sleep as if you are a side sleeper it's very painful and uncomfortable. I called my pillow Chris Hemsworth and ended up trying to do turn it into a joke to laugh through it all! 

If you shave your armpits get some of the hair removal cream as if you lose any temporary feeling under your armpit the doctors say not to shave there as its numb and you may cut yourself.

Final tip is I got a shower head you can attach to a tap so I could wash my hair when I wasnt able to have a full shower. Most dressings now seem to be 100% waterproof but had a few moments when I couldnt shower for 2 - 3 days so this was very useful. You can get them from Kmart and Big W very cheaply.

Hope any of these can help you as all the above were a learning curve for me.

Drains were daunting to me too and from what I gather they vary a fair bit between different people and types of surgeries as to where they're placed and how many are used.

I had lymph nodes removed two weeks ago and had two drains on the right side. My breast care nurse gave me a carry bag so I kept the bulky collection parts of the drains in the bag that I carried on the opposite shoulder. That might not be a suitable solution depending on type of surgery but they will have solutions for you.

I was wary as I pottered about to keep the tubes from getting caught on things. People thought I was weird for fussing - they reassured me that the tubes were stitched to me! Eek. I hadn't expected that at all. 

When I got home, community nurses visited me. They changed the collection bags on the drains a few times and showed me I could use a permanent marker to mark off how much fluid had collected in a day. One drain was removed after 6 days, the other was removed one day later.

I was a bit cranky and sleep deprived while the drains were in because I don't think I slept solidly worrying over them. I was relieved once they came out, it felt freeing.

6 days now since the second came out and I still occasionally pause before I get up from a chair thinking I need to check where the tubes are :)

My short version: I just had to carry the drains around. The hospital provided information and made supports available to manage the drains once I went home.

Hi Adelaide2025

I was diagnosed with high grade DCIS November last year. I had DMX and immediate implant recon.  I had two drains - they weren't painful but just annoying with a bag for each of them.  I was in hospital for 9 days and had my drains in for 15 days. I found the drains incredibly annoying. Each drain had a bag and I pretty much kept them in the bags to save hassle. I was given quite a few spare drain bags to take home and at the end of each day I would record the input, throw the bag out and attach a new one.  I was anxious about having the drains removed but it wasn't as bad as I was anticipating. They had me take a deep breath and then slowly let it out - as I was breathing out they carefully pulled it out. It was uncomfortable but not painful.  I was advised not to panic if I accidentally pulled the drains out so with that in mind I wasn't anxious about it at all. 

I recommend a soft cushion to protect your breasts against the seat belt for the drive home; I would imagine you would need one for your tummy too. My bc nurse recommended a spew bag for the trip home - I was thankful she gave me one becuase it was put to good use. 

I lived in button up tops. I was advised to buy 2 surgical bras - one a higher compression than the other. From memory I had to wear them for a few months.  I lived in yoga pants as they were easy to pull on and off. 

I had tote that I kept beside me on the hospital bed with lip balm, hand cream, my phone, a pen and notebook (I wrote down questions when I thought of them because I knew I'd forget to ask when the surgeon came on his rounds). 

All the best for your surgery and recovery; it's a lot to deal with that's for sure.