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Hi @Sdenm, I have opted for a mastectomy with skin/nipple sparing and immediate reconstruction.  I too am having this done at the Mater. As it's been nearly 6 months since the DCIS was discovered, I'm having a mammogram and ultra sound done on both breasts this week to be sure all else is ok.  I go in on 14th May. 

Since I last posted I became aware of a type of radiation that's done at Monash in Melbourne.  At the time of lumpectomy they can do a one dose radiation treatment that preserves breast tissue for further radiation or surgery if years down the track it's needed.  I did qualify for this as I had clear margins, but.....here's the very distressing bit.......the original surgeon who did the lumpectomy didn't tell me about it, or a lot of other information for that matter.  I'd have flown to Melbourne in a heartbeat.  Finding this out had me fall into a very dark place for a while.

There are a couple of reasons I've decided on surgery vs radiation.  First, I have a niggling heart issue that may have doctors think twice about surgery later on if it's needed and although I shouldn't be thinking this way, I want as many arrows in my quiver so to speak as insurance..!! 
Do you mind if I ask who your doctor is?   
At your age I expect I'd do exactly as you're doing. 
thank your for your response and all the best..  

An aside.....It's my belief having been through the information gathering process, that all women should have an independent place to be referred to by doctors, that discusses ALL options prior to making decisions.  I certainly didn't get all options on the table from my GP, first surgeon, or radiation oncologist.  I had to google, gain 2nd and sometimes 3rd opinions on everything to get to this point.  I was given very conflicting information, was even told no surgeon would operate on me, didn't know what questions to ask in the beginning and was being ushered down a path at lightning speed until I decided to put the brakes on. This process has cost me a lot of money and taken months - lucky I had time............!

This site is of enormous value and I only wish I had come across it right up front.

Hello @Judithm I was diagnosed with high grade DCIS in November last year from my first ever mammogram at 42 years old. I had a lumpectomy in December then was due to have radiation in January. They didn’t get a clear enough margin so more surgery is needed. Due to family history, my age and having 2 young children I’ve opted to have a double mastectomy with tram flap reconstruction in August. I’m having it done at the Mater in Brisbane. It’s such a confusing and stressful time. I found it very helpful reading posts from this forum. Best of luck with your decision. 

Hi @Judithm I've just sent you an invitation to join the breast reconstruction group. If you have any issues, or didn't receive the notification to join please let us know.

Thank you @primek for your response.  This helps.  I emailed to join the reconstruction group 8 days ago and haven't noticed any email with acceptance as yet. I may apply again in case being new to this site I may not have done it correctly.   

I had invasive breast cancer just inside stage one...high grade. Her2+ and Es+. My mammogram  was all clear 5 weeks prior myself finding a lump. 
I have a family history of breast cancer but no gene linked to myself. I was a 14E breast which were dense.
I chose a bilateral mastectomy with tissue expander reconstruction. My nipple on the effected side was too close to save so I opted not to attempt to save. It was my surgeons suggestion for this surgery.

I do miss my breasts. I am happy with my decision...occasionally I fantasize about a diep reconstruction. ..but it's more about the tummy being removed than the need for better breasts...lol.

I had nipple reconstruction last year and have still to get a tattoo. I feel no rush to do this. Now I have a nipple my breasts look like breasts and I focus much less on them now than before..

If you join the reconstruction group there are photo stories of the various surgical options.

@kmakm thank you for your response.  You've touched on something I've thought much about.  My tumour was very small - I'm lucky.  I have thought many times, what else is in there though not detected yet.  This same breast has had many cyst aspirations, other core biopsies, 2 benign fibroid adenomas now the high grade DCIS removed with clear margins on 11 Jan this year. I've been going to the same breast clinic in Brisbane for the past 18 years, checked every year and at one point was there every week for months with what was described then as having problematic breasts.  Radiation after lumpectomy was what was recommended and would still be the obvious choice. But.............my gut isn't settled! 
A skin and nipple sparing mastectomy with immediate implant reconstruction is still top of the list for my path forward.  
I'd love to hear from other women who've had this procedure.
thank you all who've shared so much with me on my decision journey..xx

I had a tumour deep in my large right breast, no spread. Lumpectomy and radiation was the obvious path. But I had a bad family history, so after chemo (done after genomic testing said it was warranted), I had a double mastectomy and DIEP reconstruction. That discovered more DCIS that had been invisible on the mammograms. Then I tested positive to a gene mutation. So, the decision was made on a little information and a lot of gut intuition. Hindsight developments confirmed my decision. Sad about no breasts, but no regrets. K xox

Hi @Judithm,

Choices, choices, choices.  Aagghh.  

From my prospective I have absolutely no regrets chosing the lumpectomy and radiation. Going this way, plus the cold cap for chemo. allowed me to look pretty normal the whole way through which was helpful no matter how I was feeling on the inside.
 I believe the surgeon would have preferred I had the mastectomy but it wasn't his body and to his credit when I said no he never tried to talk me out of it.  The sleepless nights and tears ar par for the course I am afraid. 

I went public the whole way so all my treatment cost me zero. You should be able to switch to public for the radiation without too much drama if you decide to go that way.

Best of luck with your decision.

xoxoxo

Yes, tigerbeth, it is my decision, not that family/close friends necessarily agree with this.  I've certainly had interference that has been destabilising and slowed my progress down.  Now I'm not saying much to anyone until I'm ready to go with my decision.  I had surgery booked for 26 March, then cancelled and am now plucking up the emotional strength and courage to get there again.

JulieVT11 - good to hear you've come through this physically well.   Surgery is still seeming like the way for me to go, scary as the thought is.  It leaves all other treatment options available.  The breast surgeon I will use does many, is highly regarded, though the procedure does carry some risks. The reconstructed side will be a bit smaller than the other one, so I may need a reduction on that one......
And the muddle head, sleepless nights and tear upon tear.....well, I'm coming to the conclusion this might well always be quietly sitting in the background of my life, erupting at inappropriate times as it currently does. 
My DCIS surgery produced clear margins, the tumour was tiny and I'll be forever grateful to the wonderful people at the Wesley Breast Clinic where it was detected.  My annual check was 14 Dec last year, I was told it was cancer on New Years Eve at 5.10pm while driving to the other side of town to look after my 2 little grandchildren for the night........

@Judithm sorry you are here , I cant help with your decision ,just wanted to say you can do your radiation as a public patient & it doesn't cost you anything .Hope this is an option for you.

Good luck x