DCIS and Reconstruction

RubyRumble

Hello to all you lovely ladies who have taken time to put your experience and knowledge online.

To introduce myself I'm a single mum (52) with a teenage daughter who is almost 18.

A few weeks ago I had my 3rd routine mammogram (2 years apart) and was referred to RPH Breast clinic for further tests.....calcifications were found.

In the last two weeks I've had 2 biopsy and have participated in the "the CESM Study" Contrast enhanced spectral mammography which is a useful role in the pre-operative assessment with DCIS. 

I was told that I had Grade 3 DCIS is two areas spanning 7.5cm....after reading some of the information online, I thought this could not be right!!! Perhaps the doctor wasn't reading my radiology report right!!

As my appointment with the breast surgeon was only a few days away (yesterday) I decided to wait until I saw the Breast Surgeon.

The night before meeting the Surgeon I was quieting hoping that it was only small and the 7.5cm was from my nipple to the effected area. I even had my sewing box tape measuring tape out measuring the nipple to the biopsy scar and measuring between the two biopsy sites!!

To cut to the chase my Breast Surgeon confirmed that it was an area of around 7cm and having a lumpectomy would not be an option as I would lose 1/3 of my breast.

She looked me sternly in the eyes and said that mastectomy/reconstruction would be the best option and I she would also like to take my nipple as this could cause issues later....I guess with a possible recurrence.

As I'm a public patient I am now waiting for an appointment with the plastic surgeon, anaesthetic clinical.

I want to thank again those ladies who have showed their journey if it wasn't for you I would have no idea on what direction to take when it comes to reconstruction.

There have been a few tears, feeling scared and why me, but feel young and strong to tackle this beast.

If any of you ladies have anything to share I am all ears.x

Sent from my iPad

primek

Hi @RubyRumble. What a shock. I had my mastectomy and reconstruction done through public abd I chose implant reconstruction which was dobe by my breasr surgeon. If you join the breast reconstruction group you will be able to view pictures of the diff reconstruction being done. Choices are often based on treatment, and available tissue. Best of luck with your appointments. Kath x

RubyRumble

Thank you @primek I have joined the reconstruction group, they are a amazing group of ladies

melclarity

@rubyrumble I'm glad you've joined the reconstruction group! Its a whirlwind at the start, so many things going on, its difficult to catch your breath. I had DCIS in 2011 though small so a lumpectomy was fine but had to do radiation and tamoxifen for 4yrs. Unfortunately I had a recurrence in the same spot in 2015 Grade 3 stage 2 ER+ 2.5cm so another lumpectomy, as I'm big breasted so Surgeon said it was fine. 4.5 months of Chemo and then Arimidex. Feb this year 14months after treatment as suggested due to recurrence I had a single Mastectomy/diep flap reconstruction and lost my nipple. It was a very hard decision, but I didnt want to risk a further recurrence, so I'm super happy with the result, more than I thought I ever could be, its  not easy any of it...but you will get there! Hugs Melinda xo

RubyRumble

Thank you @melclarity I have read your posts in the reconstruction group and you are a inspiration. The hardest thing I have found is telling friends & family....

melclarity

@rubyrumble It is tough, and I found family and friends hard but more because I was caught up in how it affects them, it would make me emotional. What I learnt though, was as wonderful as they are, unless they are going through it, they just don't understand the complexity of it all, so the Forum has been the go to place where everyone gets it. I only tell family and friends the basics. I lost alot of friends as everyone does through the process, because they don't know how to deal with it, if they only knew they just had to be there and love you...xx Melinda

nikkid

Hi @RubyRumble - welcome to here and to the reconstruction group - but sorry you have to join us. Your diagnosis sounds very very similar to mine in that I (for my birthday last year) was diagnosed through initially seeing those constellations of microcalcifications in my left breast on a mammogram with early multifocal DCIS and a small area of invasive carcinoma. Because of its multifocality, I was advised I would need a mastectomy (even before the biopsy results came in). No chemo, no radio. 

So a couple of months later, I had my left vertical skin sparing mastectomy (incl removal of nipple) and insertion of aeroform tissue expander (one of the expanders you use a remote to inflate the expander rather than saline injections). I called my expander Brenda...but we never got along - she was hard, made it difficult to sleep and for quite an amount of time I was uncomfortable because she was inserted under the pectoral muscle.

Skip forward 14 months and I'm 10 weeks post a DIEP Reconstruction and loving my breast again - soft, warm and me. 

It's been a 'journey' (hate that word, but it has been and when I was initially diagnosed I really had no idea where I would be...looking back now, I have learned so much about myself and am in a good place.

Good luck with your next steps

Nikki x

mum2jj

Hi @RubyRumble. I am so sorry you are going through what you are. It's a bitch, no doubt about it. However I'm glad you have checked out the choosing breast reconstruction site. Did you find all the photos in the photo story announcement at the top?  There are also resourses in that announcement, one being a sheet on questions to ask your plastic surgeon. That might be handy to take to your appointment. I wish you all the best. 
Paula xxx

RubyRumble

Thanks @mum2jj I will look at the question sheet for the plastic surgeon. I am now going give the DCIS no more energy until I go to the plastic surgeon & have the decision of what type of reconstruction. I am a D cup and do have a bit of a belly so DEIP might be the way to go. It will always be in the back of my mind, but I won't give it the fuel to consum me. 

At the moment I'm going enjoying this lovely Perth weather, walk my little dachshund and be a tolerant mother to a teenage daughter!

Thank you for all the comments above, believe me your experiences and support is most valuable to me. I'm sure I will be asking some random questions very soon. Xx

mum2jj

@RubyRumble yiu are on the right track. Get out and enjoy the weather. I love the teenage daughter comment.... Can so relate, mine just turned 18. 
Take care and enjoy the sunshine. 
Paula xxx