Newly diagnosed - breast reconstruction decisions

Mez_BCNA

Moderator moved @Dutchy1_kim post from 'Activity' feed to 'Newly Diagnosed':

Dutchy1_kim

Hi I am a new member as of today. I am looking for information, shared experiences, support and honest answers. I was diagnosed with DCIS and invasive tubular breast cancer. I have had a lumpectomy with lymph node removal. After further testing, i had 35mm around one tumor of DCIS and 15mm around the other tumor. My oncologist has now booked me in for a double mastectomy with a DIEP flap reconstruction. Would love to hear from someone who has gone through something similar. Thank you! 

arpie

Hi @Dutchy1_kim - so sorry to see you here, joining our 'exclusive' club that no-one ever thought they'd join! xx

We have 2 Private groups that you may like to join - the 'Breast Reconstruction' group and also the 'Flat Chat - NO reconstruction group' - so that you can see both sides of the conversation re mastectomies and/or no reconstruction.  I believe there are pics you can check out on both groups.
https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
and
https://onlinenetwork.bcna.org.au/group/29-flat-chat-no-breast-reconstruction

I hope you've recovered well from your Lumpectomy xx. Check out this post for more info on the forum, and some conversations that you might like to join in with ... we get to show off our gardens, art & craft, furkids & much more - even managing a laugh now & then (very important to keep your sense of humour!)
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

take care & all the best

Frenchbee

@Dutchy1_kim
 
Hi.   Firstly, I am so so sorry to hear about your diagnosis.  It's such a hard and shocking thing to deal with.

I'd be very happy to message or talk to you about mastectomy and Diep Flap reconstruction surgeries - I am five weeks out from having had these procedures.

Personally, I found it very difficult to face the mastectomy surgery and the loss of my breasts.  I went through a lot of mental and emotional anguish about this (my one and only post on this forum so far is in relation to that if you want to read it).  I was also really frightened about the Diep Flap surgery itself.

I am in Melbourne Victoria and I'm 53 - married with two young adult children living at home.  I work fulltime in a demanding role.  I haven't yet returned to work and I have one more week of sick leave remaining - just over 6 weeks off work in total and I'm returning on a staggered hours basis for the first week or two.

I was diagnosed with Grade 3 (high grade) DCIS with comedo necrosis in my left breast in February this year.  Imaging indicated that the size of the DCIS lesion was extensive however, I really struggled with the idea of having a mastectomy -  although my surgeon did indicate that I was borderline to consider any other option

My surgeon undertook a lumpectomy to try and save my breast with 60mm of DCIS excised during that procedure.  Unfortunately I did not have clear margins.  Then we did a nipple shave to see if the nipple and areola were clear of disease.  Again, unfortunately not with another 5mm DCIS excised.  The final mastectomy pathology confirmed another 40mm DCIS in the left (total of 100mm+) together with LCIS found in both breasts.

I have very dense breast tissue and a strong family history of breast cancer - mother diagnosed at 44 years old with mastectomy/radiation and died at 47 years old of metastatic disease.  Sister diagnosed at 42 years old with double mastectomy/chemotherapy and thankfully still currently NED.  This is what lead to the decision to undertake a double mastectomy (also the issue that diep flap surgery can only be undertaken once).

I am very happy to answer any and all questions you might have about my experience of the surgery itself, mental and emotional impacts, recovery progress, current surgical results, what you might like to pack or have on hand at home - just whatever you would like to know really.

Sending you all the very best wishes and thoughts

Julez1958

Hi@Dutchy1-Kim
I had a double mastectomy and DiEP flap reconstruction- my story and photos are in the private group on here “Choosing Breast Reconstruction “
If you can’t join  by yourself ( I needed help) call the helpline Mon to Fri.
I had to have 2 surgeries - mastectomy and then almost a year later the reconstruction as I had to have radiotherapy and you can’t have  DIEP flap  before that .
I was large breasted ( E cup) so going flat seemed a bridge too far but many ladies are quite happy to go flat and their stories are in the other private group  “Flatchat”.
Good luck with your decision - as my breast care surgeon said “ there is no right or wrong decision - only what is right for you.”
Reconstruction may not be medically recommended but if it is medically possible it is a complex decision and having good data ( including personal stories and other data on this website) is important.