New and in need of guidance!

Hi everyone, I’ve read a lot of the threads here and if I’m honest a lot of this still confuses me which doesn’t take much these days!

 

I was diagnosed with high grade DCIS in October following a routine mammogram.  The biopsy showed a 5mm area so I had a WLE just over a week ago.  When the results came in they showed a 2cm area and postive margins so I went from having a simple wee op to needing a second op and radiotherapy.  My consultant wanted to wait for the results of my genetic test before operating a second time.  The results came back later that day as positive for genetic mutation in BRCA2 so he wants to discuss bilateral mastectomy with me o Monday.

 

If I’m honest, although it’s been a bit of a mallet to the head I have kind of been expecting something as my mum was so young when she was diagnosed with breast cancer and died at 38 years old (I’m 41 now).  I don’t know where to start with thinking about mastectomy.  He has suggested immediate reconstruction, the thought of that appeals to me but I don’t know how to find out the advantages and disadvantages, what questions I need to ask him or how they do the reconstruction.  Or even if there are other options apart from mastectomy.  I get the feeling that it is going to be the best option as I’ve had 2 consultants (NHS and Private) and they’ve both immediately said that they’d recommend mastectomy if the genetic test came back positive.

 

I would really appreciate any help advice or pointers in the right direction for an idiot’s guide to the different procedures and what it all means for me.

 

Thank you in advance.  

Hello MrsA

Welcome to the BCC forums. 

I’m sure other users will be along to support you soon.

Whilst waiting for support maybe you would like to call our free helpline on 0808 800 6000 and talk to one of our staff who are there to offer support and practical information, lines are open weekdays 9-5 and Sat 10-2…

Best wishes

June, moderator

Hi Mrs A, I’ve just read your post and felt the need to reply. I’m 46 and was diagnosed back in September with invasive lobular cancer. I found the lump myself but this wasn’t picked up on mammagram or ultrasound ( until I guided the lady). I was offered a lumpectomy but asked for a double mastectomy with immediate reconstruction as I wanted to lower my chances of this coming back as much as possible. I don’t know if I carry the BRCA gene but will hopefully be tested in the future. I asked for a nipple saving mastectomy ( as my lump was in the lower side of my breast and not by the nipple) with implants and strattice. I did have to see the councillor to make sure I definitely wanted the good breast removing but I had this clear in my mind. Surgery was fine and I’m really happy with the results. I have 2 very neat scars under each breast which will fade in time and a pert pair of B cups. I was a B to start off with and didn’t want to go larger, really depends on your original breast size. Your surgeon will go through the different options with you should you decide to have a double mx. I just wanted you to know that mastectomy surgery has changed and come on in leaps and bounds over the years. Many lady’s are happy with a lumpectomy and others opt for mastectomy, it depends on your personal circumstances and feelings.

Take care and good luck with your decision making.

Tracy XXX

Hi MrsA
Here’s a couple of links to the BCC and Breakthrough ‘Family History’ and ‘Risk reducing surgery’ information which may answer some of your queries too:

breastcancercare.org.uk/breast-cancer-information/breast-awareness/am-i-risk/risk-reducing-surgery

breakthrough.org.uk/about-breast-cancer/family-history

Please also feel free to post in the family history threads here on the forums too:

forum.breastcancercare.org.uk/t5/Family-history-and-genetics/bd-p/4427

Take care
Lucy BCC