I am 41 and was diagnosed as a BRAC 1 carrier about 10 years ago, following the death of my mum to breast cancer at the age of 46 :o(
I have been having regular mammograms and MRI scans for the past 10 years which brings along its own anxieties. Early this year I had a scare with the results of one of my scans but thankfully turned out to be a benign nodule. That was the ultimate “scare” I needed to embark on the preventive surgery route.
About 8 weeks ago, I had my ovaries and fallopian tubes removed and am now on HRT. Am feeling very teary, short tempered and very tired. i’m guessing this is fairly normal ??
My breast surgeon has advised that the first part of my mastectomy will entail the insertion of breast expanders/implants for 4-6 months then will have my breast removed !! Has anyone else gone through this procedure ?? Am finding it all very daunting and a lonely journey to be honest, although I have many friends, I feel like they can’t really understand.
If anyone out there is going through similar journey, would love to hear your story. I was hoping to find a support group in London for BRCA carriers but can’t seem to find anything …
Welcome to the forums. This must be a very difficult time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Sorry you are delaing with this new challenge. My situation a bit different but similar too, so thought I would just reply to you so you know you are not alone!
I have a brca1 mutation too and was 40 when I was irst diagnosed with breast cancer in 2009. I had bilateral mastecomies in 2012 (I had a lumpectomy for the treatment for my first breast cancer). I have also had my ovaries and fallopian tubes removed. I did not have a smooth journey but I have been where you are now and facing the propsect of the unknown, the loss of your body as it is now etc. I dont want to underplay what a big deal this is and I am so sorry you lost your mum at such a young age. But, you have a huge advantage in that you have not had breast cancer and you can expect to recover well and really good cosmetic results. I did not know about my family history and so it was a shock to find that I had such a strong history. I also discovered a half-sister and she is just going back to work after having bilateral mastecomies.
I live in London and don’t know of any local support groups. But I have got to know a few women on the forums and more than happy to be in touch. I also used the Helpline and they can put you in touch with someone who has had similar dilemmas. I think it is really important to feel supported and not to feel isolated.
If you don’t feel happy with the procedure your surgeon is suggesting do ask for a second opinion.
Expanded are often required after radiotherapy as the skin isn’t quite so stretchy or following a mastectomy where there is a delay in having a reconstruction. But they can also do a one step procedure which is suitable for women who maybe have smaller breasts or want smaller breasts. But there are a whole range of options and bcc have very good booklets on risk reducing breast surgery and also on reconstructive breast surgery.
Not every option is suitable for every lady but also not every surgeon can do every procedure do they sometimes only offer the ones they can do and not necessarily the one that is best or the one that you want. Don’t feel rushed into something your bit happy with.
Also Brca umbrella website is great support for women contemplating risk deducing surgery as many members have been through it and have pics to show you and share their experience. Where most ladies on here have had cancer so although we understand your situation it is a wee but different having healthy breasts removed. But some folk like rattles have been through that too.
I am nearly 40 and am also BRCA1. I lost my mum and my nan to ovarian cancer both aged 50.
I had my ovaries and tubes removed 8 weeks ago and have today met with my breast surgeon to discuss my double mastectomy with implant reconstruction. I felt a bit teary and low in the first few weeks but am now really struggling with hot flashes and night sweats!
I too have family and friends who are a massive support but I feel very lonely too and dont feel like any of them can really understand how I feel. Today I feel like I need a good cry but it just wont come out, overwhelmed!!
Ive been told i can either go direct to a permenant implant or an expander implant which has a port which sits in your armpit which they fill every few weeks until the size you want is reached and then they remove the port.
Its really nice to share with someone who does know what I’m going through.
Hi Skegvegas - I am awaiting my genetic results at mo - am in early 40’s and have triple negative invasive ductal breast cancer. Will be having a doule masectomy once finish neo-adjuvant chemo - there are lots of people on here happy to support and talk Am wondering if you may be local to me due to your username? I am near Skegness - if you needed someone to meet up with? xxx
Am wondering if you may be local to me due to your username? I am near Skegness - if you needed someone to meet up with? xxx