Forum Discussion

Rubylulu's avatar
Rubylulu
Member
7 years ago

Newly Diagnosed also have BRCA2 Gene

Hi,

Sorry I'm a newbie, apologies if I'm posting this in the wrong section.  I have just been diagnosed with DCIS.  Had a lumpectomy 1 week ago and will get results tomorrow.  They have said if it's nothing worse will be followed by a course of radiation.  Although - everything appears different for me because I have the faulty gene.  My team of people are ever so gently "pushing" me to have a double masectomy to remove all risk.  I also had my ovaries and tubes removed a month ago - as risk reducing surgery (as also a high risk of Ovarian cancer with BRCA2).  Which has thrown me into early menopause.  I am 45.   Wondering if there are any others on this forum with the BRCA1 or 2 gene that are having a similar experience.
  • Thanks for all your replies.  Got my results from lumpectomy today and my margins were not clear.  So next step is more surgery to hopefully get clear margins or else go straight to a bilateral masectomy (would take off the other breast as well to reduce further risk because of my BRCA1 gene).  They say I am the ideal candidate for skin sparing and nipple saving reconstruction with implant, due to my shape and small size.  I've seen the surgeons photo's of before and after pics using this method and I honestly could hardly tell the difference.  Although my main concern is reducing all my further risk.  If I choose to go for a 2nd lumpectomy where they take a bigger margin, I will most likely be left with different shaped breasts and then radiation would adversley affect the outcome of this type of reconstruction.  Just don't want to make a decision that I will regret.  I meet with the surgeon again in 1 week to decide.  They keep saying my cancer is very early stage and the margins showed pre cancer cells.  If I opt for the mastectomy they will take some nodes at same time and if all clear there should  be no need for radiation or chemo they say.
  • I had a bilateral mastectomy and reconstruction due to invasivse cancer.  I had a very strong family history but don't carry the identified gene on my father's side (multiple deaths from ovarian/breast cancer ). I would  have had my ovaries and tubes out too if I had carried the gene. However I have a sister  (diff Dad ) who died from breast cancer and her daughter had breast cancer. As yet no faulty gene identified but all my sisters have to remain vigilant.  

    I didn't want to spend my life in fear waiting for local recurrence or a new primary growing. It was recommended by my surgeon. My cancer was not detected by mammogram 5 weeks before I found  it due to breast density. It was an aggressive cancer and if it had been located deep in my breast...well we might not have had this talk.

    So whilst I will always miss  my breasts. I've never regretted my decision. Some lumpectomies are very disfiguring and worsened by radio. If it does recur elsewhere in the breast that treatment can't be repeated and reconstruction options then are more limited due to the effects of radiotherapy on the tissue.

    Realise that breast surgeons only recommend this surgery to give you the best odds of never having to deal with breast cancer again. This is more likely due to the gene and asking about how likeky that is, is important. You will not  need radiotherapy, nor will you need chemo unless there is lymph node involvement or it is idc. If planned at time of mastectomy the reconstruction results are extremely favourable and you might even be able to keep your nipples. 

    We have a reconstruction group you can join if you want to see some results of members. Kath x
  • Hi there love. I’ll be honest with you. I had a double was diagnosed aged 43 with triple negative BC. No nodes involved. Scans clear and negative for the gene. I wouldn’t hesitate to get the double with recon if you choose especially since you are so young and you’ve dodged a bullet as you probably don’t need chemo. It will take the stress out of life worrying ebout the fucker coming back for sure. Trust your gut on this one. I know it’s more surgery for you but it’s a small price to pay for a long healthy life. I had a girlfriend who was positive for the gene had the double and the hysterectomy and no regrets from her. Totally up to you love. Whatever you decide you will have plenty of support on here. Margie.  Xx
  • Hi @Rubylulu, and welcome. Have a look on a site called "Pink Hope" regarding risk reducing surgery. If you're not sure talk to a genetic counsellor, if you haven't already,  about the risks of further diagnosis vs preventative surgery, or if there are any other options for you.
    Take care
  • Hi Ruby. I think you've posted in the right section just fine! Can I suggest that you put BRCA in the search bar on the homepage? That will turn up all sorts of info for you. 299 results in fact! Hang in there. K xox