Forum Discussion

AerialCJ's avatar
AerialCJ
Member
7 years ago

Quality of life

Hello! I was diagnosed just before Xmas. I am 40. I had a lumpectomy and SLN biopsy on my right side on 18/12. Thankfully my lymph nodes are clear. I previously had breast tissue and lymph nodes removed in 2015 (left side - was clear of cancer cells) but developed the most life changing cording, which still gives me grief today. My margins on the right side are not clear and I have large amounts of DCIS. The surgeon has recommended mastectomy. I am wondering if anyone has opted to not engage in the treatment recommendations made by specialists and opted to monitor and wait rather than jumping in with the most aggressive treatment options? I know that probably sounds foolish, but the impact on my quality of life with the cording has been considerable and whilst I know it may not happen this time, it is a huge concern as this is my dominant arm/hand. 
dcis
lumpectomy
margins
surgery
  • tigerbeth's avatar
    tigerbeth
    Member
    7 years ago
    all the best @aerialCJ glad that part is over for you . Hope you keep well x
  • AerialCJ's avatar
    AerialCJ
    Member
    7 years ago
    So I rolled the dice and took the double mastectomy with reconstruction (SNM). I had surgery last Thursday (14/3) and so far so good....hoping it stays that way 🤞🤞
  • iserbrown's avatar
    iserbrown
    Member
    7 years ago
    Just wanted to come on and wish you all the best. I understand your concern with the cording but hopefully the roll of the dice will be in your favour. 
    Take care
  • AerialCJ's avatar
    AerialCJ
    Member
    7 years ago
    I appreciate all your comments ladies. I wish you all the best on your respective journeys. 
    My friends don’t understand that i’m not remotely worried about losing my breasts or having ‘breast cancer’  itself, but I am worried sick about cording and the impact that has on everyday living and the exercise and life I enjoy living.....I’ll be rolling the dice like everyone else and hoping the outcome is good! Xx
  • Wonk's avatar
    Wonk
    Member
    7 years ago
    @Sister statistics are strange things. Last night the lotto jackpot was $100 million dollars. The odds of winning were 67 million to one. We all wanted to be the winner.  
    In the BC lotto, the odds are much higher yet no one wants to be “the one”.
    All the best with what you decide @AerialCJ.  We are all with you xxx
  • Zoffiel's avatar
    Zoffiel
    Member
    7 years ago
    Cording is most unpleasant. I've been affected on and off since 2006 when I had a double mastectomy and implant retreads. A recurrence in 2016 and full axillary clearance stirred it all up again. It's a strange condition that seems poorly understood---general medical concensus is that it is an acute issue, which is interesting given how many people have chronic problems with it.
    Given your history, I'm not at all surprised you are reluctant to risk more injury, but give yourself a bit of time to mull it over and discuss your concerns with your surgeon. Mxx
  • Sister's avatar
    Sister
    Member
    7 years ago
    I understand the worry about cording.  I have had that since surgery and it can be so restrictive and painful.  I think that you need to discuss with your surgeon about why a mastectomy is recommended and the likely outcome if you don't go ahead with that treatment.  While I know that it's a bit like getting a ticket for an express train, the doctors don't usually suggest treatment more aggressive than is required but it does come down to the stats v life.  Unfortunately, no-one can accurately predict who is the one who is going to be on the right side of the statistics lottery.
  • SoldierCrab's avatar
    SoldierCrab
    Member
    7 years ago
    AerialCJ my gut instinct was double with no reconstruction I am happy flat had huge tits... 20EE
    I have no regrets at all .... 
    I am over 6 years since surgery. 
  • AerialCJ's avatar
    AerialCJ
    Member
    7 years ago
    I am wondering if I should do the same (double mastectomy), but am just worried about complications. My BCN is brilliant as is the specialist....So many decisions...🤔 
  • SoldierCrab's avatar
    SoldierCrab
    Member
    7 years ago
    oh AerialCJ that sounds horrible....  
    Have you got a good breast care nurse to chat this through with? 

    I chose a double mastetomy back in 2012 as I wanted to...  

    it might be helpful for you to ring the Help line 

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.