Forum Discussion

nicholsmi's avatar
nicholsmi
Member
5 months ago

Surgery decisions

Hi everyone,

So many decisions. I am having ALL the treatment started with 8 weeks of 4 F/N treatment of AC medication. By the end i was cooked.  Now at the half way mark of my intended 12 weeks PAC treatment i don't think ill make thr full course as the side effects ramp up.  Then Radiotherapy of up to 5 weeks of targeted therapy.  They weren't lying when they said prepare for a marathon.  I have hormone related lubenal BC to my left ONLY. Based in Melbourne.

Post radiotherapy i have to make a decision about surgery.  A mastectomy is required as the chest wall has shown intrusion  there so I have been advised the surgery will mean they will take half or all the chest wall. And they also want to remove the lymph nodes.

The surgeon has shown me pictures and he wasn't lying when he said it can be quite disfiguring.  I thought I was certain I wouldn't care about being flat but the disfiguring images have made me reassess.

I will not have the opt to do an implants. The choices are as follows.

1.Left removal stay flat or left removal diep recon. Dispose other half of diep flap.

2.Double mastectomy removal remain flat or diep recon using all flap.

Im so overwhelmed and worried that if i choose flat especially on left that i might regret not doing recon.

Recon and mastectomy and recovery time and double wound sites of areas that didn't need to be cut also flip me each day I think im going this way then I flip and go another way each day is different mostly im unsure whether I should continue cutting into parts of my body that have no issue.

What im hoping to gain from the group are lived experiences as to what made you come to the decision you did.  Any experience that might have had similar options presented to you.

What was recovery like? What did you prepare for post surgery? What tips could you recommend for pre and post surgery rest and care.

I fly at least once a month for my work and am told I will need compression stocking on my arms before during and post flights.  This BC is like a gift that keeps giving the worse gifts.  Then to find out in review that even the Hormone blocking meds come with its own side effects some people reporting its worst than treatment!

Anyway sorry for the long post but will welcome anyone's share of experience. Thank you and i wish you courage and bravery if you are straddling this journey too!

breast-reconstruction
diep
surgery

2 Replies

  • arpie's avatar
    arpie
    Member
    5 months ago

    As cranky_granny​ has suggested, joining the Breast Reconstruction AND Flat Chat groups, may help you in deciding the way to go .... put up any question you have & those who've 'had it done' will be able to help you out.  I had a lumpectomy, so didn't have to make the big decisions that you are looking at. xx

    Ask the surgeon about an aesthetically pleasing outcome (hopefully without major disfigurement) - you may even like to seek out a 2nd opinion from another surgeon?   With full mastectomies - not ALL have super ugly scars - but the surgery DOES take time to heal & will only look 'better' over time. xx.
    My own surgeon took great pride in the visual outcome.  I am guessing your surgeon IS a specialist Breast Cancer surgeon (not a general surgeon?)  You can do a 'Dr Review' search on them, if you like?

    Whack up ANY question here - remember there are NO dumb questions!!! This diagnosis can really muck with your brain too - so if you feel sad, angry, distressed at any time .... ask your GP (or your treating team) for a referral to see a counsellor .... or as mentioned above, give the team a call here on the Helpline on 1800 500 258 (Mon-Fri 9-5) for a confidential chat.

    I hope you do have access to a breast care nurse ... you can check to see who is in your area, here:
    https://www.mcgrathfoundation.com.au/get-support/find-a-nurse

    You could also listen to Charlotte Tottman's podcast (link below).  She is a BC specialist counsellor who was diagnosed herself, and had a double mastectomy, so knows EXACTLY what we've all been thru, both emotionally and physically!  Her own reaction to her diagnosis was also quite different to what she 'thought' it might be, given that she'd been counseling women's reactions for some years before, so thought she 'new' what to expect!  She is VERY easy to listen to, too xx
    http://www.drcharlottetottman.com.au/my-podcast.html. 

    Raelene Boyle's video is also well worth watching - what a star! 
    https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/

    There is also HEAPS of info in the link below to help you navigate the blog and also some tools to evaluate your own physical and mental recovery thru your ongoing treatment - and some 'off topic' threads that you may like to check out too! xx.
    https://onlinenetwork.bcna.org.au/discussions/general-discussion/a-big-welcome-to-all-new-online-network-members-/222737

    Take care & all the best for your ongoing appointments & treatment

  • cranky_granny's avatar
    cranky_granny
    Member
    5 months ago

    Hinicholsmi​  I haven’t had to make your decision but we do have 2 private groups you might be interested in joining 

    if you go to the categories top left the 3 horizontal lines. you will see groups  click on that there will be a list of specific titles one is flat chat no reconstruction and the other is choosing reconstruction if you open each one you can request to join you will get a message re acceptance into the groups once one of the team sees your request. These are private chat areas specifically around these topics otherwise ring the helpline tomorrow 1800 500 258  someone can help steer you through it 

    Im sure there are others on here that have lots of great suggestions  e.g the different podcast’s available to listen to 

    I hope this help a bit

    chuck a word  in the search bar 🔎 and it will bring up previous post with that word in it 

    also find out if you have access to a breast car nurse in your treating team. They are a great source of information when you get a good one

    As  for the the hormone blocking meds there are different ones available if one is too hard to cope with you switch. Not everyone gets all the side effects Ive been on them for 7 years now and it took time but It settled 

    whatever you do only search on reputable sites. Dr Google has a lot of poor information and usually come with dodgy research behind them 

    hope you can find an answer that suits you and you are comfortable with