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Third time, and lucky again

VSPVSP Melbourne, VictoriaMember Posts: 10
Hi all.  I was recently diagnosed with a 10mm invasive ductal carcinoma ER+, P+, HER2- on the right side and had a wide local excision with sentinel node biopsy a month ago and I have been so very lucky.  No node involvement and no evidence of spread at this stage. 
This was my third diagnosis.  My first was at the age of 27. A chance finding of a small lump (a cyst) in my left breast led me to my GP, a mammogram and the detection of a cluster of microcalcifications on the right side.  A lumpectomy revealed a 2mm carcinoma and it was followed by a partial mastectomy.  Very small and no node involvement. So I dodged bullet number 1.  20 years later on my annual check up an MRI revealed a 6 mm DCIS in my left breast.  Another excision, followed by radiation therapy this time.  I had genetic screening and was told I was negative for the BRCA genes.  Bullet number 2 dodged!
So now I’ve been given a choice: radiation on the right side or a double mastectomy with reconstruction.  I’m seeing a Plastic Surgeon for the first time tomorrow to discuss ‘options’.  I agree with my lovely breast surgeon that the latter may well be the pathway to peace of mind, but I have to admit I’m terrified of the unknown road ahead.  It has been good to read others’ stories here and to realise that whilst the surgical option is not easy in the short term, it seems to work out OK for most.  I also watched the recent webinar that BCNA hosted on breast reconstruction and found that to be really valuable in explaining options and hearing from women who had been through it. 
Any suggestions for how to approach the Plastic Surgeon appointment?  I’ve been told in no uncertain terms that I can’t bring someone along with me because of COVID so will have to go alone. 

Comments

  • Julez1958Julez1958 SydneyMember Posts: 402
    Hi there
    I decided on a double mastectomy after a 5.5 cm lobular cancer in my left breast was not discovered on mammogram.
    I had dense breasts and apparently  lobular cancer has a habit of not showing up on mammograms.
    I was quoted a 10 percent chance of getting cancer in the other breast and decided to get them both done and have DIEP flap surgery.
    It is a very personal decision.
    I don’t regret it and am now 3 months post the DIEP surgery.’
    You can ask to join the private group on here “ Choosing Breast Reconstruction” and also check out the website “Reclaim Your Curves”.
    It is a shame you can’t take someone with you to the appointment as I took my husband to mine and it was good as I didn’t take everything in.Maybe you can ask if you can record it? at the very least you should take a list of questions and tick them off.
    There are two options , implants or using your own fat (DIEP is the most common, using fat from your tummy).
    Not everyone is a candidate for the second and it is a much bigger surgery than implants.
    If you are thinking of doing that a good question to ask would be how many of these operations the surgeon has done.
    Also if the Dr uses a local anaesthetic “ painbuster” in the abdomen area after the surgery as mine did and it meant I had hardly any pain in the abdomen after the operation.
    I am happy to share my experience with you if you private message me.

  • ZoffielZoffiel Regional VictoriaMember Posts: 3,309
    edited November 2021
    Hey @VSP. You may not be able to bring anyone with you, but that doesn't mean you have to go alone. Set up a zoom meeting so your support person can be there on the phone, or better still get your surgeon to do iit and invite them in so you don't have to manage the tech. We've been dealing with this shit for long enough now that the medicos should be used to it and will have everything set up for remote consults.
    Those tits are really not your friends. You maybe happier without them. Mxx
  • AbbydogAbbydog Adelaide, South AustraliaMember Posts: 306
    I'm going through decision and planning at present.
    The DIEP was my preference, as a more natural result. I have been told that I am not suitable.
    After having had a CT scan to check on blood vessels in my abdomen.
    So now I am planning a Lat Dorsi, on my Mastectomy side, and a prophylactic Mastectomy to my other side.
    Both sides will end up with implants.
    I have also considered fat grafting as a sole method of reconstruction,
    It would have been after a prophylactic Mastectomy to my remaining side.
    The surgeon had not done many cases like this. I could have a achieved small 'breasts' this way.
    It was to involve approx 5 episodes of Liposuction and fat grafting. This was to be more expensive, but less invasive.
    Today I received information that Fat grafting now has Medicare approval and a number for the claim.
    Before November it was not covered by Medicare.
    If seen 2 Reconstructive Plastic surgeons, in SA.
    I don't know how to choose the surgeon. 
    I wish more information re each Drs success and failure rates was available.
    Sorry I haven't given you solid information.
    But maybe raised some questions for you to add to your list.
    All the best.


  • jennyssjennyss Western NSWMember Posts: 1,483
    Dear @VSP,

    from jennyss in Western NSW
  • Julez1958Julez1958 SydneyMember Posts: 402
    hi @Abbydog
    there is a Facebook group for “Reclaim your Curves” ( see website) where many women from all over Australia post about breast reconstruction.
    I am in Sydney so can’t help you with plastic surgeon recommendations but there will no doubt be some South Australians on there.
    I chose my plastic surgeon after being referred to him by my ( fabulous) breast cancer surgeon and we instantly connected.
    He works in both the private and public systems here in Sydney and has been doing all types of breast reconstructions for many years.
    I knew I had picked the right surgeon when I was recovering in hospital and all the nurses were singing his praises ( they were not so taken with my anaesthetist).
    I had my surgery in the Private system which had a number of advantages but I did have steep out of pocket expenses.
    All the best.
    🌺
  • VSPVSP Melbourne, VictoriaMember Posts: 10
    Thanks for your responses @Jules1958, @Zoffiel and @Abbydog.
    It was an incredibly long appointment, and whilst I had done some reading about options prior to attending the appointment I found all the information so totally overwhelming. It was all explained in such minute detail.  In trying to process it all afterwards I think what he was saying was that because I had had radiation to one breast there was a much higher risk of contracture if I had an implant, but he seemed unsure if I would be a good candidate for a DIEP flap because I do have a scar from a previous surgery, and I don’t have enough belly fat to make breasts the same size as they are now.    Abbydog, he has given me a form to go and get a CT scan to look at blood vessels so I’m thinking maybe he will wait to receive that to see if a flap is do-able?  
    Jules1958 it’s good to hear from someone who has been through the process and is on the other side.  I have looked at the resource you suggested (it’s great) and also I joined the ‘Choosing Breast Reconstruction’ group. I definitely like the idea of a ‘painbuster’ so will ask about that one if I am able to go through with the DIEP. 
    Zoffiel, I wish I had thought about the Zoom session before the appointment. I thought I had it together, I even took a notebook and pen with me and did not write a single thing down!  I suspect despite my best efforts my emotions got the better of me.  Either that or the surgeon was not great at communicating or wasn’t really sure himself.  Perhaps my case is a bit more complex than he is used to😐
    It’s such a hard decision.  I’m wondering if it might help you Abbydog to think about each of the surgeons you’ve seen and what they have said.  If the information they have given is the same, maybe just go with the one you are more comfortable with - go with your gut.  I know my breast surgeon very well as he was the one I saw after my last diagnosis 7 years ago and so I trust that he has sent me to one who is very competent.  I didn’t ask him about successes and failures in the end but I may request another appointment if another isn’t arranged following this scan in order to have any other questions met.  I won’t be rushed into this.
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,309
    @VSP This is serious stuff. If you need another appointment, make one. A couple of hundred bucks is not always easy to find, but it might be worth it for peace of mind and clarity. Anyone who gets huffy about that is probably best avoided.

    If you were not convinced that he is the right surgeon for you, ask for another referral. Trust in your previous surgeon is fine, but referral pathways can be murky and there often other avenues.

    A bit of time and money spent now may save you years of regret. You are not buying a pair of socks; you are signing up for a life changing event and it is unreasonable to try to do that if your brain feels like scrambled eggs and you are not sure that what is on offer is right for you.

    Take a breath and a couple of days and reassess it if you feel you need to. MXX
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