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Newly diagnosed - double mastectomy

Poodle_Lady55Poodle_Lady55 Member Posts: 20
edited June 2020 in Newly diagnosed
Hello everyone, I'm new on here and sending hugs as we all need them <3.  Firstly I am not great on computers but have read the helpful notes about posting so here goes.  I had a recall from my mammogram and as this had happened before I was not really worried and thought it would be a false alarm.  Then when being examined I was told that I needed a core biopsy and again I thought that they would find nothing and it would be ok.  It wasn't ok and I went to our local breast clinic where I was told I had DCIS.  As this was precancerous I thought this would not be too much of a worry.  I was told I would need a lumpectomy and five weeks ago had the operation.  Small scar not too bad, hoped that was that. No, I got a call from the surgeon the following Tuesday to say that they had found cancer in the margins and had not taken enough out and so wanted to operate again in 3 days, opening up the same scar but making it larger to get it all out. Well to cut a long story short, the lab result from the second lumpectomy threw up something "unexpected" which means that the only sure way to get rid of the cancer is to do a double mastectomy as the other breast is probably a timebomb too.  Still reeling from the shock of it all to be honest and feel like I am in some parallel world where I am in a nightmare but everything else is normal. I am dreading the mastectomy but also know it's the best thing to do.  It's all a bit of a whirlwind isn't it and trying to be brave and positive to family.  I am going to watch the BCNA Webcast this coming Wednesday (the kids have explained what it is)  which I think will be very helpful. Thank you for reading and I'm glad this online meeting place exists.

Comments

  • AfraserAfraser MelbourneMember Posts: 3,889
    Welcome @Poodle_Lady55
    This isn’t the club anyone wants to
    join but it’s a pretty helpful one all the same. That’s a pretty rough series of results, no wonder you feel shocked. I only had a single mastectomy which is pretty straightforward, not painful and healed quickly but a double needs a bit more time and patience, particularly if you are considering reconstruction (I didn’t go
    that road). However many other people on the network have personal experience of a bilateral
    mastectomy and I am sure will
    be happy to talk or advise as you may need. This is a good place to ask questions (we all had a lot at the start and none of them are ever silly!) and sometimes it’s easier to talk to a sympathetic stranger who’s been where you are, loving and caring as your friends and family are. So ask away - the webcast sounds a good start. Best wishes. 
  • PV123PV123 Member Posts: 202
    Hi @Poodle_Lady55
    I am sorry you had to join this club, the initial few days after diagnoses are an absolute mental mayhem.  I can totally sympathise with you.  I had a lumpectomy to start with then had chemo.  I did not need to have a mastectomy but chose to have bilateral mastectomies.  I found the hospital stay and recovery quite straightforward.  The first drain was removed in the hospital, I think on day three.  I stayed in hospital for 4 days, the second drain had to be removed a bit earlier than expected because the stitches around the drain site opened and started bleeding in the night.  I knew from conversations with the breast nurse that this wasn’t an emergency so waited till the next day for the surgeon to remove the drain.  I had an haematoma and a few seromas that had to be drained twice.  The breast surgeon said all these things are small setbacks and nothing to worry about.  You will need help at home as your arm movement is a bit limited.  I did not have much pain but some ladies have had to take tablets to relieve the pain.
    i did not have reconstruction so unsure of that side of things. My advice would be to ask for detailed information from the surgeon and the nurse.  Ask for contact numbers and whom to contact for any questions when you go home.
    Good luck with your surgery.  
  • TonyaMTonyaM Member Posts: 2,725
    Hi @Poodle_Lady55, sorry to hear you’ve had the goal posts moved on you a few times.It must be hard to get your head around it all. The recovery from a mastectomy is not that much different from a lumpectomy- it’s more the psychological side of it.For what it’s worth,I think you are probably doing the right thing- not that there’s ever any right or wrong decision in this crappy bc journey! If having both breasts off now means avoiding radiation,chemo,further mammograms and surgery then it’s certainly a consideration. It also means you’d have more options for recon if you go down that track. I had a lumpectomy and radiation and then 7 years later bc came back in the same spot so had a mastectomy and chemo. I’m sick of being lopsided and my recon options are limited so I don’t bother.
    This network is a safe place to vent or ask questions.Big hug xx
  • CaiboCaibo AdelaideMember Posts: 52
    Hi @Poodle_Lady55, I had a similar diagnosis and journey of discovery of bc.Such a crazy whirlwind. The lumpectomy however showed not only DCIS but also invasive cancer.Thankfully the lymph’s were clear.However they still recommended chemo,which for me was the hardest part to process.I had 4 months of that. I was then given the option of another small surgery to remove more margin followed by radiation or a double mastectomy with reconstruction. After much thought,discussion and prayer I have decided to do the double mastectomy and recon. I have surgery this coming Tuesday. The plastic surgeon recommended the Latissimus Dorsi flap with expanders for me. I am somewhat nervous but at the same time want to get this part over and done with. I still have some months of recovery ahead as the expanders will need to be filled over that time and then I have another small surgery to swap them for implants. The breast surgeon and plastic surgeon have been great and repeatedly explained to me the procedures and what to expect.Please chat extensively about all your questions with yours and get as much information as you need.Hope it all goes well and I can post an update once I have had surgery next week if that helps.Sending Hugs and prayers x
  • AhnnAhnn Member Posts: 42
    Hello @Poodle_Lady55, very sorry to see you here! Your story sounds similar to mine last year. I'm still not sure the shock has worn off yet. I was sent home same day following bilateral lumpectomy on both breasts as the MRI had picked up something odd on my non targeted breast prior to placing guide wires. Like you, margins were not clear and an invasive tumour was identified in pathology. 2 weeks after lumpectomy I was back in for bilateral mastectomy. I was only in hospital overnight and went home next day with 2 drains. Luckily i have had no issues with healing or infection and lymph nodes were clear. Drains were removed at home on day 5 by community nurse. Minimal pain killers were used (panadol) but I needed endone for drain removal. You can do this. Best of luck.
  • Poodle_Lady55Poodle_Lady55 Member Posts: 20
    Hi Ladies and thank you so much for your welcome and your responses which are really appreciated :) Have had a bit of a weepy weekend so your messages cheered me up and have given me strength.  It is such an ordeal and the why me bit is hard but I suppose why not me when so many women are being diagnosed all the time.  When the surgeon gave me the diagnosis I actually didn't believe him, terrible I know, and asked if he could print out the lab results so I could study them but not being a pathologist, I couldn't really make head of tail of them but googled a few words etc but I think this helped me to accept it because it I had something written on paper. Anyway I wanted to say to PV123 thanks for the information about the operation and the reality of drains, haematomas and seromas, it's really useful to know in advance what can happen and I hope you are recovering and are well. TonyaM thank you for sharing your experience and you are right it is a totally crap experience all round and getting rid of them suits me because I would be too scared of future test results, sending many hugs back x  Sending all the very best to Caibo for your surgery this Tuesday, you are in very good hands by the sounds of it and are brave. It is not an easy decision to make. I'm going to have the reconstruction too, with the tissue expanders.  It is a bit of a long road but I spend much time on the beach in the summer so it suits me to have this done. Let us know how you get on and what it's like, lots of hugs and keep strong as you will really be moving forward this week x Thank you Ahnn your experience does sound similar to mine and it is shocking when you go in for a routine mammogram and suddenly they identify cancer and it's all stations go and you think how awful this is then another part of you says thank godness they picked it up. I hope you are doing ok x 

    My father died from prostate cancer at 67 which was too young. My Mum and I nursed him for 5 years and it was so sad.  I remember thinking at the time what a terrible disease cancer is.  This diagnosis has brought it all back.  I think that life can be like a battle sometimes. Be brave and that's all you can do. Love to all x <3
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