Scared of double mastectomy

Kelly88Kelly88 Member Posts: 5
I am 29 years old, diagnosed with one Stage 2 Invasive Carcinoma in my right breast only 2 months ago. It was a triple negative tumour for which I have a lumpectomy. I am 3 chemo treatments through and 3 more to go. I have also been told I have the BRCA1 genetic abnormality and will be going through a preventative double mastectomy next year after my chemo treatment.

I keep saying and reading these words but they are slowly sinking in. I am terrified of the pain and the recovery. I am also worried about the aesthetics and quality of life afterwards as well.

I am also dreading not being able to hold my 1 year old son for a month or so at a time when having these surgeries.

Reading all your stories I know that there is life after this horrific chapter. However, I think I just needed to chair my story and be embraced by people who know what I am going through.

Thanks for listening

Xxx
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Comments

  • AllyJayAllyJay Member Posts: 110
    Hi there @Kelly88 ....this Old Chook (59) had a bilateral mastectomy with node clearance on the left at the end of April. I did have a number of complications, but these were largely due to other medical conditions which I have. You mentioned specifically the pain, recovery and being able to hold your Bubbie afterwards for up to a month. Each of us is different, but I can only share my own personal experiences in those regards. I only had one dose of Endone, the night of the surgery, and truth be told, it was more to get the nurse off my back, than anything else. She was convinced that I was in severe pain, but was trying to be a hero. There was pain, yes, but really only when I moved around, and even then, I found it quite bearable. It was more the juggling act of the drains and so on, than pain, that was a nuisance. My recovery was easier than that for an abdominal hysterectomy when I was 26 years old. (Another story). My grandson was one year nine months old when I had my surgery. I certainly was able to hug and hold him straight away. I couldn't pick him up for a good while, but could have him next to me and on my lap without any problems.
     You're stronger than you know
    Very Best Wishes...Ally xoxo
  • AllyJayAllyJay Member Posts: 110
    Hi there @Kelly88 ....this Old Chook (59) had a bilateral mastectomy with node clearance on the left at the end of April. I did have a number of complications, but these were largely due to other medical conditions which I have. You mentioned specifically the pain, recovery and being able to hold your Bubbie afterwards for up to a month. Each of us is different, but I can only share my own personal experiences in those regards. I only had one dose of Endone, the night of the surgery, and truth be told, it was more to get the nurse off my back, than anything else. She was convinced that I was in severe pain, but was trying to be a hero. There was pain, yes, but really only when I moved around, and even then, I found it quite bearable. It was more the juggling act of the drains and so on, than pain, that was a nuisance. My recovery was easier than that for an abdominal hysterectomy when I was 26 years old. (Another story). My grandson was one year nine months old when I had my surgery. I certainly was able to hug and hold him straight away. I couldn't pick him up for a good while, but could have him next to me and on my lap without any problems.
     You're stronger than you know
  • KatyJoyKatyJoy Rowville victoriaMember Posts: 124
    Kelly88 sending you a great big virtual hug! This crap disease has its own set of challenges and considerations in someone of your young age. Have you joined the young women’s group on here? Also, are you thinking about reconstruction? If so, there is a choosing reconstruction group on here that I have found very useful. I’m sorry you have had to join this group but I hope you will find lots of support here
  • AfraserAfraser MelbourneMember Posts: 981
    Dear Kelly88

    Of course you are scared, that's a rational and normal reaction in the circumstances. This is a hard circumstance to come to grips with. But you have got this one early and you can take steps to deal with it. But it's always easier if you take one step at a time. Don't spend your valuable energy worrying about something that hasn't happened yet. When you finish chemo, that's one thing done and dusted. Then you can start thinking about the next step. When you have had surgery, you can think about what happens next in full knowledge of how you feel and react. I only had a single mastectomy, there was very little pain, and I recovered quickly and live a perfectly normal life. Recovery time can vary though from person to person. Your son is too young to understand but children are remarkably resilient. If you have adequate support and advice, he will benefit too. Have you a breast care nurse you can talk to? Best wishes.
  • primekprimek Broken HillMember Posts: 3,298
    Please join our breast reconstruction group.

    In there are many stories of women who have undergone what you are about to (including myself) and most of us have shared our photo journies as well.

    I can't really remember the pain now at all 18 months on. I remember my back pain that was agony...I pulled that getting up and had spasms. I did have a couple of horrid days due to post op nausea which slowed my progress but once this was sorted I was more uncomfortable on the inside rather than if you touched the area. Regular round the clock pain killers will sort it. So a cuddle with your little boy should well be possible. You sit...he climbs on...simple...just not lifting. I had a bad back at times (same issue) when my sons were little and they adapted. Or on a couch...snuggled next to you and reading. It will be possible...You'll see.

    So please join our group and be enveloped with the wisdom of many gone before you. Kath x


    http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

  • lgray3911lgray3911 Member Posts: 99
    Hi I am 38 with 2 young boys my youngest was 17mths when I had my double mastectomy. I had zero pain after explained by the fact when they remove the breasts they also remove all the nerves in the breast tissue so you have no feeling. I had some nerve pain down my left arm because I had to have axillary clearance but all very manageable. Was only on panadol day 2 after surgery and was giving cuddles aswell didn't have much choice poor Rory didn't understand what was happening. It's normal to be scared but you will be fine. Haven't even started thinking about recon yet. I face this journey 1 step at a time so for me was surgery, then treatment (chemo done and just about to start rads), then recovery and sometime in the future recon. Want my body to be back to its best before I will even contemplate recon. Good luck xx
  • LMK74LMK74 BrisbaneMember Posts: 528
    I had a single mastectomy and axillary clearance in August. I must say pain was so minimal I didn't even need panadol. Sore, yes but only if I moved the wrong way or over did it with my arm. I have numb spots under my arm and chest.  Did chemo first, then surgery and now radiation. You'll be fine.
  • Molly001Molly001 Member Posts: 312
    I was scared stupid before my mastectomy but, honestly, the post surgery pain was minimal. If you're having reconstruction at the same time I understand this is a bit more painful but they are soooo good at managing post surgery pain. There's nothing nice about it and it's not fair, especially at your age xxxoo
  • Kelly88Kelly88 Member Posts: 5
    Thanks everyone for your kind words and advice. Yes I am having the reconstruction done straight away as well. I have asked to join the group posted by @primek. Just really nervous about the whole process. It does sound quite painful. I have also elected to have implants since I am hoping for another pregnancy once this is all over. 
  • iserbrowniserbrown Regional VictoriaMember Posts: 1,706
    @Kelly88 hope it gives you comfort to know we are all thinking of you and willing you along!  Take care xx
  • LucyELucyE Member Posts: 241
    Hi @Kelly88, all the best with your surgery. I was scared before my mastectomy, and it was difficult but it wasn’t very painful. It’s great that you’re having immediate reconstruction. Take care x
  • KatyJoyKatyJoy Rowville victoriaMember Posts: 124
    Hi Kelly88, I had a double mastectomy with immediate recon with implants in March this year, I also had a left auxiliary clearance. I am 42 so a bit older than you. Let me know if you have any questions. Kate
  • Kelly88Kelly88 Member Posts: 5
    Thank you @iserbrown, it does help to know you all know what I am going through. Thanks to everyone who has commented as well. 
  • iserbrowniserbrown Regional VictoriaMember Posts: 1,706
    https://www.reclaimyourcurves.org.au/preparing-for-surgery-and-recovery.html


    Here's another link that may help you in preparing - especially when it comes to what to pack for hospital

    Take care xx
  • primekprimek Broken HillMember Posts: 3,298
    @mum2jj We have a new group request awaiting approval. 
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