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Nervous about surgery

annajjjannajjj Member Posts: 13
Tomorrow is my second appointment with my lovely new surgeon after my initial diagnosis on the 4th June and hopefully I will find out my surgery date for mastectomy which they have promised will be in the next few weeks. I have invasive lobular carcinoma in the right breast, several lumps, but the left one appears to be fine.
I'm so nervous about the surgery and the treatments afterwards. I'm sure everyone feels the same way - any tips for keeping myself calm? I feel so fit and well right now, it is almost unbelievable that in a few weeks I will be sick and sore and my body will have changed so much. Part of me just wants to get it over and done with and part of me is resisting the whole thing. I keep flashing forward to being in hospital and I start getting very anxious. I've had a couple of surgeries before and I wasn't as wound up about those as I am about this.
Any advice will be gratefully received.
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Comments

  • MazbethMazbeth BrisbaneMember Posts: 168
    Hi @annajjj, I am sorry to hear of your diagnosis, but you have come to a great place for support. Great to hear you have a good surgeon too. I also had ILC in my left breast. I was diagnosed in December 2019; neo-adjuvant chemo (4 x AC, 12 x taxol) followed by double mastectomy (BMX); expanders and then implants in December 2020 and I now take a hormone blocker. I knew from the start that I wanted the BMX and my surgeon supported me - it was my decision.

    It is normal and understandable to be nervous. I found the surgery was pretty straightforward - I didn’t have any complications and I was home after a week and mainly taking Panadol for pain relief - for the first few days, I took much stronger medication. I had a drain in each side and these were removed before I came home. The physio will give you exercises and these are extremely important in your recovery so that you get your movement range back, but don’t overdo it, just do what is recommended. If you are in pain, take the medication as it is all very individual and whilst you are in pain, you cannot recover properly. 

    Button up tops and pjs are perfect as you don’t want to have to lift your arm up. I didn’t know what to expect when I woke up - what would I look like? The best way to describe my incisions is two incisions like smiles with a strip of tape over them. I want to tell you this as I thought I was going to come out all bandaged up and that wasn’t the case for me.

    You will have restricted movement, but this will improve each week. When people offer to help, let them. The surgery is changing a part of you, but it is also a giant step forward to your recovery. I talked my surgery through with a psychologist just to get some clarity. Remember to ask as many questions as you need to.

    I think I know a little of how you are feeling and I am very happy to help if I can - ask away. There is also a private group here for ILC specifically, but you just need to ask to join. There is a lot of great information there. I am also tagging @arpie as she has some great links that I think you will find helpful. Take care x
  • FLCloverFLClover Sydney Member Posts: 1,220
    Hi @annajjj. I just want to say that you won’t be sick. You will be sore, but only for a short while. You’ll be given meds to help with that, and exercises to do to help you bounce back. The surgery will be to take out the ca, which means after it you’ll be even healthier than now. Your body will change, yes, but only in the chest area. Do what you need to go through that as it is a significant change, but it will not affect your lifestyle. Good luck with the surgery 🍀♥️
  • annajjjannajjj Member Posts: 13
    Thank you @Mazbeth that is really helpful. I'd also pictured big bandages all around my torso so good to know what to expect. I've bought a couple of button down tops in anticipation but I have to say, the drains worry me. I will do the exercises as instructed. I'm worried about my reaction to looking down and seeing stitches where my breasts once were. I keep trying to picture it so that I don't get too distressed when it actually happens. Not that my boobs are particularly lovely, but they are part of my body and I am slightly freaked out at the thought of not having them anymore. 
    I guess everyone goes through this panicky feeling and I just have to woman-up and be brave but I'm still feeling so nervous. Thank goodness for this site and the support of other people who have gone through this. 
    I really appreciate your comment. 
  • annajjjannajjj Member Posts: 13
    Thank you also @FLClover. Your comments on posts are really sensible and comforting. You're right, I think I have to remember that this is a procedure to rid my body of this cancer. And that is a positive good thing.
  • FLCloverFLClover Sydney Member Posts: 1,220
    @annajjj you’re welcome hun 😘. But I also want to say that you do have the right to be nervous. We all are, some more than others. I was close to a wreck before my main surgery. I was doing things to calm myself and glad it was happening as I really wanted the lumps out, but that didn’t stop me from being terrified inside. It’s unknown, so of course we are scared. And it will def be strange to look down and not see your own breasts. Do a little meditation exercise to show your gratitude towards them now, and also allow your sorrow to be free. You’re parting with two very important parts of your life, you should def be sad. Don’t ignore those feelings, they have a place and they deserve respect. Also take pictures, you’ll be thankful you did later. 
    One thing I did pre surgery, was play songs I really liked loudly and sang and danced to them. It put me in a good mood and eased up my tension. I also read a book that was light. I talked to my sister when I felt really scared and told her my fears. And I had my bro in law do reiki on me. I also walked in the mornings and rested a bit. It took a month from diagnosis to surgery, so it was a bit of a wait. I felt really good afterwards, so happy the lumps were gone and I healed pretty quickly. I had a double mastectomy with expanders. I hated the drains too (had 4 plus a pico dressing) but I got used to them and they were gone within 2 weeks. Pretty soon after that my range of movement was good again.
    Deep breaths, music, talks, meditation, nature. You’ll be fine 😊💟
  • arpiearpie Mid North Coast, NSWMember Posts: 5,332
    edited June 27
    Hi @annajjj  -  you are definitely not alone in being nervous about the surgery ..... I worked myself up into a real sweat .... and afterwards, it was so much 'easier' than I'd imagined!!  Our brains play tricks on us, always imagining the worst ..... Just the mental 'relief' that 'it' has been removed is a huge weight off your shoulders.   Mine was ILC & I had a lumpectomy - and was AMAZED at how small the bandage area was!   Don't forget a small pillow to 'hug' as you drive home, in case of bumps in the road!  Mine was a godsend!  Your Breast Care Nurse may well give you one.

    @Mazbeth has given you some top info  .....  just try not to overthink it.  It really does 'muck with your brain' otherwise.  I found that keeping busy in the lead up to the surgery is good ..... and post op as well, as you are able!  Just make sure you take the Panadol as prescribed - as you don't get any brownie points for 'putting up with it'!

    Yep - that puppy isn't doing you any favours .... so best it not be there!!  Tho, I must admit, I did take some 'before' pics, just for my own reference!   Are you having a single mastectomy or are you having both done?  

    I treated myself to a week on Norfolk Island with my ukulele buddies ..... and loved it!!  Make sure you give yourself a 'treat' now & then, as reward for what you've been thru!

    take care and all the best xx. We've 'got your back' - you are not alone! xx


  • SisterSister Adelaide Hills, SAMember Posts: 4,941
    Yes to all of the suggestions and comments above.  It's hard not to feel really anxious but you will get through it as so many of us have.  I remember joking (my reaction sometimes) to the surgeon that my room's balcony doors were locked because they were worried that we would escape!  Take care.
  • Julez1958Julez1958 SydneyMember Posts: 154
    Hi annajjj
    It is  completely normal to feel anxious following a breast cancer diagnosis.
    it is a huge shock and a lot to take in.
    you are at the right place on this forum as we have all been there.
    Even though rationally I know I had a great team of Doctors  and was in a great facility, the emotional side of me was running riot ( there is a great lady on here with the pen name of “ riot at midnight” which really resonated with me).
    There are many suggestions for trying to calm yourself down including deep breathing, meditation, and listening to music.
    whatever works for you.
    it WILL get better , I found myself a lot calmer once I had a confirmed surgery date ( I had a left mastectomy for lobular cancer) and then once I was being wheeled into the operating theatre I did feel all my cares drift away ( actually I think that was the anaesthetic!) 
    One other thing is you will cry a lot and that’s ok, it’s all part of coming yo terms with the loss.I called it “ the loss of my bulletproof self”.
    Keep well and don’t hesitate to post on here and read other’s stories, I found it really helpful.
  • Cath62Cath62 Brisbane Member Posts: 400
    Sending best wishes to you 🌺
  • annajjjannajjj Member Posts: 13
    @arpie @Sister @Julez1958 @Cath62 Thank you all for your words of encouragement and support. Some great suggestions and reassurance which I really need. I especially like the advice about the small pillow and letting myself cry if I need to, and also @FLClover suggestion about dancing and singing to music. I'm an 80s music tragic and this is working well for me. Turning up the music and distracting myself has been great. I'm tentatively booked in for both breasts in 3 weeks. I thought it would be sooner since it has already been a month since diagnosis but I've been assured the cancer won't spread fast. I have to trust the professionals I think, and try to keep calm. I'm not great at meditation but it is also a good suggestion and I am trying to do it every day. Thank you all once again.
  • arpiearpie Mid North Coast, NSWMember Posts: 5,332
    edited June 29
    My lump was found in late Oct/early Nov & not confirmed as cancer until Jan 5th & was lucky to have my surgery 10 days after that - so I know all about the waiting!  :(  ILC is usually slow growing ..... so shouldn't spread in that time. xx

    I lead our local Uke Group, @annajjj - and it was with their support and humour (and family & friends & then this forum) that helped me get thru my active treatment and afterwards too.  You'd be a 'natural' to join a uke group!!  Most towns & cities have Uke Groups - check them out!  :). We have a few uke players here, too!

    I am in a total time warp re music - I don't recognise anything much after the mid 80s either ....... I just love anything from the 20/30s onward to the mid 80s!  ;) 

    Just turn that music up LOUD & enjoy!!  Make sure you take your ipod/music supply with you to the hospital too as you'll get sick of any piped music (and make sure you take all the necessary chargers for them & your phone - AND take them home again ...) Hospitals are noisy, brightly lit places - so take ear plugs & eye masks to wear at night too!!  ;)  Magazines and puzzle books are better to take if you like reading too - as it is hard to concentrate on a novel with all the constant interruptions!  Take your favourite coffee/tea too, cos theirs usually SUCK! LOL
  • AllyJayAllyJay Member Posts: 829
    A few more "nuts and bolts" ideas for hospital. I found my kindle easier to read in hospital as turning the pages is just a finger tap. Also some Bickford's lime cordial as the bottled water at room temperature is yuck. I also too some cup o' soups for when I was sick of tea or coffee... (my own). Make sure your slippers or shoes have non slip soles or the nurses will take them from you...slip risk. Also make sure you don't need to use a finger to get them over your heel. I found a dressing gown with large pockets on both sides worked a treat for my drains. So much easier than two cloth bags. Also take some cash change for the "Pink Ladies'" trolley and vending machines in case you get the midnight munchies...some don't have a card option.
  • AfraserAfraser MelbourneMember Posts: 3,606
    Dear @annajjj

    I echo @AllyJay’s comment about a dressing gown with pockets - drain management can be - well, draining! - and pockets made life easier. You don’t want to be tripping over drains. I had a single mastectomy, no reconstruction, so I wasn’t in hospital long but if you are not accustomed to dining at five-ish or sleeping before eleven, something better than hospital tv is good to get you through the evenings unless you have hordes of visitors! Best wishes for your op! 
  • MicheleRMicheleR South AustraliaMember Posts: 310
    Hi @annajjj,

    Oh sorry to see you here but wishing you all the best. 

    I had ilc. Had  - very important. I had a rhs mastectomy. No reconstruction. I asked for some skin to be left in case i wanted reconstruction later. I had a big tumour so there wasnt really an option. 

    The surgery itself is not that long. I felt reasonably well after and sitting up able to move my rhs arm etc. They just put a little sort of pad over it for the first night which was removed the next day. Under was a thin strip of something across the scar not unlike if you have a caesar. My mum wanted to see so i let her and she said it looked nice snd neat and seemed relieved. I didnt look for about 2 days and i felt nervous about showering and looking at it but in the end i was surprised that it was all ok. I did have  night where i was upset and couldnt sleep a few nights in. I think it was sort of a post surgical reaction as im blood phobic. They gave me a sleeping tablet as i felt distressed. The dr came to see me and said kind things like the cancer is gone now.

    I ended up needing chemo and radiotherapy. It was a big tumor and im relatively young, 49 now. Risk management. 

    Remember to be kind to yourself always. How you feel is how you feel and its ok. But body is amazing, not amazing enough to grow back a boob but to knit itself back together and tackle getting well. Im still amazed all that happened to me. 

    It takes a few months to feel a bit right sleeping confortably. Hopefully theyll give you a little pillow to help and a bag to carry the drains for the first week. If you get the opportunity stay and be cared for. I oddly thought id be back to work quick smart but that proved a bit silly in my case. I worked 12 hours and my head was a bit not there emotionally so i took the opportunity to take a longer break. Its the shock i think. I needed to process.

    Im good now. Just passed 1 year since diagnosis, waiting for my 1 yr mammogram ( my dr is in quarantine for 2 weeks so its been delayed a week).  Not expecting any problems. Still just the one boob and planningcto get skin removed at the end of the year rather than reconstruction - but glad i had the option. 

    Best of luck.
    Michele
  • SisterSister Adelaide Hills, SAMember Posts: 4,941
    It is what it is and the only way forward is...well...forward.  You will get through it, no matter what "it" is.  Be kind to yourself and allow yourself to deal with it as you need to.  If you need professional counselling then, go for it - it's common.  In fact, it can be a little disconcerting, when you think you're being so original in your not-coping and drama, to realise that you're just the same as everyone else.  "Yes, we often see that reaction about this time in treatment"  Oh well...it just means that the machinery is there to help you deal with things.  I would suggest that if your hospital has a garden, take a gown and easy slip on shoes or slippers that you can wear outside.  Far better than walking the hospital corridors if you surgeon will allow it, and much better for your state of mind - although being Winter, the weather may not be on your side.  Oh...and do your exercises as instructed!
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