Double mastectomy - words I never thought I would hear or say.....

gingerninjagingerninja Member Posts: 38
edited April 26 in Newly diagnosed

HI,

My name is Sally and I have been recently looking around this site and finally feel ready to post...

Next Friday 21st April I am booked in for a double mastectomy and immediate reconstruction, plus sentinel node biopsy following my DCIS diagnosis on 31st march.  I am absolutely terrified of the post op pain and recovery, let alone what the next lot of pathology results will throw our way.

I think I am still in shock......3 short weeks ago my very pedestrian life with my hubby and 3 children was rolling along quite nicely.  I had not a care in the world when a went for my first ever mammogram following my 40th birthday in Jan.  I was just being proactive in managing my health after a crappy 18 months with chronic back pain from Degenerative Disc Disease and arthritis. I had been feeling really run down and tired for months - and every time blood tests were done, different results came back but nothing stood out to indicate cancer (just lots of variations in blood counts, high calcium, low vit D, changed shape or red blood cells).  I have Coeliac disease too, so my GP and I were thinking that this run down feeling was associated with having an autoimmune disease......

 Getting the call back from Breastscreen 2 weeks later was concerning, but still I thought all would be ok - they were just being thorough right??  3 pesky spots showed up but still I was confident that nothing was nasty.....a biopsy was done and I went on merry way.  That was a Monday and when I saw my Gp on the Friday for results I knew immediately things were not good before she even said a word (gosh that must be such an awful job to have to tell someone they have cancer!!) 

I remember the feeling of the air being sucked out of my lungs at hearing the word cancer.....and then I went back to work because I suddenly felt the need to get time sheets sent off to payroll......shock does funny things to people!!!

since  then it has been a whirlwind of appts and more tests......further biopsies revealed multifocal BC.......my amazing surgeon told me she could not save the breast and strongly urged me to consider removing the right breast to reduce future risk given that 2 out of my 3 lumps are not behaving like my other "garden variety lump".  So as a mum of 3 I decided to go with the double mastectomy and immediate reconstruction with implants.

Apart from the fear, I am doing my upmost to stay positive and keep a normal routine and have continued.

reading such similar stories has been such a help over the last week or so  - so many inspirational women on this site!!! 

Thanks for listening x

Sally

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Comments

  • nikkidnikkid Member Posts: 626
    Wow! Hi Sally.... So sorry about what you're having to go through, but you've definitely come to the right place!

    I was diagnosed with very early stage multi focal DCIS (and a small area of IDC) in Feb last year in my left breast. No lumps or bumps - just a routine mammogram....nothing showed up on the ultrasound, just those sparkly little calcification dots! I went on to have a left vertical skin sparing mastectomy with insertion of an Aeroform tissue expander last April. 3 weeks ago, I had a DIEP Reconstruction.

    I understand how you feel...it's like a whirlwind and it does take some getting used to. But you will do it...and we will be here to help along the way.

    Sending you big virtual hugs....it's not easy at this stage, but you are on your way. You have the first step in your plan and then, once the pathology comes back, the next steps will reveal themselves. Feel free to ask questions, vent, seek support - there's a hell of a lot of expertise here  :)

    Take care

    Nikki xxx
  • gingerninjagingerninja Member Posts: 38

    Thank you so muck Nikki for your kind words and support..........I feel lucky to be able to talk to others in this space and know that I am not my own and I will get through this.

    I just feel so fixated on the pain factor which I know is silly - they will give me good drugs and keep me comfortable but I am a low pain threshold type of gal.   even though I have had 2 C-sections, a lap band and a hysterectomy I am terrified!!!!  The pathology results are out of my hands and what will be will be - and I know I can tackle that when it comes.......

  • nikkidnikkid Member Posts: 626
    edited April 15
    Everyone is different Sally.....and it depends on (1) your own pain threshold, (2) if you have any limitations as to pain meds (for example, I'm codeine intolerant so tend to avoid codeine-based meds, and I have a friend who cant take any opioids at all - but there are plenty of options that have worked for me like Fentanyl - which I self-administered for the first 24 hours after both my mastectomy and my recent DIEP). Talk to your anaesthetist. Tell them you're worried and nervous. There is NO reason for you to be feeling too much pain! Be assertive...and ask for what you need. I found my pain management was much better after my DIEP than after my mastectomy - different anaesthetists! Next time round, I'm going to definitely ask for the second anaesthetist if he's available. He was brilliant.

    Share your fears with your breast and plastic surgeons, as well as the anaesthetist. They are there for you. They don't want you to be in any more pain than you need to be and will note it down and do their very best to help out.

    I have also had 2 caesars, as well as ovaries and fallopian tubes removed....so know where you're coming from (my big fear is needles!!!!!)

    Just realise that you are essentially booked in for two operations: the first is the bi-lateral mastectomies (usually done by a breast surgeon, which also usually incorporates a sentinel node biopsy or axillary clearance.....depending on what they have planned for you) and the second is the insertion of the implant (whether it's saline or silicone or CO2....again - this is up to discussions between yourself and the plastic surgeon). The implant usually goes under your pectoralis muscle because this helps to inhibit any infection - so expect some discomfort from just the expansion of your pec as part of the insertion process.

    Like I said, everyone is different. But there is no reason for you to be out of your mind in pain - there are modern meds to help you with this!

    I am sure other folk will be able to help as well

    Nikki xxx


  • primekprimek Broken HillMember Posts: 2,788
    Hi Sally, sorry you have had to join us.
    We have a reconstruction group you may like to join where you can view photos and read more stories if you like.

    14 months ago I underwent a bilateral skin sparing reduction mastectomy with immediate delayed reconstruction. And a sentinal node biopsy where they took 3 nodes. A mouthful. Basically means big boobs ...and not needing all the skin saved. Insertion of tissue expanders with a dermal matrix sling which enabled a near full expansion and preserved my breasts in their original position. 12 days ago I underwent my changeover surgery to my silicon implants. 

    The initial surgery was a bit challenging but most of my issues was related to nausea post op and hurting my back. It is a bit tricky getting up out of bed as you can't use your arms and I never had my bed controller in a spot to reach until the last day. It was up too high. My back went as it got stiff laying aroubd too much.

    I'd love to say it wasn't painful but I found it difficult as I couldn't tolerate most oral painkillers but eventually found a regime that was good. Initially your chest feels somewhat tight and the lower stiches feel like you have a tight bra on. As I'm a side sleeper it was hard but once home, lots of different pillows and a wonderful husband who got used to stuffing one behind my back when I turned a little on my side helped. (And a back brace for a few days) The tiny U Shaped pillows (like a neck pillow) were a must and I was able to position it in such a way it provided support to the wounds but allowed the boob through the hole so no pressure. I wore a post op bra 24/7 for 6 weeks which helped with the support and found hugging a flat normal pillow also helped.

    I'm sure you will find it quite okay if you got through those previous ops and yes there are good pain medication choices out there. Within about 5.5 weeks I felt completely comfortable, needed the odd panadol and was back on the treadmill at least at the gym. By 3 weeks I was doing hydro pool exercises. Certainly the changeover surgery was easy pain wise and I only required panadol once on the ward. 

    The beginning is challenging with the fear, the tests and the decisions. You will feel relieved once surgery is done. I hope all gies well. Feel free to ask anything you like and we'd love you to join our reconstruction group too. Take Care. Kath x

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

    Also @socoda went straight to implant so she may be able to give you more information about this. 
  • melclaritymelclarity Member Posts: 2,223
    @gingerninja I think we absolutely can all relate to our routine lives in a second changed forever feeling. Complete panic and devastation. My first diagnosis was DCIS high grade left breast, lumpectomy, radiation and tamoxifen 4yrs. Recurrence IDC ER+ Stage 2 Grade 3 Chemo and now on Arimidex. due to recurrence I was urged to have a mastectomy Ive been clear since June 2015. Ive had numerous surgeries, biopsies you name it!!! I totally hear you about the pain and the worry of it. 

    Like Nikki, I had a Mastectomy/Diep Flap reconstruction it was 7hrs, its a huge op but because its a tummy tuck as well using your tummy for the reconstruction. I was devastated and so frightened but I have to say 6 weeks on I am so glad I did it. I will never look back now. I'm allergic to pain killers so I admit surgery was a bit of a struggle for me, but having said that by week 2 you really turn the corner and I was managing on panadol osteo and Nurfoen. It absolutely is doable!! I urge you to join as Kath said the Breast Reconstruction group,its fantastic!!! Alot of us have photo stories there of our surgeries. 

    I wish I had of had this Forum through both of my Breast Cancer Diagnosis but I'm so glad I found it post chemo and through the lead up to reconstruction.

    There's absolutely nothing you can say that we haven't thought felt or said before ourselves. Its a beautiful safe place with such amazing women! I feel so blessed!!! So step at a time! Big Hugs Melinda xo
  • socodasocoda LeumeahMember Posts: 1,326
    Hi Sally, @gingerninja and welcome. I did have a single skin and nipple sparing mastectomy with immediate reconstruction using a silicon implant. I was in hospital for a total of 6 days with two drains. I was showering the day following surgery and walking down the stairs to the cafeteria for a cappuccino also the day following surgery. I was on targin for 3 days and then after that I asked to not have anything other than panadol which I had every 6 hours. There was a feeling of tightness across my chest due to the pec muscle having the implant underneath it but I did not associate that tightness with pain. I did have sentinel node biopsy as well and that had been done through the surgical incision under my breast and I found that that area was my most painful out of the whole thing. My wonderful breast care nurse had given me some extra dressings that I could pop under my mastectomy bra to act as a buffer and that was a most welcome relief. Overall I was totally surprised at how little pain I experienced. I was sent home on the Monday and had my first drain removed on the friday. My second drain decided to hang around a lot longer (would not reach prescribed drainage levels). My surgeon would not have the drain removed until it had reached 20 mls for two consecutive days and this was so that I did not develop a seroma (fluid filled area that needs to be drained by needle) she did not want to have to drain it as it is that much harder to do when there is an implant to worry about avoiding. During this time the site where the drain exited my chest became quite tender and I found that adding additional micropore tape (from the chemist) to stop the drain from swinging around was brilliant in reducing pain levels there. I used a U pillow from Kmart to help prop me up in bed and this pillow as well as the smaller zonta pillow (from breast care nurse or from the zonta organisation) assist in keeping you comfortable. I am currently at 10 months post surgery and my implant and surgery site are far better than I could have hoped for. I now have a super boob!!! and I will be looking to have surgery to match my remaining breast to my super boob as soon as my surgeon says its okay. You will do wonderfully, just remember to follow your exercises to ensure that your arm movement is not compromised. Wishing you all the best. Xx Cath
  • HelloCarolineHelloCaroline Member Posts: 47
    Hi Sally, I'm very sorry to hear what you're going through. I had a double mastectomy and reconstruction, and had early primary school aged children at the time. I spent the first week after surgery at my parents' house (while my husband looked after the kids at home). This really helped to deal with the discomfort and tiredness of the first week. If it's an option for you, I recommend it. As a mum, this is one of the times you need to be unashamed about putting yourself first.
    Best wishes.
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,496
    Glad your doctor kept on testing to get to the bottom of the tiredness and didn't just say its children running you ragged. It sounds like with your back pain your doctor thinks having both breasts in surgery might help a little with that back too so that could be a good thing? Don't worry, they won't send you home from hospital too quickly having a double with reconstruct and they will have you on good pain meds and allow you time to adjust. My only real bad trouble was after the surgery I was puking all night as they gave me gas anaesthetic which we have now established I cannot take. Little tip for when you get home, plan hanging washing down low like on a foldable clothes line and hang your bathroom towel down low as well. Reaching up is a problem for a while due to tightness so move the high stuff in your kitchen cupboards that you use all the time down lower. Good luck with your op and pop back in if you need any help. <3 
  • Hopes_and_DreamsHopes_and_Dreams Gold CoastMember Posts: 601
    Hello Sally, welcome to the forum but I am really sorry for your diagnosis.  We can all relate to how you are feeling - we've all gone through the shock of being told we have cancer, whether we found a lump ourselves or had that terrible call back from Breastscreen.

    These early days are so difficult dealing with the unknown. There is so much going on, it's like a foggy nightmare!  I've always likened it to a roller coaster. There are days when you feel like everything is spiralling out of control and you just want to get off!  

    I had a left nipple sparing mastectomy with immediate silicone implant last August, 13mm IDC picked up in a routine Breastscreen mammogram. I was lucky and didn't need radio or chemo.

    I was surprised how little pain I had post op. I got back to my room at 10.30pm and was really thirsty.  Several glasses of water later I was up and down peeing 3-4 times in the hours immediately post op. Shower the following morning and a walk down the hall carrying my drain bag.  The most discomfort came from the drain in my side under the arm. This one seemed to run up my side and over the top of my breast under the collar bone. Felt fantastic when it was removed on day 3.  The other drain hung around for another 6 days. Neither hurt coming out.

    The physio came to visit the morning after surgery and started my exercise plan. It's so important to do the stretches. It really helped the tightness in my pec muscle from the implant and stopped too much stiffness in the arm my sentinel nodes were removed from.
    it also helped to gently massage my pec muscle when it initially felt tight. 

    Button down PJ tops were handy as I seemed to be forever opening my top for drains and dressings to be checked. Plus it made it easy for me to dress without needing to lift my arms.

    You will be sleeping on your back for a while at home so make sure you have lots of pillows to support you. 

    You are never alone and will find amazing support here. Wishing you all the best for 21st Sally.  Jane xx

  • gingerninjagingerninja Member Posts: 38

    Thank you Jane @hopes and dreams!!  it was really helpful to read about your experiences :)  your reply and insight is greatly appreciated.  I am glad to hear that you didn't need further treatment too!! 


    cheers

    Sally x

  • gingerninjagingerninja Member Posts: 38

    thank you ladies for your kind words of support and encouragement and handy hints!!!  much appreciated xxx

  • Butterfly 40Butterfly 40 Member Posts: 143
    Hi@gingerninja, thank you for sharing your journey with us. It is a journey we never thought we would end up with. 
    I was diagnosed with invasive lobular carcinoma on 23rd December last year. I was living my happy life with two beautiful children and a lovely husband. I was 40 years old. I felt my life turned upside down. I had lumpectomy before new year. But after many more appointments, further Investigations and biopsy, I was told my breasts are nightmares. I am booked for double mastectomy and reconstruction in 2 weeks. 
    Wishing you the very best with your surgery tomorrow! Lots of love and hugs for you xxx
  • DebPDebP Member Posts: 6
    Hi Sally

    This is my first time on here. Well done you for reaching out so early. I can imagine the feelings that you have right now- the eve before surgery. I hope that I can alleviate some of those fears for you. I was diagnosed with invasive bilateral lobular breast cancer in late February- WOW - what an emotional roller coaster!
    I had a bilateral mastectomy, a left axillary clearance and insertion of a portacath on my 52d birthday - March 8th. Post operatively I was not as bad as I feared. I had help getting out of bed the first time but was able to manage after that. The drains were a pain in the backside- easy to forget about initially but the staff should hopefully supply you with a little bag. The pain was there- more so in the drain areas and it is a relief when they do come out. The pain wasn't unbearable and was managed well with regular medication. I showered myself the following morning and was given the option to discharge day 1 post surgery- I opted to stay another night just to recoup a little longer but if truth be told - I would have been ok at home. I was lucky that my big sis flew out from the UK to help me out. I also have a 13 year old daughter helping me too.This help was invaluable as you won't feel like doing meal prep, washing, nor will you be able to drive. Biggest challenge was reaching things in high cupboards- and frustrating. 
    My biggest challenge/ fear was waiting for all the results- fear of the unknown- loss of control. Once I had all my results and had seen my oncologist I no longer felt that I was on that roller coaster- yes I have good days and the odd bad days but with support and love I get through then - as only a Mum can do. 
    I have just completed cycle 2 of chemo- this will be followed by radiotherapy. A long journey ahead, but nothing that I fear I can't handle. I am not sure where this inner strength comes from- I don't think it was there before diagnosis. 
    Sally I sincerely wish you all the best for tomorrow. I hope things run smoothly for you and that you will be well supported once home again. 
    Love and best wishes 
    DebP xxx
  • Hopes_and_DreamsHopes_and_Dreams Gold CoastMember Posts: 601
    Hello Sally @gingerninja,  wishing you all the best tomorrow. You won't be alone as you'll be taking all our positive thoughts with you. Let us know how you are doing when you can.
    Sending a hug, Jane xx
  • nikkidnikkid Member Posts: 626
    Hi Sally,

    We will all be thinking of you tomorrow.

    Please keep us posted - here for you

    Nikki x
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