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gingerninja's avatar
gingerninja
Member
9 years ago

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

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

coping

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  • primek's avatar
    primek
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    8 years ago
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    Fantastic how all going and so far happy with it. Yes my boobies dropped at the 2 week mark. The pathology then leads to treatment plan so you then know the next step so look forward to your update. Take care. Kath x
  • melclarity's avatar
    melclarity
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    8 years ago
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    Sally, I dont know if you joined the group of Breast Reconstruction? That helped me so so much prior to my surgery, I in turn posted my story and everyone knew how bad I was lol. Im talking major meltdown had to contact a Psychologist that I saw 3yrs prior and that was the turning point. Funny thing is I dont feel like I lost my breast, its just different and I thought Id be devastated without my nipple but it hasnt bothered me. I have no idea what happened after surgery but Ive been very content with it all. Still a revision surgery to go to match the boobs and put on a nipple but thats ok. I couldnt have an implant as this was my 2nd diagnosis in 2015 and I had radiotherapy in 2011. So rest up, and call on the troops to pamper! I say! Melinda xo
  • gingerninja's avatar
    gingerninja
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    8 years ago
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    Thanks heaps Melinda @melclarity !!!!  Yup I definitely got myself worked up into a right mess prior to surgery which is funny because I am normally pretty chilled and level headed about stressful things.

    I will definitely update re path results this week.


    Return hugs :)

    Sal

  • melclarity's avatar
    melclarity
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    8 years ago
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    Sally, that's great news to hear you are done and through it!! The anxiety prior can be horrendous, I know I was shocking leading into my mastectomy/diep flap recon. I do think we imagine it to be worse than it is which isnt a bad thing I think! Makes a huge difference as you say if you manage to escape that dreaded nausea and if you can take pain relief. The Diep flap too sat high at first but it does settle LOL, and eventhough it had its added tummy surgery have bounced back really well and quickly! Wishing you all the best for your pathology, that does seem to take awhile, let us know how you go! Hugs Melinda xo
  • gingerninja's avatar
    gingerninja
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    8 years ago
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    Thanks @nikkid..............I really do feel like I am travelling ok post op.......easily tired and occasionally teary, which tend to go hand in hand, but this is all to be expected...

    No I didn't have expanders first - straight in with silicone implants........still all taped up and covered in dressings, so I can't really see what they look like apart from some visible bruising under a waterproof dressing... Feeling very blessed to be able to have been able to have it all done in one op.....

    Cheers

    Sal

  • nikkid's avatar
    nikkid
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    8 years ago
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    That's FANTASTIC news Sally @gingerninja! I am so pleased for you! I can't recall whether you had expanders first or went straight to implants? I'm only asking that because the Aeroform expander (the CO2 one) I had inserted actually sat very high and pushed the top of my pectoral muscle out. It tsayed like that fir quite a while, until some of the CO2 began to dissipate and then it looked more 'normal'. My new boob (the DIEP Recon one) has settled very well and is exactly matching its counterpart...but it took the swelling above it (again just below clavicle) about 3 weeks to subside.

    You sound like you're doing great. You go girl xxx

  • gingerninja's avatar
    gingerninja
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    8 years ago
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    Firstly I really want to say a huge thank you for the lovely comments and well wishes I received from this community prior to My bilateral mastectomy, sentinel node biopsy and reconstruction all went to plan I am told......I am still waiting on those dreaded pathology :):):)

    I was first on the theatre list on Friday 21st which was a huge relief given my sky rocketing anxiety.  5 hours in theatre, and a brilliant anaesthetist who worked his magic to ensure I suffered no sickness or reactions afterwards (which I normally do with a GA). 

    I have to say that I woke up feeling better than I expected too and the recovery over all has been far better than I was expecting too (it really has been better than my previous surgeries non breast related).  I was up to the loo at 10.30 pm that night with the help of a nurse and in the shower the next day at 8.30 am.  Whilst there has definitely been pain at times I have ensured that I kept on top of it and haven't been shy in asking for pain relief and found that the discomfort was manageable.  I started my physio exercises on day 2 and found that getting up and out of bed to be the best thing for me.  Lots of little laps around the ward was also great to help shift the building fluid in my legs.

    I had 5 nights in hospital and was itching to get home - hospitals are no place for rest!!!!  So my dr compromised and let me go home with my drains in (as her original plan was that the drains would need to be out prior to going home).  I have been visited daily by the community nurses who are wonderful.  I had one drain removed on Friday, one week post op, however the other drain is being a tad pesky and  is still in place........it is irritating, but it is doing it's job which is the main thing. As per other people's comments, having the drain removed helped make me feel far more comfortable.

    The nurses are happy with how I am healing.  I see the plastic surgeon tomorrow as I still have all the original dressings in place.  I was really surprised by how high my new boobs are sitting up.......and then relieved when one of the nurses told me to look at it like a perm - takes a couple of weeks to drop !!!  God I laughed at that...makes sense though given the swelling and bruising that needs to subside.....I am yet to see what my salvaged nipples look like as they are under dressings - so that will be interesting......

    I see the breast surgeon on Wed and expect to have my pathology results...........what will be will be and I know that I can tackle what ever comes head on !!!  the support from my family and friends has been just amazing ....

    Once again - thank you for welcoming me so warmly into this community and for reaching out with your support xxx

    Sal xx


  • gingerninja's avatar
    gingerninja
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    8 years ago
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    Thank you @DebP for sharing your journey with me...it sounds like you did really well with your surgery and recovery.....I wish you all the best for the remainder of your treatment xxx
  • gingerninja's avatar
    gingerninja
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    8 years ago
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    Thank you @Butterfly 40.......  I am sorry to hear that you too have had your world turned upside down...It is scary but with the right support adversity can be overcome......I wish you all the very best for your surgery and for a speedy recovery.....and then what ever the journey ahead looks like for you xx