Here we go again

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Rowey
Rowey Member Posts: 37
I underwent a mastectomy for grade 2 lobular carcinoma in July last year. Both sentinel node and axillary node biopsies were clear. I didn’t require radiotherapy or chemotherapy but commenced anastrazole which I am tolerating well. My Oncologist told me I am officially a breast cancer survivor and I felt very well and grateful.

Today I had my routine mammogram and ultrasound of the other breast and the sonographor told me “there is something there”. So here we go again with the tests and the waiting and the uncertainty. It’s not the diagnosis that bothers me as much as this time before I know what’s going on. Hopefully it will be nothing, but you have to go through the process as you all know.

I know that I have been so much more fortunate than many of you using this space but it still sucks as you all know!
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  • arpie
    arpie Member Posts: 7,733
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    Gosh, @Rowey - I am really surprised the sonographer actually said that to you - as it is the specialist's job to 'read the scans' - not theirs! ..... and I hope that (like me) the 'call back' is NOT what you think it may be :(  

    I had a call back for the first 4 years after my surgery - the one late last year was the first time I DIDN'T have a callback!! I had biopsies done most years - all for nought .... (just some dead tissue floating around) so (hard tho it is, I know) try not to read too much into that unfortunate comment.  grrr

    Yep, the waiting sucks so I hope you get checked out sooner than later xx

    take care

  • Rowey
    Rowey Member Posts: 37
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    Thanks @arpie. The Sonographer didn’t say anything before checking with the specialist but she knew that I knew something was concerning her because of the amount of time she was spending in that area.

    I have an appt with my Oncologist on Tuesday so not too long to wait but of course it seems like forever. 

    This is the hardest part
  • Keeping_positive1
    Keeping_positive1 Member Posts: 555
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    @Rowey I am hoping for you that it is not anything serious!  Last year I was alarmed when after my mammogram and the ultrasound guy suggested something sinister was going on!  It turned out to be my usual seroma he was seeing.  I have seromas in both breasts, but nothing of concern, so I hope good results for you.  Try to keep yourself as distracted as possible and wishing you all the best on Tuesday.
  • Sketa
    Sketa Member Posts: 18
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    Hi @rowey and @arpie
    I am after two years, again going in; this time a right mastectomy - next week.  I don't want reconstruction as I am concerned about over-heating of the chest cavity and having to do the op again, if things do not turn out as I hope.  However, I am also concerned about spine scoliosis, if I do not do breast reconstruction.  Have you any insight/experience on this? I presently suffer with acute pain in my back and shoulders since my last surgery - already with significant scoliosis - living on pain killers is not much chop and I don't want to stuff up my liver.   Also, what are the chances of cancer showing up again after my mastectomy and to where would it likely go?  What are survival odds?  I know you might not be able to answer all this, but do your best.
  • arpie
    arpie Member Posts: 7,733
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    So sorry to read that, @Sketa - all the best with your surgery next week x .....

    How long ago was your previous surgery?  Have you addressed your concerns with your surgeon re the scoliosis/back & shoulder pains?  In a funny way, having less weight (from the mastectomy & no reconstruction) may actually reduce some of your pain, hopefully?

    My niece has scoliosis (not severe) but if you check out the 'search' function (in the blue banner) you can search many specific terms - here are the results from 'scoliosis' ... 
    https://onlinenetwork.bcna.org.au/search?query=scoliosis&scope=site&source=community

    If you are on continual pain killers - ask if you can see a Pain Specialist - there are many pain control options out there - I think it is Anti Inflams that can affect the liver more - but pain killers can be addictive & have unwanted side effects as well - so worth investigating other pain control if you can. 

    No-one really knows if/when/where recurrence will/may occur - it is one big lottery.  But sadly, a percentage of us WILL have a recurrence.  :(   Best thing is to always get checked out if you have continuing pain/discomfort or anything else that makes you feel uncomfortable for longer than 2-4 weeks.


    @Rowey - how are you going?  I hope that you are travelling OK & going well with your ongoing treatment & recovery xx

  • Rowey
    Rowey Member Posts: 37
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    @Sketa your story sounds very difficult but I do hope you can find some answers for all your concerns. Unfortunately I feel most unqualified to help, except to offer you concern and support on your journey.  

    My second “scare@ turned out to be just that….a begin cyst so I feel very fortunate. 

    Thanks for your concern @a@arpie. Currently waiting on reconstruction next month. Otherwise going well
  • Sketa
    Sketa Member Posts: 18
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    Thank you for getting back to my @Rowey and for your support.  Just want to know where I stand.  I pray your journey is a gentle one.
  • Sketa
    Sketa Member Posts: 18
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    @arpie My last surgery was the 30/3/21 and it has been a difficulty to years - mentally, emotionally and physically quite draining.  I am back at work and have felt more like myself than I have in the last 6 months.  Yet, that phone call came and it has set my mind racing again, with all the same old worries /concerns hitting me like a sledgehammer.  So, I just wanted to talk tonight with someone to debug the worries and sit on the positive fence again. I expect you understand where I am coming from?
  • Sketa
    Sketa Member Posts: 18
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    I've sorted out all the paperwork today, a lot more than last time.  Anyhow, thanks again for the support.  I will talk to you all after my surgery. Thanks again for being there in the cloud world of communication. :)
  • Sketa
    Sketa Member Posts: 18
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    Wish me luck!

  • Rowey
    Rowey Member Posts: 37
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    Very best wishes. Hope you are not waiting too long.
  • arpie
    arpie Member Posts: 7,733
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    All the best @Sketa .... we'll be thinking of you xx


  • Sketa
    Sketa Member Posts: 18
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    Back again.  So, the surgery had a few hiccups.  Recovery has been quite difficult and not as much movement and progress, even though I did not have nodes removed.  Two stints in emergency only days after being sent home early - in for clots and infection. Went down the MRI CT scans, body and brain stans, dyes for tumors and clots - collapsed veins and generally feeling like sh*&.  This week, I am again on medication for suspected osteomyelitis, of which I pray is not the case.  My moods have gone from, hey, I think I'm going to be okay, to worrying about whether or not things get worse.  I tell myself everyday - God will take care of me, I will mend and I don't have this.  I am just praying...
  • arpie
    arpie Member Posts: 7,733
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    xxx Thinking of you, @Sketa ....  Give the Helpline a call 1800 500 258 if you'd like to chat to someone xx
  • Blossom1961
    Blossom1961 Member Posts: 2,411
    edited September 2023
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    @Sketa I wrote on your post instead