Lobular breast cancer just diagnosed

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  • Cindi
    Cindi Member Posts: 137
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    Thanks HelenlovesSnoopy, I'll have a look.
    Thanks  Afraser & iserbrown for your advise, I'll do that, I should have asked his opinion.
    I'll definitely go into it more with my specialist  :)

  • Cindi
    Cindi Member Posts: 137
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    Yes, you're right @arpi, I'll just go on whatever I'm put on and see how I go:smile:

    When I'm allowed again to go back to my gym and do exercise, that will help with sides probably.

    I still am very swollen on the side I had the bleed and very bruised, the other side is healing up well.
    The pain though is quite bad by the evening and I still have to take pain meds or I wouldn't be able to sleep.
    It feels sometimes like my breasts are still there , especially nipples and the burning pain is bad.

    It's 2 weeks since surgery, I hope it's ok to still have pain meds?
     I would probably be healed enough not to if I hadn't got stuck into vacuuming when I'd got home from hospital. :s silly me.

    I wonder if I should contact my breast care nurse, I don't know if it's normal to still get so much pain?

    Sorry to moan, I know there's many out there going through a lot worse, we all have to try to be stong.
    x
  • arpie
    arpie Member Posts: 7,801
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    When do you see your surgeon again @Cindi?   

    If you are in pain, keep taking the meds - try not to let the pain 'break thru' by continuing taking them at set times so they overlap - otherwise it takes longer to get it under control .....   

    I'd definitely mention it to your breast care nurse .... are they able to drop by & check you out?

    Make haste slowly re the exercise - you've seen what it 'can do' unfortunately :(  I am guessing that IT has been the reason for the continued pain at this point in time ....  but it would be reassuring to have your BC Nurse check you out, for sure.

    take care xx
  • Cindi
    Cindi Member Posts: 137
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    Thanks Arpie, I'll ring my nurse later, but don't think she would drop by, I'll see what she says.
    Thank you for your advise, and I wont go into exercise quickly, I'll do it gradually as you sugest :)
    x
  • Cindi
    Cindi Member Posts: 137
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    Well I rang my nurse and had to go straight in to see her at The Mater Hospital where she took out 75ml of blood with a syringe from my chest!

    I've definitely learned a lesson to "take it easy" !!

    That was on Thursday, now Saturday, it seems to have settled down a lot, not as swollen and dark coloured, thank goodness. Hope tonight it's not so burning with pain.

    I'm also suffering from stopping the HRT's I was on, with hot flushes and I get really annoying "restless legs" in bed at night.

    Has anyone else had this? and suggestions how to stop that? I can put up with the hot flushes but the restless legs drives me crazy.

    The nurses only suggested Magnesium tabs but it's not really helping  :|

    If anyone knows a magical cure I'd be so grateful!

    x

  • Blossom1961
    Blossom1961 Member Posts: 2,430
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    I also now get the restless legs. I find that going for short walks throughout the day reduces the occurance and severity. Magnesium did nothing for me either.
  • Cindi
    Cindi Member Posts: 137
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    Oh thank you @Blossom1961, I'll take your advise, I'll do some walking. :)
  • arpie
    arpie Member Posts: 7,801
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    SO glad you saw your nurse ..... and hopefully the problem is solved ..... just keep in mind, IF IN DOUBT, GET CHECKED!!  Don't put off seeing someone (or at least asking someone) .... 

    Restless legs are a pain!  They wake me up sometimes!  Magnesium is supposed to work ..... I find it is worse if I am too hot too! So right now, we are fluctuating with cooler days & hot days & I have a rug on the bed as I'd swapped to a lighter quilt cover & it is happening again  ..... grrrr   

    Remember .... gentle walking!  ;) 

    Check out this post re hot flushes ....
    https://onlinenetwork.bcna.org.au/discussion/comment/217534#Comment_217534

    take care xx
  • Cindi
    Cindi Member Posts: 137
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    Thanks Arpie, very helpful :)
  • Cindi
    Cindi Member Posts: 137
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    I saw my surgeon a few days ago, & he took more blood from where it's swollen, then gave me a script for Exemestane ( Aromasin)
     
    I asked again how he's going to check that I stay cancer free but he seemed very blasé about it now, saying he didn't think it'd be necessary ?!
     I thought before he had mentioned CT scans and ultra sounds, but now maybe nothing, I would feel happier knowing I could have yearly checks somehow.

    I'm going to start the hormone blocker tonight with dinner. Hope it agrees with me. At least that helps to stop the cancer coming back.

    The pain along the scar line of my double mastectomy is still getting quite sore in the night, & under my arms, so I take a pain killer at night, even though it's been three weeks now, so surely it should be better by now?
    Anyway, hope everyone's going as well as they can,

    Take care x
  • HelenlovesSnoopy
    HelenlovesSnoopy Member Posts: 94
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    Hi Cindi!  I think I have 'chemo brain' and I was already struggling to remember how I felt 3 weeks post op!  But I looked up my little book and remember that I had my post op appointment 2 weeks after and was considered to be going pretty well then.  That's about all I can tell you!  It did take me a while to be able to sleep on my side.

    I do hope your soreness goes soon.  Thinking of you  <3. And I hope that the hormone blocker agrees with you ok.  I think the general trend of discussion was that it's trial and error to see which one works best for you?


  • arpie
    arpie Member Posts: 7,801
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    Gosh, I hope your pain along that scar line stops soon, @Cindi xx

    I take my AIs at night too and it works better for me, than in the morning - I reckon it 'does its stuff' whilst we are asleep .....  Keep as active as you can once you start it xx  and just keep a note of anything that may seem 'odd' ... hopefully none!  Some fly thru the AIs!

    take care
  • Afraser
    Afraser Member Posts: 4,392
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    I had six monthly checks at first with my oncologist and surgeon, staggered so I saw one of them every three months. Then after a couple of years, yearly (so one every six months). Practices vary but it seems reasonable to ask about follow up checks. Best wishes. 
  • Cindi
    Cindi Member Posts: 137
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    @HelenlovesSnoopy, thanks so much , you're such a caring soul. xx

    @arpie, thanks for that, I'm sure it'll heal soon, I've just got to not do so much, which is hard for me :(
    and I'm also taking the pills at night, a bit tired today. Thanks for the advise xx

    @Afraser, that's interesting about getting checked regularly, your surgeon sounds good, mine is a bit too laid back about everything I think.
    I'm going to see my GP next week and I'll talk to her about it, because I definitely would feel happier having checks like you did. At least for peace of mind. Thanks for your input xx
  • Cindi
    Cindi Member Posts: 137
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    Hi,
     I've been going a lot better, just some pain in night along scar and chest, but getting less and less, but last night was horrible.

    I've been cutting down pain meds but last night I had such bad night sweats and restless legs AND a sort of restless leg syndrome throughout my WHOLE  ENTIRE body!!

    I don't know if it's a side of the Hormone Blocker ? but it's almost unbearable.

    I had to end up having a pain killer to calm my body as I was so uncomfortable, does anybody at all have any idea how to help this situation? has anyone else had this weird sensation?
    Any input would be greatly appreciated as I have an appointment with my GP this afternoon and I can get a script for anything anyone can suggest?

    x