New here and scared. Why no surgery date?

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Ive not posted before but hoping for some advice. Been for my biopsy result appt and it was confirmed as cancer. One lump i could feel and another smaller one found on ultrasound. One node involved. At the initial appointment 2 weeks ago i was so terrorized they found 2 bits i asked the consultant for a CT scan which she wasnt suggesting at that time. She didnt seem to phased as neither bits came to more than 5cms altogether. Fast forward to this weeks results appointment with another consultant and although my cancer grade came back as 1 the CT scan has picked up other inconclusive things including womb thickening?? and a query in bones. Terrified is an understatement. Theres no talk of a masectomy until ive had further tests. Has anyone else experienced this? Not sleeping and feel like im in fight or flight the whole time.  Why dont they schedule me in for they think its spread already? I have to have a gynae meeting before they do anything else. And the bone thing terrifys me.

  • Hey Nelly, I'm new here too. Just joined and just diagnosed. Waiting for appointments is the worst. I don't have any advise for you. But I hear you. It feels so urgent to us, doesn't it? It's like I can feel mine growing as each day I feel more pain then the day before while I wait for appointments. Where as before, when I noticed the lump and went to the doctor, I didn't have any pain.

    My only suggestion is to take deep breaths. Worry makes our body feel worse. It sounds like they are trying to make sure everything is as it should be and checking everything to make sure they have the whole picture of your health. But keep on your doctors to give you answers.

    As far as sleeping goes, I have to put on an audio book (a dull one so that doesn't also keep me awake) just to distract my mind.

    Sending you lots of good vibes.

  • Thank you so much for replying and sorry we seem to be in the same boat diagnosis wise. I am trying relaxation techniques but failing. And i too have all aches and pains where i didnt before. Wide awake at this time is not helping!  Wishing answers for us both and returning those good vibes to you too

  • Dearest  and  ....

    First welcome to the Club that none of us wanted to join!  Now you are here you will find help, friendship, guidance, comfort to mention just a few.  Most of the time the night time seems the worst - you will see this by looking for the thread called 'AWAKE' - this was started 7 years ago for this very reason - most of us at some time have trouble with sleeping (I will link the 'AWAKE' thread at the bottom - most of us go there night and day, for advice, a shoulder to lean on, an ear to listen, to speak to others that have or are going through this - we even find laughter ..... but most of all 'we all understand' as we have walked in various shoes' - where most family and friends just don't understand the thoughts or feelings that just turn up out the blue - going from okay to completely wanted to have a melt down - it's all normal.

    I can't fully answer 'why you haven't been scheduled for surgery yet' ...... 

    What I will say 'if there was any risks, they would most certainly get you in as soon as possible'.  

    You are at your worst stage - the waiting is the worse.  Once they have got everything together they will get a plan of action together and you will be on the 'rollercoaster ride' again one that none of us bought tickets for - we just got pushed on the ride.

    Please try hard 'not to worry' as everything is now in hand.  Whilst waiting download (I can't think what they are called now) App's like Calm or Headspace (I think) - these have sections to 'fall asleep to' or when you have a panicky moment they have some 'count down breathing exercises' that will help you.

    The start of this journey is terrible - I can remember going to look for a bra for after surgery, first I didn't want to get out the car, then when I was out walking towards the shop I felt like I was in slow motion and all I could see what people all getting on with their life - I wanted to shout out 'can't you see I have 'c' (I have a problem even saying the word.... still).  (I didn't tell friends and only a few of my family - because I didn't want to become 'that' first and me second).  We all behave and react different - and all ways are right - there is no wrong, we handle it how we handle it.

    Both of you look at the 'AWAKE' thread and any questions or problems post them in there and I'm sure the ladies will try and help you - the only condition is ..... you have to be slightly mad - as we are know as 'Fruit Loops'.

    Seriously though, please try hard to know that treatment has come on so far and once you get your treatment plan you honestly will feel so much calmer.

    Heres the link to the AWAKE thread.....

    Sending gently hugs to you both xxx

    I'm hoping this makes sense - only my mind says one thing and my fingers type whatever they like x
  • Thank you so much for your response it really means alot. Not sleeping is definitely not helping my mental health. I will look at the other thread and try some of the suggested apps. 

    Night time is hard but finding it difficult to focus on day to day too. Just need progress.

  • Just know now that you have found us - you aren't alone.  

    We will all help in whatever way we can - just know you have people here that truly understand and some may of even walked the same or similar steps as you will.

    The start of this journey is intense - you won't focus on anything, you will be up and down and within seconds of each other, just hearing 'that' word will of set you mind off all over the place.... once you know the treatment plan you have something to work to - plus you may feel like you have no end of appointments - the main thing is you are moving forward.


    I'm hoping this makes sense - only my mind says one thing and my fingers type whatever they like x
  • Hi NellyH

    Welcome to the forum and I am sorry to hear that you have been diagnosed with breast cancer and that your CT Scan has showed up other issues.  The chances are they don't want to schedule surgery until they have all the information they need to treat you so they can get you better.

    Wishing you the best of luck with the further tests.

    Best wishes


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  • Thank you for responding. I know everyone must feel the same initially.. until this point in my life ive been relatively healthy.. this has knocked me for 6. My mind is in overdrive thinking if i left it too long to go to the doctors. Just want to get sorted asap. Thank you for being there

  • Thanks Daisy

    Its just mow i have to wait for another MDT and then likely more tests. Feel helpless whilst i wait. Thank you for the kind means alot. Ive started on anastrozole after dropping HRT and now getting muscle aches.. im hoping thats normal? 

  • Hi NellyH

    It's not unusual to get muscle aches while on anastrozole.  If they get too much for you contact your breast cancer nurse and they should be able to suggest what painkiller to take.  I'm on anastrozole as well and I haven't had any problems with them.

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  • Hi Nelly , so sorry you are here . Muscle aches are normal . Keep moving . My shoulders creaj when I raise them Cry, I’m like the tin man in wizard of oz . 
    I was told my surgery would be about 7 weeks after diagnosis and that was without further tests . Nothing moved quickly as they have to have results for MDT . It’s got to be discussed and a treatment plan agreed . They usually happen once a week .,
    It’s awful not knowing . Wish we could magic it away for you x