Left stranded by breast service again

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Hi everyone, totally beside myself.

Have had a terrible experience of care so far , having had to wait 4 months from diagnosis to treatment in 2021. The cancer was found to be very aggressive post surgery and 2 wide lateral excisions were required. I had little lumps in scar tissue which were checked by BCN at beginning of year but were recently checked again at my request by consultant and I have probable recurrence.

I have been referred for mammography and US but i still haven't got a date and its not likely to be until the end of the month.

I am so desperate. I have had to be put on anti depressants. I have all the psychological support but it is actually proper physical treatment that I would prefer and actually need. From previous experience it will be too late if they ever get a diagnosis and the treatment obviously isn't working anyway.

I just don't know what to do.

  • So sorry to hear this I really get how difficult that not knowing and waiting is.. 

    My team were amazing so I don't know how hard it must be for you.. 

    There is something I think it is patient choice or something like that. Speak to your gp and ask if you can be referred to another hospital if that's possible and if they can see you sooner. 

    I'm the meantime keep posting for support and keep talking to friends and family they are your support. 

    I'again say sorry but keep hopeful and praying you get treatment soon.

  • Thank you so much for replying. You can't imagine how much that means to me at the moment.

    I'm afraid I have just given up and no longer have the strength to fight.

  • Please don't give up the fight is the only thing this horrid thing can't take from us. You can fight this think of something to focus on. Someone or something to fight for. There is always something. 

    You are not alone. Take care and sending hope and wishes 

  • Hi WMK

    Sorry to hear that you are struggling at the moment.  The waiting for tests and results is horrid I know.  If you feel up to it why not ring the Macmillan helpline on 0808 808 00 00 to talk to someone about how you are feeling.

    Hopefully you won't have to wait too much longer to be seen.  As Trishajanne said in the meantime keep posting on here for support, or even just a rant if you'd like.

    Wishing you the best of luck with your tests when you have them.

    Best wishes

    Daisy53

    Community Champion Badge

  • Thank you for taking the time to post Daisy 53 . I know everyone here has either gone through treatment or is currently having treatment and therefore have their own problems. I did try the helpline but the gentleman I spoke to was really less than helpful. I'm sure it must have been my fault.

    Thank you again to you and Trishjayne for replying. 

    Love , hugs and best wishes throughout all your treatments to you both. xx

  • Wmk please dont let that poor experience stop you from reaching out again we don't all hit it off with everyone. I really struggled with a counsellor but the next one I spoke with really helped and seemed to get it. Also check out if a local support group and meet someone in person for support 

    Hugs and reach out to me any time 

  • So sorry it really seems a post code lottery. Don't give up ask your GP if they can help you. Keep fighting and try to stay strong big hugs Heart️

  • Hi WMK, sorry to hear you have been let down again by the service. I believe there is supposed to be a 2 week time scale in order to be seen once a gp refs you. It might be worth ringing the gp to ask where they have referred you too and start chasing them direct. Whilst you shouldn’t have to be the one to do this sometimes things do get delayed or records missed. Your appointment could be in the post but that has been dreadful so by chasing the department that does the mammogram/ultrasound direct hopefully they will be able to get you a fast appointment or confirm if one has already been made but you just haven’t received the letter because of the post. Please don’t give up, your life is worth so much more. 
    Sending you lots of hugs from cuffcake x x x x x

  • I have to agree with the other replies especially @cuffcake2000 - there is a '2 week time scale' (I can't think of the actual name they call it), it might be 'slightly' slower due to the pandemic - however, you need to be your own boss with this - most will sit back and wait for the Doctors appointments, scan dates, etc - however, with the amount of anxiety you have you or someone close to you needs to chase this for you (or you chase as someone else - chasing on behalf of you).

    A couple of thoughts

    Contact your Doctor - say about the 2 week referral and now all this waiting.
    Contact the Consultant/Surgeons secretary and ask for urgent referral for mammogram and ultra sound
    Enquire if need be the cost of seeing Consultant/Surgeon private for them to push you up the queue - it's not right, but happens all the time.
    Enquire about costs and appointment times for having mammogram and ultra sound private.

    This is also a thought, the hospital you had treatment at should have a 'Breast Clinic' - what about - phoning or just turning up there and asking for an appointment or if they have any cancellations - also, say you are prepared to phone every day to ask for cancellation appointment.

    Finally, contact Macmillan nurse via here and explain everything to them and ask them to contact Hospital/Surgeon/Consutant on your behalf.

    It's not fair - we all understand how much the waiting effects both our physical and mental health.

    Also, drop in to the AWAKE thread - I'll put a link below, its where we all hang out moaning, laughing, crying, helping etc any time night or day ..... saying this the last few days the thread has been quiet.

    https://community.macmillan.org.uk/cancer_types/breast-cancer-forum/f/general/128753/awake/1901473

    I'm hoping this makes sense - only my mind says one thing and my fingers type whatever they like x
  • Thank you cuffcake.

    I have actually been referred by a consultant for this and although my GPs are very supportive there is little they can do to push the referral forward. It has been a bit of a battle throughout, not helped by covid, but I think in some instances, covid has been used as a bit of an excuse.

    I will keep asking questions!

    Take care