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Still waiting on results 8 weeks later

AS1995
  • 8 replies
  • 35 subscribers
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Hi, 

is this normal or have I fallen through the net? 

on 16th August I was referred to the breast clinic after I had found a lump on my right upper inner quarter. 

On 25th August I was seen in the breast clinic and a biopsy was taken after an ultrasound. 

I then received a letter 3 weeks after my biopsy to say I had a 5cm  indeterminate Mass graded a u3/u4 and the mass had a necrotic centre the letter then also went on to say it would be discussed at an mdt meeting and can take 4 weeks. 

I have had no information since this, I have been booked in for a follow up on 17th October (2 months after I was seen by my GP) and have been told to expect to be there all morning/afternoon. 

the day after this appointment came through I had a phone call from another hospital asking me to come for an mri, but didn’t say why, I attended this and was still given no information. A week later I was then called to attend a mammogram, again no further information given, the radiologist doing the mammogram didn’t even know I had a lump present or that I’d had a biopsy. 

I have called the breast care nurses to ask for advise on why I would need an mri and mammogram after a biopsy has been taken. The nurse said there is nothing on my file about the results of the biopsy and nothing about having other tests so she couldn’t tell me anything.  I am 29 years old so was told a mammogram wouldn’t be beneficial when I have the biopsy. 

I have waited patiently for 8 weeks and have just been sent appointments for tests with no communication or information as to why, is this normal or has someone messed up somewhere.

I still have a further 2 weeks to wait before I see someone. But can not keep doing this. I have lost 2 stone in the last 8 weeks due to not being able to eat constantly being sick due to anxiety. 
everyone I speak to gives me empty promises, PALS promised me someone would be in touch but that was 2 weeks ago and still nothing! 

I don’t know what to do anymore and the next 2 weeks feels like it’s going to never end! 

who can I speak to, to get some clarity? 

  • Hello AS1995

    I am sorry to hear of the stress you’re going through while waiting to hear what’s going on with you. When I found out there was “something “ going on with me I was left adrift too but one phone call to my GP changed this! My suggestion would be to contact your GP asap and ask to see them straight away. After my phone call to my GP she got a specialist nurse to call me let me know what was happening and put my mind at ease x One thing I learned from my experience is you have to be your own advocate! Please remember the more everybody knows before making decisions the better so it’s good there gathering all information with scans tests etc the more they know the more they can tell you x 

    on this site there is a dedicated breast cancer forum which may be really helpful for you to join as there experiences could really help you x best of luck with everything x x 

  • in reply to Hnickkie

    Hi Hnickkie. 

    thanks for your reply, firstly I hope everything  was/is okay with you now? 

    I have contacted my GP to see if there is anything and he said he has not been sent anything over or heard anything! I feel like everything is on lockdown for everyone but my consultant until I see him on the 17th October.

    I can handle and get my head around having breast cancer and I can handle it being something else which needs looking at. What I can’t handle is the wait in between! 
    im losing so much weight and constantly being sick, which then gives me more anxiety because I don’t know if im losing weight due to the unknown or because its a symptom of cancer! It’s never ending! 

    no one wants to speak to me, i understand im just another number to the nhs until they see me, but I do wonder how it would be if the shoe was on the other foot and it was themselves or their daughter waiting! 

  • in reply to AS1995

    Hi AS1995

    please don’t think of yourself as another number, you are a person! Please believe me when I say I felt exactly the same , the waiting is nerve wracking. Have you phoned the macmillan helpline yet? I did and it was an amazing help, someone to talk to and alleviate your fears. The call handler was patient (a few years were shed) and they were fabulous at helping me with the next step in this pretty shitty journey! Sometimes the listening ear of a stranger can be of amazing help ! Or do you have a close friend , work colleague or family member to talk with? If not please call MacMillan as one thing I can guarantee is they will not ignore you or not communicate with you! That’s absolutely guaranteed x 

    as for me (thank you for asking) I am doing well and stable , please feel free to read my profile, the beginning of all this is the hardest part but as soon as the ball gets rolling and you have an idea of what’s happening what’s going to happen the plans put in place you’ll feel much more at ease x please message me anytime with any questions you have or even just a rant or moan :o) x 

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    It sounds like you've had a long and difficult journey and I know how distressing it is when you're waiting for results.

    As the online community is divided into different support forums I'm going to recommend that you join the breast cancer forum which is a great place to ask questions and share experiences with others.

    To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    If you have any problems negotiating the community please drop me a reply and I'll be pleased to help.

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • in reply to Hnickkie

    Hey, 

    I have received this today, my follow up appt isn’t until Monday (it’s been moved) so still haven’t seen anyone yet. Got this today, I’m presuming I have cancer and I will be told this in person on Monday 

  • in reply to AS1995

    Hi AS1995

    first of all I hope your doing ok x have you phoned MacMillan yet for a chat? I’m sorry your appointment had been moved until another week, it’s so frustrating but hang on in there! Anywho a quick google and Dr Herring is a consultant oncologist at the cancer centre and from reading reviews she seems to be lovely! As to the question do you have cancer unfortunately and as frustrating as it is,you won’t know until you attend your appointment at the clinic BUT rest assured with all the tests,scans,biopsies etc they WILL have answers for you x I know the next week will seem forever but please take care of yourself,talk to someone on the breast cancer forum? Phone MacMillan? Or just rant and rave here lol :o) x please know the answers are coming, plans will be put into place and you will know your path going forward x x 

  • in reply to Hnickkie

    Diagnosis confirmed! 

    Triple negative stage 2, grade 3 Brest cancer.. only taken them 8 weeks! 


    not really sure how I feel, I’m okay with it being cancer, well I thought I would be, but now it’s in black and white, I’m just numb, been doing the rounds but when will it sink in?

    Chemo starts in 4 weeks, for 9 weeks, and surgery in January.

    I’m 29, just had to cancel my holiday in January for my 30th birthday.. it’s just Sh*t! When does it all sink in? 

  • in reply to AS1995

    Hello AS1995

    I’m sorry to hear of your diagnosis but I’m pleased you now have confirmation of what’s going on x to answer your question of when does it all sink in , to be honest sometimes it never does fully! I still sometimes have to say to myself “ I have cancer “ and “ I have incurable cancer “ more so now I’m through first line treatment of chemotherapy and surgery and on my maintenance treatment. 
    with regards to your up coming treatment my best advice is prepare prepare prepare! Read as much as you can on your cancer and treatment ( obviously from reliable sources) and in the breast forum ask others about their experience. One thing to remember is no one’s journey is the same, no one has your DNA so how you respond is an unknown could be the same could be better could be ??? It’s an unknown x prepare yourself physically and emotionally, prepare the house cleaning, shopping, laundry and dare I say Christmas lol x get ready for a bumpy ride on a crappy train journey that is cancer, sometimes you’ll just wanna get off the train and sometimes you’ll ask yourself why the hell and I’m on this track! But just keep on keeping on lovely x 

    Get as many people on board to help you from family and friends , your nurses and team rally the troops and prepare for a fight x Make small simple goals like one chemotherapy treatment at a time, ohh Christmas then ohhh new year then ohhh I’m gonna turn 30! It’s all about the small wins x I wish you the best of luck with everything and please message me whenever you like if you need anything x 

    love Nickkie x x 

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