8 week wait since biopsy!

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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 week 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 week feels like it’s going to never end! 

  • Hi, you poor soul, I feel so sorry that you are being put through this. I may not have the right answer for you, but if this had happened to me, I would be waiting at my GP surgery first thing tomorrow and refuse to leave until he had sorted this out. And believe me, a GP COULD find out what is happening. If I had to say I was feeling suicidal, I would absolutely say that, because I’m sure that in your position, I would definitely be having very dark thoughts. I don’t even think it is right that you were given your biopsy results by letter. This should have been delivered in person by your breast surgeon. Sometimes the mdt meeting can take a while, but as a guide, I was seen for 1st visit on 3rd Nov, had biopsy, and went back on 16th for results and details of the mdt planning meeting. At that meeting I was given a surgery date of 20th Dec. I know there are differences in various parts of the country but now is the time to fight. You deserve it

  • Hi  , I agree with  , it’s not reasonable to keep you waiting so long with such inadequate information and no explanations. And even though your appointment is now within a week, I’d still be inclined to get on to your GP on Monday to try to get them to pursue it. What an agonising time for you. I really hope the seeming lack of urgency means that your lump turns out to be benign. You could phone the helpline here at least to discuss what you know with someone who may be able to interpret some of the very limited information that you have. 
    Keep posting here and let us know how you are getting on. And can you take someone with you to your appointment as it can be difficult to take it all in? Love and hugs, HFxx 

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • hey HappyFeet1, 

    thanks for your reply, my appt has been moved to Monday now but I have today received this appointment  I havent seen or spoken to anyone… so guessing I have cancer and will be told this on Monday? 

  • Hi  , I’m glad you now have an appointment on Monday, but this additional appointment arriving out of the blue is an extraordinary way of dealing with a potential cancer diagnosis. I hope you get a decent amount of information about your possible diagnosis on Monday, will be thinking of you. They really need to look at their organisation and communication as it’s really not been handled well at all, I do feel for you. However, things are now moving forward and that’s good in every way. Lots of love and a big virtual hug, HFxx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • What an abysmal letter to send to someone who has not yet received a diagnosis. At some point in the future, I would be taking this up with hospital management ( or mismanagement! ). But for now, you need to keep a level head and perhaps do what Happyfeet suggests, phone the MacMillan helpline and speak to someone who may be able to help, if only to listen. Hope you get the answers you need on Monday. Let us know how you go on.