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Legally obliged to inform me of breast cancer!?

Niff84
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Hi all

First time ever posting in a forum of any kind, but I just feel I need to talk to people who are going through this journey. I'm 36 and in the past have had cysts in my breast drained. I went to the docs 4 weeks ago with what I believed to be another one. Went through the same procedures, referred to the breast clinic where they tried to drain again but this time nothing was coming out. The consultant said just to be sure she would take some biopsies but from looking at the ultrasound she didn't think I had anything to worry about.

Fast forward to my results appointment - after the pleasantries had been exchanged the actual sentence out of the doctors mouth was I'm afraid I'm legally obliged to inform you that we have found cancer cells present. Well I'm guessing I'm not alone in saying that my brain just shut off for a few minutes after hearing this, but when I started functioning again he was talking about they could not be 100% that the results did belong to me!? Something further was said about there had been checks made on the other patients who visited the breast clinic the same day and they couldn't see that the biopsy tests could belong to anyone else - but to be sure I was referred back the next morning for further biopsies/x-ray/mammogram.

Its now been a week and have not heard anything. I'm finding things hard now as I haven't told anyone except my parents on the slim hope that somehow it's wrong, but mainly because until it is confirmed I have been told nothing about treatment moving forward. I know family and friends will be there to support me but at the moment I won't have any answers the their questions.

Has anyone ever had something like this happen to them? I just feel so angry and upset. I know that they are just preparing me for the worst, but I'm struggling with my parents trying to be positive that there could be a slim chance they have got it all wrong.

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    Hi, 

     welcome to the forum x

    So so sorry your going through this, it's not nice feeling being told that news.I don't know what's going on at breast clinics.

    My story so far....attended clinic early Dec 2020. Lump on collarbone, under arm and areola. 

    1st vist...all tests and ONLY needle biopsy around nipple.

    Outcome...he wasn't worried about them.said he would write with results if they were needing further investigation...that was it. I heard nothing, neither did my gp , so ....6 days less than 9 month later.....

    I recieved a call end August and which was said " hi, how are you? Is the lump still there? We mislaid your paperwork and realised you haven't been seen back in clinic? I answered yes, they are all still there.

    They asked me to go in the morning after call.

    I am so sorry but this is how it continues....I saw consultant...he wasn't bothered about collarbone or under arm...he did another scan around nipple...then said....it has grown since I saw you, and this looks suspicious.  I said what do you mean? He said its 80-20 it could be a small cancer.!

    I said myself and my gp hadn't heard from you,  so thought all was good?

    He said he be back in a min....he asked me to have covid test, isolate for 3 days then as URGENT case...had me in theatre to have excisional biopsy on/around areola. 

    On return home I called my gp and asked if they had any correspondence from breast clinic...they said NO NOTHING. 

    2 weeks later....Friday just gone 17th Sept....I sat down with my friend thinking all is good......NOT!

    I was diagnosed with invasive ductal carcinoma grade 2...ER positive and Her2 Negative....the biopsy taken with extra tissue ( margin ) was all cancer!!!! I froze, I screamed , I cried xxx my friend didn't speak.

    I have been crying every day....how could they???? If they got in touch weeks after needle in Dec....they could of removed it...and I be cancer free....now its spread to beast tissue. 

    I go tomorrow afternoon to have further mammogram and ultrasound then see consultant. 

    They have MDT meeting Thursday...23rd Sept....

    I will get a plan on that day....all I think is....how am I going to cope....why was I just left...why want my gp informed? ....all sorted are going through my head...am scared.

    I really hope they were not your results x I wish you all the very best xx my heart goes out to you.

    I will keep you updated on my outcome xx big   hugs xx

    Heart  

  • Offline in reply to Twin33

    Hi to you both. 
    What a right pickle your both in.

    Niff - I would be hassling them about results. You can ask advice from Hospital patient advice laison team (PALS) to maybe investigate how they mix up such inportant information.

    Twin - I've also got grade 2 invasive Ductal breast cancer. -I've had a lumpectomy and sentinal nodes removed just last week and awaiting results. Mines Estrogen positive and her negative too- I defo need radiotherapy and tamoxifen for 5years. 
    In my hospital they do clinic letters the same day and ive had regular correspondence. I do think your hospital seem to want to fix the issue , getting you in urgently, but I would maybe seek legal advice if you feel strongly/ I think I would.
    The waiting game is the worst bit and to think you've both got more waiting to do is awful.

    Try and keep positive

    please keep us updated in your progress. X

    much love Efffie xxx

  • Offline in reply to Efffie

    Thank you both for taking the time to reply. Reading through the various posts and messages of support on this site has definitely given me a lift over the past few days.

    Twin my heart goes out to you too and I will be thinking of you tomorrow - please let us know how you get on. 

    I have my consultation on Friday so will know one way or another. The waiting is really hard but come the weekend we will both have a plan to tackle this. And like Effie has said we just need to stay positive.

    Much love xxx

  • Offline in reply to Twin33

    Twin- Thinking about you tonight and More so tomorrow- hope you manage to get some slee tonight.

    Have a list of questions? Written down so you don't forget any bits. Take someone with you too as they often catch things that you miss.

    Keeping things crossed x

    Niff-Have you heard anymore info ?? Next appointment ?? Result date ?? Hassle them

     

    much love Efffie xx

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