Wrong information on grade of cancer and just found out my cancer is stage 3 not 1.

  • 3 replies
  • 23 subscribers
  • 571 views

I was diagnosed on 1/12/23  with grade 2 invasive ductal carcinoma, oestrogen receptor positive
8/8, progesterone receptor positive 8/ 8 and HER2 receptor positive in 2 areas of my left breast and thickening of 1 lymphnode. 

MRI and CT scan showed it had not spread.

On 20/12/23 when I met my Oncologist I asked the chemotherapy nurse what stage my cancer was. She said she did not know as it wasn't on my notes but assumed stage 1 as it hasn't spread and was only in one lymphnode.

2 weeks ago I noticed a letter on my NHS file from my Oncologist to my GP stating the cancer was grade 3 contradicting my diagnosis.

During a phone call with my onlonogy pharmacist last week I mentioned this and also queried the staging as i had jot neen told what stage it is. She said she could not see the staging anywhere on my notes. She told me she would speak to pathology about the staging and grading and send me an email this week to confirm.

Today I received an email to confirm it is Grade 2 not 3 but stage 3 due to the size of the cancer and the number of lymph nodes involved.

I replied asking if this is correct as I was told only 1 lymphnode was affected and the MRI and CT cans showed the cancer had been caught early/had not spread.

Please can anyone advise?  I'm really worried about this and losing faith in the medical team looking after me. I can't believe I wasn't told what stage my cancer was and there was no record of it on my file. I'malso not happy at finding out my cancer is more advanced than I'd been lead to believe by an email 2 months after diagnosis. Am I wrong in thinking stage 3 is a dangerous stage?

I've put a copy of the email sent from the oncology pharmacist to me today below:-

Dear X

I have confirmed with the pathologist you had 2 biopsies taken which both confirmed grade 2 IDCs (invasive ductal carcinoma). Apologies there was a typing mistake on your letter, I have now updated your record.
In Dr X absence I have spoken to another medical oncologist, Dr Y who has confirmed your cancer stage as stage 3 due to the size of the cancer and the number of lymph nodes involved.

 

  • Hi  

    It must be extremely distressing to be told lots of different things and then to have the worry of not knowing which information is correct.

    It might be worth speaking to the PALS (Patient Advice and Liaison Service) at your hospital, as part of their job is to help resolve problems when using the NHS.

    ((hugs))

    Community Champion Badge

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

  • Thank you for your reply and advice.

    I had my 2nd round of chemo on Wednesday and the nurses didn't know:-

    1. I was having a cold cap

    2. I was having steroids by IV

    3. I was having hormone treatment 

    4. I needed to be given injections to take home and to be shown how to use them

    They kept saying there was nothing on my notes.  Luckily I knew my treatment plan well and could articulate everything well and stood my ground and after some searching they found the information on my file that supported everything I'd told them. 

    My medical notes also say I had 20ml of Docetaxel on my first round of chemotherapy which is incorrect as I had anaphylaxis within the first 5/10 minutes and only had 0.4ml. Despite me telling them that's incorrect the response has been "that's what it says on your notes".

     Luckily my Macmillan nurse has been amazing and said she isn't happy with my experience and wants to have a meeting with me and my consultant about it next week. 

  • It's a good job you knew what was supposed to be happening  ! 

    I'm glad to hear you're having a meeting with the consultant about this catalogue of errors and I hope this all gets sorted once and for all.

    Community Champion Badge

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