Hello All. I have noticed that everyone talks about the grades and stages of their cancer, but I have never been told what grade or stage my cancer is. Is this because I had chemo before surgery and this shrank the tumour massively? All I know is it was 6cm in diameter and had also spread to my lymph nodes, it was HER2 positive and non hormone receptive (although I had another 1cm hormone receptive tumour in the same location). I am always wondering what this means for my recurrence/survival chances. I asked my oncologist but he is always very vague. Has anyone had a similar experience?
At the time of my diagnosis, my breast surgeon, breast care nurse and oncologist were very open about everything. At first I was given a provisional Grade and Stage and size of the tumour after my mammogram, ultra-sound and needle biopsy. However, I was told these results could change after surgery when the pathologist inspected the tumour.
You can have a copy of your pathology report which gives all the detailed information about your tumour including the grade and stage. You do have to ask because some ladies do not want to know the finer details given in the pathology report. Other ladies like me, need to know everything and see it in black and white.
There is a computer tool called NHS Predict and this gives you survival rates when you key in certain information about yourself, age, type of BC, size of tumour etc.
My breast care nurse gave me a copy when I asked her but I have also used it myself online. I will try and find the link and post it.
My oncologist had already discussed my survival diagnosis but I wanted a paper copy.
Do you have access to your Breast Care Nurse? Mine was extremely helpful in getting me copies of what I wanted.
Hi Amero. Hospital policies vary enormously regarding what staff can give you, copy you in on, etc, I’ve had 5 involved so far and requested medical records from three hospital trusts! I learned yesterday that, at my treating hospital, I can request to be copied in on letters. This is an opt-in, but it was never mentioned before, so make sure you ask the question!
Whatever the policy for what they will give you informally, you have the absolute right to request a copy of your health records (including images, scans, etc) under the Data Protection Act 1998. Check your hospital’s website for the email address or phone number of the relevant department (in some it’s a department in it’s own right. In others, it’s part of the legal department…). There is a cost involved and they have up to 40 days to provide the info after you have requested it, so if your BCN or consultant will give you copies that is the quickest and easiest option. Good luck, Tat x