"Nature the tumour and the effective treatment needed"

  I was diagnosed with breast cancer at the end of December 2017. I had an operation in early February to remove what the consultant said was a very small invasive tumour. On my check up with the consultant I was told that everything was fine and then I would then go for radiotherapy and endocrine drugs..

But the follow-up letter to my GP spoke about DCIS as well, which I needed to look up. I then met a radiotherapy consultant who mentioned that the anterior margin of my tumour was only 0. 5 mm. This came as a shock as it had not been mentioned before. I looked this up again and discovered that the NICE recommended margin was at least 1 mm. It took me a long time to get another appointment with my consultant and by that stage I had begun radiotherapy.   At the same time it also took me a long time to get my pathology report, which I had asked for at my first meeting after the operation. I had to ask four times before it was produced. I then saw that the margin of 0. 5 mm appeared to apply to DCIS and not the tumour itself. So I asked for a follow-up meeting with my consultant to explain the report.

I found their explanation hard to follow But they did offer to take off additional skin if that would reassure me. This is when I began to wonder whether I was getting the best treatment to prevent recurrence whether that alter the world tentatives.

When I got the resulting follow-up letter to my GP I saw that the invasive cancer was sitting in the bed of DCIS. Again this was new information. I am left frustrated that this information is coming out in stages and I don’t feel I’ve had an adequate opportunity to discuss whether in fact purely radiotherapy and endocrine treatment is the best treatment to prevent recurrence.

My case was discussed by the MDT and I am wondering whether I can get access to the notes of that discussion to see whether alternatives were discussed and the reasons why the particular line of treatment room that was recommended to me was chosen.