I have all my notes from my first diagnosis and I'm considering getting the next lot. They are easy enough to apply for and you do have to pay. I'm one of those people who likes to know everything but I was still a bit shocked at some things on my notes that I wasn't aware of. It really depends on what you want to know.
At the moment I ask for any results reports to be printed off so I have my own copy and then I can google all the big medical words I don't know lol
If you want to know how to go about getting your notes just give me a shout.
Similarly to you I made the informed decision not to be told my prognosis. My BCN advised thinking carefully about asking about this and I decided not to ask and have not regretted this.
As regards all the other information I asked loads of questions at the time and I had hard copies of lots of the relevant information - scan results, blood tests results. pathology reports, letters from consutants to GP and equally have never regretted having this information as I feel it helped me to make decisions about how I dealt with things.
However, as others have hinted at above, once you've received and read information it can be hard to stomach and you can never "unknow" information.
If part of you is saying that you need to know some details it may be that now is the time to ask the questions. I was lucky I had a fantastic BCN who judged perfectly what I wanted/needed to know. BCNs and all the other healthcare professionals are there for you whether you were diagnosed 4 days ago or 4 years ago. Yes, you could ask for copies of reports, notes, letters etc. but I wondered if you'd considered asking for an appointment with one of the doctors (oncologist/surgeon) so that the details can be explained. I good BCN should facilitate this for you.
Please get support to do this if that's what you decide. Best wishes with whatever you decide.
If you cannot face seeing all of your notes you could ask for copies of the consultation letters sent to your gp.These tend to be a summary of treatment and may make easier reading.You can ask at gp's surgery for these and there will not be a charge( you may have to have along disscusion with receptionist if they are anything like the one at my surgery)
Personally I have always needed to know everything in detail, but as Dawn says it does not make easy reading to see it in black and white.
You have to decide what is best for you and going through them with bcn also a good idea.
Good luck with whatever you decide.
Its a difficult one. You are entitled to all of your medical records and don't have to give a reason why.
There is usually a charge (I have been told a maximum of £50)
I have currently applied for some of my notes relating to my reconstructive surgery. Its a long story but I have a lot of unanswered questions and am hoping this may help. I don't know if it will.
For you it depends on what you hope to achieve, will it help you to put it to rest or make you more upset?
As Dawn suggests maybe discuss with your bcn first, not that you need her permission but might help you in making that decision.
It did appear now Jennifer. I did ask for copies of my notes some 17 years after my first Dx with a long history of the disease and I was quite surprised to find it made difficult reading to see it all there in black and white. I think some hospitals will arrange for a bcn to go through them with you. Just be sure it is what want to do and don't be afraid to ask for a bcn if you want to either before or after you read them.
I was diagnosed and treated 4 years ago and at the time didn't ask many questions because I didn't feel I could cope with the answers. For example the GP asked if I wanted to know the prognosis but I said no.
Now however I am beginning to wonder about the details and am considering asking the hospital if I can have a look at my medical notes, especially the pathology report.
Part of me says I need to know, another part says to put it all behind me and forget about it.