Hello @Felixfelicis
I'm really sorry to hear you have become a member of The Club Nobody Ever Expects to Join .
I don't know what the current rules and guidance are around taking someone with you to your appointment but if possible, I would strongly advise taking a good friend/relative/partner with you to the appointment to take notes.I was diagnosed just over two years' ago and was extremely grateful to friends who came with me to appointments and sat and listened to the consultation and wrote it all down , leaving me free to listen and then ask questions.(As Covid progressed,I had to go on my own and that was much harder, however patient my oncologist was when I sat with a list of highlighted questions, as I discovered how hard it is to listen/ask questions/write down answers, all at the same time!) I quickly learned we don't remember everything we're told -I think I read somewhere that studies show we immediately forget almost half of what we're told in a medical appointment -and it really helped to be able to go over everything afterwards and find that my friends had picked up on something I hadn't and vice versa. It was also very useful to have a copy of the notes I could send to friends as you will find yourself explaining your diagnosis and proposed treatment again and again when you really don't have the energy for it. If you can't take anyone, it's worth checking beforehand to see if you are allowed to record the meeting-some hospitals may allow it.
Hopefully, you should also either meet or be given the contact detail of your specialist breast care nurse. Use them!They are very used to being asked lots of questions, and although I never actually met mine face-to-face, I found her great whenever I asked her anything .Her response was always "try me" and I knew she sat in on all the multi disciplinary meetings where my treatment plan had been discussed so she knew why something had been decided and was able to explain it .I am someone who generally prefers to absorb information, have time to think it over and analyse it and then ask questions and it helped to know I could phone her after consultations when more questions had occurred to me .
Please also be prepared for the fact that treatment plans may change depending on the results of biopsies, surgery etc and what you might be told at the beginning may not be what actually happens .To give you an example, I was told after the first biopsy that my cancer was Grade 1, yet after surgery it was upgraded to Grade 2-which was not too major a change but it did involve a few tweaks to my treatment and some considerable anxiety until I discussed it with my BCN-I remember she actually said she wished patients were told to expect the unexpected at the beginning as results can change the overall plan.
As a fellow control freak, I can quite understand your concerns!I think I quickly had to learn this was one thing I had no control over and I was very fortunate I had faith in my team and had to accept they were the experts-which is not to say I didn't interrogate them! I could still control my life at a micro level at home and, to an extent ,at work, so my way of preparing for treatment was to cook frantically and fill the freezer , make lots of lists and keep busy-but it went against the grain. And be prepared for the fact your life is no longer your own-your diary will be filled with hospital appointments!-and each post seems to bring more dates. I also found it helpful to take each part of my treatment a stage at a time, and not look too far ahead-not easy for someone who generally had all her holiday dates organised a year ahead (This was pre Covid!)
There is a very good book which was recommended on this forum written by a GP and consultant breast cancer surgeon who have both had breast cancer, "The Complete Guide to Breast Cancer-How to Feel Empowered and Take Control" by Trisha Greenhalgh and Liz O'Riordan and I really wish I had read it before I started treatment.It is written very logically and sensibly with lots of good information-the edition I have is dated 2018, so one or two treatments may have changed a little but it's a very clear guide.
DON'T READ DR GOOGLE! And there are lots of lovely ladies here who will help you too.
Lots of luck for your appointment and for what is to come 🤗
