I agree with all of the above. There is no one person who takes any 'ownership' of you and your situation. I'm was finishing off my radiation therapy and trying to figure out who would give me the Tamoxifen details/prescription. Was it my GP, the surgeon or the Radiation Oncologist (I never saw a Medical Oncologist as didn't have Chemo).
However through this all, and from the very beginning, another close friend who had also gone through early BC provided me with the Book 'Breast Cancer: Taking Control' by John Boyages. It gives so much information about just about everything to do with BC, the issues, choices, terms, reports, pathology, options, etc. For someone who likes to be fully 'armed' with information, I found this book to be fantastic. It allowed me to see I didn't just have to go with the Surgeon recommended by my GP. I instead saw 2 surgeons and went armed with many questions, which allowed me to then choose who I felt was best for me.
I'm now trying to decide on whether to go on Tamoxifen or not. Once again, which medical profession to I speak with? Who can give me the best information and stats for MY particular situation to help me make, what has to be, my decision? I'm seeing a Breast Care nurse tomorrow, so it will be interesting to see how that goes.
Even with all the apparent knowledge I thought I had, I was still unaware of some of the challenges around a Mastectomy (see article 'The 5 things they don't tell you about a Mastectomy').
While we all have to rely on the skill and knowledge of our respective medical teams, ultimately these are our decisions. But we have to have the knowledge to know what questions to ask. Take Control. Be Informed. Question, question, question.
All of this can be hard when you've been blindsided by a BC diagnosis (trust me, I get that!), so have supportive friends and family with you at all appointments. Use your mobile phone to record discussions and appointments. Get second opinions.
This is our life we are talking about, and that's bloody important. We aren't just a number or the next appointment. Make this personal, because it is.
Love to all.
x
