Expert: Claes-Gustaf Nordquist, M.D. - 4/11/2007

Question
I am a 60 yr old Ontario professional.  Dx left side breast cancer 2003, when I found a large underarm node, also a almond-sized node in the skin over my ribs. No tumour "in" the breast itself. Surgical biopsy to remove the underarm Node, no breast surgery, FEC chemo 6X, radiation 20X, with a boost to the rib tumour. A month after treatment, I had lymphatic swelling bull-frog style in left side of neck.  My onc said it's nothing but now I have pea-sized nodes left neck and larger ones around the jaw. Also "hard" neck muscles. Doesn't feel right. I would like a node biopsy.  January 2007, my Onc sent a memo to my Dr that I may ask for a biopsy and GP gave me a depression questionnaire to complete.  How long should I "wait and see"?  I want a new oncologist who will give me information not "blow me off". My vision is blurred and I have been seeing double in left eye for the last two weeks.  2004 MRI showed "fluid" on the brain after treatment, otherwise normal.
I am wondering if the treatment guidelines for recurrence in Ontario are palliative only.  This is not acceptable to me.  I work full-time, I support a family, I am post-grad educated and understand and need to know information. I am told I do not need to know- "You let us worry about that."
I am trying to stay calm, be rational, keep busy, but recurrence should be diagnosed and treated in a timely manner. What should I do next?


Answer
Who of all people has a higher need to know than you?! That answer is unacceptable! DEMAND to see all the material in your reports!  Those nodes you describe can be checked with thin needle aspiration biopsies rather easily! MRI scans and ultrasound scans should also be able to give additional information. INSIST on it, DEMAND it! It is YOUR body, health, illness & future, nobody else's! I fully understand why you are upset! Please do keep me posted!