Dear Pinklily
I echo what Paulus has said. It sounds as though you’ve received really poor treatment and need clarification.
In your situation, I think I’d phone the BCN and make an appointment to see her face-to-face, before you see the Oncologist. Then be frank with her about how you feel, and ask her to talk you through the details.
From your post, it seems that you’ve already had surgery. Didn’t the Surgeon tell you the pathology results, which should have been through c. 3 weeks after surgery? He/she should be able to tell you the size of the tumour removed, the grade, whether ER +ve or -ve, and whether HER2 +ve or -ve. I would ask your BCN about this and request a copy of the report your breast surgeon will have sent/will send your GP.
As far as I know, it’s not unusual to wait for 8 weeks after surgery for adjuvant treatments to start. The wounds need to heel well before you have post-op treatments. If you’re having chemo, that usually comes first, followed by radiotherapy if you’re having that. Hormone therapy, if that is on the menu, can go alongside radiotherapy. Your BCN should be able to tell you the programme.
In my case, my pathology results took 3 weeks to come through. Then there was a Multidisciplinary Team meeting about the results (Surgeon, Oncologist, Radiologist, BCN) to discuss treatment recommendations, then I had an appointment with the Surgeon to discuss the results, followed a week later by an appointment with the Medical Oncologist to discuss the treatments and give my consent. As I declined chemo, I was then referred on to the Clinical Oncologist (Radiologist) and was immediately started on hormone therapy as I was strongly ER+ve.
Had I accepted chemo, that would have come first before rads and hormone therapy, but there would have been a wait. I was still having problems with my axilla wound which kept leaking serum. This meant extra surgery 5 1/2 weeks after the original WLE and axillary node clearance. I had a further 4 weeks to wait before radiotherapy started, to allow for complete recovery of the wound site. So, rads didn’t start until 9 1/2 weeks after the main surgery. Had I had chemo, that would have started about then, and rad and hormone therapy would have waited until after chemo.
Every patient is unique, so you need to have your own programme outlined to you. Be firm with them and don’t be afraid to tell them if you feel swamped by the situation.
You could also ask the BCN which websites she recommends for reliable information. I was directed to Breast Cancer Care, Cancer Research UK and Macmillans, all of which are very comprehensive and trustworthy. There is a great deal of misleading rubbish on the www.
I do hope things improve for you soon.