I was a BCC forum user in 2005 when I was diagnosed with ER+ IDC. Then I was kittyhawk! I had lumpectomy, rads, zoladex and tamoxifen. Fast forward 16 years and I had an MRI scan for rib pain. My GP thought it was probably muscle strain but referred me anyway. No bone mets were seen on the scan but a 15mm nodule was seen in the operated breast. The MRI scan was at the end of November '21 and I was referred urgently only at the start of January. In the meantime I had a mammogram just before Christmas but never received the results. On 11th Jan I saw a breast surgeon, had an ultrasound and the radiologist took a biopsy of the tumour he found. I then had an appointment for staging CT on 28th Jan. Since then, nothing. I phoned an East Kent Cancer helpline on Friday and was eventually put through to the surgeon’s secretary. She assured me I’d get a call later that day as I was due to be seen this coming Weds. I didn’t get any call and am left wondering what to do. This is awful. Its bad enough being told I have a recurrence and left with no emotional support but I can’t believe its taking so long to be given results and a treatment plan. Am crying a lot and feeling angry about it. Thanks for letting me vent! What should I do?
I’m so sorry you’re back here with a recurrence. Waiting is one of the worst things about it. It can take well over a week for a CT report to come through and, as a new patient, you wouldn’t be given these results out of context so you do need to be patient till you see the oncologist. You may find he wants/needs further tests done!
The other awful thing is the almost complete lack of emotional support. Hospitals generally are great at dealing with the cancer and helping us get through the treatments but there is no back up, unless you have a great breast care nurse. They depend on charities like Maggie’s, Macmillan, Breast Cancer Haven… and most of these have suspended face to face support during the pandemic. I would strongly recommend the nurses’ helpline (number above). They offer a superb service and it may help you to talk through this and get that anger and anxiety out. If your hospital has a Maggie’s Centre, you can just walk in and there will be a trained specialist to talk to.
You’ve been told you have a consultation on Wednesday so I would just ring that same secretary and ask her to email you the details as the post obviously hasn’t worked this time. As it’s your first appointment, you might not know where to go, what to expect etc. If you don’t have that number, ring and ask for the breast care nurses. They will soon sort things out for you. The important thing to remember is that you will get some answers on Wednesday so get your questions written down so you don’t forget them!