Hello, everyone. I finish radiotherapy on Wednesday (15 sessions). I’ve had a single mastectomy with reconstruction and have been on Tamoxifen for two months. Today was a ‘radiotherapy check-up’ with the oncologist, but instead of meeting my oncologist, I was seen by one of ‘specialist assistants’. Unfortunately, the appointment was purely for her benefit, not mine, and was designed to enable her to tick a few boxes. She provided no medical information whatsoever, debated with me about my Tamoxifen side effects (seemed to think beign on them for two months was ‘too soon’ to notice them!!!), and her only answers were ‘see your GP’ or ‘come back and see the oncologist in 4-6 months’. What a waste of time.
I had so many things I needed to discuss and ask. Am I discharged when my radiotherapy ends? Do I need any tests (bloodwork? bone scan?)? I’m asthmatic and my breathing is worse since radiotherpay, but this wasn’t addressed. What happens next as far as making sure the cancer doesn’t return? And finally, I haven’t slept in two months (chills followed by flushes, restless legs, nausea), and for this she merely said there is no treatment for the side effects, but if I got sleeping tablets from my GP, ‘A good night’s sleep will do me a world of good’.
I am going to insist on an appointment with my oncologist, but as this could take months, I was hoping for input from those of you who live in one of the better NHS cachements as mine is horrendous.
Thank you in advance, and I apologise for my frustration. Being fobbed off when I already feel invisible is the last straw.
I’m so sorry you had such an awful appointment. I too have had some shockers throughout my treatment where I feel it is just a box-ticking exercise for their benefit, not mine. Sometimes the medics make you feel you should just be grateful to be alive and to shut up and go away and not cause trouble.
Go back and cause trouble! Do you have a good relationship with a Breast Care Nurse or someone similar? Mine is great and she sorts an awful lot of sh*t out for me! You need to talk to someone who can answer your questions. Is there a Patient Liason Service at your hospital? Maybe they could intervene?
I’ve been on Tamoxifen for 6 months now and my side effects have improved - stay hopeful.
I have asked to see consultant oncologist for my 6 week follow up after rads, but I know this is not routine. I did not see him during rads but I gather at some places patients do. I guess they can’t be everywhere. Have you thought about discussing your concerns re medication with him/her by phone? You should have been given information re what to look out for from your radiotherapy dept. After the 6 week appt I’m not expecting a review until a year post-op. I gather, my care in meantime will be with GP. I expect to have yearly reviews at hosp for 5 years and then rejoin 5 year screening programme.
Atat
Thanks, OrangeGirl and Atat. I’ll stick to getting care and information from my BCN and GP, in spite of everyone in my cancer team telling me that the oncologist is my primary carer.
I too was seen by “someone else”, prior to radiotherapy. She was in a hurry because she was late getting to work. She spoke so fast and didn’t answer my queries satisfactorily. I was upset when I left the room, so breast care nurse got me in to see consultant oncologist straight away. She was lovely and put my mind at ease. Crying obviously worked for me!!
Only 4 more radio sessions to go now and then see oncologist in 8 weeks.
What happens then?? Hope I see consultant so’s I get a proper answer.