I feel like I’m always waiting for something to happen. My sbc was diagnosed on 19th March due to a tumour in my right femur. Then i got referred to RNOH at Stanmore for an outpatients appointment on 11th April. They finally operated on 1st May. So I’m now 8 weeks post op. I’ve seen the oncologist but only because i demanded an appointment. I felt they weren’t interested because I’m “only” a secondary. That was on 28th May. He told me that i would be taking Ribocilib, Letrazole and Denosumab. I was supposed to see him this week (25th) but that got pushed back to next week (2nd). Then i got another appointment on 10th July. I phoned up to query this, to be told, by the receptionist that as it’s a Thursday, it’s to see the radiologist about radiotherapy. No-one has discussed radiotherapy. Infact, no-one has really discussed anything with me apart from the one oncologist. According to my breast care nurse, who came to see me when i got diagnosed, because i phoned her, i should have seen the acute oncology nurse but all she did with review my electronic record remotely. Anyway, what i really want is a prognosis. I’d like to plan my life going forward and if it’s not going to be very long, i want quality not quantity. It’s no good pumping me full of drugs to get another 3 months if i spend most of that in bed. Or bound to the toilet.
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Sorry to hear of your secondary diagnosis and it does seem a bit off the way you have been treated. I have read many people being told to see this diagnosis as a chronic illness and for many it is.
The nurses should be back from 9 on Monday and will reply to your questions sometime next week.
Here are a couple of links to the secondary area of the forum that you can request to join, there is also a new chat service.
- Secondary breast cancer is full of uncertainties. But you can count on Living with Secondary Breast Cancer to be there for you, no matter what. You’ll be able to talk, listen and learn with people who understand the challenges that secondary breast cancer brings. Our groups are open to people with a secondary diagnosis. Monthly sessions, facilitated by a therapist, are held in a variety of locations across the UK and online. Find a group. And if you are 45 or under?Our Younger Women with Secondaries Together events provide information and support
- LiveChat: Open to people with a secondary diagnosis. A private chat room where you can talk to others in a similar situation.
Take care 
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