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.
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 
Hi st1965
Thanks for posting.
Being told you have secondary breast cancer can be completely overwhelming and is full of uncertainties. This can be even harder if appointments are delayed or treatment plans are unclear. It sounds as if you have had a really difficult few months.
As @naughty_boob has suggested, whilst secondary breast cancer can’t be cured, it is possible to treat it. Treatment aims to control the cancer, relieve any symptoms, and maintain health, wellbeing and a good quality of life for as long as possible.
Many people with secondary breast cancer want to know about their prognosis as they want to plan their life going forward and many value quality over quantity. But life expectancy is difficult to predict, as each person’s case is different and no two cancers progress (spread or develop in new areas) in the same way. However, as treatments have improved, more and more people are living longer after a diagnosis of secondary breast cancer. And whilst some people experience symptoms and side effects, others find these are minimal and that they are able to maintain a good quality of life whilst having treatment. The best people to discuss this with are your treatment team as they have all the information about your individual situation.
You explain that when you spoke to the oncologist on the 28th May they told you, you would be taking ribociclib, letrozole and denosumab. These treatments, alongside radiotherapy, are often used for breast cancer that has spread to the bone. Having to chase health care professionals is very frustrating and difficult, but it might be helpful to ring your breast care nurse again and explain that that some of your appointments have been cancelled and that you would like to speak to her about your treatment plan and support going forward. It might also be helpful to know that planning treatment for radiotherapy will usually include an appointment with a radiologist who is a doctor specialising in the use of x-rays, ultrasound and scans to diagnose and treat disease and a member of the multidisciplinary team.
If your breast care nurse is unable to help you move things on you can contact the Patient Advice and Liaison Service (PALS) who can provide you with information and support.
This is a confidential service for patients, their families, and carers. They can help resolve concerns related to health matters, explain, and handle complaints procedures and use feedback to help influence change. PALS work with staff, managers, and if relevant, external organisations to provide support and advice to people concerned about the care they are receiving.
You can find your nearest PALS office on the NHS website.
Here at Breast Cancer Now we have a number of support services for people with secondary breast cancer.
Our Living with Secondary Breast Cancer services are there for you, no matter what. They’re all facilitated by trained counsellors, to help you find the support you need, in person or online. However you access a service, you’ll be able to talk, listen and learn with people who understand the challenges that secondary breast cancer brings.
Our monthly in person Living with Secondary Breast Cancer groups are facilitated by a counsellor, and are held in locations across the UK in person. Every 3 months or so, we invite an expert speaker. Topics may include managing fatigue, exercise and secondary breast cancer, finding out more about clinical trials, managing side effects and relationships and communication.
Our monthly online Living with Secondary breast Cancer groups are also facilitated by a counsellor… There are 6 online groups each month that are open to anyone across the UK.
Each month we also run online 2 secondary breast cancer speakers live sessions with expert speakers that cover a range of topics as they do our face to face groups.
We also have a secondary breast cancer online peer to peer discussion forum including a private discussion group for sharing information and support. The forum and private group are message boards where people affected by secondary breast cancer can learn about other people’s experiences and share their own if they wish to.
The Living with Secondary Breast Cancer Chat Group is a new format of our online groups that we’re trying out. By typing messages, you’ll be able chat with others in this online space without having to turn on your camera or microphone. Each 1-hour Chat Group will take place at the same time every month and will be facilitated by a qualified counsellor.
We’re testing the Chat Group for 6 months (from March 2025), with 2 sessions per month – one during the day and one in the evening.
You are also welcome to call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000. If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.
If you would prefer one of our nurses to call you. Please complete this form ticking the box agreeing to a call back.
Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.
Out of hours you can leave a message and we will call you back when we next open.
We’re currently evaluating this service. If you’d like to provide feedback, please click the link to complete the survey . It should take approximately 10 minutes.
Best wishes
Val
Breast Care Nurse
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