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New member - SBC diagnosed Dec 2018


Re: New member - SBC diagnosed Dec 2018

Hi VictoriaSponge


Thanks for posting here in the Ask our Nurses area.


Being told you have secondary breast cancer can be completely overwhelming. But having information about what’s happening to you can be a helpful way of regaining some control and help you cope, so it’s important your oncologist answers your questions as far as is possible including the plan for monitoring your condition with scans. 


It’s not possible for us to say for certain what type of scan you will have next as your treatment team will decide which will be the most helpful to perform.


Like you, people with secondary breast cancer often want to know what their outlook and survival may be. Your oncologist is the best person to talk to you about the likely progression of your secondary breast cancer. You can ask to see the consultant rather than the Macmillan nurse in the clinic so you can do this. 


You may worry if the answers are vague but it isn’t possible to accurately predict how each person’s cancer will respond to treatment as life expectancy is difficult to predict and each person’s case is different, even if they are a similar age and have the same type of breast cancer as no two cancers behave in the same way.


At Breast Cancer Care we provide a number of different services for people living with secondary breast cancer.


We have a secondary breast cancer online discussion forum for sharing information and support. You can join the Secondary Breast Cancer Private discussion group here on the forum by logging in and requesting to join or by emailing moderator@breastcancercare.org.uk . There is also a weekly Live chat session which runs on Tuesdays at 8.30-9.30pm. 


Our Living with Secondary Breast Cancer monthly sessions give you the chance to meet and share experiences with other people who understand what you’re going through because they’re going through it too. Held in various locations around the country, and facilitated by a counsellor, you’ll also be able to ask questions and hear from expert speakers about a range of topics such as pain management, side-effects, fatigue, clinical trials and benefits. There’s always a chance to find out about other available support and services too.


Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000.


Our 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 are currently reviewing our Forum service and wonder if you would have five to 10 minutes to complete a short survey. The survey will help us gather information about this service and understand more about any improvements we can make.


Best wishes




Breast Cancer Care Nurse


Please read the Ask Our Nurses disclaimer. This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.


New member - SBC diagnosed Dec 2018

Hello, this is my first post but I guess this is the club no-one wants to join.


I had BC in 2010 (lumpectomy, radiotherapy and chemo for 6 cycles) and thought all was well. However, following a persistent cough and breathlessness (and a bout of pneumonia) I was finally scanned and diagnosed Dec 2018 with SBC with mets in bones and bone marrow. I also have enlarged lymph glands which are in my chest and probably causing the cough. Anyway, I was put on to Tamoxifen and Capecitabine, plus denusomab monthly, and so far I have tolerated the regime well (but it's early days and I'm only on the third cycle, so I know things can change).


One of my frustrations is that I have only seen the oncologist once (for the diagnosis) and after that see a MacMillan nurse ever three weeks for the dispensing of oral chemo. I have so many questions, but only get 'we don't know' as answers. I wanted to know the stats for survival with someone of my age and condition but was told to look it up myself. How long have I got must be one of the main questions in patients minds. Will I get a PET scan or a CT scan next? This is important to me as an earlier CT scan didn't pick up on the metastasised cancer; it was the PET scan (months later) which lit up like a xmas tree and revealed all.


I also want to be part of this private group to see how other people have managed random things like taking holidays, or having manicures, or dealing with minor infections or having a massage (I've been told not to due to bone weakness). This is all new to me and I believe the best way of coping is to collect as much info as possible.