I was diagnosed with SBC in 2023 and on a regime of Ribociclib and Letrozole have been lucky that the tumour in my breast and lymph nodes has reduced and lung nodules remain stable. My question is while tumours are reducing is it still possible for cells to spread to another part of the body. My nurse told me that the medication I am on works for an average of 2 years so I suppose although things are currently going well I am coming up to the 2 years and second guessing every ache and pain. Thank you in advance.
Hello,
I can’t help answer your question, maybe one of the nurses on here can help. All I can do is relay my story.
DX with both primary and SBC 15 yrs ago with spread to both lungs through lymph nodes. Initially I had chemo for 6 months then mastectomy with node clearance no recon then radiotherapy. I’m on herceptin for life and have been on Tamoxifen until I couldn’t take the side effects anymore. The lungs have reduced so much you can’t detect the cells by CT scan with contrast this doesn’t mean they aren’t there just that they are so miniscule now you can’t see them. For me it’s herceptin that’s kept me going. At one point we thought my liver was involved but we can’t be sure and it sometimes shows up in CT scans. The Docs think it has always been there but just can’t always see it on scans. Whatever, it’s not growing. 15 yrs is a very long time and I am truly grateful. I hope this helps. Xxxx
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It’s good to hear that SBC can be overcome for many years. I am on the same journey but only 4 years in. Diagnosed during COVID with HERS2 + PR + ES + breast cancer with secondaries on both lungs. I went straight onto Herceptin and Anastrazol. Because of Covid no chemo or op! After a difficult start with Herceptin am tolerating it well with only slight peripheral neuropathy in my toes which I have been told is rare. Anastrazol is less tolerable but am still taking it at present. Now have osteoporosis and fibromyalgia from this medication. The cancers on my lungs are now barely negligible and are micro measurements and they say what remains of the breast cancer could just be residual left by the cancer. I am on Herceptin for life (injection every 3 weeks) but am still able to function reasonably well looking after grandchildren and enjoying life. Herceptin is a game changer for triple positive SBC!
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Thanks so much for your reply sending best wishes.
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Hello michellem55
Thanks for posting.
Its natural you are second guessing every ache and pain with your diagnosis of secondary breast cancer. Ribociclib and letrozole are systemic therapies meaning they will be targeting any cancer cells wherever they are in your body. As you have had a good response to this treatment then if there were any other cancer cells in your body its likely these will have been destroyed or stabilised as well.
Its always difficult to predict how long a treatment will continue to be affective for. As you see @sarahlousie and @Tinamaria have both had a good response to treatment.
At times like this, some people find it helpful to talk with others who are going through a similar experience. We have a specific section on this discussion forum for people living with secondary breast cancer which includes a private chat group for sharing information and support. There is also a weekly Live chat session which runs on Tuesdays at 8.30-9.30pm.
We also provide a number of different services for people living with secondary breast cancer aimed at providing both information and support online and face-to-face. These include Our Living with Secondary Breast Cancer Online groups facilitated by trained counsellors and speakers live sessions. Our face to face Living with Secondary Breast Cancer groups meet up monthly and also give you the chance to connect with and share experiences with other people who understand what you’re going through.
Do 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 more 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.
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Best wishes
Jane
Breast Care Nurse
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