I am 53 and was diagnosed with primary breast cancer in March 2025.
Oestrogen positive, HER2 negative, 22mm tumour removed with clear margins and micro metastases to 1 lymph node. ONCODX was 26.
Radiotherapy completed and just about to finish chemotherapy.
Hormone therapy looming.
I have however been offered Ribociclib. Whilst I can find lots online about the benefit for secondary cancers there is not a lot of information with regards to primary. I know its only just being offered by the NHS for primary.
Whilst my Oncologist has said I am 'high risk' of recurrence I am struggling to make a decision about my on going treatment plan. I have wondered about seeking a second opinion but am not sure where to start!
I am hoping someone in the forum can advise / guide.
Thank you!!
Hi EvieG
I am not sure can advise or guide as such, but I can tell you what I decided re Ribociclib.
I had similar to you ER/PR +ve, HER2 -ve, 20 mm Grade 3 tumour but I had no lymph node involvement. I had a single mastectomy with clear margins. I would not have been eligible for Ribociclib had it not been that I had "skin involvement", meaning that there had been microscopic evidence of cancer cells in the breast skin which pushed the staging to a higher bracket. I was not eligible for oncotype testing because of the skin involvement, so had chemotherapy without knowing whether it could be beneficial.
If not for the skin involvement my Staging would have been low - Stage 1b. That along with no lymph node involvement would have ruled me out for Ribociclib as in the testing for the drug there was no evidence that it reduced the likelihood of recurrence at that staging.
My oncologist offered me Ribociclib but said it was entirely up to me. In my case, after chemo and RT and now on hormone therapy, the improvement in recurrence from taking Ribociclib was estimated at less than 2%. I asked lots of questions of him and made the decision NOT to have it. Before I left the appointment the oncologist said that he thought I had made a good rational decision in my circumstances. He also said that having done all the other things - mastectomy, chemo, RT and now hormone suppressants that all reduced the likelihood of recurrence significantly and for me the risk of some quite nasty potential side effects probably outweigh the possibility of the Ribociclib actually being what prevents a recurrence.
Have you used the NHS Predict tool to estimate your risk of recurrence? That will show where you are with likelihood of recurrence after treatment so far.
Finally, anybody has an entitlement to seek an NHS second opinion - you just have to ask. If I was you I would start that ball rolling with my GP, or perhaps with your Oncology nurse if you have one allocated. If you are in a position to go privately all you would need to do is choose a private hospital that treats cancer and call them up to get an appointment.
Good luck whatever you decide Evie.
I don’t have this type of breast cancer - I have metastatic TNBC. I did however attend a 3 day conference on secondary breast cancer run by the charity Make Seconds Count, where the speakers were oncologists and other specialists in their field. It’s a CDK4/6 inhibitor and I understand it has been shown to be extremely effective in reducing recurrence in high risk oestrogen positive cancers. It was clear that the oncology community are big fans of this class of drugs.
Entirely up to you, but if I was in your shoes I would grab it with both hands.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2026 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007