Hi Jane @crazy_dog_lady

I was diagnosed with ER/PR+ HR- lobular cancer in summer 2021.  In July 2021 I had a mastectomy on my right breast and 3 lymph nodes removed then a full axillary node clearance in September 2021. In total 3 of 15 nodes had cancer cells. A few scans later (gamma ray, CT PET) and a Bone Biopsy in my pelvis (that's a story in itself) and I was diagnosed with metatastic stage 4 breast cancer. It was in my spine and left and right pelvis. At one stage they thought it was in my liver too but an MRI scan proved it not to be the case.

I am on Letroxole and Adcal D3 every day; Palbociclib 3 weeks on, 1 week off (max dose) and had 2 injections so far of Denosumab (1 per month for maybe a year). I am tolerating the meds extremely well. I think my hair is thinning. It was before all of this and then stopped but I think it's started again. I think the Densumab may be having a strange effect on my pelvis area but I am yet to discuss that with my Oncologist. I had chest wall radiotherapy for 3 weeks in March 2022. The process was fine but the skin burn etc for 3 weeks afterwards kept me bandaged up and working from home. I have just had 2 more scans on bones and torso and await the results.

I wanted to tell you about SABR radiotherpay, sometimes referred to as Cyber Knife. I was told I could not have this on the NHS but I do have private medical at the moment so I got it sorted through that in February 2022. It is pinpoint radiotherapy that I had on the spine and the two pelvis spots. Fingers crossed the bone scan will show improvement in those areas as a result. I am 54 and I am not in pain so most of the time I am in very good spirits and continue to plan things to look forward to as before. I am sorting my pension so I can retire at 55 to enjoy time with my family for however many years I can live with this for. Hopefully quite a few, because as others have said, you just don't know. These drugs have only been in use a few years.

I live in Warwickshire. The small hospital near me is great. I had my surgeries and some scans there and then there is Coventry wich is a big hospital where I went for radiotherpay, the bone biopsy and other scans. have also used Birmngham for the privtae stuff. I am very thankful to have these facilities relatively close to me and also to have flexibility in my office job.

My advice is ask about SABR, try to live your life as normally as possible and don't dwell on things. Do the things you enjoy. Even moreso now.

Tx