Hi everyone,
I was diagnosed just over a year ago with ILC. It has spread through my lymph nodes up to the subclavian area and resting on an artery. Because of this I am unable to have surgery. I have been on targeted therapy and letrozole. Is there anybody out there who is also unable to have surgery? Please somebody? 
. It is shrinking but still no surgery 
Would be great to hear from someone who hasn’t been able to have surgery as well
Hi @puglover56 what a difficult situation to be in. I have no idea how often this happens but it might be worth looking into the Someone Like Me initiative that Breast Cancer Now offers. You can find out more by clicking this pink link Someone Like Me | Breast Cancer Now . Also call our nurses on 0808 800 6000 between 9.00-16.00 (until 13.00 on Saturdays) as they may well have encountered this before and can answer your questions. I wish you a successful outcome.
Hi @Tigress yep I did contact Someone Like Me back in the Summer. They were lovely but unfortunately, they couldn’t find anybody similar either. They did put me in touch with a lovely lady but our journeys were pretty different and she had surgery and chemo.
I still live in hope there is somebody out there who hasn’t had surgery 
My surgeon did say he might consider removing the lump and some of the lymph nodes up to my armpit but won’t go any further up than that. My dream would be for it all to be removed and find it scary leaving some of it behind. We aren’t at that stage though so I won’t fret about it yet.
Gosh @puglover56 I’m so sorry that we can’t find anyone who has been through what you are going through to give you some reassurance. Thank goodness the treatment is shrinking the tumour and, presumably, options may change and increase as the situation changes. Sending massive hugs to you. Do keep in touch.
Hi, I haven’t had surgery. I have secondary breast cancer. I was diagnosed in March. It’s in my left breast and my tailbone. I am on letrozole and palbociclib. I have quite a few side effects, but am managing to tolerate them quite well. I have had a further 2 PET scans since diagnosis. They both show that the lump in my breast is shrinking, and that my tailbone seems clear. It is not ‘glowing’. There is no evidence of the cancer spreading, so I am greatly encouraged. Hopefully I will be able to continue with the tablets as long as my body can tolerate them.
This is not my situation but I know a lady who is and has been for a very long time now living with a tumour wrapped around her optic nerve which is very slow growing and has been judged to be less of a danger to her life than surgery to remove it would be. She has lost most of the sight in her eye and has a problem with her other eye as well but lives a very full life and is actively involved with the sight loss community and was a great support to me when I had retinal vein occlusions . Just wanted you to know that you aren’t alone and I really hope that the medication works enough that you can eventually get it removed xx
Hi I am also diagnosed with lobular breast cancer. No surgery as spread to spine L4. On palbo and letrozole. Tumour in breast shrinking so pleased treatment working. Ct scan results in New Year so will find out if surgery may be option in future.
Thank you everyone for responding. It was great to hear your stories and the positive impact the meds are having Not feeling so alone now!
I am due another PET scan in the New Year so hoping it’s all shrinking still and going in the right direction. 
Thanks again.