Hi I was diagnosed in April 2021 with secondary breast cancer in my lungs. This was picked up because I couldn’t stop coughing. Initially the gp said my scan showed I had lung cancer, however after further tests they diagnosed secondary breast cancer. This has been the hardest 6 months of my life. Trying to get my head round this. No body warned me 10 years ago to look out for certain signs. How ignorant was I. Treatment is letrozol and Imbrance. This is going fairly well. I started reading this forum yesterday after being nervous of reading other people’s experiences. However ,I have found it very useful and positive. I will look at it regularly from now on. Thanks
Hi Levens I’m 3 and a half year in have secondaries in both lungs base of spine and both sides of pelvis on ibrance and letrozole which is keeping everything stable get scans 3 to 4 monthly and also bone strengthener zometa. Its not all plain sailing but it’s positive results so far without too many side effects. Love hugs and positive vibes . Liz
Hi Levens
I think we must have been diagnosed at the same time. I was told over Zoom and all I could say was “I wasn’t expecting that”. Nor was my oncologist who’d never seen a tumour where mine was - invisible to scans but obvious enough for Ophthalmology to know, even before they did a biopsy, that I had cancer in my eye socket! Treatment is going well but I have little faith in scans - I had a clear mammogram 6 months before I was diagnosed with primary breast cancer (2 tumours, skin infiltration and heavy node involvement, How could they miss it???).
Like you, nobody warned me of what to look out for apart from lumps and bumps along my mastectomy scar. How would I know an ‘acne’ spot that wouldn’t go away was a skin lesion spreading? I felt incredibly naive. Now I have various ‘suspicious’ areas of my body but my oncologist is focusing on zapping them all with chemo so we aren’t bothering following them up yet. But I think ‘naive’ was good. I didn’t think about secondary bc although I knew I must be high risk, given the 19/21 infected nodes. I didn’t even know one of my tumours was triple negative. No one told me, though the data was in the letters I only skim read. I think the period from ending primary treatment in Autumn 2019 and getting my secondary diagnosis 18 months later (should have been a year earlier but for a stupid radiologist who didn’t report the mass in my eye socket - and of course the pandemic that meant my GP practice was almost inaccessible) was better for not knowing.
Even now, there’s a part of me playing ostrich. I want to know the treatment is working and I want to understand more about SBC and TNBC, certainly more than first time round, but I don’t want to be doubting my team. For me, a little knowledge is a dangerous thing and treatment is best left to my team, who I know do have my best interests at heart. I think the best way to deal with this is to accept, not blame ourselves for overlooking symptoms no one warned us about, and then decide how much we want to know individually. SBC has been the poor relations (it’s only this week that the NHS has agreed to start collecting data, ffs) but there are increasing new treatments and many many women have lived with the diagnosis for years. The bad thing is that it seems to be constant treatments (I have to take 18 pills a day). Which means we never get a break, we can never again expect to live a cancer-free day and we cant lead carefree lives any more.
You’re right. This a great place to be and it has provided me with invaluable support in the past 3 years. Use it. Don’t Google. Learn from those who are living with it, from safe sources. I wish you all the best with your treatment. Look after yourself well,
Jan x