Hello! Lurker here since my diagnosis last May. I’ve managed til now reading the amazing posts, but now I think I need help and I’m not sure where to go.
This may be long, I’m sorry!
So, I’m 41 have 3 young kids (11,8,6) and last May, after losing 3 stone, I discover a large lump in my right breast one night. Next day, in a bit of a worried haze I make an urgent appt at my local breast care centre (thank god for Bupa through work). Long story short, a week later I’m diagnosed with Her2+ grade 3, stage 3 breast cancer. Lymph nodes involved 6.5cm tumour. Holy shit!
Hospital are amazing and spring into action, due to start chemo less than 3 weeks later with potential for radio and definitely a single mastectomy afterwards. Had genetics tested, came back as positive mutation on CHEK2. Big shock as no breast cancer history in my family.
I had 4xEC +12 Abraxane + Phesgo (ongoing). Managed chemo okay, I was very lucky. Finished chemo beginning of November, had right side mastectomy and full node clearance a month later. Recovery was pretty straightforward (apart from drains, ugh!) and terrible cording (ugh!), found out just before Christmas that my results were back and achieved a full PCR! Given the size of the original tumour, it was more than I could hope for. A great Christmas present!
Second mastectomy and full reconstruction with implants at the beginning of March, didn’t go quite to plan, but got there in the end. My onco/breast surgeon is very happy and she says I’m done. I say, right, so what’s next? She says ‘nothing, you’re done! We can follow up as a courtesy in a year, but unless anything urgent crops up before, there’s no need to see you and no screening necessary’. Great 
.
So I’m still having Phesgo every 3 weeks til August, but I haven’t see my oncologist since my PCR result. He’s lovely, but can be a bit dismissive. I don’t have another appointment with him, he used to just pop in to see me when I was having chemo and once since Jan when I had Phesgo.
Mentally, I managed pretty well all the way through. Until now. Now, when I want to be swinging from chandeliers and moving on with my life with great gusto.
I’m terrified, I’m spiralling. My social media feed seems to be filled with breast cancer survivors discovering a recurrence and becoming stage 4. I came off here because I found it too triggering.
I understand that after a double mastectomy that you can’t have a mammogram, it’s not so much a local recurrence that frightens me, but bone or brain mets.
How do you navigate this with no screening? I so wanted to move on, but I seem more stuck than I ever was 
.
I’m signed up to the Moving On course in June. A year ago I would have been thrilled to be here, and done get me wrong, I am. But I don’t want to live in fear.
So sorry for being so long xxx
