Hi @RR
I was diagnosed in January with invasive lobular carcinoma like @Sister but in both breasts. I was recommended bilateral mastectomy first then treatment depending on my pathology. I’m 52 and have four kids. The older three are adults and the youngest is 12.
I asked to have my surgery delayed until April because waiting until the school holidays would have less impact for me in terms of family and work. Of course I told my surgeon that if it was a matter of life and death, I’d jump up onto the slab immediately but if I did have the choice, it would work out better for me to wait. So I had a range of staging scans and after it was determined that there was no evidence of metastasis, he was happy to wait.
We did discuss neoadjuvant (pre-surgery) therapy but he said he wasn’t in favour of it as we didn’t have any node information and only had the biopsy path results which are never as comprehensive as the path from surgery.
I had my double (nipple sacrificing, skin sparing) mastectomy with air expanders inserted, exactly four weeks today! I was back at work and driving, two weeks ago.
I had sentinel nodes removed on both sides - there was no cancer found in the right sentinel nodes but 2/4 sentinel nodes on the left were positive so I had a full node clearance on the left and the final path showed cancer in 2/9 axillary nodes.
The craziest thing about my final results is that while everyone expected there to be a large section of cancer on my left side (that side had quite a bit of distortion and an inverted nipple), and there was - 105mm - my right breast, which looked normal, had NO malignancy detected at MRI and showed no node involvement, had 165mm of cancer cells in it! Frigging enormous!
Both sides came back ER+ PR+ and HER2- and grade 2, stage 3 in the left, stage 2 in the right.
Lobular carcinoma is just too unpredictable and these final results will now determine the treatment they recommend for me.
Like @sister also, I’ve found the mastectomy relatively easy to cope with (my distorted breast looked so weird I was actually happy to see it go!) but chemo absolutely terrifies me!
I know I’ll have to go down that path though and that will be followed by radiation and hormone therapy - and I know I will get through it!
My first appointment with the oncologist is on Tuesday.
Wishing you all the very best with your journey. Please keep us updated xxx :smile:
