Newly diagnosed with Stage3
Hello everyone,
I am new here and am looking for a place for encouragement and support. My journey started back in Jan/Feb 2026 when I felt a rather large lump in right breast. Mammo in April was inconclusive, diagnostic mammo and ultrasound in May were inconclusive and just showed very dense breast tissue. MRI with contrast in June showed areas of concern. Biopsy in July showed positive for invasive lobular carcinoma in right breast, ER+, PR+, HER2-. The waiting game was awful. I had a bilateral mastectomy (on left as prophylaxis and right because of size of area) and 4 sentinel lymph nodes tested. Margins were negative for carcinoma. 1 came back positive for cancer so additional lymph nodes sent for testing. Pathology results show 5 lymph nodes with macrometastatic carcinoma and 2 lymph nodes with isolated tumor cells. The tumor was 10cm. I met with my surgeon yesterday to discuss these results and further treatment. He informed me this is Stage3 cancer, ordered a PET scan, and sent a referral for medical oncologist. I just turned 40 in November and my mammo from 2024 was clear. I am a bit scared. I am married with 2 young kids and am so scared this has spread further. Anyone with a similar diagnosis that can give any advice or encouragement?
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Hi @mypinkjourney0921 and welcome to Breastcancer.org. We're so very sorry for the reasons that bring you here, but we're really glad you've found us. We know the waiting for final path results and finalized treatment plan can be excruciating. We're here to hold your hand while you wait.
We wanted to point something out to you that you should ask your doctor about. Do you know the type of PET Scan you'll be having? With Lobular Carcinoma, it's suggested that an FES PET Scan be used (as opposed to and FDG PET Scan, which is the traditional type) because some lobular cancers do not show on an FDG PET, only on an FES PET. So, this will make sure they are able to detect cancer if it's spread elsewhere. You can read more here:
Types of PET Scans: FDG vs FES
Please keep us posted with your results. We're in your pocket!
—The Mods
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Sorry to hear your tale of woe - so many of us have similar ones. The failure of scans to pick things up. The shock of the pathology. The slide down the mountain trying to gain a foothold as the news just gets worse and worse. Everyone assuming you have a pea-sized lump and have been 'caught early' ('I mean, who isn't these days?'). It is a well trodden path unfortunately.
I dont have personal experience of ILC but if you look up Dr Liz O'Riordan's blog, her story is very similar to yours. Her diagnosis was 10 years ago. She has had local recurrences x2 which were successfully treated and she is fine. From memory I think she was age 40 too when she was diagnosed. Her tumour was bigger than yours.
Hopefully you will have had your PET scan by now and will soon have a treatment plan. People get through all kinds of diagnoses as you will read on the Stage 3 board. Hold onto hope and when that feels too heavy, let us hold it for you.
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