I had my post surgery review today and whilst it was good news, I got a surprise. My original CT scan showed the tumour as being approx 18mm, then I had a mammogram followed by another CT scan and they both indicated the largest tumour being approx 15mm.
I realise it can be difficult to see the tumours clearly but tiday I was told that the biggest tumour was 50mm. That’s a surprising difference. The surgeon also removed two sentimental lymph nodes and one of those was cancerous also. It wasn’t planned to remove lymph nodes so I’m so pleased she did.
My question is, did anyone else get a surprise with the size of tumour? Ive just read about ducal vs lobular cancer and .I’m wondering if this is the explanation.
That is a big difference. It does seem to happen though, my lobular cancer measured 35mm on mammogram and ultrasound but was sent for MRI because lobular cancer doesn’t always show the full extent on ultrasound. MRI measured tumour as 55mm but after mastectomy at eventually turned out to be 77mm.
I can understand your consternation but, as an old hand now, I’ve learnt that there are always surprises with breast cancer. In my case, I went from “I really don’t think you have anything to worry about” to mastectomy and full axillary clearance in 5 weeks. I went from no detectable lumps (and a clear mammogram only months before) to two tumours, one lobular, one ductal, one hormone-receptive, one triple negative, plus 19/21 infected lymph nodes (they’d been working overtime!).
The fact is, it’s a fairly imprecise business. Mammograms generally are reliable but there are always exceptions, women with dense breast tissue for example. The same with ultrasound (how could I have one showing my breast was all clear when there were two tumours?? One was right between the ribs). So it’s only once the surgeon gets in there and can apply the relevant dyes to single out healthy tissue from infected that the full picture can be seen. Then your biopsy is subjected to multiple tests to check for specific proteins, genes, DNA, whatever, to inform your treatment.
You don’t seem to have panicked at the idea of an infected sentinel lymph node which is good. Be prepared for anything and, very important, decide just how much information you need and how far you’re able to trust your team’s judgment. Sometimes ignorance is bliss while you’re in safe hands. Whatever you do, please don’t use Google. Almost all of us have found it counter-productive because Google cannot know your precise diagnosis and couldn’t give a fig for your emotional fragility - it’s all out there, most out of date or unsubstantiated. It’s a minefield best avoided
I did. They thought I had an IDC tumor of 1.8 mm with surrounding DCIS for a total area of concern of 3.6 mm. After pathology came back I ended up with no DCIS and instead a 3.2 mm IDC tumor. Enough to move me to stage 2. Anyway I have since learned it is quite common since dense breasts are very hard to read accurately with scans.