Hi
I’m new to the forum and a social media/posting novice.
Routine mammogram showed strange mass 2,5 mm in right breast, turned out to be Invasive Lobular Carcinoma. I went through all the tests and went for surgery 2 weeks ago.
Just back from my post op appointment to find out that my pathology results show that surgeon took out 65 mm mass and margins still not clear, all 6 nodes removed are also positive.
All plans have now changed and I’m going for CT scan and straight into chemo, then mastectomy.
I had no palpable lump so all this is a shock.
I’m not sure what to expect now and obviously have the worry that the ILC has spread.
I haven’t seen an oncologist yet and if anyone can give me an idea of what to ask, I’d be grateful.
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@deedee3. Welcome to the group that no one wants to join 
You will find a great deal of love and support here so ask anything.
I found a large plum sized lump in my armpit which turned out to be cancer, but hadn’t noticed a breast lump. This was found by the GP. I fully admit that I didn’t check frequently but even when I knew it was there it was sometimes difficult to feel. When I expressed astonishment that I hadn’t felt either lump until they were 4cm and 3 cms the surgeon said ‘it’s not your fault, don’t beat yourself up about it’.
As you have 6 nodes involves that is maybe why they are doing the chemotherapy first. That’s what I’m having, to shrink the tumour so there’s less risk of nerve damage and lymphoedema by taking out a large lump from a confined space.
The CT scan I had was chest, abdomen and pelvis to look for spread. I also had a contrast dye injected to show up your insides better. This momentarily made you feel like you needed a wee but wasn’t unpleasant and the whole thing was done in 10 minutes.
I feel you are in the worst time period when you have more questions than answers. Once you know the CT result, have seen the Oncologist and have a clear treatment plan then I found everything easier to cope with. Intitially I struggled with still having the cancer in there and wanted it out immediately but the surgeon was adamant this way was better for me in the long run. Similarly you have bits left but mine said it’s not suddenly going to spread through your body in the few weeks it takes to get everything organised.
I guess that by the time you see the Oncologist you will have had your CT scan. S/he will go through the type of chemotherapy in great detail. I asked about prognosis but was told they can’t give that until they know the response the chemo and findings at the operation so yours may be the same. It’s good if you can take someone with you to make notes though I was given a big folder with loads of information about just about everything. Not sure if this is usual. Have you got a breast care nurse allocated to you? I have phoned mine with a few questions and she was very helpful.
Sorry this has turned out to be so long. Love and be kind to yourself 
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Thank you so much for your lovely reply, it’s helped me to understand what’s going to happen, I really can’t remember much about what was said to me at my appointment. I’m taking pen and paper to next one!
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@deedee3 welcome to this group. Sorry to hear your news. All I can say is that I feel your fear and know how hard it is. Ive been mesaging on here for 8 months now and these ladies are amazing. Any questions you have, they will help and reassure. Hopefully you will get started on your chemo soon. Go on the the august 2024 chemo starters group and join in the chat there. I’m there and due to start mine imminently too. It is treatable and we will be fine, though the road can be long. Stay positive. Xxx