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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: Nov 12 5:54am | Replies (395)Comment receiving replies
ILC stages 1A (R) and 1B (L), dbl mast Jan 2023, 4x chemo, 16x radiation, on anastrozole since July 2023 with minor aches and hot flashes, improves significantly with exercise.
I am now in the monitoring phase, with CT of chest, abdomen, pelvis, and bone scan every 3 mos. Last one in Nov appeared clear. However, I cannot shake this feeling that ILC needs to be watched and searched for much more diligently than IDC. Does anyone else feel this way? My last CT did not show any mets, but is the radiologist experienced or trained on what unusual things and in what unusual locations to look for because this is ILC??? I see on various boards that other patients have PET scans. I requested one and was told it is not done at my stage, only if there are symptoms and suspected mets. But why not look now, look early? Once I have symptoms, it has most likely metastasized, so am I suddenly stage 4 at that point? And wouldn't it be better to find it and treat it much earlier than only when symptoms appear??? I do not agree with or understand this "medical protocol". Has anyone else tried to be more proactive only to be told no? SO frustrating!! My onc wants to extend my CT schedule to every 6 mos, though he said he will stick to every 3 mos if it helps me sleep at night. But if CT is not the best type of imaging to SEE ILC, what does 3 or 6 mos matter??? I feel that we would need an expert radiologist who knows exactly what details to look for, and how do I find out if my local radiologists do? I ask and ask questions and am probably becoming a pain in my onc's neck, but I can't let it go until I feel they have done all that is available at this time, to thoroughly evaluate me. This "wait and see" attitude makes no sense to me. I feel like if we SEE something by WAITING, it's already too late.
Thoughts? Experiences?
Thank you.
Replies to "ILC stages 1A (R) and 1B (L), dbl mast Jan 2023, 4x chemo, 16x radiation, on..."
These are all excellent questions! I have ILC, diagnosed de novo Stage 4 with mets to bones.
1. " is the radiologist experienced or trained on what unusual things and in what unusual locations to look for because this is ILC?"
They probably are. I always feel bad that patients do not have a way to communicate with the radiologist reading the scans. I once challenged a scan with my oncologist. She asked for a re-read, and asked around a second person to read it as well. One thing you can do is, ask your oncologist to put a note when requesting scans that you have ILC. Perhaps it will give them a heads up.
2. "PET scans.": I think there are different schools on this. My onco never ordered a PET for me. I asked about it multiple times but she said she believes "CT CAP + bone scans are the best way to follow it" in my case. Now bless your heart, I already have bone mets, so it may be a different scenario for me. There are some PET scans that show the Estrogen+ cancer in the body, you might want to ask about them (18F FES PET). Some dr's caution against the glucose your body intakes for PETs. Again, there are different schools...
3. CT: CT will, in all likelihood, show if there's something in your organs (kidney, liver, etc.)
4. " I ask and ask questions and am probably becoming a pain in my onc's neck": It's good, you will keep them on their toes 🙂 In my dr's notes it says "the patient has anxiety over her diagnosis". You bet I do!
I hope and pray it never comes back to you. Ask questions, take some actions, sure, but please do not over concern yourself with thoughts of stage 4. It looks like you are under good care. All research agrees on good effects of regular exercise, eating healthy, sleeping well. Try to adopt these and hope for the best.
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Consider joining the 2 evidence based ILC Facebook groups! Everyone is supportive and they have incredible amounts of information.