Lobular Breast Cancer: Let's share and support each other

Hi jkh,

I just discovered this website and have also been on a LCIS journey. I did not have the most
knowledgeable or comprehensive cancer treatment since my diagnosis at 50 in 2012 in Florida.
I have had recurrences and it had never spread into a lymph node. I had multifocal in left breast only but & in 2012 I opted for double mastectomy. I've self-diagnosed 2 tumors in my left armpit since in 2019(oncology practitioners dismissed what I was pointing out finally biopsied it) that surgery w/ some radiation was in 2019. I moved to NC and felt a sm lump in 2022 . I've had radiation again. There was something they saw in 2022 in the pre MRI procedure on a vertebrae, but said it was only a "bone island" , no biopsy was done. I have strained my back with lifting and bending too much and the PA in Oct wanted to do an MRI of my back just in case. The bone island they said is about 20% bigger they thought, biopsied it and it is Lobular BC on left vertebrae. They recommend I take Arimedex. Is that supposed to shrink tumors? What are the physiological outcomes of Arimidex? It states it block the Estrogen Positive cancer cells from growing, but is there any one here or studies showing it shrunk the actual tumor? As for side affects, I don't read anyone saying it causes GI issues. I was told that is the main problem and I think stiffness. Anyone have metastatic BC to Bone?
What Bone Density pills do people recommend? Is is recommended --correct? Thanks!

I was diagnosed with LCIS at age 49, took tamoxifen for 5 years. During that time I developed external polyps on my uterus. I had a complete hysterectomy after 3 1/2 years of tamoxifen and then went into full blown menopause. The lobular breast cancer was discovered 9 years after I stopped taking tamoxifen, at age 63 through a yearly mammogram. It was discovered in the same (left breast) as the LCIS was discovered. I had a lumpectomy and 3 lymph nodes removed. The site where the lymph nodes were removed became infected. Not sure that it was healed well enough to start the radiation as I have had swelling and problems with lymphedema since. I have to look back in my records to be exact on the rest of my treatment. I wonder why I have trouble remembering the details but I suspect just due to the trauma of a cancer diagnosis. The cancer was invasive, size? 1.5-2mm? Oncotype score was, what they called, the grey area. It was left up to me as to have chemo or not. I choose no after I asked what the studies for someone who had lobular breast ca said. There was only one study that the Dr. Was aware of and it did not show any improvement in life expectancy. I started on anastrozole and after 2 years of lots of joint pain I went on exemestane. I still have what I call flare ups of joint pain, exhaustion and mild depression. I have a regular Yoga practice walk 3-4 miles regularly, eat a vegetarian diet and struggle mightily to lose any weight. I put on about 10-15 pounds after the cancer diagnosis and haven’t taken it off yet. But there is always a new day and I am very thankful for that!

What are the names of these groups so I can find them?
Thank you

Consider joining the 2 evidence based ILC Facebook groups! Everyone is supportive and they have incredible amounts of information.

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.

You are on the right track! ILC is harder to detect and the MRI will give a clearer picture. The size and number of tumors will help determine your next steps. Pray that it is just one and small!

I would like to ask others about timelines - how long after your diagnosis did you get surgery? My first ILC (10mm) was found 7 weeks ago. They then searched for and found another (6mm). I am not due to have a mastectomy for another three weeks minimum - so ten weeks from it first being identified. Does this seem like a long time? I have been fine about it all, but find the time delay concerning. I may be able to have a full mastectomy without reconstruction next week; I am wondering whether this could be worthwhile, but have not been able to speak with my surgeon. Thank you for your info!