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

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!

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!

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.

@deb23

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.

Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with the results of MRI, node ultrasound, genetic breast marker panel, I am finding myself less and less confident that I would ever find peace with a lumpectomy and combine that with my aversion to radiation, I am left exploring double mastectomy (because I am not doing one and then finding out later that I need to do the other).

Why is this so darn hard? I had convinced myself to just suck it up and do the lumpectomy because it's easier recovery and "radiation should be pretty easy"...easy to say for someone who is not having to contemplate it. The surgeon said lumpectomy would absolutely be an option and that if I decided anything "crazy" he would tell me, but supports my decision. What is "crazy"?

Today I've spun 180 degrees. My gut just keeps telling me that the correct move is just to free myself of the most breast tissue I can, even though it's not a guarantee because to do less would never buy me peace of mind.

Drivers for this radical change in thinking stem from not wanting to ever go through this again, if at all possible, fear that ILC will affect my left breast, if it hasn't already (because why would I believe anything the imaging that missed it in the right for so many years states), fear of doing lumpectomy/radiation and suffering long-term effects from the treatment, another missed tumor that metastasizes to far off organs like the GI tract or peritoneum, distrust that despite post-lumpectomy treatment, that there was missed cancer left lurking, considering what my state of health may be in 5-10 years when I might face mastectomy if there's a recurrence (no way to know, but it did enter my mind). Pros for lumpectomy, in my mind, just amount to less recovery time and less life disruption at this moment in time. The cons seem to outweigh the pros for me, when I think it through, despite the relatively non-statistical difference in life expectancy/recurrence from one surgery to the other (based on the small groups that have been studied as compared to other types of breast cancer).

As I was busy convincing myself of my newfound decision to lock onto bilateral mastectomy with immediate reconstruction (if even a possibility for me), I was flooded with a heavy dose of guilt...guilt for considering removal of the both breasts, guilt for considering symmetry in the equation since I don't want to go flat...how vain of me...guilt at the though of the inconvenience it would cause my husband (though he wouldn't agree) and his work routines, guilt for the thought of creating financial stress for my decision (cost of life in my mind vs money cost), etc, etc. Am I special in my level of guilt I feel for any decision I make or is this a completely normal phenomenon? Pros to mastectomy for me include a bigger peace-of-mind that I did everything I could up front to get rid of the source or potential source, possibility of maintaining some sense of symmetry, get it done and move on. Cons could be a plethora of repeated surgery and possible complications/infection, downtime from work, longer recovery.

So, with the cons more than the pros for my decision of mastectomy, why does it still feel like the right choice? I just don't see either choice as having a pro list that would outweigh the cons in the end.

Talk to me! I know some of you have been here.

Thank you for your kind words. I am 58; soon to be 59 and never thought such a choice about a body part would be so harrowing.

I think one question, that I’ve not found an answer to, is regarding the prevalence to which this stealth cancer finds a new home in other organs ( in pts with ILC breast cancer) and what the morbidity/mortality is for that aspect. We only hear the stats that support the breasts (no pun intended, but still chuckle). These are questions that would haunt me if I do lumpectomy, I just know it.

Congrats on 50 years! I have another 15 till I get there. I wish you and your husband many more years of happiness and health.

Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with the results of MRI, node ultrasound, genetic breast marker panel, I am finding myself less and less confident that I would ever find peace with a lumpectomy and combine that with my aversion to radiation, I am left exploring double mastectomy (because I am not doing one and then finding out later that I need to do the other).

Why is this so darn hard? I had convinced myself to just suck it up and do the lumpectomy because it's easier recovery and "radiation should be pretty easy"...easy to say for someone who is not having to contemplate it. The surgeon said lumpectomy would absolutely be an option and that if I decided anything "crazy" he would tell me, but supports my decision. What is "crazy"?

Today I've spun 180 degrees. My gut just keeps telling me that the correct move is just to free myself of the most breast tissue I can, even though it's not a guarantee because to do less would never buy me peace of mind.

Drivers for this radical change in thinking stem from not wanting to ever go through this again, if at all possible, fear that ILC will affect my left breast, if it hasn't already (because why would I believe anything the imaging that missed it in the right for so many years states), fear of doing lumpectomy/radiation and suffering long-term effects from the treatment, another missed tumor that metastasizes to far off organs like the GI tract or peritoneum, distrust that despite post-lumpectomy treatment, that there was missed cancer left lurking, considering what my state of health may be in 5-10 years when I might face mastectomy if there's a recurrence (no way to know, but it did enter my mind). Pros for lumpectomy, in my mind, just amount to less recovery time and less life disruption at this moment in time. The cons seem to outweigh the pros for me, when I think it through, despite the relatively non-statistical difference in life expectancy/recurrence from one surgery to the other (based on the small groups that have been studied as compared to other types of breast cancer).

As I was busy convincing myself of my newfound decision to lock onto bilateral mastectomy with immediate reconstruction (if even a possibility for me), I was flooded with a heavy dose of guilt...guilt for considering removal of the both breasts, guilt for considering symmetry in the equation since I don't want to go flat...how vain of me...guilt at the though of the inconvenience it would cause my husband (though he wouldn't agree) and his work routines, guilt for the thought of creating financial stress for my decision (cost of life in my mind vs money cost), etc, etc. Am I special in my level of guilt I feel for any decision I make or is this a completely normal phenomenon? Pros to mastectomy for me include a bigger peace-of-mind that I did everything I could up front to get rid of the source or potential source, possibility of maintaining some sense of symmetry, get it done and move on. Cons could be a plethora of repeated surgery and possible complications/infection, downtime from work, longer recovery.

So, with the cons more than the pros for my decision of mastectomy, why does it still feel like the right choice? I just don't see either choice as having a pro list that would outweigh the cons in the end.

Talk to me! I know some of you have been here.

Thank you for your kind words. I am 58; soon to be 59 and never thought such a choice about a body part would be so harrowing.

I think one question, that I’ve not found an answer to, is regarding the prevalence to which this stealth cancer finds a new home in other organs ( in pts with ILC breast cancer) and what the morbidity/mortality is for that aspect. We only hear the stats that support the breasts (no pun intended, but still chuckle). These are questions that would haunt me if I do lumpectomy, I just know it.

Congrats on 50 years! I have another 15 till I get there. I wish you and your husband many more years of happiness and health.