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

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.

Thank you so much!!

Hi @ahigge, you may also be interested in this related discussion:
- Wait time from diagnosis to surgery
https://connect.mayoclinic.org/discussion/wait-time-from-diagnosis-to-surgery/
How are you doing?

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!

Hello,
I was diagnosed with ILC on Nov 3rd. Met with a team of doctors on Nov 15th. They are sending me to do an breast MRI because of how dense my breast are. They said that one good thing is that at least this a slow growing cancer, I don’t know how that is good, it’s still growing.
I’m trying to get a second opinion from Dana Farber in Boston.
Does anyone have any advice?

I know how you feel! It is so hard to wait for surgery. I had ILC that was stage 1 in L breast and IDC that was stage 1 in R breast. No lymph node involvement. I was to have the bilateral mastectomy at Mayo 6 weeks after diagnosis but when I arrived at Mayo I had a big hematoma in my L breast from the MRI guided needle biopsy that I had in my hometown. Because of that huge hematoma they said they had to wait for surgery because that hematoma could hide something in the pathology that could dictate my treatment. I was so disappointed that I had to wait! They said I had to wait 5 more weeks for the hematoma to clear. They said it was ok to wait because my Ki67 score was 5% which is low. That test shows aggressiveness of the tumor. Did you have the Ki67 test? You can look in your pathology report to see if you did. If the score is 15% or over it shows it's more aggressive and you would benefit from chemo. Those extra 5 weeks of waiting were difficult but I figured I was at one of the best places to treat breast cancer and they would know what was best. So my bilateral mastectomy was 11 weeks after my diagnosis. During those 5 weeks of waiting, besides a whole lot of prayer, I started doing what I call Optimistic Self Talk every single day for 15 minutes. ( I wrote about it already on this site). I lay on my back, eyes closed, palms up and before the surgery I would repeat over and over " Love, Light, Optimism, Healing and Wellness. My tumors are shrinking, my lymph nodes are staying clear, the surgery will be successful, I will be well and healthy.etc. Optimistic phrases like that. I would set my phone timer for 15 minutes and keep repeating those phrases over and over till the 15 minute was up. It helped me so, so much. I still do it everyday but now I repeat the Love, Light phrase plus "I am staying in remission, I am staying free of cancer and I am staying free of rogue cancer cells. All is well in my body, I am just fine, Thank You for my healing and healthy body. "
I read a lot about the mind body connection so I believe this really helps us. I did read is that it's best to have your surgery within 12 weeks of diagnosis if possible. I hope you will get you surgery date very soon. You can try calling your Dr.'s office every couple of days. As my Mom used to say The squeaky wheel gets the grease." Sending Love, Healing and Wellness Wishes your way. ❤️

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!

Mayo Fl does prone.

I had my mastectomy on Halloween. It went well. I have very little pain. Still have drains in. I think it depends on the lymph nodes they removed if I'll need more treatment. Hopefully, the results will be in on those this next Wed. at my follow up appt. I'm hopeful and feeling good about everything. So far.