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

Mammograms do not tell the whole story unless you have all fatty breasts. My strong recommendation is to push for a MRI! All my mammograms were also “fine” even after I was diagnosed with Stage 3 metastatic lobular breast cancer. If your breasts are dense, mammograms can’t see the cancer. Be a strong advocate for yourself. No one else can do that for you. You know your body better than anyone else. Please push for the MRI.

Thank you for posting. My diagnosis was very similar. Also had annual mammograms. As we now know, lobular hides in the density of the breast. Double mastectomy and am now in the same regimen for treatment. Chas to have my 3rd chemo last week but broke out in an all body rash after my last chemo and the rash is just too nasty to even use my port. They aren’t sure what caused it and am being treated for herpes but whoever heard of it all over the body? It’s painful and itches like crazy. Am concerned about missing a regular chemo session. 14-17 nodes were cancerous and it metastasized in the interior of the breast skin. Am 71.

Hi, I’m new here, I really don’t know what is going on with me, I had 3 months ago severe pain in my left breast, so much so I had to hold it up after taken my bra off put heating pad on it, could not put any pressure on it . I have pain in my left shoulder and skin is very weird feeling when I touch it, almost like it’s numb but not the same numbing feeling if like my hand fell asleep. I have a spot on my arm pit that just seems odd to me, had it looked at a few years ago they said it’s fine. I also have a lump in my neck on left side, the pain in my breast is no longer as painful but to touch it hurts , most days it’s just a dull pain, I do have a hard spot on it, and twice now I have had a cyst on the outside under the breast that I have had drained. I have just recently been and had a mammogram and all is fine. I don’t think it is I just feel off. I would really appreciate any help. Thank you.

I hope you have family and friends near by who can support you in what you need. I was happy to have many good friends to share my worries and concerns (through phone calls), family to be with me during treatments and appointments, someone to shop for or with me. With young children there will be a need for child care and entertainment when you are too tired to take them to the park.
You may be surprised with the support casual friends will offer or do if you just ask. Please, don't feel alone.
I also met with an oncology dietitian early in my treatments to help plan diets around some of the symptoms that might occur.
I wish you well and prayers for you and your loved ones.

Hi there. Dxed with Stage IIIc ILC (5 tumors, 10/16 diseased nodes -- diagnosis upon surgical pathology). Even the team didn't know how advanced it was going in -- I had no symptoms of bc, so I was really surprised. I had had annual mammograms with ultrasounds included. This was Feb. 2019., at age 69. Presently NED, and feeling great! You ask about the treatments: 4 mos. dose dense chemo (AC and Taxol). 6 weeks radiation, 5 days a week. 3 years Zometa infusions, every 6 mos. 2 years Tamoxifen, which I changed to 8-10 years Anastrozole based on a second opinion. I mention all these details to outline some thoughts to share: I pushed for surgery asap (ended up being modified radical mastectomy, clear margins). I did all the treatments on schedule as quickly and compactly as possible (because this does matter). I got a second opinion at a nearby cancer hospital (as opposed to just using the opinions in our local "cottage" hospital). I interviewed 2 surgeons for the job, and got the best one. Used a porta-cath instead of IV infusions (just had that out 2 days ago). Kept working throughout (this was important to keep up energy) and tried to be as upbeat as possible. I wish for you the very best, and feel free to question me if you wish!

I know quite well what you are feeling. Just hearing the word cancer puts you in a tailspin. The most important thing I can tell you is try try to stay positive. Positivity is what will get you through all this. I know it’s hard to think positive, but it is really important. Focus on your little ones and find your positivity in them. You will get through this. It is a long process, but once your treatments start you will start to feel differently . Do what the docs advise , don’t be afraid to ask questions and rest when you need rest. You will prevail from this, and it’s ok to cry. Crying releases the stress and anxiety you are feeling. I would tell myself, “ I will beat this, cancer will not win”. I am now finally starting to feel somewhat normal again. It’s been 1 year since I started this journey. I pray for you and your family? stay strong

I had the diagnosis of ILC on Nov. I had a lumpectomy and sentinel node dissection on the 18th of Nov. 1.7 cm mass..no node involvement ..sentinel removed..10 nodes checked ….margins clear. Mass was ILC ER+ PR- Her2- .Had balloon brachytherapy Dec12- 2x a day for 4 days. Fu next month with an oncologist to see about hormone blockers. I am 76 and will do my research to see about the blockers..have not heard good things.

Praying 🙏🏾

I was diagnosed at 69 years of aged. I had a 1cm lump but 5 out of 19 nodes had cancer. I had 16 chemo treatments and 25 radiation treatments. I also chose the mastectomy. My surgeon said he got all the cancer , with breast removal. I am now taking Letrazole for the next 5 or more years. . I was hesitant about taking this drug due to side effects. I have been on this med for over 5 months with minimal side effects. My oncologist told me there are at least 5 different meds he could give me( so there are options) don’t be afraid to try any of the meds because everyone is different and don’t effect everyone the same, and knowing there are options helps to ease the mind a bit, I have also learned that allot of the time it is the fillers in the drugs that effect the body, not the drug itself. I hope this helps you in making your decisions and I wish you all the best,

I was diagnosed with ILC 3 months ago. Tumor was nearly 7cm. at largest dimension, ER+, PR+, HER2 -, stage 2A, grade 2, KI 67 1-4% (depending on tissue sampled), no genetic markers or family history.
I had a total mastectomy with axillary lymph node dissection 2 months ago. 2 out of 18 nodes had evidence of cancer but cancer contained in nodes.
I was told by one oncologist that IV chemotherapy was a “no brainer” for my age and presentation of cancer. Another one told me that for lobular with such low KI 67 it would only be 5% beneficial as per the MonarchE study. Instead radiation, oral chemo (verzenio), Tamoxifen and Zolodex were recommended.
I’m wondering how others have made this decision? I am experiencing terrible anxiety and difficulty making these decisions.
So grateful to all of you for sharing here.