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

I have recently been diagnosed with invasive lobular carcinoma in my right breast and it has also been found in the closest lymph node near my right breast, verified by biopsy of breast and biopsy of lymph node. I have heterogeneous dense breasts. I am considered "high risk" because with dense breast getting clear pictures with a mammogram and identifying anything unusual is very difficult. For the last 5 years, I have had the 3d mammogram or tomosynthesis vs. a regular mammogram. I was on top of it, annual testing and additional testing when requested if something looked different from the 3d mammogram from the year before. I did everything right or everything my breast care specialists suggested/requested of me.

This screening was not enough to find my lobular cancer diagnosis before it traveled to my lymph nodes. There is so much more to be concerned about once the cancer travels outside of the breast.

In my opinion...I believe if I had annual MRI's the cancer would have been found earlier and potentially not spread to the lymph nodes. PLEASE, PLEASE, PLEASE advocate for yourself when it comes to breast care. Go the extra mile to get the breast cancer screening you feel is right for you. FYI...Getting insurance to pay for the MRI can be an issue so make sure you have your DR's on board and that they are willing to help push your insurance to cover the cost.

YES, lobby for the MRI.

I hope my story helps you and many others to get the MRI.

New to journey. 9.29.22 i went for annual mammogram. I have elected for 3d since it became available (about 5 yrs) as my grandmother passed from ovarian cancer.. because of her i fought for annual mammogram since I was 36. On 10.12 22 I was diagnosed with Invasive Lobular Carcinoma and Invasive Lobular Carcinoma in Situ in my right breast. I am 59 1/2 and post menopausal for 7 yrs. I had lumpectomy on 11.1.22 . The surgeon believes between needle byops and his magic that they got it all. Took 1st lymph and did not find spread. Now waiting for my 1st medical oncologist and 1st radiologist appt on 12.7 22 and 12.9.22 repetitively. I am worried about all of it. I have an extremely stressful job and am sole bread winner. On top of it, my significant is having heart issues (63 yrs old). How did any of you do during treatments keeping up with all the obligations in life? Am I freaking out for nothing? I could of retired 1.1.23, but not now. Cant afford it..oh yeah besides breast cancer..having to have all top teeth pulled (today) for dentures....just feel like the wheels are coming off the bus..

@crichey Hello - I am so sorry to hear that you have joined the ranks of having breast cancer. Hearing the news is devastating, to say the least. In regards to having to work through treatments, it is different for everyone. For me, I chose to continue to work through surgeries, chemo, and radiation. Did I have to take time off....yes. Did I have the support of my coworkers and family/friends? Absolutely! Radiation did not cause me any issues. The surgeries (lumpectomy, and subsequent surgery of needing clear margins and reduction/lift) were a little more difficult, but manageable. Chemo was a different story. I was able to schedule my infusions on Thursdays, which allowed me to recover Friday, over the weekend, and Monday. I would go back to work that Tuesday until the next infusion. By doing this, I took a few days off every three weeks to deal with chemo side effects and then "function" at work. It wasn't easy but I did what I had to do. Hopefully you have a job where you have some flexibility - maybe work from home some days? Don't be afraid to ask your coworkers/managers for what you need....at this point, your health takes priority. My advice, enlist the help of others to help with the other obligations in life....friends and family WANT to help. Tell them what you need and you'd be surprised how gladly they step up. I was working full-time, babysitting my grandchildren during weekends/later afternoons, and tending to other family obligations. The hardest part was telling my daughter I could no longer babysit because of how tired I was and not feeling well due to chemo. Also, chemo depletes the immune system, so being around my grandchildren was not safe. Honestly, I felt horrible that I was stepping back, but it was also a relief handing over some of life's obligations to others so that I could just focus on healing. I wish you well....take care of yourself - others are relying on you to take care of yourself now so you can be there for a long long time.

Thank you for the sanity check. I appreciate your input. I am sorry you also went thru this as well.

I have been diagnosed with Invasive Lobular Carcinoma (ILC) also found in Lymph nodes. I am seeking a second and possibly third opinion. If anyone has suggestions, I would appreciate the input.

Obviously MAYO is a consideration but I live in Michigan (MI). If anyone knows of any ILC specialists in the the MI area, I would appreciate the information.

I am willing to travel to get the best care, so please don't hold back on your recommendations.

Thank you and my best to all on their journey.

I’m sorry you’re going through this.
I was diagnosed with triple negative bc at 49 and I am now 68. I had a lumpectomy, chemo and radiation. You can do this. It can be overwhelming some days but your feelings are valid! So keep plugging away and take one day at a time. Plus they’ve come a long way with the treatments. Be well.
And prayers work ?

I’m sorry you’re going through this….
I don’t have a doctor recommendation but I will tell you they have come a long way with treating bc. I had a pretty aggressive bc 20 years ago. I’m going through.
You can do this!
I’m sending you prayers for courage and peace.

Thank you for the encouragement and prayers. I appreciate that you took the time to post a message.

May I ask what your "treatments" were? I had a lumpectomy for ILC 11/30 and just found out negative node - very relieved! I'm 57yrs - 1.8 cm and grade 2 with margins positive for atypical which I guess is fine as surgeon said no need for additional surgery. Next appt in 2 weeks with a radiation oncologist and should have oncotype tests back by then. Did you get 2 opinions regarding radiation. I'm near Boston so I have a few options which is great but all so confusing as it the docs make it sound like it is very routine. I dread the anti hormone after reading about side effects but so glad to hear you are hanging in! Any advice appreciated. Thanks so much!

My ultrasound following mammo showed the lobular tumor. A biopsy confirmed it and it was a rather large oblong shape 2 x 3 cm. I had chemo before a mastectomy, then radiation and more chemo. I started chemo in July of 21 and finished August of this year. My cancer was stage 2 based of its size. I had one lymph node removed and it was not cancerous. I did not seek a second opinion regarding radiation. I just wanted to get finished! I did read about treatments and radiation was suggested because the pathology showed live tumor cells in the removed tissue.
My cancer was HER 2 + and hormone negative so no anti-hormones for me.
Good luck with your treatments, I feared radiation the most and was surprised that it seemed to be the easiest to endure. It has tightened my skin and may cause issues later, but I'm living each day as it comes. Who knows what the future will bring anyway.