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

That's great news! They consider Verzenio a targeted therapy. I would talk to your oncologist about what they have in mind and any other options so you can make an informed decision.

I’m grateful I qualified for the accelerated radiation treatments 5 day’s..500 rems.. 🙏🏻

Hmmm...I would want to investigate "other possibilities." I was diagnosed in September with "osteonecrosis of the left femoral head and neck" via MRI without contrast. In February I recieved my diagnosis of "pleomorphic lobular carcinoma with neuroendocrine features." ER (95%) and PR (70%) positive HER2 negative, Ki67~70%(Pathology went to Cleveland Clinic for second opinion.) Tumor size by ultrasound 3.1 cm, initially grade III. Started letrozole and Ibrance on March 2 & March 9 respectively to shrink the tumor and halt disease progression prior to CT scan and surgery.

CT scan showed this:

MUSCULOSKELETAL ABDOMEN PELVIS: Mixed lucent and sclerotic appearance of the
anterior aspect of the left femoral head, with slight cortical collapse, in
keeping with osteonecrosis. No right femoral osteonecrosis. Slight leftward
curvature in the lower lumbar spine. Severe disc degeneration at L3-4 and
L4-5. Small densely sclerotic foci in the right iliac bone are almost
certainly bone islands.

Of course, I already had a comparison MRI and diagnosis. My onco and radiologist were not concerned about the "lytic and sclerotic lesions". So..this could be and example of the "other possibilities" that could masquerade as bone mets.

I am 69. Had lumpectomy on April 5, reexcision (only to find NOTHING) on April 19. Lymph node negative. Currently on an Ibrance holiday until after radiation (15 whole breast 5 targeted to tumor site). I start Ibrance again in July for a year...(😪) Letrozole probably for 10 years.

I would never venture to discount a Cleveland Clinic tumor team, but they do look at everything through a cancer lens, which might cause them to rule out the other possible reasons for those sclerotic lesions. My husband had a bone biopsy when he had prostate cancer that showed healed trauma from a slip on the ice and subsequent contact with the brick steps when he was in high school. Not a fun way to confirm what he already told the docs.

My post surgical tumor size was 2.3 cm. The Ibrance/letrozole was effective in shrinking the tumor by 20% in just one cycle. I fully expected to be stage 4, but my current stage, (according to the radiologist) is IB...

I hope this helps a little. Feel free to contact me privately.

Thank you for sharing. There's a radiologist who is"certain" it's mets. A bone biopsy done in buffalo showed very rare atypical cells with gata3 signal, not enough to make a diagnosis. The CC pathologists said suspicious because of lcis and to correlate clinically and radiological. No symptoms, alp WNL and all tumor markers WNL. I suggested the same thing to my oncologulist (radiologist always looking for cancer) but she deferred to him. Interesting since other than sclerotic lesions on CT all other radiography has been negative invluding the FES PET that was going yo be definitive. All of this testing has taken 4 months and next Tuesday I have the second bone biopsy, this one at CC. Now I have to hope that 4 months later it's still negative. Surgery is scheduled for 6/2 if negative. It's been a long road but for someone who works full time and on treadmill daily, I don't believe I have bone mets.

I was 1st diagnosed with ILC in 2017. I had a lumpectomy followed by 32 radiation treatments. All was good fast forward July 17 2023 a regular mammogram followed by ultrasound, biopsy and MRI and I have a recurrence of ILC. Now facing bilateral mastectomy just waiting on a date. I find myself wondering why me. What if I forget the cancer and do nothing. I really dont want my boobs cut off.

Looking for a medical oncologist who specializes in lobular Brest cancer. Any suggestions????

It's so difficult with lobular. I have no symptoms. Bone only de novo mets. My FES & FDG PET were both negative. Bone scan negative. Sclertic bone lesions are seen on CT but don't light up. I have another PET upcoming and if there is no progression I can have double mastectomy. With lobular, if you can't see it does it mean it's not there? My breast doesn't even light up on PET. Mastectomy? If it will help. I don't know.

I'll be seeing Dr Kruse at Cleveland Clinic in a couple weeks. She's a lobular specialist and I hear she is good.

Thank you
I was hoping to find a lobular specialist a bit closer to me. Mayo, Milwaukee, or Chicago. I will keep searching.

Why can’t I find a medical oncologist who is knowledgeable and focusing on lobular breast cancer. I’m just getting very tired of hunting.