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Diagnosed today - advice greatly appreciated!

lvla Member Posts: 20
edited January 2022 in Just Diagnosed

My mom was just diagnosed today. She is 76 years old. Invasive Lobular Cancer, ER+ (79%, Allred Score 8), PR- (0.15%, Allred Score 2), HER2- (Score 0+). Ki-67 was not tested. Grade 2 (combined histologic grade 7/9). Lymph notes are not known yet but skin and chest wall are involved so it's at least Stage III. Will have bone scan, chest/ab/pelvic CT and breast MRI in a few days. Lab drawn for CA 27-29 today.

06/2019, she started to feel an area of hardness on the left breast. Targeted ultrasound in that area did not report anything - BIRADS 2. Annual mammo/ultrasound in year end 2019 and 2020 reported BIRADS2 and BIRADS1. During this time her left breast still felt kinda weird, but as the ultrasounds did not show anything, we did not think better to get additional exams such as a MRI. My aunt passed away at 64 due to breast cancer. We should have been more alert.

A month ago the Gyn saw some skin redness and texture/shape change in that area. Mammo/ultrasound shows a 1cm lump on inframammary fold, BIRADS 5. Did a biopsy at a surgeon last week. Result came back today confirmed cancer diagnosis. The surgeon arranged us to meet with a medical oncologist right away and we got some helpful information.

Surgeon and MO do not recommend surgery (mastectomy) right now because tumor is attached posteriorly to chest wall and immobile. The MO suggested therapies trying to reduce tumor size and hopefully detach it from the chest before surgery. MO said ILC is often under-estimated on ultrasound and he believed the actual lump size could be larger than 1cm as there is already a few cm of skin involvement.

MO ordered the tests above and discussed a few paths: 1. Chemotherapy. 2. TC chemotherapy which he said is more mild. 3. Hormone therapy - Letrozole + Verzenio. He would use the 3rd approach due to her age and heart conditions (Atherosclerosis, high blood pressure, high cholesterol). But he said the oral hormone drugs could take 3-6 months (if they work) before surgery is possible. And that hormone therapy would be most effective for ER+/PR+, but she has PR-.

The MO we met today explained things clearly and acted quickly to arrange for the additional tests. But he is a hematologist/oncologist treating different cancer types at a local hospital. I felt we should go to a team dedicated to breast cancer at a large NCI cancer hospital. I just started reaching out to MSK, MD Anderson, and Dana Farber today. They told me new patients scheduling takes 2 weeks. We are also 1 hour's drive away from Moffitt cancer center in Tampa. But at this point we are willing to fly (despite the current risky pandemic situation) to a cancer center with the best reputation in breast cancer treatment.

It's a major decision so any advice and suggestions would be greatly appreciated!!

1. Any recommendations for specific doctors (oncologists/surgeons) at the above 3 cancer centers? Which of the 3 would you recommend? Do doctors have different specialties based on breast cancer types? Or some doctors are more experienced in treating elderly patients? The schedulers said they would try to match doctors with the cases but will also take requests for specific doctors.

2. Should we proceed with all the tests (bone scan, CT, etc.) locally and bring the images? Or should we wait and do the tests at the cancer center in 2 weeks? The schedulers said their radiologists will read the images but I'm worried if anything could be missed locally (no confidence since last 2 years' mammo/US did not report anything while the tumor has been there).

3. Any suggestion on additional tests to get? The pathology lab did not test Ki-67 - can this be re-tested? Any recommendations for hormone therapy, targeted drugs or combined therapy that worked well on similar cancer types/situations?

Thank you!!!


  • alicebastable
    alicebastable Member Posts: 1,939

    Ivla, it helps if you stick to one thread until your mother has a treatment plan, then you (and/or she, I hope) can post in the various relevant threads for her treatment.

  • spookiesmom
    spookiesmom Member Posts: 8,168

    If you’re an hour from Moffitt go there. I am too, is my plan B. They are one of the best in the country.

  • kbl
    kbl Member Posts: 2,682

    Ivla, I’m sorry about your mom. You are wonderful at helping her navigate. I am also an hour from Moffitt. I went there for my second opinion but don’t actually have my treatment there. Are you on the Pinellas side or the Tampa side?

    Is your mom having any other pain, say in her back or any other symptoms? When I was diagnosed, I had MRIs of my spine. Please note imaging is not helpful for me, as I have numerous lesions that are very small. I think it would be very important to make sure it hasn’t spread to other areas. I think a CT and bone scan are a good start. I think getting them locally would be okay. They can always be read again at a second opinion facility.

    If you do go to Moffitt, my second opinion was with Dr. Ricardo Costa.

    Please keep us posted.

  • lvla
    lvla Member Posts: 20

    We are in Orlando with 1hr-ish drive to Tampa. I made an appointment to see a medical oncologist at Moffitt in a couple weeks. The additional test results should be available by then.

    Thank you ladies so much for the kind wishes, suggestions and advice. As suggested I will keep future replies to my other thread at the board "Diagnosed and Waiting for Test Results".

  • msphil
    msphil Member Posts: 185

    hello sweetie I know your anxiety most of us here so we are here for you. I had 2nd opinion and my team decided 3mo chemo before and after Lmast we were planning our 2nd marriages so knocked me for a loop.afert chemo got married then rads for 7wks then 5 yrs tamoxifen. Praise God 27yr Survivor and also 27 yr Anniversary. Hold on it does ease up somewhat. We are here for each other.msphil