Moore Susan Anderson Maria Thompson Jose

Thank you for making these videos 🥰

Thank you for spreading the word about this type of breast cancer. I hope it gets more funding!!

Same here. I'm lobular de novo metastatic with bone metastases since 02/2014 at the age of 50,5 years. I'm treated in the oncology department if the breast centre of the university clinic of Vienna.

I’m puzzled by the idea that lobular breast cancer is the second most common kind of breast cancer. It’s not one kind of cancer. Are you saying it’s the second most common after ductal invasive carcinoma? That isn’t saying much if there are 3 kinds as I understand (IDC, ILC, and ductal carcinoma in situ). What percentage of breast cancer patients have ILC? If you look at the different cancer receptors, where do hormone positive, hormone negative, HER2 positive, HER2 negative ILC fall?

İt is great that women are taking a stand on the issue of ‘difficult to diagnose’ breast cancers (BC). I would very much urge your groupe to ask the doctors you are in contact, to convay to you the latest articles (articles in the EJR of the last 2 years) of Dr. Laszlo Tabar on ‘ILC’, where different prognosis is shown for the different 2 types of ‘ILC’, which are mesenchymal tumors in origin who are comprized of stem cells, where the pathological report is so crutial in the outcome. You could ask Dr. Tabar himself to explain his statistics of 39 years duration.

I don't feel very hopeful after watching this video but admire all the oncologists and oncology researchers for working in this field because oncology is one of those fields that the more you learn the less you know and it can get frustrating sometimes. Keep going and keep researching and blessings to you all 🙏

Thank you for sharing Deborah`s story. May she rest in peace. I keep hearing stories of patients being classified as stage 1 or 2 but then it`s discovered few months later that it is stage 4 MBC specially in ILC. Doctors are very hesitant to order CT and PET scans due to insurance issues, but I think it`s something that patients should advocate for during the early stages of diagnosis

I found out when I was 62 that I have a fantastic doctor Dr. Nicholas Tranakas, MD Fort Lauderdale Florida. He found ILC right under the nipole stage 1. I had a double mastectomy on 12/28/22 no reconstruction. How come the doctors do not do ultrasounds after double mastectomy? I am on anastrozole they removed the cancer no lymph nodes involvement. Thank you.

Do blood tests ( Invitae & Signatera ) only used in metastatic setting or can it be used for early-stage breast cancer as well to monitor reoccurrence?

Thank you for sharing this story. My daughter age 45 at the time was dx with stage IIIB Lobular Breast cancer. She had a double mastectomy, reconstruction, radiation and chemotherapy in 2019-2020. She is on long term hormone therapy and doing well at this time under the care of doctors at Johns Hopkins. Your story of your wife being diagnosed Stage I lobular breast Cancer with Metastasis to her liver within one year is very scary. I am so sad to have heard this. We are very blessed that our daughter has received excellent care and is doing well. God Bless.

Excellent lecture!! thank you!

A great video. Thank you very much.

How refreshing to hear an oncologist state that ILC is misunderstood. My doctors keep telling me that it should be treated the same as ductal cancer. They insist that a standard mammogram is the “gold standard” for surveillance. Not only have I had a partial mastectomy for ILC diagnosis, I also have heterogeneous dense breasts. I have had to fight very hard for MRI’s. No matter how much advocacy I do for myself I feel I am as misunderstood as my disease.

I just had a mastectomy after diagnosis of Invasive Lobular Carcinoma .. with no lymph invasions .. twelve years after having a lumpectomy .. so I am back with five years of oestrogen blockers again! … at 77 years old! My symptoms were on the scar of the lumpectomy .. out front thankfully. All good

Thank you all for your valuable work. LBCA is such an important organization .

Thanks so much for your crucial contribution to this team, Brenda! I look forward to meeting you in person someday.

Minnie spoke about how important the ILC Symposium was for her-all of the sessions are here on KZbin from that symposium if you search for “ILC Symposium”!

adenoma myoma lipoma lymphoma neuroma. hail the lord !

What's the long term effectiveness of Tamoxifen for POST menopausal women with DMX.?

Wonderful research. What is most effective way to get GR increase in our body. This is so fantastic. Thank you for your incredible research and hard work to save lives and learn more about this lobular cancer.

This was so informative. I loved seeing my surgeon again...Dr McAuliffe. She speaks to precisely and clearly.

Thanks for all the information and the hard work you do for ILC research Looking forward to target therapy via wgs of tumour!? Great you highlighted tamoxifen still works I changed to tamoxifen after trying a couple AIs Feet and hands collapsed and felt like an old women over night Keeping fit is more important than staying on an ai For me Because Being able to Lift weights and do loads of zone 2 Gives me such joy

In 2006 was diagnosed with an “Invasive lobular tumor encased in dense breast tissue”. I think a key towards diagnosis is to educate the public about how a Lobular tumor may present. My tumor formed in a breast that contained several benign cysts around the nipple. The cysts became large and painful, with the rest of my general bilateral breast tissue, before every period. At some point, my right breast had heavy tissue deeper in that breast. The tissue had a sloppy feel, and got more painful before and after every period. I also began having a heavy period every two weeks. After every period this dense tissue git bigger and bigger. I NEVER KNEW THAT BREAST CANCER COULD BE ANYTHING BESIDES A LUMP. I NEVER KNEW FREQUENT PERIODS WERE A SYMPTOM OF BREAST CANCER. I NEVER KNEW THAT BREAST CANCER COULD BE PAINFUL. That tumor was six centimeters by the time I had a diagnosis. I went to a major teaching university for treatment: chemo first to shrink the tumor , a total mastectomy with sentinel node biopsy while I was on the table, a saline implant in the same operation. I never had scans to find metastasized tumors. I didn’t ask, but still assume that if the chemo didn’t each any metastasis, I would be a goner anyway. By the time I was diagnosed, I could feel the weight of the tumor pulling in my arm pit. The Sentinel Node biopsy located eleven arm pit lymph nodes attached to the tumor. Three were positive. The chemo I had was Adriamycin, Cytoxin (4 infusions two weeks apart) and Taxol (4 infusions two weeks apart). My hormone markers were highly estrogen and progesterone positive. I had been using a compounded progesterone cream on that breast to reduce pre-period pain. I had also been thumped on that breast by a man at a Christmas party 18 months before the diagnosis. Now I understand why women in Wagner’s operas wear metal bras. A nurse told me that my chemo was The Gold Standard for estrogen positive breast cancer. I don’t know if chemo prescriptions are different for lobular or not. I didn’t work or drive for six months through my treatment. The chemo was tough, but I had to do all I could to live. I was very self-centered about my needs, and my family was totally on board with helping me. I hope this helps someone get an earlier diagnosis. And that thump? He didn’t leave a bruise, so I didn’t go to the police at the time. Law enforcement has a machine that can find sub-dermal bruising, however.

Why does no one discuss Metabolic Therapy as an adjuvant treatment?

Cheers to you doctor osagh, I celebrate the way you do your job. If it was up to me I would give you the award of being the best herbal doctor. Thank you for cureing me from cancer with your herbal medication am so grateful........😘😘

Diagnosed over 5 years ago with ILC no surgery no drugs, I was told in Jan 2020 that I would be gone in 6 months, still here. I BELIEVE OXALATES are a BIG part, but nobody wants to talk about it. I stay away from pHARMa Doctors now! Believe in yourself!

Just diagnosed with ILBC keep up the good work ladies. We out here appreciate you both. Thank you

Great info! Thank you!

I was just recently diagnosed with ILC Breast Cancer and I am only 39 and I am a single mother with four children. If you have any advice or help with this please let me know.

Thank you for putting this session together. Excellent discussions with Dr Mouabbi & the advocates.

Thank you. I have invasive lobular carcinoma went thru 3 surgeries lumpectomies then radation will begin but before I started radiation I found out that the specimen surgeon sent in was just what the pathologist could view. I am 64 this all started at 63 but even fast going in treatment I was alone the whole time I have a little dog she's precious. But I remain positive Only God could have pulled me thru. Long long different struggle. Cancer changed my entire being just different I am. Again thank you I appreciate The Invasive Lobular Carcinoma breast cancer isn't studied enough We need more study. I feel as a ILC that yes more study should be put first and foremost.

The one i have formed a nodule. Weird. Its more than one tho

I had lobular breast cancer dec 2011,stage 3 grade 3

So Does that mean aromatase inhibitors seem to work better with lobular breast cancer ?

Thanks

I was diagnosed lobular breast cancer 2011,stage 3,mastectomy rads,I begged my doctor to remove other breast but refused to do it he said I was high risk for it to return I live in fear. From 🇬🇧.

Is this study open to women who have had ILC and then had a double mastectomy? Or do you need to have a breast still intact to qualify for the study? From the images shown here, it looks like they are looking to ID longer term systemic spread...?

Really couldn't hear what she said with all the beautiful birds singing in the background except she lives in Italy for the last 30 years.

My sister is diagnosed with ILC with ER+, but why did the radiologist performed an FDG PET scan instead of FES scan?

Why is lobular breast cancer hard to see on imaging. Does it get mistaken for benign pathology.

Really appreciate your work. You are doing god's work.

Invasive lobular carcinoma seems to be ignored even though it's the 2nd most common breast cancer.

I have lobular breast cancer with signet ring cell features and was diagnosed last year in 2021. My surgeon called me lucky because I was the one that found the two tumors in my right breast. Imaging from the mammogram was unable to depict a clear view of them because of my dense breast tissue. Thank you for creating and advocating the need to have more research.

I was told about "scarier cancers" than my invasive ductal carcinoma. I feel fortunate to have a type of cancer that gets loads of funding, so it's manageable. They were even gonna CURE me (not remission, but a CURE) before they found out it's metastatic. Lobular breast cancer needs the same kind of love. It feels so unfair to have treatments and even cures for "these cancers" but not for "those cancers." I know it's probably more complicated than just fairness, but I want a better chance for ALL cancer patients! Thank you for the work you're doing. You're going to extend many lives (and the quality of those lives) with your research!

My mom had ovarian cancer it's tied. ?

An excellent video and I hope many investigators will look this video

An excellent video highlighting the need for more research!