1. < Breast Cancer

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

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

hollyng | @hollyng | Oct 10, 2023
In reply to @ilc67 "https://youtu.be/7J1qGi863oY?si=WRtu18nqngLnebYs FES-PET scan. Please go on this link, research everything about lobular and doctor Ulaner. He..." + (show)
@ilc67

FES-PET scan. Please go on this link, research everything about lobular and doctor Ulaner. He has done so much research and is so up to date with the latest techniques and imaging for US. He is a radiologist and knows what to look for if there's lobular. I actually hired him a couple years ago simply to look at any imaging scans I have. He is in California, I am in Florida. Before I leave a diagnostic center, I get two CDs. One for myself and one to mail to him.

I'm not sure who or what qualifies for this particular test, but if it works, we should all have access to it. We have to be our own health care advocate, just because the doctor doesn't want to give it to you, check your rights and see if your insurance will allow it. Or find a doctor who will give it. Not sure what the injectable is, be sure to check with your other doctors if you have any kidney or liver issues. I'm in the same boat, just starting to look into this

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Thank you for this video. I am not familiar with FES-PET scan but will now research this.

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hollyng | @hollyng | Oct 10, 2023
In reply to @hollyng "Wishing you well. What is LBC?" + (show)
@hollyng

Wishing you well. What is LBC?

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Sorry Lubular Breast Cancer. They called mine Invasive Lobular Cancer so I did not recognize.

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mrsth | @mrsth | Oct 10, 2023

Great idea. I would be very interested.

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jaf123 | @jaf123 | Oct 11, 2023

I was diagnosed with metastatic lobular BC which made its way to my gut. I’ve been on Ibrance and fulvestrant for 18 months and scans are stable…last set 9/12 CT chest, abdomen and pelvis. My markers are gradually increasing for the last 5 months but I’m still in a range that doesn’t set an alarm. I feel no different either. Yet I can’t help but think that the CT scans could be missing something. Suggestions welcomed. I live in NJ, oncologist is in NYC, but I’m considering going to a lobular specialist. Can anyone recommend one please? Thanks in advance…wishing you all the best!

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2 replies
hollyng | @hollyng | Oct 13, 2023
In reply to @jmh22 "Lobular makes up about 15% of breast cancers. The LBCA (Lobular Breast Cancer Alliance) is working..." + (show)
@jmh22

Lobular makes up about 15% of breast cancers. The LBCA (Lobular Breast Cancer Alliance) is working on increasing awareness and research. I'm going to the International ILC Symposium in Pittsburgh next week where latest research into scanning and therapy will be presented. A lot of people are working towards making treatment and imaging specific for lobular

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I look forward to hearing about the International ILS Symposium. Thank you so much.

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hollyng | @hollyng | Oct 13, 2023
In reply to @joiful "In May 2021, I was diagnosed with invasive lobular carcinoma (ILC) in my left breast and..." + (show)
@joiful

In May 2021, I was diagnosed with invasive lobular carcinoma (ILC) in my left breast and both IDC and DCIS in my right breast. The nodules were so small that it finally took an MRI to confirm the need for a biopsy. Even though the surgeon initially suggested bilateral mastectomies, I followed my intuition and chose bilateral lumpectomies. Stage 1, clean margins and clean lymph nodes. I had 5 consecutive days of radiation.
I’ve been on Letrozole for the past year. There have been numerous side effects from the Letrozole along the way; however, my system seems to be righting itself.
I do both strength training and yoga twice a week, and meditation. Going to counseling weekly. Eating as healthy a diet as I know to do. Have discarded 35 pounds and feel great.
My Mammogram and MRI this year were good. I thank God for where my current health is.

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Hi: I am scheduled for the Fast Forward Fractional Radiation also. 5 days. I am hesitate and waiting on the onco score. Can you tell me about your experience with the 5 day. Were you in a prone position? Thanks so much,

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1 reply
hollyng | @hollyng | Oct 14, 2023
In reply to @jaf123 "I was diagnosed with metastatic lobular BC which made its way to my gut. I’ve been..." + (show)
@jaf123

I was diagnosed with metastatic lobular BC which made its way to my gut. I’ve been on Ibrance and fulvestrant for 18 months and scans are stable…last set 9/12 CT chest, abdomen and pelvis. My markers are gradually increasing for the last 5 months but I’m still in a range that doesn’t set an alarm. I feel no different either. Yet I can’t help but think that the CT scans could be missing something. Suggestions welcomed. I live in NJ, oncologist is in NYC, but I’m considering going to a lobular specialist. Can anyone recommend one please? Thanks in advance…wishing you all the best!

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Mayo in Rochester has lobular oncologist.
Prayers for you. I too have ILC and am treated at Mayo in Fl.

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1 reply
hollyng | @hollyng | Oct 14, 2023
In reply to @hollyng "Hi: I am scheduled for the Fast Forward Fractional Radiation also. 5 days. I am hesitate..." + (show)
@hollyng

Hi: I am scheduled for the Fast Forward Fractional Radiation also. 5 days. I am hesitate and waiting on the onco score. Can you tell me about your experience with the 5 day. Were you in a prone position? Thanks so much,

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I qualify for the 5 day also. I go to Mayo Fl.
It will be in a prone position. Can you please share your experience?
Thank you.

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1 reply
deb23 | @deb23 | Oct 14, 2023
In reply to @jaf123 "I was diagnosed with metastatic lobular BC which made its way to my gut. I’ve been..." + (show)
@jaf123

I was diagnosed with metastatic lobular BC which made its way to my gut. I’ve been on Ibrance and fulvestrant for 18 months and scans are stable…last set 9/12 CT chest, abdomen and pelvis. My markers are gradually increasing for the last 5 months but I’m still in a range that doesn’t set an alarm. I feel no different either. Yet I can’t help but think that the CT scans could be missing something. Suggestions welcomed. I live in NJ, oncologist is in NYC, but I’m considering going to a lobular specialist. Can anyone recommend one please? Thanks in advance…wishing you all the best!

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ILC here. I'm going in for second set of follow up imaging 11/10, CT of chest, abdomen, pelvis, plus bone scan. I'm wondering what specific markers are checked and watched for you? Markers have not been mentioned for me, and I think that is an important point to bring up at my next appt.
Good luck to you, and all of us.

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1 reply
jaf123 | @jaf123 | Oct 14, 2023
In reply to @deb23 "ILC here. I'm going in for second set of follow up imaging 11/10, CT of chest,..." + (show)
@deb23

ILC here. I'm going in for second set of follow up imaging 11/10, CT of chest, abdomen, pelvis, plus bone scan. I'm wondering what specific markers are checked and watched for you? Markers have not been mentioned for me, and I think that is an important point to bring up at my next appt.
Good luck to you, and all of us.

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I get the same scans as you 4x a year. My doctor watches the typical CEA and cancer tumor 27-29. I just saw her this week and she explained what she has said in the past… they are not a reliable indicator of disease. The scans are stable as is the way I feel. I’m still interested in a lobular specialist in my area though. Wishing you the best.

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