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.

Profile picture for llthomson @llthomson

Are you on any medication now? How old were you when diagnosed? I declined chemo because I read that it is not effective for ILC. I also am stage 3 because of its size. I had lumpectomy and radiation. I am now taking anastrozole and verzenio and wondering how many years I have...

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I was 49 when diagnosed. 78 years old now. Treatments have changed so much since I did treatment which was much more aggressive than it is now. I was on a clinical trial for letrezole ( I think related to anastrozole) and think that is used pretty commonly today. Science keeps changing and hope is always there.

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Hello,

I am hoping to get some information on Lymphedema: 1. How typical (I will have at least 1/2 of my lymph nodes removed from armpit and clavical)? 2. Is there a normal timeline for onset? 3. Is it treatable? 4. Is it curable? 5. Has anyone done LDex assessment - thoughts? (it is not covered by my insurance and would likely run $10,000 in year one. 6. Preventative measures? Thank you all!

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I was diagnosed with "invasive ductal carcinoma of no special type with lobular invasion pattern" (Stage 1, Grade 2, ER+ PR+, HER2 -, Oncotype score 6). I know this thread is about ILC, not IDC, but my question is... What is the difference between ILC and "lobular invasion pattern"? I have found differing descriptions, and I know that the pattern was enough to get the oncologist to prescribe an additional boost at the end of radiation, but I still am unclear as to the difference between this and ILC. Do I have both? Thank you! (and if this is more appropriately addressed in another thread, please let me know - thanks!)

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Profile picture for krin @krin

I was diagnosed with stage 3 lobular 28 years ago after being told for 3 years that the lump was just a cyst since no cancer evident on mammogram. More women need to know about this cancer type & doctors need to be more aware too. After diagnosis I had mastectomy, chemo & radiation. Then participated in several clinical trials for estrogen blockers. It’s been rough, but I’m still kickin’! Stay positive, question your doctors, find a different one if you’re not comfortable (I did). You can handle this!

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Are you on any medication now? How old were you when diagnosed? I declined chemo because I read that it is not effective for ILC. I also am stage 3 because of its size. I had lumpectomy and radiation. I am now taking anastrozole and verzenio and wondering how many years I have...

REPLY
Profile picture for krin @krin

Hi, I think fatigue is pretty common when undergoing any procedure. 3 1/2 weeks is not a long time. Take care and rest when you need to. Remember to drink lots of water.

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Thank you

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Profile picture for sharonandkathy @sharonandkathy

Here I go again, wondering if my extreme tiredness will go away. Had Lumpectomy 3 1/2 weeks ago. The morning is better in A.M and then continues to drop around noon. The worst happens from 2 p.m. Has anyone else experienced this and if so, how long. Please let me know, Thanks

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Hi, I think fatigue is pretty common when undergoing any procedure. 3 1/2 weeks is not a long time. Take care and rest when you need to. Remember to drink lots of water.

REPLY

Here I go again, wondering if my extreme tiredness will go away. Had Lumpectomy 3 1/2 weeks ago. The morning is better in A.M and then continues to drop around noon. The worst happens from 2 p.m. Has anyone else experienced this and if so, how long. Please let me know, Thanks

REPLY

I was diagnosed with stage 3 lobular 28 years ago after being told for 3 years that the lump was just a cyst since no cancer evident on mammogram. More women need to know about this cancer type & doctors need to be more aware too. After diagnosis I had mastectomy, chemo & radiation. Then participated in several clinical trials for estrogen blockers. It’s been rough, but I’m still kickin’! Stay positive, question your doctors, find a different one if you’re not comfortable (I did). You can handle this!

REPLY
Profile picture for luckbme @luckbme

You deserve doctors you trust, and actually feel like they care. I'm in the midst of changing my oncologist. I tried hard to give him every opportunity; but eventually had to admit he wasn't in it for me.

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Yes it’s very important to have a doctor you can feel comfortable with and trust. I wish you the best!

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Profile picture for buckokey @buckokey

Well, being 78 I haven’t had an OB/GYN or pelvic exams for several years. My PCP is not “hands-on” and never checked breasts even though I had ductal cancer/lumpectomy in opposite breast over 24 years ago. Evidently doctors just accept radiologist report and it ends there—at least mine did! I am angry and have not talked with PCP directly. Trying to concentrate on now but it’s hard! Now oncology surgeon is wanting me to have genetic counseling but can’t get straight answers that it would be covered by Medicare/supplemental insurance. Very disheartening and frustrating.

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You deserve doctors you trust, and actually feel like they care. I'm in the midst of changing my oncologist. I tried hard to give him every opportunity; but eventually had to admit he wasn't in it for me.

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