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

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!

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

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.

Thank you

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...

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!)

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!

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.

Dear ccc1965:
Regarding lymphedema:
1.). How typical? As you noted, it depends somewhat on the number of lymph nodes removed, a body's reaction, etc . There are many factors. I had 5 lymph nodes removed from the axilla and upper arm, and have lymphedema in my right arm. Everyone is different.
2.) Timeline? Can happen pretty fast. Within 4 days of my mastectomy I started treatment which consisted of using a compression sleeve. Some people get lymphatic massage--helpful to some and not others. However, if you even think you may be developing it, if you even have a hint, ontact your surgeon right away--don't wait. Your surgeon can get you into the correct compression garment which is key to preventing a worse case of lymphedema.
3.) Treatable? It is treatable with compression garments and lymphatic massage, but not presently curable. The leader in lymphedema treatment and research is Dr. Stanley Rockson at Stanford Univ. He has interesting and helpful YouTubes. He is also doing research and has developed a drug to address lymphedema which is still in clinical trials.
4.) Curable? As stated, it is not presently curable.
5.). LDex? I have no info on the L Dex assessment.
Here's wishing you the very best!

olivia7850. Thank you!! Such helpful information!! Are you able to use your effected arm?