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

Seems to me you do not have both types of cancer; I bet what your diagnosis means that you have IDC but the growths within your ducts are starting to move toward your lobules (glandular tissue). I would contact your provides and ask if the above is true... Good luck in your journey!

Hello again ccc1965:
Yes! I can use my affected arm. I have stage 4 breast cancer (invasive lobular carcinoma, triple negative), mets to lungs, retroperitoneum, contralateral breast and lymphatic system.

I am 71 years old and ride my horse several times a week. "Riding" included grooming, putting on her saddle. etc. I do all of the normal things around the house--emptying the dishwasher, making the bed, laundry, taking out the trash and so on. Although there is some info that warns against using the affected arm for anything very heavy, my experience was to use the arm. I am careful not to get cuts on the affected arm, eg) wear gloves while gardening, etc. to avoid possible infection. But I use the arm, not too much at first and did not overdo it after surgery and radiation. After surgery and radiation, it was a while until I could do a lot of things. I had physical therapy for about 10 sessions after the mastectomy. The arm is not quite normal strength, but works works pretty well. More of my arm use issues are due to the mastectomy and radiation, and less due to the lymphedema.

One of the hassles of lymphedema is wearing the compression garment. However, I wear it every day, all day. I believe that wearing the compression sleeve every day has helped prevent the lymphedema from getting worse. Another downside is how it looks--like an ace bandage--and that clothes do not slide over it well. (Apparently these is no type of compression sleeve that is slick/smooth!) Another issue is that the upper arm is bigger so some blouses do not fit over the upper arm. While annoying, this is not a major hurdle. You can try different styles of tops or take a blouse to a seamstress/dry cleaner to see if the sleeve can be adjusted.

Again I urge you to contact your surgeon or nurse immediately if you think that lymphedema is starting.

Please let me wish you the very best and I hope all goes well for you!

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

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!

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.

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 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!)

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...

Thank you

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.