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

@vinette So sorry to hear this...and on Christmas Eve. Like you, I have ILC with no family history and I too am 78. I'd never heard the word lobular before! When you meet with your medical oncologist or surgeon (for me it was a surgeon) she/he will probably tell you the stage, the size of the area and that will determine the choices you have for treatment. That stage can change somewhat once you have surgery...whatever you choose. Lumpectomy was the choice I made based on what other women had chosen with a similar diagnosis. Some women choose a mastectomy if they do not want radiation. It's my understanding that chemo does not work well for lobular but others should speak up about that. Because only 15% of breast cancers are lobular, we do not have the body of data ductal patients have. I hope you'll keep us informed!

Thanks so much marshgirl24. Your comments really helped! As I learn more I definitely will be keeping in touch. And also thanks for all the hugs I've recieved.

Hi, I'm 52 and was diagnosed with stage 1 ILC in my left breast. After a MRI they realized it was 5.8 cm wide and classified it as stage 3. I'm hormone positive but HER2 negative. they originally recommended a lumpectomy and reconstruction, but now say that is not an option and I need a mastectomy and radiation. Is it normal for them to get the size so wrong? I'm very nervous about the radiation and the hormone blocker. I just cant help feel like I will never feel normal again.

Also was anyone else so tired before being diagnosed? Is this a symptom?

I'm sorry to hear about your diagnosis, and I can only imagine how upsetting it must be to go from thinking it is stage 1 to stage 3. I've read that it is common to get the size wrong because lobular grows single-file instead of in a clump, like ductal. A mammogram missed my lobular carcinoma but it was caught on an MRI. I had a mastectomy and am now on a hormone blocker, Tamoxifen, which my system tolerates well. I will go on an aromatase inhibitor once I am menopausal, which I look forward to because some studies show the AIs work better than Tamoxifen on lobular.

In the months leading up to my diagnosis, I was exhausted. I would have to nap every afternoon after I finished working. Thankfully, my energy levels are now back to normal. Hang in there and just take it one step at a time. I know it's hard, but you'll find that you have more strength than you thought you did.

How are you doing with radiation. I an 5 weeks post . First 2 weeks after were+the hardest for me.
I’m debating on taking tamoxifen, the side effects scare me.
Hoping you are feeling ok🙏

Yes well, the itching! I finally called my RO, who is so great, and he gave me a prescription. I still don’t wear a bra. Just isn’t comfortable. Then I caught a cold. So I’m inside. I now use the anti itch creams and then switched to my face moisturizer! It seems to be working. You definitely don't end radiation and then jump back into life. I began my hormone blocker yesterday . We’ll see..

They want me to take tamoxifen because I already have osteoporosis. But it’s usually recommended for premenopause patients because of uterine cancer risk. The other medication .. starts with “a” is better for postmenopause patients. Which one are you taking?
.. im 75 yrs old postmenapause if course. I also read the other one is more effective for ILC.
I asked doctor if I could try 10 mg instead of 20mg of tamoxifen and he said ok. But I’m still worried about uterine problems since it happens more with tamoxifen with older women.
I might just hold off awhile 😱

@sharon44r i’m taking the a… one and I am also post menopause. I thought the three newer meds were an improvement on Tamoxifen. ??Women usually switch to another of the three if they have side effects. My friends are on one of those 3. Didn’t know about the uterine risk ?? And I lost mine when i was in my 30s. At this point I want to do anything I can to discourage a recurrence.

@cmocmo and @rebec69, you may be interested in this related discussion:

- Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)
https://connect.mayoclinic.org/discussion/invasive-lobular-carcinoma-pleomorphic-level-3/

I had pleomorphic lobular breast cancer, grade 2, stage 3A. Didn't qualify for oncotype testing because most of my cancer was noted in 6 lymph nodes. Started out with heavy duty chemotherapy which was very successful at killing cancer cells. Even noted by the pathologist after my surgery as an "excellent response."
IMO there's been so little research into this type of breast cancer that no one can be sure what treatments are most effective.