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

@sharon44r
Like you I had LBC in one breast. For me, the right one and I did the breathing thing. At first my surgeon suggested one week of radiation but the RO decided on 3 wks because lobular is "diffuse." I think that means it can show up anywhere if it comes back. (my interpretation). The medical oncologist said I might not need those meds but I didn't want to take chances so I start at end of week. I think you are right in your assumption that at my age (78) they think you might die of something else first. (My mother was almost 95 when she passed on.) To date, I've been pretty healthy. The radiation was uncomfortable. My facility wasn't up on Mepitel film so I didn't try it. Right now I am one week out from radiation and very itchy in my chest area. My RO called in some triamcimolone yesterday so I hope that helps. I'm a bit frustrated by all the women who tell me their mom/sister/aunt had breast cancer and lumpectomy and are still alive and well. No problem. They don't know if it was ductal. My bet is that it was. I'm trying to get my info/survival rates re: LBC so let's stay in touch!

Thank you !

I never heard of that type, I’m going to rest about it.
I wish you the very best of luck! 🙏🏻🙏🏻
Luck to us all!

So sorry to hear about your uncommon diagnosis, and hope your treatments work out better than expected for you. The Lobular Breast Cancer Alliance has links to research studies and would be a good place to start.

Glad you did the radiation, do any and all that will help or stop the cancer from recurring or metastasizing.

I have Lobular Carcina in situ undifferentiated Pleomorphic breast cancer. The word Pleomorphic is the kicker there due to being less than 1% of cancers. It's month 6 after 2 lumpectomies, radiation and daily anastrozole, nothing like a menopause rerun. Anyone else have pleomorphic cancer cells? I'm willing to be part of a study, the prognosis isn't great.

I had the lumpectomy for multifoci lbs on left breast.
Stage 1 grade low recurrence score.
I was told I could skip radiation by ancoligist if I went on hormone blockers. With all the other issue I have pmr osteoporosis, they recommended tamafoxin, which isn’t the best for LBC but less bone damage with it. I really didn’t want to take hormone blockers since I have been on prednisone for over 2 yrs.
I decided to talk to radiation doctor, and he told me since a lot of women can’t tolerate the hormone blockers and since I have multifoci in 1 quadrant, I should get radiation.
I did 16 treatments, with hold the breath sessions and got extremely sore after last treatment. It only protects the breast that was affected,
Im 75, and they tell older women a lot they don’t need radiation, with stage one, I think they say that because they think something else will get you before the cancer.
Not sure if I made the right choice. It’s a hard decision to make when they leave it up to you.
🙏🙏

Hi, the Lobular Breast Cancer Alliance is giving those with ILC a chance to participate in a survey on ILC, specifically your experience with it and follow up surveillance. The survey deadline is December 26th. If you’re interested in participating, you can find it in this link,: https://us17.campaign-archive.com/

@lucylocket did you meet in person with the nurse at your surgeon's office. Both my daughter and I have had double mastectomies and found that they would fit us in when we had problems like the ones you are describing. Also the visiting nurse can be extended. Sorry you are going through this and hope you can be seen if you haven't been!

Thanks Colleen...... No, the soreness and swelling is still there. Coming up on 5 weeks since surgery. I'm doing therapy at home and I walk every day . It helps some but by about 8 pm every night, it's pretty rough. Tightness in area of scar and still swelling under arm.
I have an indention right above my scar that's about 2 inches in diameter. Anyone else have that happen ? Do you know what causes that. Any answers appreciated. Nurse navigator at surgeon's office advised trying massaging it, but hasn't helped yet.