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

Hi
I too have ILC 1/2 , had a double mastectomy on November 2024.
When was your recurrence?

Hi I hope you all are doing well.
I had Triple Negative lobular cancer in my left breast. 5.8 cm luckily not in my lymph nodes. I had Left side masectomy, radiation, chemo before surgery and Xeloda after surgery. Then zomeda injections for 3 years. I am four years past all this and doing well. The zomeda was to help with any bone loss as well as keeping cancer from reocurring in the bones. I decided on masectomy because Triple Negative and it being lobular can mean hi reoccurrence ate. I see my Drs every 6 months and a diagnostic mmammogram very year.
It is all alot to go thru. Keep up a good diet and excersize when u can as it all helps.
Good luck and hugs to you all.

I had surgery last Wednesday, so it’s been 1 week of healing. I was never in any pain, and just took ibuprofen. My surgeon called yesterday and said I had clear margins and no cancer in my lymp nodes. I feel like I am a very lucky girl. Still have to set up for radiation therapy and then meet with my oncologist for medication for 5 years, not sure which yet. Since it is the sneaky cancer I will continue every 6 months with either an MRI and mammograms. Thank you for your successful story. ❤️

I hope your surgery went well. In May 2024, during my very first routine screening MRI due to dense breasts, they found some very small multifocal spots. No signs or symptoms otherwise. Long story short, they biopsied one larger spot which was only 2mm and it was ILC, stage 1, ER+, BRCA gene -. Doctors said the same, very treatable, So between all the other tests, MRIs, another biopsy, this was looking multifocal, still possibly bilateral. Next MRI for that is in March 2025, as they wanted to watch the smaller spot on the other side, again right behind the nipple area about 3/4 inch. I enjoyed my summer of 2024 as I knew I was going to be ok, as this is a slow grower. I had my surgery in September 2024, recovered remarkably well. I decided for the surgeon to take out a golf ball size area that encompassed the multifocal areas, which turned out to be ILCIS spots and a calcified spot, but I am not messing around. The reason for that is it has 20% chance of turning into ILC. The surgeon was phenomenal, moved things around so well, you are not going to notice, even with the scar, went around the nipple. So one is a b-cup and one is a c-cup. I don't care and I am not doing the flap surgery and mutilate myself and have possible forever side effects. If you chose radiation, see if you can do the prone position. talk to your Doctor. 16 radiation treatments in November, finished before Thanksgiving. Skin was a lot better by Christmas. Start super moisturizing your breast area before radiation when cleared by the doctor after surgery pre-radiation. It was worth it to reduce the risks of recurrence. I am on anastrozole for 5 years, as within the last year apparently I went through menopause. Looking back at that, the only time I had hot flashes is when I drank a glass of wine, which was not often. I did not eat bad often, but I did change my diet on the meds which is ok by me eating even more healthy. Mostly mediterranean. That is a different story but it helped me tremendously with the anastrozole, as well as exercise. I exercise 4-5 times a week. I exercised for 15 of the radiation treatments before I had to stop because of skin issues developing. Important to ask your doctor if you should take the tamoxifen or AI before radiation. I would suggest after from what I have learned, but I did not have an issue. Also important to eat some lean red meats for your iron while on radiation or alot of high iron beans. I have some aches in the breast and armpit area, it was more from radiation. I know it is going to take everything about a year to fully heal. ILC is not usually caught this early. If I have to have surgery on the left, then so be it, still very small, even smaller than the 2mm spot from right. In December I did a DEXA scan, mild osteopenia, going to be managed with increased calcium, vit D, and exercise. Researching Osteoboost device or similar. The most important thing is I know it was caught early, and that this was a 2mm bump in the road. I feel blessed but heartbroken at the same time, many people here, and some of my friends do not have the same story. My friend died shortly after I was diagnosed, hers was caught at stage 4 ILC, she fought hard for 2 years, and enjoyed life until its end. My paternal aunt who is 4 years older had HER2+ 15 years ago, caught very early, still here and she is bundle of energy. Your attitude and perspective will greatly help you recover and help map your path. Love to you and all.

Hi all, I was diagnosed with ILC in 2024 on my left breast.I has left mastectonomy and currently on tamoxifen for 10 years. I am 40 years old and dissapointed that I will not be having kids anymore however thankful that I have my daughter and I am alive. Thank you for all your posts. I gives me hope on the quality of life living with the condition. Thank you also for the diet advises

Is there anything bad of radiation?

Chemo double mastectomy no radiation.

Wow, 22 years, that is great. Did you take radiation, chemo and double mastectomy?

I am good but struggling with man medications.

Well good luck with your surgery today. I had Lobular breast cancer diagnosis in 2012 and it was stage 1-2 where it was multifocal (meaning mutiple tumors , they were small , and only in left breast) I had a double mastectomy to be on the safer side due to lobular's slightly higher tendency to show up again or else where.... I did not have a good surgeon or health insurance (no coverage really for follow ups & costly appts. w/ sometimes only a nurse even though I was paying for an oncologist follow up... for my treatment . I had a reccurrence , the surgeon was very hyper and flippant and made light of finding a few cells in 2 left nodes' dissection & did not recommend radiation. Within these 12 yrs of trying my best to eat healthy ( no nitrates, very little red meat and a lot of veggies and nonestrogenic foods (NO soy--read all labels for like soy in salad dressings etc) and I do not drink but maybe wine or beer once a month or so...a glass. I m fortunate that I left the state where I had substandard care and have pretty consciencious thorough care now, but I have metastatic to bone and I do not know if this occurred because of radiation.