SHARE Metastatic Breast Cancer
1,619 members936 posts

Looking for input on ILBC

Hi I've been diagnosed with invasive lobular breast cancer ER and PR positive and inconclusive HER2. They are redoing this test with a new scientific test and I will find out Friday. Also having a PET Monday to see if it's spread. Can anyone tell me what kind of symptoms they had with this type of diagnosis to determine if it spread?

21 Replies
oldestnewest

I had no symptoms when I found out it was in my bones. It's was my Alk phosphate which was rising. Than a bone scan with biopsy confirmed the diagnosis. Been on xeloda and xgeva for the past nine months. Would not have believed it but seeing my skeleton light up was confirmation. My goal is to keep it out of my liver and lungs!!!

2 likes
Reply

Keep up the good work.has the medication caused it to shrink at all?

1 like
Reply

Were you Her2+ and how long was it from the time it was in your breast to the time it spread to your bones? Did you have herceptin? Thank you for any information you can give me!

1 like
Reply

Welcome to this website. I'm glad that you found us, even though I wish it was for another reason. Tomorrow 4-5 ET SHARE is hosting a webinar on lobular breast cancer. There is a somewhat recent post with the link to register.

Reply

Would like to register. Can you explain where to find the link. I'm not to good at this stuff

Reply

See the home page: sharecancersupport.org

Reply

I'm also registered for the Invasive Lobular Breast cancer seminar. I also sent the info to the nurse that manages our Cancer Center. Time is 4-5pm ET (3-4 CT, ...)

sharecancersupport.org

My diagnosis was ILBC, ER+ positive initially, but then 3 inconclusive tests. (PR- HER2-)..Was on Femara and Ibrance for 2 months. In the meantime, it spread to the liver; at least we got a definitive biopsy this time, ER+. Tomorrow I will see the newer oncologist and get startedon Xeloda. All the medical caregivers have been fantastic

1 like
Reply

Susan,

Did you have a liver biopsy? I have same BC as you and same subsets. Will have CT scan end of March. I'm currently on Xeloda and Zometa. My markers have been going up the last 2 months. I've been on Xeloda 1 1/2 yrs, with no big problems.

I think Ibrance and Femara are next for me. Funny how our drug treatments are the same but at opposite times. I take it that the Ibrance + Femara weren't the best for you?

1 like
Reply

Hi Linda,

Speaking for myself who also has invasive lobular BC, ER+, Pr-, and Her2-, I had metastisis to the bones. This type of BC seems to go there a lot and also the liver. Am glad you're having a PET scan to see what's what. I had NO scans nor bloodwork done after initially being diagnosed, but was put on Arimidex and had a lumpectomy and 33 rounds of radiation. 1 1/2 yrs later I had severe rib and back pain. CT, MRI, + bone biopsy showed bone mets. Was NOT happy!

My "new" Oncologist is doing tumor markers on me each month to monitor how my treatment plan is working. He also sends me periodically for a CT scan or skeletal x-rays to watch for further progression. Lobular BC is sneaky. Only a real good Radiologist is able to see it on mammograms or other scans. Sometimes by the time it's actually found, it's already metastised. We lobular people need to be watched VERY carefully!

Good luck. Sounds like you have good medical care.

Let us know how you make out with your Her2 status and scans. From what I've learned, usually lobular BC women are Her2-. Bye for now.

Kats3

1 like
Reply

Thanks for responding. I'll keep u posted about tomorrow. Any idea how long you had it before it was caught?

Reply

I never had any scans before my lumpectomy, nor after, even though one positive was found! Just had 1 3-D mammogram 6 months after surgery which showed nothing. I believe I had the Mets before my lumpectomy.....all along, but no one bothered to send me for scans nor monitor my bloodwork. As I said, this Oncologist is history! All I can say is be vigilant and make sure you're getting the proper follow- up care. Good luck. Kats3

Reply

Hi Kats3,

Had my PET today. Dr called and said my lungs, liver and ones were clean but I have arthritis in my lower back and hips. I've always had trouble with my hips and sciatica so I'm hoping the reading is correct. Until I'm on Ned's I'll be nervous but then I see people having more cancer crop up after starting treatment. This disease plays havoc on the head as well

1 like
Reply

Linda, it sounds like you have NO metastisis. Is that correct? Are you Stage 1? I'd take arthritis any day over metastisis! Are you on an anti-hormone drug like Tamoxifen or Arimidex? Your doctor will hopefully keep an eye on your tumor markers and send you for a scan every now and again, especially with lobular BC. Did you have a lumpectomy or mastectomy? Am glad that your PET scan came out good. That must be a relief! Kats3

1 like
Reply

Hi Kat! Yes very relieved about PET scan outcome. Of course my hips hurt when I lay on them for hours at night and they begin to hurt. Just hope the radiologist read the scan correctly and it's truest arthritis. Can't help but be a worry wart. This afternoon I visit the oncologist and will see what her plan of action is for treatment, what stage I am and when they will schedule surgery. As of my MRI 2 weeks ago I do not have cancer in my left breast. I do plan on a double mastectomy anyway. Why invite trouble. I am also obese which is why I think I ended up like this. I've lost a little over 15 lbs not eating sweets, pastries, pasta, and othe types of junk. Greens, fruits and nuts have replaced them with stationary bike exercise. Considering what's on the inside I feel more energetic than I have in a long time. Talking to you really helps. Thanks Kat!

1 like
Reply

I also have invasive lobular breast cancer. I was diagnosed 2 years ago. I had chemo and radiation. Found bone mets before I finished chemo. I was crushed. I am now on arimidex along with exgeva shots monthly. My ca27-29 has gone up the last 2 times. This week is my marker test again. Hoping numbers go back down. I hate that I freak out over these numbers.

Reply

I had hip/groin pain, thought it was just a pulled muscle or arthritis...never for once did I even think it could be cancer. Had MRI, showed it was MBC

1 like
Reply

I had mets to bone but the only symptom I had was mild back pain that wouldn't go away and my upper arms were very weak. There is a webinar today focusing on ILC if you would like to participate: sharecancersupport.org/cale...

1 like
Reply

Hi Linda,

I was diagnosed with ILBC, ER and PR positive, HER2 negative, in February 2016. My tumor initially on the Mammogram was 2cm, but once I had the Breast MRI, it showed I had a 9cm tumor. Only the MRI actually was able to truly identify the size and position of my tumor, and by the way, there were 2 tumors, one 2cm, one 9cm. I had a mastectomy in March, was all set to start Chemo and radiation, until the results of my PET scan came back and i had bone mets. The answer to your question is, I had no symptoms. I was told that for a couple of years i had a dense breast, so i was completely shocked. Good luck, and hang in there.

Michelle

2 likes
Reply

Hi Chellebelle1,

What is your treatment plan now? Did you have chemo + radiation? What type of drug plan are you on? I also was told I had dense breasts and it was hard to read my mammograms. We women need ultrasounds after each mammogram. Wish I had known about that a long time ago! Now 3-D mammography has come along to help radiologists read mammograms better. Wishing you much good luck in your journey. Kats3

1 like
Reply

Hi, LInda. On 3/1/04 I found out that I had breast cancer and by the end of that month, we learned it was invasive lobular, E+ P+ and her2neu -. I had bone mets. The only "symptoms" I had was a slight itching across both breasts, cancer only in right breast per all tests. I am still here 13 years later! Lobular bc tends to respond to hormonal treatment that suppresses estrogen. I got hot flashes from that, but the Rx med Effexor helps with those alot. I also use compounded Rx testosterone cream to reduce vaginal atrophy. Most of us with bone mets are put on bone meds that both strengthen bones and reduce cancer. Zometa and Xgeva are the most commonly used bone meds. Z is infused via IV and Xgeva is a shot in upper arm or belly. I hope that whatever your tests showed, that you will do well in treatment and have some peace of mind. The first months are the hardest--this diagnosis is hard to get our heads around!

1 like
Reply

Hi PJBinMI,

What drug plan are you on? Have you only been on Estrogen inhibitors? For me they worked somewhat. Oral chemo pill Xeloda worked longest, 21 months but markers climbing and Ibrance w Femara coming soon. I don't like change as the dosage of Xeloda caused me no side effects. I'll know by end of March what will be recommended. I'm Lobular too. Am receiving Zometa every 3 months now. This has helped heal my bone fractures tremendously. Am very glad you're doing so well! Kats3

Reply

You may also like...