chemo for invasive lobular vs. chemo for invasive ductal

kitkit

Hello again new friends,

My brief description: recurrence after 2010 lumpectomy for LCIS and seven years of exesteme.

Now: invasive lobular. estrogen positive (60%, 1+), progesterone negative (0), Her2 (not amplified (1+), 3 positive lymph nodes

Planning for surgery on April 4 followed by chemo. I am reading that the chemo for lobular is different than for ductal. Can I get an informal survey from those of you with similar profile as to what type of chemo you're having? Is immunotherapy effective yet for invasive lobular?

Thanks so much.

kitkit

Meow13

Hi kitkit, I had both idc and ilc and my oncologist told me they are treated the same as far as chemotherapy. My oncologist recommended AC & T however was willing to do CMF.

I should add I was 95% er+ and pr-, her2- no nodes, oncodx 34. Chemo was strongly recommended based on oncodx score but I chose AI drugs for 4 years. My tumors were grade 1 & 2, mitotic score 1 slow growing.

FaithAndTrust

hi kit kit I am like meow..i got same CHEMO but also had mixed OFF and LOBULAR

The CHEMO did a GREAT job 👏

FaithAndTrust

sorry for typo earlier.. I had mixed IDC and ILC

Good luck to you 👊

dakrock

I thought lobular was not responsive to Chemo.   Anyone else heard that same thing?

Runrcrb

i sure as hell hope lobular is responsive to chemo! Talk to your oncologist and talk to another one if you are not comfortable with him or her. Do not believe most of what you read on the internet or what “someone” says.

Sorry that you are back here and wish you well.

wallycat

Chemo response, I believe, responds depending on the tumor (genetic, hormone, etc.) composition, not the "type" (ILC vs IDC). There are now 4 sub-types of ILC. To generalize a cancer to "liver" or "breast" is now similar to saying ILC or IDC. So much more is known about the composition of the tumors and genetics that it isn't such a blanket statement anymore.

Best to you.

betterdazeahead

I have never heard anything about treatment being the same or different but only have ILC so have never questioned it either. I have also never heard of ILC not being responsive to chemo.

I had a BMX with 1 node involved. My ILC was 4 tumors and we found with the BMX that LCIS was throughout the entire breast as well. My tumors were all grade 2, high ki-67, ER/PR+ Her2-. 

I was originally considered stage 1 until BMX it switched to stage 2. Because of my age and family history no onco  score or mammaprint was ran on me.

My treatment plan following BMX is AC+T - this will be about 5 months of chemo, then radiation 5 days a week for 6 weeks, a full hysterectomy and then hormone blockers.

Meow13

I think the 3 positive nodes is a problem, given that you were on exemestane for 7 years chemo is probably a good option.

kitkit

Thanks for all your responses. Today I got second opinion from surgeon in Los Angeles, Dr. Giuliano, who did my lumpectomy nine years ago.

He is sure that best course of action is AC plus T for my type of ILC. (See description at beginning of thread). It is the same regimen that would be given for IDC, he says.

He wants to check how my lymph nodes respond, and after the chemo will most likely do surgery. He was patient and didn't hurry me along at all during appt. His asst doctor must have spent an hour with us. He even got on the phone and spoke with my oncologist to make sure they were on the same page.

So it's onward to chemo!

trinigirl50

Being PR- is probably an indicator that you would be more responsive to chemo. Good luck.

betterdazeahead

kitkit I am glad to hear you went for a 2nd opinion and it went well. What a great doctor to take so much time with you! One foot in front of the other ((((((HUGS))))))

kitkit

Thanks for all the encouragement, ladies! I am still pending MRI guided biopsy of small bump in breast and my fingers are crossed we have found the primary tumor. That's tomorrow. Then next Tuesday I have a PET scan to determine whether odd spot on C-9 spine is something terrible. In any event, it sounds like chemo is the way to go.

It seems rather unreal, still. I feel so good. It's hard to imagine I am now going to put poisons in my body and end up feeling so bad. I hope I am resilient enough to go to work if I have the chemo on a Thursday pm and then return to work the following Monday. I just have no frame of reference for how chemo will make me feel. I guess it's just going to be one big surprise.

betterdazeahead

kitkit it is so hard to tell how one will fair on their chemo it depends on type they use and then even more out there on each individuals body. I just started my AC Thursday - did not feel well on Thursday after a few hours. Today I just feel not like myself. I will let you know how I feel come Monday --- but when you do yours you may feel totally different.

~Sophie

momand2kids

I would add that you may be surprised-- when I was getting ready for chemo, a friend who had been through it said "do everything they say, take all the meds, drink water---" and she was right-- the meds really controlled any nauseau- I was able to work through almost all of it and never had a day when I was "sick"--I think in the beginning I was a little more nauseous than I liked, so they changed the meds. Tell them what is going on--you don't have to "tough it out" and you may, like a lot of people, tolerate it well. I chose to think of chemo as sort of like "pac man" racing through my system picking up any stray cells!!! I was so grateful that it was an option and I was healthy enough to tolerate it.....

Best of luck!!!!

beth1965

I had 9.2 cm tumor and 17 nodes I got the same chemo you are going to get. That was in 2012 and I am still here to tell you my story. So I am a big believer in chemo with lobular cancer. I did have radiation as well and surgery before chemo as my cancer was growing like wildfire. Take care good luck

Hipline

There is a lot of information out there but one resource where you can find tools to help you make an informed decision and learn more about lobular breast cancer is the Lobular Breast Cancer Alliance. Everyone is unique. The Frequently Asked Questions is a good tool to help you have a conversation with your medical team.

I'm starting a new topic thread on the upcoming 2020 International Invasive Lobular Breast Cancer Symposium which will be held May 14-16, 2020 in Pittsburgh, PA. Save the Date!

kitkit

I found article that my MO must be relying upon when he says that chemo is not effective for invasive lobular:

https://www.ncbi.nlm.nih.gov/pubmed/28382636

OnTarget

Here's one that says chemo is effective on Lobular for high risk patients:

https://www.ncbi.nlm.nih.gov/pubmed/30759288

It's so hard to know what to follow.