Invasive Ductal Carcinoma with Lobular Features

Sassafrassy

Has anyone else had this type of cancer? I've tried to search for information about it and it's such a rare type of cancer, they haven't even done many studies on it. I was diagnosed with Stage Two a year and 3 months ago. They treated it with chemo, double mastectomy, and radiation... in that order. In the meantime it was metastasizing, according to a scan done in November 2019, He put me on hormone blockers, due to being estrogen and progesterone fed. Needless to say, it had already reached my spine. Nothing was done, I didn't have another scan for 5 months. It was just followed up with a Pet Scan on Monday. Yesterday I went to get the results and informed me I have Stage 4 breast cancer and he could give me pills to keep me going for a few more years. Does this even sound right?

quinnie

Sassafrassy: I am bumping this thread,. Sorry no one has responded. I do not have lobular features but hope someone will respond to you. THinking of you and hope you are OK.

everythingwillbefine

https://academic.oup.com/ajcp/article/138/suppl_2/A143/1763971

from this paper it seems IDC-L has some similarities as ILC..

OnTarget

What your docs are saying doesn't sound right to me.

My friend was diagnosed with MBC and they aggressively treated it, immediately.

She is currently NED (!!), and they will be closely monitoring and ready to treat if anything pops up.

I can't imagine waiting on things or not having some plan. You may need a second opinion.

NorCalS

I have TNBC and it is ductal with lobular features. It’s apparently harder to detect on mammograms and ultrasound. MO treated it no differently than ductal carcinoma. MO said it is harder to detect, but the treatment as far as MO was concerned was no different than IDC

Georgia1

Just chiming in to agree with NorCalS. Sometimes ILC and IDC are both present, sometimes it's called mixed, and sometimes it's called IDC with ILC features. But the treatment plan will be based on other factors like size and ER/PR and HER. I do wish you the best and hope you are able to get a second opinion. But yes, many women with Stage IV go on to live for many years and that's a reassuring fact.

Sassafrassy

Sorry I haven't returned in a while. I've been so overwhelmed with stage 4, which I do plan on posting in. Let me explain the reason why I am posting in Mixed. I'm only interested in treatments plans. I am ER/PR pos and e-cadherin is in there but didn't see any 'ratings' on the e-cadherin. I'm beginning to seriously question why they treated me the way they did. I went through chemotherapy first, double mastecomy, then radiation. The first scan I did showed no mets but when they did a scan in July, mets showed up during my chemo treatment. Nothing was said or done at that time. My oncologist followed through with stage II and then placed me on hormone therapy in December, which has proven to be ineffective as the lesions kept worsening. I ended up with an PE, at which time, the hospital suggested a biopsy. That came back negative, but there were two types of lesions and the other type was totally ignored. I'm thinking the biopsy was done in August of 2019. All this time passed and absolutely nothing was done while the scans clearly show metastasis. So I am just wondering what went wrong and if they handled my case properly. Someone I was talking to totally questioned chemo first.... and in May from that scan the doctor clearly stated chemo does not work well with my type of cancer and he was right. it did absolutely nothing, so while they were wasting my time on chemotherapy metastasis happened. The oncologist was still going to leave me on the hormone therapy that clearly hadn't worked since December and just throw chemo pills on top of it, I-Brance, which made no sense to me whatsoever. I did get a second opinion and she put me on something totally different. Left to the first oncologists choices, I'd probably be dead in two years. I chose to post here first just to see how other people's oncologists handled treatment.