Are the chemotherapy regimens any different for ILC than IDC?

Look into Oncotype test, and I also support Meow's comment. I had TAC chemo amd take Letrozole/Femara for 10 years. Both proven to be good for ILC.

What was size of your cancer?

Keep in touch, Racy.

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From my research and knowledge, ILC is treated about the same way as IDC: same chemo drugs, surgery, rads, etc. We perhaps will be on AI drugs longer since ILC has a tendency to recur further out from dx than IDC.

Leslie, do you have an example of thesestudies proving that TAC "doesn't work" for ILC? What I have read does not support that. The main difference in chemo response in ILC and IDC is that a pathologically complete response in the neo-adjuvant setting is more rare in ILC than in IDC. However, whether ILC or IDC a PCR is only obtained in a minority of cases. Also, in spite of this difference,chemo seems to confer a similar survival advantage on both grpups. For example http://annonc.oxfordjournals.org/content/early/201...

We already have many links in other discussions, but here's one on neoadjuvant use of standard chemo:

http://jco.ascopubs.org/content/28/22/3552.long

I used AL's neoadjuvantly and it did bring down my KI-67 from 44% to 3% within a month. Less effect on tumor size. Tumor didn't grow much, but didn't shrink either. The high KI-67 rate is abnormal for Lobular, but my Oncotype was 15. I've had every scan to check for disease since my BMX and I'm considered NED. I agree than few of us will be PCR (complete remission) status.

And a more recent study:

http://www.reviewsinoncology.com/materiale_cic/779...

Or how about An excerpt from the Objectives for the Lobular Conference beginning today:

...Despite ILC being the 8th most common cancer in women, clinical and laboratory studies of breast cancer have focused almost exclusively on the more common IDC, giving little understanding of the unique nature of ILC and causing therapies for ILC to be identical to IDC. Not surprisingly given the lack of research into ILC, there has never been a focused meeting to discuss basic, translation, and clinical research on ILC. There is thus a large unmet clinical need for the 30,000 women diagnosed and treated each year for ILC. To overcome this issue, we will host the first ever symposium focused on ILC...

I encourage everyone to search Lobular Cancer and chemotherapy. Focus on the latest. But I believe there's not enough benefit to standard chemo to risk side effects. Look at graphs. A short term benefit of 3% isn't a benefit if your quality of life is compromised. I have an aunt who had strong chemo for a breast cancer reoccurance 2 months after me, and it was 10 years after the first DX. She's plagued with bad neuropathy, weakness, mental changes, etc ... I'm far healthier. Do Taxols help us avoid the dreaded late reoccurance risk? I doubt it.

Now if you have a more non-traditional lobular with low ER and PR scores, a different treatment protocol makes sense. Anti-estrogen meds won't work. However, if you are strongly positive for ER, relying on AI,s like Femara will work best. Oncologist's that say Ductal and Lobular cancer are the same should be fired IMO.

I have a high ER and PR classic lobular cancer - stage 3a. And micromets to 4 lymph nodes ... all removed with 20 more I've also found I have an autoimmune disease recently so I can use the anti-malarial medication Plaquenil. Had I done Standard chemo with all the health risks, I could be dead girl walking, as my immune system is already compromised and may be why I developed Lobular cancer. Instead, I'm pretty healthy given 4 surgeries this year.

Everyone makes their own choices and it's known here that I'm strongly anti-taxol meds for Lobular cancer. Don't injure your immune system without good cause, it's what fights cancer

MFalabella,

How did your Dr. decide to do only a lumpectomy with a 5 cm tumor? I only ask because Lobular cancer weaves it's way throughout our breast tissue and often is in the other breast as well sooner or later. A BMX is usually recommended for larger cancers.

One reason standard chemo's are less effective is because they're geared for destroying fast growing cells. Lobular is usually slow growing. You must have a Dr. that thinks Lobular and Ductal cancers are the same.

You've had your share of trauma, and are making the difficult decisions we all have. I respect that.Your treatment may be too conservative overall for the extent of your cancer, or I'm misreading your Stats

Hi Smurfettte26:

I read your other post with tweets from this meeting with interest, as they highlight for us in real time some areas of discussion at the meeting, which are of great interest to those with ILC.

Unfortunately, the tweets are inherently top-line and largely devoid of explanation. New patients with pending medical decisions should understand that tweets from scientific meeting are not a reliable source of medical information, and one needs to access underlying abstract, slides, poster, or video presentation to understand the underlying basis, new findings (if any), caveats, and context for tweeted remarks. Even the content of these primary sources (abstracts, slides, posters, talks) may be preliminary in nature, were often prepared in a rush, may contain errors, and are not peer-reviewed. Such preliminary results (if any) are often not seen as practice-changing absent study completion and publication of a peer-reviewed paper.

Re the particular tweet: "No patients with lobular features should be getting breast conserving surgery without understanding the risks #lobular2016"

https://twitter.com/search?q=%23lobular2016

https://twitter.com/PSUMaryDom

In this case, the author of the tweet appears to be a layperson named Mary Dominiecki, a "market researcher in healthcare, mother of 3 boys, cub scout leader, choir member, amateur photographer, soccer enthusiast, and volunteer." Whether the information she chose to highlight relates to new information based on new results, or simply refers to established limitations of imaging and challenges of obtaining clear margins with lobular disease (which may have been reviewed in a presentation) would be important to know. I have no idea.

BarredOwl

Very valid points as always BarredOwl. Thanks.

I appreciate Smurfette and others taking the time to highlight this important meeting and the issues of keen interest in the lobular area. It will be interesting to see any documentation and to follow later publications and research.

BarredOwl

Thank you Owl for the links to the articles. I am scheduled for surgery BMX in Nov. My Onc sent my biopsy tissue to Mamoprint bu it was to small. Will have to wait untl after surgery to see what treatment lies ahead. I highly suspect that because my first cancer was PR - I had a reoccurance andnof course having PLCIS didn't help any! I was told I had only a 7% chance of a reoccurance, Lucky Me, I should have went to Vegas LOL

My treatment has been dictated also on my age - diagnosed at 35, with three young kids that I am willing to do anything to make sure they don't have to grow up without me.


I have done neoadjuvant AC + T, and I had a complete response. 10cm (according to MRI) of ILC completely gone, but for two spots of LCIS.
I had a mastectomy with axillary node dissection. My surgeon described ILC as sneaky, and she wanted to get every last bit.
I'm starting 25 sessions of radiation tomorrow.
Then I will be starting on ten years of Tamoxifen, probably moving to an AI depending on what we decide to do with my ovaries.

We have thrown the kitchen sink at this, and I don't regret this at all. But, I am young and otherwise healthy. I'm only 9 weeks out from chemo, and almost feel back to normal.