MD Anderson?

paige-allyson

I have heard several times that the main ILC expert in the US is at MD Anderson. Are any of you receiving your treatment and follow-up there? If so would you be willing to share re: your treatment experience and the recommendations/input you've received? The big question for me is does going to a center that specializes in ILC matter and would it be worth going for a consult at some point. I have thought about this before but having now read about possible differences in how ILC responds to tamoxifen I am wondering if it could be in my interest to seek more disease specific treatment consultation. I was initially offered 5 years on tamoxifen, that being the current standard of care. I declined and agitated for starting on an AI instead, and am glad I did.

nash

I had pondered going to MDA/Dr. Cristofolini also, so I did some asking around on the bcmets.org board about a year ago. One gal I met there who has Stage IV pleomorphic ILC goes to him, and she said he doesn't pay any attention to her subtype of bc at all, which really surprised me. MDA is the only institution in the US that has a clinical interest in PILC as far as I know. So I don't know if her experience is typical or not, but thought I'd share it anyhow.

sue_blue

What were your reasons for declining tamoxifen and wanting the A.I. instead? I'm on tamoxifen for 2 years and then supposed to be switching to an A.I.

Seabee

If you look at Christofanelli's publications, you will see that his main research interest is inflammatory BC.

paige-allyson

Susan- Sorry for the slow response. I haven't visited here for the past week. I opted for Femara over Tamoxifen because of some early evidence suggesting that AIs might be more effective in delaying/preventing recurrence. I was also concerned about potential side effects of Tamoxifen, especially blood clots in the legs. I previously had a blood clot in a superficial vein during a brief stint on birth control pills when I was in my 20s and was told that I should not take the pill again because of this. Really my main issue was feeling more confident in AIs overall. I've been happy with this choice in that so far I've had minimal side effects. The recent information about Tamoxifen perhaps being not as effective for ILC definitely reinforced my feeling good about my decision. The intial plan I was offered was the 2 years Tamoxifen then switching to an AI but there are different ways you can do it. More women seem to be being started on AIs initially, even pre-menopausal women as long as they have an additional treatment to supress ovarian function (oopherectomy or a drug like Lupron). I initially was getting Lupron every 3 months as "insurance" that I was really in menopause. On my last visit my oncologist decided I could discontinue it. He is going to check my hormone levels when I go for my next follow up on the 19th.

nash

While it's true that Dr. C heads up the IBC clinic at MDA,  he does have a clinical interest in ILC, which most oncs do not. So if one was going to seek out an onc who actually has spent some time pondering ILC, he would be the one to see.

paige-allyson

Thanks for all your input so far. Sherri I agree re: staying close to home. I am always curious about other women's treatment experiences. I have definitely found that it pays to do my homework, 2 years of Tamoxifen and then 5 years of an AI has been the "gold standard" but I think we will see this changing. The AIs are relatively new and as a result there is new research coming out all the time.  The important thing obviously is to be on the drug that works for you!

Seabee

I have come across several of Christofanelli's papers which involve ILC, the most interesting one (to me) being the one in which he found that lobular doesn't respond as well to neoadjuvant chemotherapy as IDC, but contrary to the researchers' expectation has a better survivial rate. The same results have shown up in other studies as well, in one of which ILC had a dismal pCR of 4.8 %, less than half that of IDC. But Christofanelli's papers are different from most others in the he tends to raise more questions than he answers,

paige-allyson

Interesting. On a side note- raising more questions than you answer is a great quality in a researcher. To me this indicates true curiosity and desire for understanding. Others would be wise to follow his example- we'd all be better off. So many researchers fall into the trap of trying to prove their own theories/hypotheses or slipping into "group-think" and following the pack- not exactly the path to developing the new and innovative treatment approaches that those of us here in the breast cancer trenches need!

paige-allyson

Did you find his papers on-line or in a hard copy journal? I'd be interested in reading them.

ihatesnowihatesnow

what do you think about rosetta@home ?  http://boinc.bakerlab.org/rosetta/

Seabee

I agree that an exploratory attitude is an asset in a researcher. He's also interested in some of the subtypes of BC, which is fairly uncommon.

Not all of Christofanelli's papers are online, but some of them  are. You can probably find them by putting his name in your browser. I found them by using subject keywords like chemotherapy, lobular carcinoma, etc.