'Go to' for ILC

Dear trigeek,

I can understand why you'd like to find an expert but I have never heard of an ILC specialist either. I asked my onc about that when I was first diagnosed and she said they don't really treat or consider ILC and IDC differently as such. She told me at the time that the critical aspects were grade and hormone receptor status and that ILC usually has a better prognosis because of the hormone receptor status. I don't know if that helps or not. I found most of my ILC-specific support here on these Boards. Ask anything and someone will know about it!!!  Good luck to you and your family.

They are finding that ILC is quite different than IDC is many respects, but I haven't heard of anyone actually  "specializing in ILC" as of yet.

The good news is my mom had ILC  and is coming up on 21 years without a recurrence!  Had lumpectomy, radiation and tamoxifen; did however have an axillary node dissection and developed lymphedema 6 years after diagnosis. (LE is not caused by radiation, but can happen after lymph node removal--now they have the SNB which removes only 1 to 3 nodes, lessening the risk of LE considerably). 

awb and trigeek, I found on the ACS website where radiation can cause lymphedema (wanted to make sure I wasn't totally hallucinating ). The link is:

http://www.cancer.org/docroot/MIT/content/MIT_7_2x_Understanding_Lymphedema.asp

Hope that link works--I can't cut and paste here with my browser. If it doesn't work, just google "radiation lymphedema breast cancer" and it'll come up.

MusicTeacher--thanks for that info about MDAnderson. I actually have a friend in Houston who's been bugging me to come consult with them. Do you know off-hand which of the female oncs are the ILC ones? I looked at the website, and they have a huge team there. Didn't see anything in the individual bios about ILC, but I may have missed it.

I wonder why they told you you'd have to have gone through chemo? I'm on chemo, but I wonder if they only will take women with recurrences? Did they elaborate on their reasoning when you talked to them?

Thanks in advance. 

Okie Dokie, Nash & Trigeek. Found the info for ILC at M.D. Anderson Cancer Clinic, Houston.  Ana Maria Gonzalez-Angulo, Clinical interests are: Lobular carcinoma of the breast, inflammatory breast cancer, clinical and translational research.  I did a search at www.mdanderson.org, typed into SEARCH 'Patient Referrals', then 'Physician Referrals', clicking on the Breast Cancer Departments, and that's where the Cancer Professionals list came up.  There are evidently other physicians who are also specializing in ILC. 

 As for why I was told that they take patient referrals after they've been through chemo, I can't tell you. 

Interestingly, MD Anderson has a 2005 research article about ILC patients may not need chemo.

Isn't this mixed messaging frustrating!

Dear Nash,

When last I checked in, you were explaining your situation to me.

Now that you are half way thru your chemo, how are you holding out? 

Given all the studies... all the different Dr's recommendations based on their personal experience, the statistics, etc etc. .... we should all be crazy with confusion..

Hang in there.

Grandma Wolf

Hi, Gma Wolf. I'm holding up OK with the chemo. It's not fun, but it's doable.

I was not comfortable relying on hormone therapy for my ILC mainly b/c although I'm ER/PR positive, I'm not highly positive. The percentages were around 50%/30%. Made me wonder what was driving the other percentage of the cells. Surgeon agreed, onc disagreed on that logic. Both recommended chemo regardless. Third onc recommended chemo unless oncotype came back in low range. It ended up 18, which is low end of intermediate. My beef with the oncotype was that I couldn't imagine many of the women my tumor was being compared to had pleomorphic lobular, so I didn't know how much I could trust it. There's just so much about lobular they don't know.

Nash,

AS I was told by one very reputible resource at NIH, it is impossible to fit your individual situation into the statistics.   I know I sure was trying.... (excuse me while I slip into my straight jacket)  It finally boils down I think to the fact three knowledgable sources agree chemo is right for you.  Since my first diagnosis for IDC eight years ago, there has been so much progress, especially in the area of pathology, but in many ways the more things change the more they stay the same.  My ILC HR negative is uncommon..so the guildlines used 8 years ago for my IDC are being used now.  Lets raise a toast to our chemo with best wishes for it's swift completion, and getting back to our lives.

Hey, I'm looking for some paste on eyes to slap on the back of my head..have you seen any?

I've also found that I have had to manage my own treatment. By pure luck, my ILC was found at 1cm, but with one sis with thyroid c, another sis also having bc, and mom with ovarian c, I still had to search for a dr to give me a bilateral, instead of a lumpectomy. Then the onc said that I wouldn't need anything else, I was done--no rads, chemo, etc. I wasn't convinced, and felt that wasn't aggressive enough. So I found another onc who recommended a full hysterectomy (much higher chance of getting ovarian c if you have bc) to get me into menopause, and 5 yrs of Arimidex.



Dr's opinions vary across the board. Go with what feels right.