Why is ILC such a mystery?

Susan, I'm so sorry you have to go through this with all of us but please feel free to come here and have a breakdown anytime you like.  THere is a lot support on these boards.  I personally did not go through radiation but there are threads and even a picture board that help you through that process.  Also under the reconstruction board, there are several threads depending on whether you had DIEP or implants.  Also, I wanted to say that this can be a growning experience for you & your husband's realtionship as awkward as that sounds, if you don't close your husband out of the "healing" process.  My husband and are in love more now than ever after beating my BC together.  BTW-There are some wonderfully supportive spiritual threads too that go a long ways in healing our souls.

Take care,

Joyce

Hood, you're right-TC is Taxotere, not Taxol. Thanks for catching that. Taxol and Taxotere are both taxanes, but you're right--Taxol is infused weekly and is usually not a first line chemo. My mom did both Taxol and Taxotere (and Abraxane, another taxane) so sometimes I get confused.

Oh my, I just confused myself with all of the Susan's on this thread!  Welcome to SusanG2, sorry you have to join the party, but this is a very supportive and well read group.  You will find answers here.  I went to chemo class and I must say that the information on this site and on the discussion boards is more valuable to me.  I did get to see the treatment room and get an idea of what to expect from that though.  I like the idea of flying 1st class.  I'm going with that one!

I thought oncotype was oncotype no matter what form of  bc you have, clarify please.

Susan

I agree that ILC is a complete mystery.  I had a clear mammogram only to have the doctor examine me right after that and find a thickening that was suspicious.  Before I left that facility, I had a sonogram and the doctor who did that kept saying, "I am very concerned" and of course, so was I.  I just KNEW it would be cancer...and it was.  Had a bilateral mastectomy, had 4 AC, no reconstruction, taking Femara since 1/09......life is totally different.  Hopefully, I am cured.  Didn't have the oncotype test because cancer was found in a minute amount, in one out of 8 lymph nodes.  My oncologist said that insurance would not cover cost of having an oncotype done and it would be at least 2,000 out of pocket if I insisted on it.  I let it go, now I wish I would have insisted and paid that amount because I wonder if I had chemo, unnecessarily.  I hate taking Femara but what do you do?  You are caught between a rock and a hard place.  On top of all this, husband had a major stroke while I was having chemo and was in the hospital while I had the rest of the chemo and had to be there, supporting him and didn't have time to take care of myself.  What timing!  I am new to these boards, this site...wish I had known about this last year at this time when I discovered that I had cancer. It would have been a huge help to me.

diagnosed 7.08, bilateral mastectomy, ac/4 treatments, Femara, 1.8 cm, Stage IIA, 1/8 lymph nodes.

There was no mention of lobular on my test results. I think that only the tests on the tissue are used. Your score is your score. They are assuming that you are going to take a hormone drug. It was formulated with the assumption of tamoxifen for five years. My Onc also used Adjuvant Online to help in the decision. The whole thing drove me nuts.

I seem to have frightened people with my comments about OncotypeDX.  I'm sorry about that.  When I got my scores back I started trying to find out what it meant in my case.  I will explain further what I found hoping that it will make my thinking clearer, rather than the opposite.  Let me just say,  I think that ILC breast cancer is understudied and that a lot of decisions are made based on IDC and then we are just lumped in.

I found out that OncotypeDX is "prognostic" (what the natural course of the disease is based on your gene profile) and it is "predictive" (gives the likelihood of benefit from treatment).  The recurrence score is helpful because it integrates the contribution of proliferation related genes and the hormone receptor pathway genes.  However, I wonder how helpful this information is when applied to ILC.

The "prognostic" genes are the proliferation genes, mainly, but also the invasion genes. The RS was validated on subgroups of the NSABP 14 and 20 patients. If there were any lobular patients I couldn't find them.  In IDC patients proliferation is more prognostic.  ILC patients mostly have low proliferation rates and later recurrences; so measuring proliferation in us is much less helpful in determining prognosis.

The invasion genes in OncotypeDX  are Stromelysin3 and Cathespin L2.  I have read that one of these, Stromelysin 3 is not prognostic in ILC.  I have read, however, invasion genes are prognostic in Her2+.  Most ILC is, however, Her2- . 

The OncotypeDX is "predictive" of benefit from Tamoxifen. It was, in fact, designed to do just that. The higher your ER level, the more likely you will benefit.  This is probably true for AIs as well.  Since most ILC is highly ER positive, there is a good chance that endocrine therapies will help.  

The OncotypeDX is "predictive" of benefit from chemotherapy.  High RS indicates a higher probability of benefit from chemotherapy.  Again proliferation genes and invasion genes were the ones that predicted benefit the best.  There was a trend for lower PR, ER, and ER Group scores also predicting benefit. Other studies have found these same relationships.

I can't help but feel that they won't find out what is prognostic and predictive in ILC if they don't study it, not just in a cell culture, but in populations of patients.  We are always lumped in with IDC and that doesn't individualize our therapy. 

hi kt05, I had both extensive LCIS and 6 areas of invasion (ILC).  It's certainly possible to have both.  I had several months of biopsies and tests showing atypical ductal hyperplasia and conflicting reports from ultrasound, MRI, and different radiologists reading the same test.  It is so anxiety producing and frustrating to go through the process.  My final diagnosis of ILC was made after an excisional biopsy (about one fourth of my breast) was removed and two areas of invasion were found.  The rest was found in the mastectomy.  I am so thankful that my breast surgeon kept on searching until we had the right diagnosis.  Once you know what you are dealing with it does  get easier. Hang in there.

Hi ILC Sisters:

I feel fortunate that my diagnosis was made fairly quickly - digital mammogram in Nov. 08 with a "probably benign" result and recommendation to f/up in 6 months. In July, I was diagnosed with Stage I multi-focal ILC/no node involvement. My question has always been: was the smaller mass there in November or did it just show up in the past six months...it wouldn't change anything but sometimes you have to trust your gut - I asked my PCP about the "probably benign" report back in December and she offered an MRI, but I declined; I didn't want to make a mountain out of a molehill - Well, I learned you have to be your own advocate. I am so appreciative of all of the information going back and forth here on this thread. As a relatively newbie cancer member, it's all very helpful in trying to make sense of it all and making decisions that you can live with.

Best of luck to all!

Hi my ILC friends,

I just wanted to send out a quick post.  I started chemo today T/CX4.  It went okay, and I am feeling a little woosie, but other wise okay right now.  One kind of weird thing, I had a lot of sensation in my right breast, which was my LCIS side, and a little sensation in the left breast. The infusion was going into the right arm, so that makes a bit of sense.  The weird thing is the sensation at all.  Since my reconstruction I haven't had much sensation at all in my breasts.  I don't know but I just hope the chemo gets any possible stray cells that might be lurking.

I hope all is well with all of you! Take care.

Susan

Thank you Helen, I appreciate the encouragement.  I am at work right now, waiting for my boss to get back from running errands so I can go home.  I want a nap.  This whole taking care of me thing is harder than I would like for it to be.  I am such a caretaker of others I have a really hard time letting go and putting me first.  I guess the universe is trying to teach me a lesson.

Susan

Thank you, Gitane.  I know, the "woo-woo" thing was crazy.  They are still a little flushed.  I guess it is just the medicine doing it's best to take care of everything.  I am laying in bed right now, and I have been resting as much as I can.  My family is behaving at the moment.  I will do my best to take care of me right now.

Have a wonderful rest of your weekend.

Susan

MM ~  I'd like to read that article, but neither the link nor cutting & pasting seems to work for me.    Deanna

MM ~  Very interesting article.  Thanks for posting that link.  I was especially interested to learn that the percentage of ILC in Japan seems to be somewhat less it is in the US, but that it's reportedly increasing.  Also, the strong suspicion that HRT is a major culprit hits home with me, as I squarely blame Prempro for being the tipping point, if not the primary cause, for my bc.  Both HRT and birth control pills are both far more dangerous -- especially to those of us who are high estrogen to begin with -- than we are ever led to believe.  And I wasn't aware of ILC's different metastasis pattern -- so that's very helpful to know for future awareness and screening.

I'm really relieved to finally see a paper specifically examining a subset of ILC women.    Deanna