ILC vs other breast cancers

Shari--One  has to be careful of assuming that all ILC is alike. There is research suggesting that classic ILC tends to be more slow  growing and less likely to respond to anthracycline chemo than IDC, which is part of the reason, along with my Oncotype DX score, why I decided to pass on chemo. If you are ER or PR plus, Tamox or the A/I inhibitors, depending on whether you are pre or post menopausal, tend to be more effective. Howerer, some ILC are more aggressive and do respond to chemo.

There is a new blood test being tested at M.D. Anderson which can indicate immediately whether or not there is a single cancer sell circulating in the bloodstream. This should be helpful in deciding quickly whether or not a given systemic treatment is working.

I'm not suggesting that my ILC behaves like all others but I will tell you what I've experienced for 4 1/2 years.  I have mets in the abdomen (peritoneum) and mets in the lungs (the avoli that transfer oxygen to the blood).  I'm on oxygen 24/7.  I have never had a Pet Scan show cancer in my body and I've had at least 10.  My first Onc nearly killed me waiting for these Pet Scans to show anything.  The second and third Onc knew enough not to use them on me.

My family doctor diagnosed my BC and 2 years later the mets when the Onc couldn't handle it.  She used chest and abdo Cat Scans - these spotted all the Ascites in the abdo.  Although my TM's are probably the highest in the country (in the thousands) I have no measurable disease in my body.  A real bummer when it comes to getting into Clinical Trials.  The Onc monitors me with Cat Scans, Bone Scans, and TM tests. 

Another thing to watch is that Lobular can metastasize differently.  With ductal they are looking for Lung, Liver, Brain, etc.  Mets to the peritoneum are somewhat common with Lobular as are Mets to the central nervous system. So are these Avoli problems with the lungs.

I'm not trying to scare the crap out of anyone - just saying that Lobular patients need to be with someone that treats a lot of Lobular. That means either a Breast Cancer Onc or a General Onc that see's tons of BC patients since only 17% of what he/she see's will be Lobular. Some of these doctors go months or years without a Lobular patient. 

Again, this is not stated to create fear.  If I had 2 things I could do over again, I would have gone to a Breast only Onc at the outset and I'd have gone to a major center like MD Anderson for a second opinion.  I corrected one of these mistakes in January and will correct the 2nd by going to MD Anderson in the next month or so.

Good idea! When I originally got the stage 4 diagnosis, it was members from this site that clued me in on the Pet Scan issue and the peritoneum issue.  Just like Seebee's comment about AC - that could save lives!

Nurse Ann  Thanks for sharing your knowledge.  Do you know the best way to check for mets to peritoneum?  thanks

nurse-ann and Gabby,

Thanks for your input. I have been alarmed since I started researching BC in general and ILC in particular by the tendency of doctors to treat all cancers alike.  When I had my first appointment with an oncologist, he immediately proposed a regimen of AC + T, which was widely practiced at the time and is still favored by many oncs. By that time I had read enough to be aware of the possible cardiac damage associated with anthracyclines, and since I had a family history of cardiovascular disease on my father's side, I was not interested in pressing my luck, especially since some studies indicated that the response rate of ILC to anthracyclines was low. I requested another oncologist, and also the Oncotype DX test, which had recently been made available to postmenopausal women with 1-3 positive nodes. My score indicated that I would derive zero benefit from chemo, so I went the radiation plus A/I route, which so far has worked out reasonsably well.

The best thing you can do is get informed,and find an onc who realizes that s/he is treating an individual rather than just another BC patient. You can find some pertinent studies just by entering "invasive lobular carcinoma" in your browser.

 I didn't realize that ILC could affect the nervous system. Mine's bad enough already.  What should one look for?

On this topic of ILC being different, someone on the Stage I and II thread put out a call asking if others had an "intermediate Oncotype DX" score. A disproportionately large number of the respondents had ILC. I was told that the participants in the test on which their scoring/recurrence predictions are based all had IDC. Since this test is looking at very specific behaviors of specific genes, perhaps those genes act differently when cancer is ILC vs IDC.

Do any of you know if any research is done specifically on ILC? Something tells me it would be a logistical challenge to find enough cases to study. 

Hi, Seabee,

May I know what the name of the new blood test at MD Anderson is?  

Also what was your Oncotype score?

Thank-you for posting ladies. All the more info I can learn about ILC, the better I will be my own advocate! I may not post alot but I do read everyday here. I am so glad for this place of support!!!!

Interesting topic. I was dx stage II, Grade 3 multicentric BC. Two different quadrants of the same breast with one being IDC 2.8 cm and the other ILC 1.8 cm. I am Er /pr + however in hindsight, I am not sure they tested the hormonal status of both. I had mx followed by 4xAC. No rads. I am currentlt on Tamox.I didn't have oncotype done as it is not common in Canada. I often wonder if I had all the right treatment given my two types of BC. Is there different prognostic values to each of these types? Does multicentric make a difference in outcome with a mix of ILC/IDC.

Thanks ladies

Beth

pickle141--I don't think there's a categorical difference between IDC and ILC as far as prognosis is concerned. Multicentric tumors, mixed type or not, tend to be harder to operate on and are less likely to be treated with lumpectomy, although that also depends on size and location 

I've copied a few studies relating to ILC.  I'll just post one at a time or it'll be too much at once. 

This study is six years old but it has some nice words for those with early stage ILC.

http://www.news-medical.net/news/2005/01/03/7087.aspx 

....    Now, by combining these trials together, Cristofanilli and his research team had enough patients (122 with invasive lobular carcinoma and 912 with invasive ductal carcinoma) to better understand possible effects of treatments on response and outcome. 

.....   What they found was contrary to what they had anticipated. Women with invasive lobular carcinoma had a poorer response to primary chemotherapy yet better overall survival. Specifically, only 3 percent of lobular carcinoma patients had a pathological complete response, compared to 15 percent of ductal carcinoma patients; 41 percent of women with lobular cancers had residual lymph node disease compared to 26 percent of women with ductal disease.

Yet, five years after treatment, breast cancer had not come back in 80 percent of women with lobular carcinoma, compared with 66 percent of ductal carcinoma patients. And five-year survival in women with invasive lobular carcinoma was significantly higher - 91 percent - compared with 72 percent in women with invasive ductal carcinoma.

-Sheila- 

JoyLiesWithin -

Thank you for sharing the links. The older one helped me connect the dots on my MO's approach to my treatment. As to the second, that's the comprehensive overview regarding food that I've been looking for.

Thanks! 

TinaT -

The way I interpret what they're saying is that it may seem that long-term prognosis for ILC would be better than IDC due to it's relatively non-aggressive characteristics. However, since ILC is difficult to detect, it's not usually found as early as IDC and this balances-out as far as long-term prognosis is concerned.

I know we're being closely monitored for a breast recurrence. Does anyone know how we should be monitored for distant metastases? 

Gabby, that's the big question. After my original CT scan showed only oedema in my breast where the biopsy showed a 4cm tumour, I asked what was the point of the CT scan if it didn't even show the primary tumour?  He sort of shrugged and said they'd be able to tell, then changed the subject.  I'm due to see him soon and this is on the top of my list of questions.  My CT also showed a cyst on my spleen and now I feel uncertain whether it should have been followed up.  Also I have fatty lumps over my lower ribs but they haven't grown so I hope they are just lipomas.

In Australia they don't have routine scans, at least not in my area, and I don't fancy another high dose of radiation for nothing.  We need a reliable, non-invasive blood test.  Some are being developed or tested but they take so long to come into general use,