My oncology doc said chemo shows little use with ILC??

Hollyboo -I was diagnosed with PILC in July, 2010. I have read studies that show that patient's with ILC who are treated with neoadjuvant chemo are less likely to have a complete response then patient's with IDC. I have never been able to find a study that looks at chemo response of PILC, either the type isn't mentioned or classic ILC present. There are many women on this board that had neoadjuvant chemo and had their tumors shrink so I don't think that it's a fact that chemo is of no benefit for patient's with ILC. If you are not entirely comfortable with your treatment plan, you should seek a second opinion, if possible at an NCI designated cancer center. I'm a firm believer in second opinions, even if for peace of mind!

Hollyboo, I am not sure what your onc means with that. As far as I know, the statement is not backed by the literature. I would definitely get a second opinion.

Did you have any positive lymph nodes? Did you have a mastectomy or a lumpectomy? Was there lympho-vascular invasion? Did they do the oncotype test?

hollyboo - I saw 3 medical oncologists, 2 at NCI designated cancer centers, who all recommended chemo for me despite my low oncotype score, 12, and my small primary tumor, 0.9 cm. I had 2 large positive nodes with extracapsular extension. I received DD (Dose Dense) AC x4 followed by DD Taxol x 4, radiation, an  oophorectomy and Arimidex. I just reached the 3 year mark and so far so good. I had a BMX and reconstruction I have some hip pain from the the Arimidex or secondary to chemo but not every day and it's nothing that Ibuprofen doesn't take care  of. I've been back at work FT since I finished radiation. It's sounds cliche but I do many things now that I would not have done before cancer and I am enjoying life!

I think that the most important thing is to be confident in your treatment plan. Wish you the best.

Melmcbee, I feel like I will be following in your footsteps, being a ILC girl and my surgery was 7/18 with 15/15 bad nodes and my PET showed more node involvement and maybe even an incapsulated invasion as well, but everything else looked good on pet all normal😄I start 8 months of chemo next week 8/15 then rads so if I follow your lead maybe I will be starting my recon next May or June. My PS did not put my TE'S in during surgery because of + nodes and he did not want any infection to delay my treatment, hard to swallow at first but in my heart I think he made the right decision.



Shary🌞

Colette...lobular breast cancer often behaves like slow growing cancers. Chemo is usually more effective on fast growing tumors. So, it's not uncommon to see a low Oncotype DX score with slow growing rarer cancers. Remember though, the Oncotype DX is just one tool of many in deciding if chemo is warranted. Check out the NCCN 2013 breast cancer treatment guidelines while also getting several opinions. And by all means, if you are ER + and your insurance pays for the Oncotype DX test... Then get it. Furthermore if you are premenopausal, ask about the SOFT trial. That study is looking at whether or not ovarian suppression is an alternative to chemo.

Agree voracious about the Oncotype test. FYI I had it done and it saved me from chemo. Insurance paid for it but Genomic Labs who conduct the testing will work with you on a sliding scale if you cant afford it. I heard they have come down from the initial cost of the test. I also agree dont rely solely on the results of that test but I have to admit aside from not having chemo having such a low score - 11 and an 8% chance of recurrence gave me a dose of optimism. Of course there are no guarantees but it is reassuring that this test was done on the biology of your cancer irrespective of family history and other factors. The results, for me, came back in 10 days. Good luck...diane

Hello everyone! I'm just now joining the forums. I appreciate all the information. I'm 57 years old, diagnosed in June, had my surgery in July and am starting chemo tomorrow. My oncotype score was 22 (intermediate range) and since my tumor was 3.5cm my oncologist recommends light chemo. He really left the decision up to me to have chemo or not, and he said that even if I just have one treatment and quit then that's better than no treatments. So I'm going to give it a try. Colette, I hope you are doing well after your first chemo treatment and that your Oncotype scores are low.