ILC Premenopausal Questions

Hi, Lola. I was 38 at diagnosis and premenopausal.

Has the onc mentioned Oncotype testing to you? It can be run on your tumor if you end up having negative nodes. The score on that should drive the chemo decision more than your age and menopausal status. A low score means that your tumor will respond better to hormone therapy than to chemo.

We've had several ILC girls on these boards who had very good success with neoaduvant chemo shrinking their tumors, so ILC can and does respond to chemo.

I had an Oncotype score of 18, which was a grey area. So taking into consideration my tumor size (2.7cm) and my young age, four oncs recommended chemo, which I did. They did tell me, though, that if my score had come back low, say an 8 or 9, that I could've just done HT.

Dose dense chemo is usually given for more aggressive tumors, and it is harder to tolerate. Unless it's clinically necessary, I don't think it's worth it from a side effect standpoint. Just my opinion--obviously do whatever your onc says. And get second and third opinions, b/c in my experience, every onc had a different chemo combo to recommend.

Hi Lola,  Very sorry you're going through this.  You're right about the folks on these boards, they are great and full of wonderful information and support.

I'm 51 and perimenopausal. My ILC was very small and low grade, so chemo was not recommended.  I had a lumpectomy, then a re excision with SNB, then radiation and now starting HT tomorrow.

All will depend on your complete pathology and nodes.  Do seek a couple of other opinions and listen to yourself too.  Like so many things you will just feel right about one treatment plan and that, with the experts, will guide your decision.

Best to you.  Donna. 

Lola, I don't want to simply echo what the other ladies have stated but I cannot stress enough the importance of the oncotype in ER+/PR+/Her2- cancers.  It plays an important role in the care planning.

I am 38 and pre-menopausal.  I underwent lumpectomy and SN excision with 0/2 nodes but positive margins and the tumors had both ductal and lobular characteristics.  After MRI, I consulted with multiple breast surgeons who all suggested bmx.  I underwent bmx with immediate SGAP reconstruction in July. 

My onc is not suggesting chemo. I had positive margins with my bmx as well so I start rads this month. I cannot take Tamox so my onc is actually suggesting Lupron to induce menopause and taking Arimidex.  That decision will be made after I finish rads.  From speaking with various ladies on the site, it seems that there are guidelines for adjuvant therapies but different onc's have varying opinions on the issue.

Good luck with your surgery and the journey.  Just know you are not alone.  There are some great ladies on this site who are walking this path with you. 

Hi Lola,

I am 39 and did chemo after surgery for my ILC, and now I'm in the middle of radiation. My two oncologists could have gone either way, so the "chemo or no chemo" decision was a big one for a while...for now I'm glad I chose to do chemo, though it did make for a tough summer! 

Good luck to you.

Jen

The first thing I learned about my diagnosis and treatment is that it is a moving target.  I was first told that my tumor was large (5+cm) and that I would need a mastectomy but probably no treatment, he suggested a BMX with immediate reconstruction.  After surgery, just a left mastectomy, I was told I had ILC 2-3cm with no involvement - which is great.  My Oncologist has been talking chemo from the start, which I would like to have because I want to make sure I do everything I can to make sure this doesn't come back.  I am waiting on my Oncotype results and am worried that if the score is too low my insurance might not cover chemo.  Is is crazy to want chemo?  I just want to do all I can.