Just Diagnosed-looking for clarification on ILC questions

Hi Doris -

My understanding is that if the SN is positive, then you are likely to have axillary radiation rather than lymph node dissection (http://www.medscape.com/viewarticle/805406) - I think they've found that complete dissection is generally not necessary.

As far as the waiting goes - the time period between my surgery and the results of the oncotype test were by far the worst weeks of the whole process - see your doc for some anti-anxiety meds if needed.

As far as the prophylactic mastectomy decision goes - there are a few things to consider -- 1) how old you are (the risk of contralateral occurrence of a new tumor is generally viewed as a yearly risk - so younger women have a longer time frame to consider) and whether you have a family history / genetic disposition to BC 2) ILC (and if it's accompanied by LCIS) does seem to have a higher risk of contralateral BC than IDC does, plus it can be harder to detect. http://link.springer.com/article/10.1007/s10549-01...

BUT 1) The general risk at this point is more from distant metastasis rather than a new primary tumor in the other breast and 2) If you end up taking tamoxifen (and maybe the aromatase inhibitors too - though I haven't looked into that), it has been shown to decrease the risk of a contralateral occurrence (this was the one piece of the puzzle that I didn't really fully appreciate - though I don't think it would have changed my decision to have a BMX, as I didn't have the option of a lumpectomy on my bad boob.

ILC is nearly always slower growing than other kinds of BC and due to its formation is often diagnosed as smaller than it is in reality on scans initially. This does not mean it has grown fast, it just means its hard to see on scans.......

Best advice is not to assume anything and to take your time over agreeing to your treatment plan as there really is no rush, a week or two makes no difference whatsoever where ILC is concerned, meanwhile read up on ILC from reputable sites and ask questions that are specific to ILC as it is different to IDC yet the difference is not considered enough in my humble opinion

Sorry you had to join the club no one wants to belong to

Hi, I was diagnosed by mammogram and ultrasound and biopsies on the 13 May.  I am booked in for a mastectomy of my right breast and an axillary dissection on 15 June.  My surgeon is very good but is reluctant to give me any concrete answers about stage of cancer, treatment etc until after the surgery.  After reading these posts I can understand why.  It seems that the size of the tumour is often incorrect when diagnosed by the US and the follow up treatments need to be assessed according to the pathology report.   

I have had bone and CT scans and both of these came back negative. 

Hang in there Doris.  I too am living in the land of uncertainty at the moment.  I too have heaps of questions, and, my mind is racing so fast I don't know where to begin.