ILC and family history/ advice on treatment options

oaklandmama - I am sorry for your diagnosis especially as you have young children.  Please take some deep breaths and try not to panic.  You need to take one day at a time at the moment as the big picture is too much to handle right now.  You are doing the right thing by trying to educate yourself about your cancer and your treatment options and I can help you with some of the questions you asked.

Because ILC grows flat and spreads out and so is not particularly dense it is difficult to see on mammograms but is usually visibile on ultrasound and MRI.  MRI is the best scan to see the full extent of the tumour and its position in the breast.  It takes images from different views which are helpful in determining if surgery is possible or whether it would be better to have chemo first to shrink the tumour which would make surgery more effective.  My MRI results were available in 3 days.

In the Sentinal node test the surgeon takes the first few lymph nodes that drain lymph fluid from the breast and tests are done to see if cancer cells have spread to the nodes.  If some of the nodes are affected (node positive) chemo will generally be recommended post surgery as it is assumed the cancer has moved out of the breast possibly to other parts of the body.  If all of the nodes removed have cancer in them a further surgery may be done to remove more nodes to find out the full extent of the cancers movement through the lymph system. 

Usually the MRI only images the breast and a CT scan, a chest xray and a nuclear bone scan will be done to see if the cancer has metastised to other areas of the body ie liver, lungs, bones, brain.

Re lumpectomy for ILC - this surgery has a high re excision rate (another lumpectomy has to be done because the margins of the tissue taken in the surgery were not clear of cancer cells) because of the way it grows and often with larger tumours a mx has to be done as clear margins cannot be achieved.

At grade 2 your cancer would not usually be considered very aggressive - Grade 3 is the highest grade and so is considered the most agressive. However, if one of the three factors which make up the grade score - the mitotic score (how fast the cancer cells are dividing) - is 3 (the highest score) then it may be considered aggressive.  

If you have the BRAC gene mutation the treatment recommendation would be the bmx to try and avoid recurrance or occurance in the other breast as your chances of that happening are very high.

IMHO it would not be wise to rush into surgery without having diagnostic tests first to get information about the extent of the cancer in your breast and body.  It is impossible to make sensible decisions about treatment without that sort of information anyway so I suggest you have the MRI and whatever other tests your doctor can schedule quickly and then you will have solid facts that you can start making decisions with.

Take someone with you to the appointment with the doctor to be your ears and to take notes as you may not catch or remember everything that is said.

Please feel free to Private Message me if you feel I can be of any further help.