Looking for information - invasive lobular cancer

http://www.ncbi.nlm.nih.gov/pubmed/24567879

This study identifies a group of women with ILBC who did not need chemotherapy to get very good survival rates. They all had grade 1 tumours or ER-positive (ER+) grade 2 tumours with Ki67 = 30%. And this group had such a good long-term prognosis that chemotherapy can be safely avoided and exclusion of endocrine therapy considered. This might be a good article to discuss with your surgeon.

Hope this is useful.best wishes

http://www.ncbi.nlm.nih.gov/pubmed/24567879

This study identifies a group of women with ILBC who did not need chemotherapy to get very good survival rates. They all had grade 1 tumours or ER-positive (ER+) grade 2 tumours with Ki67 = 30%. And this group had such a good long-term prognosis that chemotherapy can be safely avoided and exclusion of endocrine therapy considered. This might be a good article to discuss with your surgeon.

Hope this is useful.best wishes

Hi, this research study into Invasive Lobular Carcinoma could hold some answers for you.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1357735/

It says that ILBC tumors are much harder  to image clearly with ultrasound than the more common IDC and that they are prone to come in multiples in different parts of the breast, so there can be more tumors  spread around the breast, some of which they may not see on the ultrasound. Also ILBC tumors often turn out to be bigger than they appeared on ultrasound. All of which adds to  surgeons prefering to do a mastectomy not a lumpectomy to be sure they have got all the tumors and not missed any.

Hi Janelle66, Did your surgeon say why he recommended a mastectomy rather than a lumpectomy, and why he thought you should have one now after the lumpectomy and why he wants you to have these other treatments? It is disappointing when they tell you what they recommend without giving a good explanation. For me, in the stress of the situation, I sometimes found it really hard to hear what they were telling me, and took another adult to be my "ears" But there could be some very good reasons fthey are advising you to have further surgery, and radiotherapy and chemo   despite a successful lumpectomy.

I was lucky enough to have a very patient and helpful surgeon and also a lovely oncologist who between them did explain it to me. I will pass on below what they have told me.

Initially, breast cancer was only treated with surgery. But then they found that most women who just had surgery, (be it lumpectomy or any variety of mastectomy), had the cancer come back within 5 to 10 years and kill them. Sometimes it was a local recurrence, ie next to where the first cancer was, eg ribcage, chestwall, lymph nodes, etc,Sometimes it was a distant metastatic recurrence, eg in liver, brain, lungs etc. But once it spread, the chances of survival became much much lower.

While in your body, most sorts of breast cancer try to invade the surrounding tissue eg chest-wall, skin or rib-bones, and also to spread into nearby lymph nodes or bloodvessels, and also to use their stemcell-like cancer cells to travel incognito in theblood then get themselves into other organs including liver, lungs, spine. Once there, if they can establish a base,  they then transform themselves into bonetype, livertype, lungtype cells and start to grow new secondary or metastatic  breast cancers there.

So Breast Cancer surgeons and oncologists began insisting on radiotherapy almost every time they did a lumpectomy to prevent local or regional recurrence, and chemotherapy for cancers that are likely to produce distant metastases.

The tumor and sentinel nodes are closely analysed by the pathologists for the pathology report. Great that they got clear margins for you. But there can still be cancer cells left in other sets of lymph nodes by your breastbone or collarbone, or in the remaining breast tissue, or in your blood, or elsewhere in your body. The CT scan and bone scan you had can only identify cancers that are more than 1cm. I had a mastectomy, but was then told that without further treatment, I had a 45%chance of a recurrence within 5years, and with herceptin and TCH chemotherapy, I hada 6%chance of recurrence.

Smaller metastases can be present but unidentifable in your body and need to be got rid of as part of your cancer treatment. If your surgeon suggests further treatment, at very least, it would be wise to get a second opinion. There are also special tests that can be done on your tumor tissue to check how much having particular chemo and radiotherapy treatments will improve your chances. Ask your surgeon or oncologist about getting this done. 

So for all these reasons, there are often quite high chances that even if your tumors have been cut out via lumpectomy, you could still have some aggressive cancer cells left behind and need to strongly consider accepting radiotherapy and or chemo if they recommend it with good reason..

Radiotherapy in generally focussed very closely on  the most at risk areas close to where  the cancer was, or positive/possibly positive lymph nodes.

Chemotherapy and Herceptin-related-targetted-therapy treatments mop up cancer cells in your lymph system, blood system, and any areas or spreading or metastatic cancer, and are recommended if it is thought that they will make a big difference to your chances of survival.

A lot depends on how key factors in your pathology report. The most important ones are

1)how big were  the tumors  (ie less than 2cm, 2-5cm, or bigger),

2)what Grade were they?

3)What Stage were they?

4) whether they were estrogen-receptor positive or neg, progesterone-receptor positive or neg, HER2-neu-receptor positive or neg, If all three are negative, you are triple negative, if you are pos for estrogen and/or progestorone, you have a hormonal-receptive cancer. If you have an HER2-neu positive score of 3, whether or not you have hormonal receptive cancer, you are HER2positive and would almost certainly be strongly advised by your oncologist to have chemo plus herceptin as part of your treatment programme because it will drop your risk of cancer recurrence within 5 years from 45- 55% down to 7-12%

5)how many axillary nodes were taken out and how many of them were positive, and were any other nodes eg in breast bone or by collarbone pos?

6)Didyou have any lymphovascular invasion?

7}Whether they got clear margins or not,

8)which quadrand the tumors were in.

Oh, apparently they sometimes recommend a mastectomy after doing a lumpectomy because they found more invasive  tumors in your breast that  they still need to remove or because there is  pre-cancerous tissue that is very likely to become cancerous, or because they have had to remove so much tissue that the remaining breast is not going to have a very good result. But  this is all just possibilities: you really need a proper answer from your surgeon.

A friend with cancer advised me to think of the next year as being time spent getting well, undergoing the treatment and recovering from treatment, surgery and cancer. Then after that to pick up my life again. I have found this a helpful way to view the process. Surgery, chemo and radiotherapy all strike great fear into our hearts but they have learnt how to help us get through these treatments with fewer symptoms and better recovery, and we find we can actually survive a tough regime to get a good chance of a few more decades of life. It is a really hard decision sometimes, but take your cancer seriously, and consider long and hard what you want. These treatments are often only possible just after surgery and if you leave it, you may then not be able to have it and wish you had. Best wishes with making a really hard decision.

Well no real advice but it seems to be affected by all of your clinical information and who you see..and what you want. 

some sites detail pathology which may be useful

mine:  infilitrating duct

grade 2 20mm

one lymph node 0.8mm

er pos, pr positive,   her2 negative

treatment: lumpdectomy , radiation and now on tamoxafin

Best wishes