Long term PILC survivors...what did you do/are doing?

Sue - There have been several women who have recently added 5-7 year survival posts. The initial pathology report I recieved indicated PILC. I was concerned so I sent the tumor slides to John Hopkins for a 2nd opinion. That pathology report indicated ILC Grade 2 with no indication of pleomorphic. I suspect that many more women are told that they have ILC with a grade reported than PILC today. The PILC boards are usually pretty sleepy.

I did want to tell you that I found radiation much easier then chemo. I used Calendula lotion on the skin in my radiation field twice each day and my skin held up really well without any burns. I do go for skin checks twice a year now and my LE did get worse but I think that radiation was one of my biggest weapons against BC. I don't regret doing it. Your RO should be able to tell you the specific percent benefit against recurrance that the radiation will provide.

Again, I'm sorry that you're dealing with this again. I hope that you begin to seem some light at the end of the tunnel. (((hugs)))

Hi Sue

I'm really sorry to hear of your recurrence, and hope it is only local.

I had a lumpectomy, TAC chemo, radiation and have been on Femara for nearly two years.

My doctor said the most important step to prevent recurrence was to keep as thin as possible.  I take vitamin D, low dose aspirin and curcumin/turmeric daily. I also take Efexor as an antidepressant and to help offset the hot flashes caused by menopause/Femara.

I had counselling regularly for about 20 months but haven't needed to see my counsellor again since about a year ago.

I also have six monthly blood tests to pick up any issues, whether cancer related or not. 

So sorry to hear, but thankfully, local recurrence does not alter life expectancy (according to the onco I had in Wisconsin).

I just passed the 6 year mark.  I think cancer is a crap shoot and even though I try to read as much as I can, I realize it will be what it will be (frustrating and maddening!!).

I had bilateral mx (my choice).  My sig line tells you my treatment.  I cut back on exercise and take less vitamins.  What I have added/take are: curcumin, 1 adult aspirin, meltatonin (20 mg. an hour before bed), bitter melon and quercetin (mainly for my seasonal allergies, but am reading this is great for cancer).

Of course, I don't know if something is brewing, since as you say, they don't check for it.....

Here's to all of us!!!

Editing to add:  I no longer do low-fat/high carb.  I swear I think that caused me pre-diabetes and cancer (just my hunch).  I do low carb/paleo.  I feel better and have managed to lose some weight.

I am really sorry you are dealing with this. 

I am barely 2 years out, so I can't really help. Like you, I had neo-adjuvant chemo and, also like you, the tumor shrank a lot, but not completely. Then I had some more chemo after, rads, ooph and AI, which I am still on.

I have groomed my diet some, but nothing too crazy. Mostly cutting out white carbs (including sweets), keeping alcohol to 3 drinks a week or less, eating lots of veggies and little red meat.

I make an effort to get 10 hours of exercise a week,  although much of that is simply walking my dog, so nothing heroic.

I try to have fun and make a serious effort to stay clear of other people's BS.