How is this even possible!!! ILC??? does anyone understand it?

hi. I feel the same way as you. My onco said i had this tumor growing inside of me which i never felt and all of a sudden it is there. I felt a thickening while showering. My gut told me that was not going to be good. Gut is always right.

I dont think we will ever get our answers. Doctors dont even have the answers.

Im sorry for what u are going through and hope to find you in a much better place soon

Blessings right back.

😜🙏

I did forget one important thing. I have read that ILC sometimes creates slight but noticeable changes in the breast, maybe different shape or a slight dimpling look. For me there were slight changes that I didn't really think much of it. However, I slept on my stomach prior to all this and that is where I felt a difference. I couldn't feel a lump but that breast didn't feel right when I slept. Woman need to get checked every year and stress to their doctors when something is different. We know our bodies better than anyone.

all this is very interesting to read. Also a bit scary. It seems ILC is missed more often than not. So here's my situation:

Multiple surgical biopsies, all benign. I attributed increased "pulling" to scar tissue, but then thought I felt something. Nothing on mammogram, but primary MD felt it and US found something. CN biopsy: punctured a cyst, found ALH. Surgical biopsy in January: LCIS, extensive with micro calcification and other benign garbage. Second path opinion was the same. Now. On Aromasin.

Current problem, in my head? I feel a small lump behind nipple. It seems to be in the same place I felt it before surgery. And the pulling has resumed. Now, I am again attributing it to scar. But the lumpfeels bigger. Could they have missed something. Posts here make me wonder. I see the oncologist for recheck next week and will discuss it with her. Previously, she has told me that MRI is not necessary "at your age." I am an active 69 years old, fighting to swim my daily mile or walk my 5 mile goal, despite the aches and pains of .Aromasin. If MO dismisses this lump as nothing, should I press for an MRI? What does age have to do with it, other than the years have caused benign garbage to accumulate? By the way...heterogeneously dense breasts, father and two uncles with prostate cancer, aunt and cousins with BC.

Alittle, please make your doc watch this: https://www.youtube.com/watch?v=jWPRD52H5F4 It is only 12 minutes and it has to do with treatment of "older" women. Then demand an MRI. It is probably nothing, but 1. that thing about age is complete bull and 2. you deserve to have full info.

thanks. Chloesmom. I'll see you at the gym in 2040.

Alittle, you are welcome. The guy happens to be my doctor, which is how I came across it. But I think it is quite eye-opening that women over 60 are a) considered "elderly" in medical parlance and b) excluded from most studies. My doc is quite adamant about fitting the treatment to the patient without prejudice and taking into consideration QOL, personality and state of mind, and I am quite sure he would give you an MRI in a heartbeat.

So glad you checked in December! I thought I was the only one whining!

Reading the posts, I have to chime in: my tumor mass was very palpable. When I questioned my doctors about my diagnosis, they told me that's what they had observed in other ILC patients also, despite the common knowledge to the contrary. This beast apparently is a "shape changer" in different people.

I stopped Tamox since 2013. But I still suffer from really bad leg cramps so I assume some residual drug is still in my system. Yet I was diagnosed with ILC this year. Since ILC supposedly takes time to grow, I think it means Tamox does not protect me from ILC much.

I had UMX one at a time.

For me, the procedure isn't really bad. The first time I had surgery they kept me overnight at the hospital. The second time, as soon as I woke up, they sent me home. It was sore but they also gave you enough pain meds. I think it's wise to make an effort to prevent constipation from the beginning. It might take some trials to find a best position to sleep. Three weeks out I felt pretty much recovered. Six weeks out I was out and about in Yellow Stone because it was my in-law's anniversary and they requested the presence of family members. Sigh.

It was the "drains" that bothered me more. They were mentally taxing but didn't hurt or anything. They are not hard to take care of either. Most people will have them out, I think, in one week. For me they took much longer, hence the resentment.

Do shop around about the reconstruction surgeon. They have different approaches and opinions about what's feasible or not. For me, the UMX and recon happened in one surgery, but you don't have to choose that route if you need time to think.

Leslie do you have a recliner? If so you may want to sleep in it. If not you may want to invest in a foam wedge. I skept in the recliner with small pillows under my arms for 10 days took Tylenol for a day. The pain wasn't the issue, it was trying to move and not pull on the incisions and drains

Good luck with your surgery.  I had a double lumpectomy with radiation and I am taking Arimidex.  I took zoladex for 3 months to suppress my ovaries and then I had an oophorectomy to medically induce menopause so that I could take an Aromatase Inhibitor (Arimidex/Anastrazole).  I was not in menopause or even perimenopause at dx. 

I cannot comment on a mastecomy.  However, I sleep on my stomach and/or side.  Because so much tissue was removed with my double lumpectomies in my left breast, they had to do plastic surgery to both breasts so that I would look normal.  Actually, my plastice surgeon was phenomenal and I look great now.  Much better than before!   However, sleeping on my back was really difficult.  I love the idea of a recliner.  Unfortunately, I wasn't home - I live in Florida and I was treated at M.D. Anderson Cancer Center in Texas, so I was not home and did not have the option of a recliner.  I used many pillows.  It was really hard to get comfortable and to sleep.  However, the surgery was easy for me but it is different surgery than you will be having.

Good luck again.

Definitely small pillows to rest under your forearms so there isn't a drag on your shoulders. Be sure to hold the drain tubes near your skin when you empty them so they don't pull. ( kind of like holding a child s hair near the scalp when combing out a knot so you don't tug on the scalp).