ILC is so sneaky!

I've been reading the boards for a few weeks but am just now up to writing in myself. My apologies if this gets long-winded, but it does go to my point of the sneakiness of ILC and the accidental nature of being dianosed.

I was diagnosed with ILC (as well as LCIS) on January 14, but that wasn't the beginning. Back in early November, I had a routine follow-up with a blood specialist/oncologist I've been seeing once a year for several years because I have some vague benign condition that causes excessive platelets. The assistant mistakenly told me to take off everything from the waist up, thinking I was one of the doctor's breast cancer patients. I didn't remember having to do that before, but I thought maybe she wanted to check lymph nodes. When the doctor came in, she was surprised but said as long as I was undressed, I might as well get a manual exam. I usually get all ob-gyn stuff done once a year in October, but I'd been on vacation and hadn't done anything yet except get my mammogram the week before.By the way, that mammogram had come back clear, although they noted my dense tissue.

I remember very well the point in the exam when I noticed she was spending a lot of time in this one area in the left breast. I had had a biopsy on that side (although in a different spot) six years ago (3/04) because calcifications were seen on the mammogram (dx was atypical lobular hyperplasia), so that made the anxiety kick in a little. She did find a palpable lump this time.

Because of my family history (mom dx with ILC in 11/00--doing OK now, sister dx originally in 5/05 as gastric cancer then reclassed much later as breast primary--died in 2008), the doctor put me in for an ultrasound. I did that the following Monday. The ultrasound picked up a cyst, and I think normally doctors would just say, oh it's a cyst so you don't have to worry, but my doctor requested a core biopsy.

The person doing the biopsy did an ultrasound first to confirm what they'd seen before, although she also felt the lump. She said what she saw on the ultrasound didn't look fluid-filled like a cyst. She did a core biopsy on the lump.

Then the results from that came back as atypical lobular hyperplasia. Again, my doctor didn't just stop there but referred me for a surgical consult, although she did repeat that ALH isn't cancer or even pre-cancer.

The surgeon also felt the lump. We made plans for a surgical biopsy, but because of the December holidays, I couldn't get in the schedule until Jan. 8.

On biopsy day, the surgeon came in beforehand to magic-marker me. She couldn't find the palpable lump that everybody, including her, had felt before. She thought maybe it was a cyst after all, now gone, and that the biopsy just happened to have struck a goldmine of ALH. I wanted to go ahead and have it (whatever it was) taken out anyway, as long as I was already prepped and ready to go. She agreed and said she'd take some tissue in the area we thought was where the lump was before. She had a breast radiologist come in a confirm the ultrasound in the OR. She said there was definitely a cyst in there.

During the procedure, the surgeon did find a cyst and removed it while she was in there. She also took a random amount of tissue from the questionable area.

When I got my path report, it showed that it was the cyst that showed ILC as well as LCIS. I think that surprised everyone. The other tissue showed the usual ALH. The ILC tumor was 1.5 cm but did not have clean margins. It was ER+ and HER2-.

Knowing that ILC can be sneaky and show up on the other side at some point (as well as being really hard to spot), the surgeon and oncologist discussed the option of single or bilateral mastectomy, in addition to lumpectomy. I've already had two sites on the left side showing abnormal behavior at this point, so I ruled out lumpectomy. Then the big question was one lump or two.

The oncologist had put me in for an MRI, so I decided to do that and see if it showed signs of anything going on on the right side, to help me decide. You can only get MRIs during a certain point in your cycle, so I had to wait for that. I finally had the MRI on 2/4. That was an interesting experience.

Just a couple of hours after I'd gotten back to work after the MRI, I got a call from the nurse practitioner who's acting as a coordinator. She said she'd gotten a call from the breast radiologist already because there were a couple of areas that "lit up" on the right side (the supposedly healthy side) as well as a couple on the left. At the least, I'd need to have those biopsied. With my family history and knowing the sneakiness of ILC, that confirmed my leaning toward double mastectomy. The ultimate biopsy, I guess.

Now I'm finally scheduled for Feb. 23 for the bilateral. The waiting is the hardest part (well, I haven't been through the other part yet, so we'll see). I really want to find out if there's been any spread to the nodes and what other treatments I need. I'm just over a month in from diagnosis now, so time has helped things sink in. Still, let's get going on this thing. I can't get past it until I get through it.

I also saw a plastic surgeon a couple of weeks ago, but he wouldn't be available on the 23rd, and I'd rather get going now than wait until he's available at the same time as the other surgeon. I can worry about reconstruction later. For my body type, he recommended an expander then implants, and I'm OK with that.

So if the assistant hadn't accidentally had me undress and the oncologist done the exam, or the onco persisted after the ultrasound said it was "just a cyst" and referred me for the ultrasound then the surgery, or the surgeon go ahead and operate even though the lump seemed to be gone, or the doctor allowed an MRI to get the full picture... It all seems accidental. I'd rather get going now, at age 50, than have it be more advanced by the time it was more definitive.

Like other people have said, this is a club you never wanted to be in, but it's full of wonderful people. I take strength already from you, and I hope I'll be able to pass it on to someone else, too.