Pleomorphic ILC

I just found this site and am glad to see it. I had a very radpidly growing breast cancer diagnosed last November.  It is Pleomorphic Variant ILC which grew to a large size literally in a matter of days. I have completed Chemotherapy (A/C and then Taxol) followed by bilateral mastectomy and then Radiation Therapy. I am ER + and am now on Femara. I sill have some neuropathy. It will be nice to chat with others with this rare cancer.

Glad I found this site as well!  Today I was given my surgical report from bilateral masectomy last Wednesday.  I was "upgraded' (core biopsy) from IDC grade 2 to ILC grade 3 pleumorphic type with 10 possitive  nodes. My lump grew overnight into a hens egg so knew it was aggressive. Tomorrow I meet with the oncology team (Mayo) and have lots of questions? I opted for bilateral masectomy, but wonder if I should have gone with chemo first? Oh well this is not the time to look back!  I hope to be able to pass on anything I learn as well as connect with others who have this type of breast cancer.

CJ

CJH  You and your doctors did the right thing by having surgery first. Any tumors 5 cm or more and/or with known positive nodes or other metastases would typically start with chemo. Often with the intial biopsy reading the pathologist can't tell the difference between IDC and ILC. Sometimes they use the term invasive mammary carcinoma. Special tests are run to help with the final diagnosis. (E-cadherin will help differentiate ductal from lobular types.) Also, pleomorphic variants are typically ER+ and Her-. We all second guess our therapy at first but you are on the right course. Mine also grew overnight. It was managed quickly, but we had to wait over the week-end to get much done and it grew about an inch in that time. Scary. I read alot about this and ask a lot of questions. We knew immediately I had an aggressive breast cancer - my husband is a Radiologist.

I will keep in touch. It's so nice to have a site like this for us. I'm learning a lot with just reading what others have written. Take care.

Pleomorphic Variant ILC is rare and he may not be aware of it. (It is less than 1% of breast cancer's). It is true that the word "pleomorphic" describes cells of different shapes and sizes within the tissue. Many cancers can have pleomorphic cells. Aggressive ductal cancers can have pleomorphic cells, but pleomorphic variant is a specific recognized variant that he needs to become aware of. My oncologist had not seen one but at least he knew or learned about it. Furthermore, he consulted with a well recognized breast oncologist who I also saw for a second opinion. I'm not sure that changes the treatment much but it does indicate an aggressive variant with different statistics for recurrence and survival. Still - probably better that you didn't hit him!

Had two grueling days of imaging tests and appointments.  I had a PET-Scan, MRI, MUGA, ultra sound, EKG, research study blood sample, had two separate doctors appointments and met the research coordinator and chemo nurse - I'm beat!

The big news is I still get to keep my "science project" status.  My oncol. believes the path. report is in error and that I'm actually "P-ILC" and not "IDC".  We had a pretty good appointment and got a lot of things cleared up.

So ladies I guess I'll on this site alittle bit longer.

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Gitane -

My primarily test results are in ..... my ocol. called them "fairly striking" ...... very good news.

Rover

Received the imaging reports ...... good news indeed.   My lymph nodes shrunk by 50% but it's hard to a put numeric value on the tumor reduction because there are three tumor measurements (length, width, depth) and the tumor didn't reduce uniformly but it is impressive.  There were a lot of "significant response", "dramatic reduction" and of course my docs. "fairly striking" comments - it's all good.  Next up is 15 weekly infusions of AC - oh boy!

Here I go .... my chemo siesta is over and tomorrow I start the first of 15 weekly infusions of AC and the start of  90 injections of neupogen - oh boy!

One down, 14 to go - crap! that sounds depressing ...... one down, and another one next week - ah-h! much better on the pscyhe!  Read my drs. notes from last appointment yesterday - much better.  He cleaned up the errors and even displayed a little humor.

Gitane -

Feeling fine so far with no SE but it's still early - I'm sure this will change with further infusions.  For now I'll enjoy the good days while I have them. 

I found the adriamycin infusion to be interesting. I didn't realize it  was adminstered by "push" vs. IV drip - the infusion time is much quicker.  I will be getting the same amount of adriamycin as you but my weekly doses are smaller 24 mg/m2.  I take the cytoxan orally daily with a slew of support drugs including my favorite - the neupogen injection!

Rover

RoverGirl - Hope you're feeling okay...

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Out of curiosity...I pulled out my huge stack of pathology reports. The smallest of my tumors (1.2cm) was LCIS - the larger (3.9cm) was ILC.

Pertaining to the LCIS, it says: "LCIS - pleomorphic type with focal necrosis and pagetoid extension to ducts.

Anyone know what this means? Thanks in advance!

Thanks nash -

Yes, I did have a Mast. at the time of dx and a year later had a prophyl. Thanks for the info.