ILC vs other breast cancers

Dixiebell - I'm glad that you loved the new onc! Regardless of his recommendations regarding radiation, I would still encourage you to arrange for a consult. As you said, you like the facts!

Hi Dixiebell

I had 1.4cm ILC in one node and 1.2cm ILC in my breast, plus DCIS and LCIS in my other breast.

I insisted on the Oncotype Dx test after my endless googling nights and reading Dr Susan Love's breast book, score that came back a 9....no chemotherapy for me!!! No rads!!

I am on tamoxifen and had a BLM. I have no regrets, I researched and made up my own mind after getting my score from my Onc. My cancer was slow growing, I didn't feel it and it was hard to find in dense tissue. I am glad it has gone, nipple sparing mastectomy 4/21/11, exchange 8/1/11, job done!! Goodbye cancer!



It is your decision, no-one else's -ensure you decide, it is your body!!!



Ali

Anyone in this group went to MD Anderson? Everyone keeps telling me I am crazy not to go get evaluated there. I honestly think though at my stage most drs follow the same regimen. And geez I have seen 3 in my area from 3 different facilities.

Thanks scubaduchess!!!

Hello

I was diagnosed with ILC in August 2009 I had 7 out of 11 lymph nodes positive for cancer.

I had 8 treatments of chemo and 33 radiation treatments It has been 2 years since I had my surgery, and I finished my chemo and radiation treatments in April 2010.  I was told that my cancer was very agressive and by the time I had my surgery that it completely covered my left

breast, so I had a double mastectomy. I didn't want to take any chances of the cancer

spreading to the other breast., The onc radiologist said that my cancer was a mean one.

I am wondering if any one else had that many lymph nodes positive. how long does it take for

this cancer to spread to other parts of my body. It upsets me that my surgery was two months after they

first found the cancer becaused it spread so fast.  It seems that I am waiting for the next shoe to fall,

Yes, I go every 6 months for blood work and to see the rad. onc.  I have been extremely tired lately, I had blood work on my thyroid or should I say no thryoid, ( had my throyd out in May 2008

and It came back ok,) I haven't had a pet scan since befor my surgery  I go back to my oncologist next week..

Yes I take arimidex, oh by the way my cancer was a grade 3

But I'm not sure what that means, can any one explain that to me

I don't know why the link I just posted isn't working. You can cut and paste or simply go to the BCO.org "Symptoms and Diagnosis" page and read all about pathology reports. There's a link for that at the top of this page...

What is invasive lobular carcinoma (ILC)?
Invasive lobular carcinoma, also known as infiltrating lobular carcinoma, is a type of breast cancer that starts in a lobule and spreads to surrounding breast tissue. If not treated at an early stage, ILC also can move into other parts of the body, such as the uterus or ovaries. ILC is the second most common type of invasive breast cancer, accounting for 10 to 15 percent of all breast cancer cases.

Who is most likely to have ILC?
Women between the ages of 45 and 56 are most likely to have ILC. Less than 10 percent of women with breast cancer have a family history of the disease. Other factors increasing the risk of having breast cancer include having no children or the first child after age 30, early menstruation, and consuming three or more alcoholic drinks a day.

What characterizes ILC?
ILC is characterized by a general thickening of an area of the breast, usually the section above the nipple and toward the arm. You may not be able to feel a breast lump or hard mass. Instead, an area of breast tissue may only feel differently than the rest of your breast. ILC also is less likely to appear on a mammogram. When it does appear, it may show as a mass with fine spikes radiating from the edges or appear as an asymmetry compared to the other breast.

As far as I understand, in general, BC isn't fast moving. My ILC was found on mammo at 46, I had gone faithfully since 40 cause family history is lousy with BC. The problem is that it is finger-like, they can't easily measure it like IDC.



Agree, stay on your medical team and expand it as needed when you dont get what you need out of them.

Hi ladies, I opted out of chemo and started on AI's today. Pet scan was negative, oncotype score was a 5. So made the decision for AI's only. Already having hot flashes and a headache and nausea. Geez. Thanks to everyone for all the input to help me make an informed decision. The oncotype actually comes with a node + page now!

dixiebell - Yay!  I'm sure you're feeling much better now that a plan is starting to take shape!

I got headaches (no nausea or instant hot flashes, though) after a few days on anastrazole, but they were't unbearable and they gradually went away.  In case you aren't aware, there are a few threads relating to AI side effects.  Many of the ones that crop up right away could ease off - I hope that happens for you.

Take care!!!

Hi Dixiebell,

Sorry for delay in responding, I never did get a PET scan, my current Onc said no,and I am kinda worried about that, so I have asked for a referral for a 2nd opinion from another Onc (one highly recommended and pro-active) to see if they recommend one. Plus being pre-menopausal I wonder if I should be doing more, like the CYP26D test..etc etc..

I just want to be sure I am clear!  

Well I went back to my onocologist and My blood work was good, Still (I hope) in remission

Yaaaaaaaaaaaaaaaaaaaaa! He took me off of the arimidex for two months, To see if that made a difference , being so tired.  I hope every one out there has a good report also.

Nancy

since February 2010.