ILC Just Diagnosed

Hi Mary625 -- I'm sorry about your diagnosis.   After I was diagnosed with ILC a little over a year ago I found this discussion board to be a very helpful resource. 

It sounds like you are already very informed about the unique aspects of ILC.  One thing everyone will tell you is that it is "sneaky" and often doesn't show up accurately on imaging.  I had clean mammograms for years while mine was growing and it wasn't until I insisted on an ultrasound that it was found.  And even then the ultrasound showed the mass to be much smaller than what my surgeon said it probably was.

After I was diagnosed I had an MRI, which I was told was the most accurate in detecting ILC.  So you might want to ask about that. Also, because ILC is often multifocal and sometimes occurs in both breasts, an MRI might be helpful in determining surgical options.  In my case, the MRI revealed that I had two adjacent masses in one breast but nothing in the other. 

I was also told by the doctors in my family that the selection of a surgeon is particularly important for ILC because it is trickier to remove.  You are lucky that you live in the D.C. area (I used to live in Northern Virginia but now live in Montana) and have a choice of breast specialists.  I can't help you with suggestions -- maybe there are some D.C. members with ideas, if you haven't already made up your mind.  I went to Colorado.

ILC can be very responsive to hormonal therapy.  In my case, they decided to do hormonal therapy prior to surgery in an attempt to reduce the cancer sufficiently for a lumpectomy instead of a mastectomy.  (They said that chemo was unlikely to have any effect.) They gave me low odds that it would shrink enough but because I was 100% ER+ it might be worth a shot.  I have been on anastrazole for a year and monitored with ultrasounds and MRIs.  According to the MRI I had last week there is no evidence of remaining cancer, a result that no one expected.  They won't know for sure what is there until I have surgery so I'm having a lumpectomy and sentinel node biopsy the week after next.  The neoadjuvant hormonal approach isn't for everyone -- it's slow and not all doctors are comfortable with it -- but you might want to ask about it.

I hope this helps and that more experienced ILCers will also respond.  Feel free to PM me if you have any questions or there is anything I can do to help.  Best of luck.   

JSwan - I was typing when your post appreared.NED on MRI is incredible news! My tumor was only 0.9 cm but I often wish that I was treated before surgery so that I would know what the response was. Hoping that the final path shows no active cancer!!!!

John Hopkins is one of the 3 NIH breast cancer centers that "specializes" in ILC. If I were in DC I would make the trip. If nothing else, get a second opinion from them.

I didn't have any of the top 3 ILC cancer centers in my state so I took a gamble. I have no way of knowing if any of my treatment is working.  

Hi Katarina, I'm curious how you find out that Johns Hopkins specializes in ILC. I've only heard of a dr. Cristanelli (sp?) at Md Anderson. I'd be curious to hear more about this. What are the other centers?



Also, JSwan -- I think you're treatment is amazing! I had the book thrown at me - major chemotherapy that I do'nt think did much for me. But, I was stage III, so wasn't given much choice. I didn't start my anti-hormonals until 6 mos after diagnosis when chemotherapy ended. I really wish I had it sooner. But, I was sure that I was doing a BMX because my ILC was multifocal. Your story is exciting to read and encouraging because it shows how strong and effective the hormonals can be.



Mary, I'd like to add that my MRI showed ILC in one node, but during surgery (sentinel node biopsy), they found it in another so they proceeded to an axillary dissection (had 14 nodes removed altogether). The f/u pathology found ILC in two more nodes (thus stage III). Don't want to alarm you, but it's important to know that your final treatment decisions are based on the final pathology. Also, I'm almost three years out and doing great. The first few months are so rough, but you will get through them. And, you will land back on planet earth (rather than planet cancer) and resume your life.



Amanda

Sorry! Pushed send before I finished!



Needed reassurance from three oncs who emphatically told me that chemo would do more harm than good in my case and that hormonal therapy is the way to go. Been on tamoxifen, Lupron shots and Zometa (IV twice a year) and am doing well.



Good luck, Mary.



Shari

Sounds like things have changed since my dx, I had ILC  5 cm tumor and had bi-lateral mx and chemo and radiation and tamoxifen - in that order - but something must be working - I'm still here, fat and sassy. My mom had ILC too - but she did only a mx and tamoxifen. She's still here too. She was post menopausal and I was not - We do not have the gene even though we both have ILC - does anyone know if that is common for a familial connection? I worry about my 2 sisters with 2 first degree relatives having BC. Take care all - Ellie

i was just diagnosed with stage 3b (i think) and ive been started on chemo even though i will ask my oncologist tomao about hormonal therapy as well but like was said it depends on the size of the lump. mine was 7cm and was already present in the axilla way before diagnosis. im encouraged from the posts im reading as i thot there was no hope of survival.