Has anyone not had a mastcetomy with Ivasive Lobular?

Hi, LizziesNuNu - ILC doesn't "move" to the other breast. It is allegedly found more often in both breasts than IDC, forming there at the same time, but it isn't always in both breasts and it doesn't move from one to the other. The MRI will help them see what all you may have going on in your breasts, which may help to make the decision. My MRI's showed nothing going on except for the tumor we knew about. As I posted above in this thread, I opted to start with lumpectomy, knowing that if there was more in there that was revealed during surgery or we couldn't get clean margins or whatever, we'd possibly have to do more. You can always have more surgery, but you can't put things back on. Read Dr. Susan Love's Breast book. She presents an excellent discussion of mastectomy vs lumpectomy. It's more about (1) how big the tumor is and whether it can be removed via lumpectomy with good results and (2) your personal tolerance for follow-up.

I haven't heard of ILC as aggressive - I thought it depended more on the grade. Mine wasn't aggressive. It appeared to be slow-growing and very organized.

It doesn't hurt to get a second opinion. In my case, it was actually an oncologist who suggested that perhaps a bilateral mastectomy would be overkill. This led me to take some time and do a lot of reading and research. With so much of this, you just make the most informed choice you can, and then you move on. There's no "right or wrong," which is SO frustrating as we're used to medical professionals just telling us what specific treatment we need for our other conditions. That leaves you stuck deciding what's right for you, which may not be what someone else did or would do. 

My DX was exactly like yours.  Only I am older (57) and after radiation am on Femara for five years to help calm down the LCIS and hyperplasia.  I did have to have a reexcision to get a clear margin.  The tenacles from lobular cancer do concern me.  I get a new baseline mamogram the end of August. (I also had breast reduction surgery on both breasts)  My oncologist said she didn't feel an MRI was necessary since the cancer origionally showed up on a mamogram.  But after reading everyone's experiences, I'm wondering if I should insist on an MRI.  What do you all think?  Thanks.  Hugs!

LizziesNuNu--Yes, get as much information as you can. I'd don't know who your breast surgeon is, but she doesn't seem very familiar with lobular.  Is she in fact an experienced breast surgeon, or a general surgeon who does breasts occasionally? If your recollection of what she said is accurate, I'd be sure to get a second opinion, ideally from a specialist at a reputable cancer center. I would also be sure that my surgeon had extensive experience with breast cancer.

 MRIs do detect more than mammograms, though the new digital mammos are certainly a great improvement over the earlier ones. MRI's can also produce false positives and cause unnecessary biopsies, but to me it's better to have a false alarm than to miss something important. I just had a follow-up mammo (digital) followed by ultrasound, and all they found was a small seroma and lots of edemous fluid. I'm scheduled for an MRI in January.

annie--my mom had ILC many years ago and didn't have mastectomy.  After a lumpectomy, hse had radiation and tamoxifen and is now a survivor of over 22 years without a recurrence.

anne

Hi, LizziesNunu,

My surgeon highly suggested me to get mastectomy, because besides the ILC tumor,  they also found an atypical spot at another location in the same breast and my surgeon said ILC could be multi-focul, and I told her I don't want to leave one breast alone and she said bi-lateral mast would be good as ILC could spread to another breast.   

MRI found 2 x atypical spots in another breast.  But after sugery,  the atypical spot in the ILC breast was confirmed as LCIS,  and the other 2 x suspicous spots in the good breast were confirmed as B9.   My ONC and radiologists think bilateral mast is too aggressive and I don't need to do that.

Actually it depends on whether you are a worrier......I made decision not only 'cause my surgeon supports it, but also 'cause I am a worrier,  if I didn't take mastectomy, I would worry about my breasts much more, and I would also worry about whether I got clear margin from the surgery. 

It also depends on whether your hubby think about it or how important your breasts are to you. 

Hi Annie--Yes, you can have a lumpectomy for a tumor that is 2cm, or for that matter much larger. A lot depends on the size of the breast and the location of the tumor.

LizziesNuNu--Pleomorphic lobular is sometimes considered a more aggressive variety, and prominent signet ring cells might also be considered a sign of an aggressive tumor. The high proliferation index means that your tumor cells divide rapidly.  But for all that, the tumor is still only Grade 2, which is average. You seem to be Her2+, which is considered a sign of an aggressive tumor, and probably means that chemo will be recommended. But I still don't see how this adds up to the desirability of mastectomy rather than lumpectomy. Your surgeon should be able to explain her rationale for this, and you have every reason to ask, and also to get a second opinion

I was diagnosed with pleomorphic lobular carcinoma in February.  My tumor was huge.  It was never actually measured because it was not coming out clearly on any of the diagnostic studies.  I wore a prosthesis on the other side because I was so lopsided (the tumor appeared out of nowhere in about a month)  I had mets to many lymph nodes and bones. I was seen at Sloan Kettering and by a doctor in New Jersey.  I was started on hormonal therapy without having any surgery (I had a biopsy of lymph node and oophrectomy) chemo or rads.  My tumor markers have declined monthly.  I also have a cell search test done monthly which has significantly declined.  I had a ct scan of my chest this week which showed a significant decrease in tumor size and almost negligible lymph node involvement (I no longer wear the prosthesis as my breast has significantly decreased in size with the shrinking of the tumor).  I also had some spots in my lung fields which have disappeared.  I still have bone mets but I am on zometa which is hopefully helping those.  A masectomy is not out of the question but will be discussed in the future. 

Dear Jana ,My lLC was missed on every mamo. and it was 21/2 inches across! unbelievable! I found it myself and an ultasound confirmed it. MRI's show EVERYTHING. Don't get mamography's without backup of ulrasound, thats my advice.

LizziesNuNu--If you have more than one location, then a mast is probably your best option. Best wishes
for all stages of your treatment.

I had a clean mammo in Feb 2008.  I found a hard spot in November.  Mammo and ultrasound showed a 4cm mass.  MRI WAS NEGATIVE.  Had biopsy - IDC.  Opted for mammo because I have small breasts.  Turned out to be 3.9 cm ILC.  4 rounds AC, 12 rounds taxol.  In a clinical study for Avastin.  Having the other breast removed next year.

LizziesNuNu -- I also had a mast. and found it really wasn't as bad as I thought it would be.  Take it easy though! 

I am still suffering side effects from the chemo.  My last chemo was July 16, 2009.  My surgeon is comfortable with my decision - this way I do not have to worry about bc again!!  Had I known that it was ILC at the time of the surgery, I would have had both breasts done then.  ILC is too dang sneaky and that is why I don't want to worry again about this.  I have 8 more treatments of avastin, but it is causing such bone/muscle pain that I am thinking about stopping it. No history of bc in my family - I was also brc1 negative.  I had micro-metasasis in the sentinel lymph node, so I ended up getting the rest of the nodes removed and they found 2 more positive ones.  I am feeling just ok right now. 

Add me to the lumpectomy list.  I had a 2.5cm ILC- medium grade- er/pr+ her2-it had not spread- negative nodes, it was contained- clear margins the first time.  Did the oncotype-opted for chemo, radiation and hormonal therapy.  With all of that, my potential chance for recurrence is about 9%--- I could not have done any more.  No one recommended a mastectomy--- my breast surgeon was one of the best in the business and she said she would never recommend a mastectomy for someone with my stats....

 My lump was not picked up by mammogram-found by my PCP in my regular physcial--- I don't have any faith at all in mammography as the only measure--- I will be having annual MRI's as well as  at least 4 breast exams by my doctors each year... along with my own SBE's.... I feel like I made the best decision--- chemo was not fun, but it was only 4 times and I tolerated that and radiation well.  Still adjusting to the femara--- started it in July.  

These are hard choices- I have friends who insisted on mast. in situations that did not seem to call for such a drastic choice, but they are personal choices.  For me, this seemed to be the best approach--- and I am going to live my life as if it is never coming back!!!!

Carole

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