Unsure about what's next

There are a couple of regulars here with pleomorphic - Nash among them - who may be along soon to give you some information about that. You may want to consider posting something similar in the Radiation thread and/or the Reconstruction thread, because there are fewer women with ILC and sometimes it can take a while to get someone in a similar situation to respond. You'd get a faster answer and perhaps even find some existing threads there concerning radiation after reconstruction.

I will say that I was diagnosed with ILC last summer at 45, so I'm thinking your summer this year was a lot like mine last year, and for that, I am so sorry! It's a horrible way to spend the summer! Good that you had the bilateral, with suspicious tissue lurking in the other side.

My understanding is that although radiation isn't great for reconstructed breasts in general, it's implants that can really be problematic, and you have a TRAM flap, so perhaps it wouldn't be as bad. It's a bummer that they are concerned with margins NOW - rather than before proceeding with the TRAM flap. My margins weren't great, but that's because my tumor was high up and tucked between the chest wall and my skin. It was involved with neither the skin nor the chest muscle, and it was decided that radiation would clean up the unlikely bits left, so I know they like radiation with less-than-optimal margins...I would likely have had radiation even with mastectomy, but as I'd had a lumpectomy, I was already sentenced to radiation, so my margins didn't make a difference, really.

Good luck to you!

Coleen

Hi, Denver Diva--

I can't help on the recon/radiation issue, but I can help with the pleomorphic ILC issue. It's a subtype of ILC, more aggressive than classic ILC, but even within the subtype, the aggressiveness varies, like Gitane said. Some PILC are aggressive b/c they are HER2+ (which is very rare for ILC), and some just have an aggressive biology. My oncotype was 18, close to Gitane's score of 23. The docs told me my tumor was the equivalent of a grade 3 IDC.

Here's a link to a thread on this board where we've discussed PILC at some length:

http://community.breastcancer.org/forum/71/topic/700759?page=1

Hope that helps. Glad you're enrolled in the TAILORx trial. And Colleen is right--there's sure to be info on radiation over on the reconstruction board.

Hi, DenverDiva,

Your case is pretty much similar as mine, except my ILC is not your type.   My tumor was not big but it extended to skin so I didn't get clear margin even I had bilateral mastectomy.

But don't worry about the radation, my radiologist said for reconstruction, you would get more treatments with less dose each time,  which would be good to the breast tissue.  eg. regularly women take 16 x treatments, but you would take 21 - 28 treatments with less dose. But yes, you have to spend this summer at the clinic.  I have to go there everyday. 

Hello DenverDiva,

Some similiarities  between your case and mine.I had a bifocal ILC tumor in right breast. I only had right breast skin sparing mastectomy with immediate reconstruction (silicon implants). The doctors did not recommend bilateral mastectomy for me. To respond to your question, I did have radiation even if margins were clear (more than 5 mm). I did have 22 sessions with less dose than what 'lumpectomy' women have. I did not suffer much from radiation except that it is a daily process that you need to have in your agenda  for 5/6 weeks. Radiation did not have any effects on the implant, just a milder skin burn. I only receive radiation in the breast, not in the axillary region. So far so good, and this was six months ago. PM if you want more details.