Unsure about what's next

Anonymous

Hi all, I am new to this, but I see so much wisdom in all of your postings that I am sure someone out there can help me understand my situation better.  I am 45 and was diagnosed with ILC in May '09.  My tumors were on the left side, and my surgeon had some doubts about the right side, so I decided to have bilateral mastectomy.  The right side did prove to have LCIS when biopsied.  My surgery was on 7/14/09, the sentinal node was clear, so I opted to have immediate reconstruction with a TRAM flap.  I saw my oncologist for the for the first time this week and she is not happy with the margin the surgeon got on the left side.  Because this was a skin sparing surgery, I guess there is a risk of there still being cancer cells, the margin is 3mm.  The oncologist wants me to see a radiation oncologist.  I understand that radiation to a reconstructed breast isn't good.  Has anyone had experience with this?  She also mentioned that the cells of my tumor are pleomorphic, does anyone have info on what that means in terms of prognosis?  I entered into the TAILORx clinical trial, so am waiting for my recurrence score to decide about chemo.  I would so love to hear from anyone who has had experience with a situation like mine.  You are all wonderful for taking time to care about us newbies.

Kleenex

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

Gitane

Hello DenverDiva,  My case is unlike yours in many ways, so I will help where I can.  I, too, had pleomorphic ILC, with multiple tumors in the left breast. I had many tumors, all small, but lots.  I had a mastectomy, bilateral, because I didn't want to worry about the "healthy" breast.  You can see that I am a bit over cautious.  My closest margin was 7 mm; it was at the posterior.  The oncologist never suggested radiation.  It might be very different when next to the skin, I don't know.  I had expanders and implants, so I cannot really address the situation with TRAM.  I have pleomorphic.  My cancer is different than most.  It's ER+ PR- Her2-.  Most are strongly positive for ER and PR.  I also asked them to test for VEGF.  Mine was positive for VEGF.  This is rare in lobular.  Finally, I had them run an Oncotype DX and my score was 23.  This is higher than anyone's on this board as far as I know, who has pleomorphic that is not Her2+.  There are scores like 8 and 9 and many people have a very good prognosis with the pleomorphic diagnosis, so please do not be discouraged or frightened by that.  It is very encouraging that your SLN showed clear nodes.  I did not have that either.  There were isolated tumor cells in 3 of 9 nodes, and a cluster of 1mm in one of those 3 nodes.  That, they have told me, makes me possibly at higher risk for relapse.  I had chemo ( 6 rounds of AC ) and I'm very glad that it was effective to some extent on my tumors, 95% shrinkage by MRI, although pathology shows I didn't have a complete response.  The TAILORX trial will help in the future to know what that OncotypeDX score means.  In the meantime we have to rely on those old TNM criteria to help us know our treatment options and prognosis as much as possible.  Please let us know what happens.  We are all pulling for you and wish you the very best.  G 

nash

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.

Anonymous

Thank you all so much!  This is so not how I planned to spend my summer, but you have all helped ease my mind.  I looked at the other thread, thanks Nash.  It is a lot to wrap my brain around, but it helps to have info.  I am anxious to get my score, but less so having read more about all of this.  I will keep you posted on how that goes.  I will head over to the reconstruction thread and see if anyone has thoughts on my other issue.  Thanks again.

hlya

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. 

Anonymous

Thank you LuckyA, that info is very helpful.  Hope all is going well for you.  I see the rad onc on Friday so I will see what she has to say.

lilablue

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.