Path report

nash

Met with the surgeon yesterday, 5 days post-op lumpectomy. Nodes were negative (yay!), ILC tumor was 2.7 cm (she had estimated 2.5 cm when the MRI showed 4.8cm). She got clean margins for ILC, but the problem is that there is extensive LCIS throughout the breast, including the chest muscle. She had already taken part of the muscle out, but the path report is unclear on just how dirty the margins are. To complicate this, I have pleomorphic lobular, which is some weird aggressive subtype that is pretty much guaranteed to come back locally.

So, she's recommending bilat mast w/recon, which makes sense. But what I'm concerned about is the pectoralis muscle issue. We know the tumor was already in there. If there are stray LCIS cells in there, the chemo won't get them. So there's nothing to stop them from happily percolating away into ILC in my chest wall.

I'm really at a loss at what to do. Hate to have the girls lopped off for nothing. The surgeon is going to be talking to the pathologist again about the margins in the muscle, and I'm gong to be seeking several onc opinions, then will go from there.

Thoughts, anyone?

scarednancy

Hi,
I have the pleomorphic ILC type also. I had a lumpectomy followed by radiation and now tamoxifen. I also had an OncotypeDX test which scored really low and my oncolgist said I don't need chemo. I have done a lot of research on ILC and I don't think it is as bad as some say. It actually has a better outcome than IDC according to many studies. I have cut and pasted some info for you from Women's Health and Education. I hope it helps give you piece of mind.

Variant patterns have been described in which either the cytologic features or infiltrative pattern is present. These include the solid, alveolar, mixed and pleomorphic variants of ILC. They are often multifocal and bilateral, especially the pleomorphic variant. These features have little bearing on outcome either on overall survival or disease-free survival after conservative therapy. ILC are notorious for presenting diagnostic difficulties, clinically and radiographically. Although ILC is often associated with a discrete mass, a large proportion of these lesions are difficult to detect because of their insidious growth pattern. When compared with cancers of no special type but of similar size, patients of ILC have a better survival.

marshakb

Mine was pleomorphic also. (5.2 cm) I didn't have extensive LCIS thru out the breast but did have one LCIS that was 1.5 and it didn't show up on mamm/US.

I think the separate issue for you is the chest muscle involvement. Why do you say the chemo won't help with that? And radiation should also. I hadn't read the reports that pleomorphic is pratically guaranteed come back. Did your onc tell you that?

Hugs, Marsha

snicklefritz

Hi - I also had pleomorphic lobular, about the same size as yours, except I had some cancer in one lymph node. The fact that yours did not spread into the lymph nodes means it probably is not as aggressive as you might hear otherwise. My understanding is that if a pleomorphic lobular is ER and PR positive and is her/2 negative, it is no more aggressive than your garden variety ductal. Alot of the old studies on pleomorphic lobular are very old and outdated. I also have never read that the LCIS component would make it more likely to recur. I also had a lumpectomy plus radiation, and 8 chemo treatments. You may feel more confident having the bi-lateral to ease your mind, whatever feels best for you! Best wishes, Mary Jane

nash

Thanks for the replies. The surgeon is the one who said that LCIS doesn't respond to chemo, and therefore any LCIS cells in the breast or chest wall would remain after treatment. Her reasoning on the bilaterals was that my age (39), strong family history of cancer (including my mom w/bc)and the pleomorphic component all made local recurrence very strongly possible. More so than if it was classic lobular.

She also mentioned that having the reconstruction would make a chest wall recurrence easier for her to detect.

I'm really struggling w/the bilat, b/c I don't want to do it, I don't want to have reconstruction, etc, but I'll do whatever the most clinically prudent thing is. I have two oncology appts. coming up w/two different docs, so I will see what they say.

It's heartening to hear that the old studies may be overstating the aggressiveness of pleomorphic. That makes me feel better!

wallycat

The initial consult I had with the radiation oncologist (that I didn't use) said that the grading always makes lobular look more aggressive due to the nature of lobular cancer itself...he said pleomorphic wasn't as bad as people assume.
I think mine was pleo as well.

Here are things I thought about when making my decision...
1. Recurrence in same breast or contralaterally does not indicate mortality---it is just a pain in the ass to have to go through again. Can you deal with that? I couldn't.
2. Are you unsure about bilaterals because you are afraid of the reconstruction? I was terrified of reconstruction and that is one of the reasons I met with the radiation onco, but my husband said something one day that changed my outlook. After leaving the plastic surgeon's office, he said, "why do you have to have reconstruction?? It seems so barbaric" to which I replied I didn't HAVE to I just assumed I would....rethinking that whole thing made it easier to get on with the surgery. By skipping the radiation, I can always go with expanders if I feel like it. It would take a bit longer because there is no extra skin and that would also have to stretch, but it is do-able. Now, my friend had immediate reconstruction that looks AMAZING and I wish I had been brave enough to do it, but I am very content with my flat chest.
3. LCIS is a pre-cancer and there is no telling if it will become cancer, sort of like DCIS. Most gals take tamoxifen to prevent the LCIS turning into cancer.
4. My surgeon said, and I don't know if he has any clues about this and was just trying to comfort me, but that if lobular is close to the chest wall, it doesn't mean it will spread INTO the wall. It only grows in breast tissue and the only way out of the area is via lymph nodes.

Good luck. I know how difficult these decisions are!!!
Some days I miss my boobs a lot, but my DH asked me if I had it to do over again, would I be able to live without fear of a recurrence---and I couldn't. Some gals can live with more ambivalence than others....so that factors into many decisions.

nash

wallycat--thanks for the post. I'm afraid both of being boobless AND of doing the recon. It's sort of a no win. I really need to discuss the boob issue with my husband. We haven't had a quiet moment to do that yet.

My mom is Stage IV IDC, so I'm probably more afraid of Stage IV than of local recurrence, but on the other hand, I don't really care to go through all this again, either.

My surgeon felt like my LCIS would be highly likely to go to ILC again, since it did once already, and that the pleomorphic characteristic would make that even more likely to do so.

All I know about the chest wall is that the MRI showed invasion, and when the surgeon got in there, she thought it was the ILC in the chest wall, but it turned out to be the LCIS. So in my case it did get into the chest muscle.

It really helps me to discuss this with you guys. I keep going around and around with it--makes my head hurt!

wallycat

Nash, LCIS is not considered cancer, technically, so maybe that is what my surgeon meant. Maybe the LCIS would never turn into invasive cancer once it hits the chest wall...but I don't know any of this for fact.
It's interesting how many of the lobulars are so close to chest wall!!

OK, I'll "talk it out" with you and play devil's advocate

If your mom has BC and you've had BC, are you more afraid of no boobs or recurrence?

Have you talked to the radiation onco about radiation to the chest wall area? or did you say you need chemo? If you need radiation, that may decide for you if you are willing to do a DIEP or Tram flap versus flat...unless you get the expanders, wait, and then do radiation once your skin/muscle is all stretched and done.

The hardest thing for me about losing my boobs was losing the sensitivity (I was one of those gals who could orgasm with just having them touched...sorry if TOO much info) and I really thought it would be like amputation.
I have to say that though I lament and dislike the idea, the lessened worry about a cancer recurrence is worth the loss for myself. I know we are all different and that is why it is so hard for someone to just tell someone else what to do.
I was a 34D and just turned 50. I knew they didn't look as perky as they did when I was 20, but they still had feeling!!! That was the hardest for me. Looking at myself flat in clothing (I don't wear prosthesis...just go natural now) doesn't bother me much at all...and I'm only 5 weeks out!!
Good luck with your decision!!

Anonymous

nash--I'm going to try and PM you, hope it goes thru

nash

awb--I PM'd you back.

wallycat--haven't met with the radiation onc yet. Surgeon seems to think b/c of clean margins I don't need chest wall radiation. I'm not a TRAM or DIEP candidate, don't want lat flap. Not logistically feasible to travel for SGAP or IGAP, so implants would be it.

Will also be doing chemo. Surgeon said I need to make the bilat decision during chemo, but before rads to lumpectomy site.

Regarding sensitivity--big issue for sure. Surgeon thought she'd be able to do nipple sparing mast on me, which might allow for some feeling.

I've followed your posts about your bilat, and I am really happy that it's worked out so well for you! I hope and pray I can reach a decision that I end up being really comfortable with, no regrets sort of thing.

LizM

Nash, for whatever it's worth. My tumor was deep and 2 mm from the chest wall. I had IDC, ILC, LCIS and DCIS all in the same tumor. My surgeon said I didn't need rads but after consultation with rads oncologist I did opt for rads due to location of tumor and 1 pos node. I also opted for a bi-lateral and they found atypical lobular hyperplasia in my good breast so it probably would have turned into ILC down the road. Anyway, I had immediate reconstruction with tissue expanders/impants and had rads on the expanders after chemo. I had my final implant exchange surgery six months later and I have not encountered any problems. It is possible to have implants and rads even though the plastic surgeon gets a little nervous about it.

nash

Thanks, LizM. Wow--you had a busy tumor! Glad to hear you're happy with your implants--that's reassuring that you did well w/the rads on the expanders.