Skin sparing safe with ILC?

mystikmommy

I was diagnosed in late March of this year with Stage II ILC.  I decided to undergo AC/T chemo first and then have a bilateral mastectomy without nipple sparing.  I had one main mass with two satellites.  My general surgeon wants to remove the skin that was over the masses and the satellites, but I am questioning whether or not that is necessary.  I do trust him, but I want to know how it is determined that the skin there needs removed at this point?  I have been reading that would be determined once he is in there doing the surgery, but if the mass is gone, which it now appears to be (tumors have responded very well to chemo treatment), is he just playing it safe deciding now that he will take that skin, or is he most likely using some of my imaging data to determine how close to my skin the tumors were to make this judgment?  I have contacted him of course, but I want to be sure I am informed and concur.  I would like to spar all skin possible, but safely only, of course.  If it helps, I am HER2 (-), ER (+), PR (+), BRAC 1 & 2 (-), have an MBR score of 6, and other notes state I have "adjacent lobular carcinoma in situ and ductal carcinoma in situ" - I believe this describes the satellites, as the main tumor is ILC, not in situ.  I am wondering if "adjacent", in this case, means adjacent to the main tumor or to my skin?  All four cores of the biopsy showed at least partial involvement by an infiltrating carcinoma which was somewhat discohesive and invading in a single file fashion.  The main tumor appeared to swirl around and entrap benign breast nodules.  No glandular formations were seen.  The tumor cells themselves demonstrated mild pleomorphism with enlarged nuclei demonstrating even chromatin.  Occasional tumor cells were slightly plasmacytoid.  No significant mitotic activity was appreciated.  Occasional foci of lobular carcinoma in situ as well as a single focus of ductal carcinoma in situ, intermediate nuclear grade were also present (these are the satellite tumors).  No angiolymphatic invasion was seen.  The ILC cells were found negative for E-cadherein (minimal blush of staining in rare invasive tumor cells).  The LCIS tumor cells were found negative for E-cadherein as well.  The DCIS tumor cells were found strongly positive for E-cadherein.  What confuses me here is that she didn't biopsy one of the satellite tumors because it was so far toward my sternum and she was confident it was a satellite of the main tumor.  So, although the biopsy has three types found, I guess we don't really know which type was in that satellite tumor - or is there a way to know?  I just want to find out what skin can safely be spared, as I would love to have immediate reconstruction and not have to mess with the expanders.  Thanks in advance for any insight and feedback!

SpecialK

Would it be possible to go into surgery with the intent of doing a direct-to-implant surgery if all current expectations are met, but alter the plan according to what is found during surgery?  They can order implants and expanders to be available in the OR with the full understanding of your wishes, then use whichever needs to be used based on what they find.  I am thinking your skin side margin is what your surgeon is worried about.  Have you had a plastic surgery consult yet?  I realize that this may be more difficult to wrap your head around because you may be expecting one thing and may wake up to find another - but this is the case in any surgery.  You also have to trust your surgeon - have you considered a consult with a breast-specific surgeon?  I did have a skin/nip sparing with expanders, my PS doesn't like direct-to-implant because he finds that there is more frequent capsular contracture.  For me it would have been a disaster because I did have skin necrosis (approx. 20% of skin sparing do) and after 3 more surgeries lost the left TE anyway.  All is well now, but I think it would have been harder for me to lose an implant, rather than a TE.  Wishing you the best!

mystikmommy

Thank you for your reply SpecialK!  Yes, that is currently the plan - immediate implants but expanders as contingency.  My GS is yet to contact my PS however, and once he hears of the GS's plan to remove much of my skin on my cancerous breast, that plan may change to the other way around, for the cancerous breast at least.  However, I would like the main PS plan to remain direct implants for both breasts - based on the main GS plan to be that the skin is spared unless otherwise seen when the GS gets in there, not the other way around.  But, as I said earlier, my GS has already determined he wants that skin gone and I want to know why.  I guess they can't determine clear margins on the spot - before they close me up?  If not, you are probably correct that the clear skin margins are his concern.  I just want to minimize the skin he takes but still be safe, so I'm curious as to how he has determined he wants to take it already without being in there.  I am considering seeing a surgeon that specialized in mastectomies/breast surgery.  I know this doctor does many of them, but you have a good point and that suggestion is my main take-away from your post, so thank you - very much!  I know I may wake up with something different than what I expected going in - I'm prepared for that, but I guess I feel the need to make sure it's all covered before it's completely in their hands .  Anyway, thanks, and I'm so glad to hear all is well for you at last!

MystikMommy

mystikmommy

So...to update anyone interested: I visited with three other GS's, none of which believed that removing my skin was necessary, so I changed GS's and all my skin was spared. My final path showed one margin with cells touching ink. I also went with the immediate expanders, not the immediate implants (related to radiation). I'll post all the details of my case (including all trials and tribulations) later, but just a few bullet points:

* If you do not have skin involvement, there is usually no need to remove the skin (adjuvant chemo helps with this if your tumor is large). If your GS wants to remove skin anyway, get a second opinion.

* If your GS says he/she will do a skin sparing mastectomy but only if you get radiation, get another opinion.

* Some now see the nipple as just more skin and so you may even be offered a skin sparing and nipple sparing mastectomy, depending on the distance the tumor is from the nipple (I could have gotten this but opted not to based on my personal research on the topic)

* If you want to take complimentary supplements, the docs have no information one way or the other, but they will speculate a bit, which just further confuses things. I bought mine and stared at them for weeks since I was told they might actually protect the cancer cells (but that of course they just don't know). Then, months later, when my neutrophils started to tank, I asked them again and they said to go for it, as nonchalantly as if I'd asked where the bathroom was. I took them from that point on and saw results within 24 hours (I ended up in there dehydrated two days later but my neutrophil count had doubled! Just needed more water.)

* Find out (from your MO) your actual percentage of your chances of getting a radiation recommendation from him/her, not just answers with no associated percentage. This is vital information to have when visiting with potential PS’s.

* If you choose to have radiation, know that the Canadian protocol is not an option once you've had surgery, but nobody will tell you this unless you ask about it

* If you go in for labs to see if you need a Neupogen shot before chemo, be sure you know your lab results before they come at you with the shot (they sometimes assume and come at you with it without even seeing the lab results yet)

Best Wishes!