Anyone had an oncoplastic lift and then a double mastectomy?

ALH49

Last week I had an oncoplastic breast lift -- meaning a lumpectomy on my left side combined with a breast reduction on both sides. Before surgery I had five months of AC+T chemo. My surgical results look great, but the pathology report from my surgery just came back and it's not great. Turns out the cancer was all ILC (somehow they didn't know this before) -- tumor was bigger than the MRIs had picked up (2.3 cm), with bits of LCIS and ALH (pre-cancerous material) still in there and a couple of very close margins. I want to go back now and have a BMX but I'm hearing that the oncoplastic closure will mean I'll lose my nipples and make things a bit of a mess.

Docs are also waffling on whether I should have radiation as well, even if I go with a BMX because my tumor had invaded my pectoralis muscle (not chest wall).

I know this is an unusual situation but it would be great if anyone having faced a similar situation can weigh in. And if you faced this situation and went to a great PS or hospital for the surgery, let me know.

nash

The part of my situation that is similar is that in 2007 I had a chest wall boost as part of my radiation b/c the PLCIS (pleomorphic LCIS) part of my PILC (pleomorphic ILC) was growing into my pec muscle. I had a lumpectomy at the time, so of course had radiation, plus the chest wall boost b/c of the muscle involvement. I had a local recurrence in 2015 in my lumpectomy scar despite the radiation (and chemo and 7 years of Tamoxifen).

Anyhow, my point is, the drs may end up recommending chest wall radiation for you. Sorry you're having to deal with all this!

ALH49

Thanks. I'm sorry you've gone through so much too. How did your flap surgery handle radiation? Were you happy with the flap and was recovery from the surgery tough? And did you have radiation twice -- in 2007 and 2015? I thought you could only do radiation on the breast once.

nash

Correct--typically you can only radiate once and I had the rads with the lumpectomy in 2007. I didn't have additional radiation after the mastectomy and lat flap reconstruction in 2015.

Recovery from the lat flap has been very difficult. The PS blames it on the mastectomy and prior radiation. I blame it on being a poor candidate for the surgery bc I have very tight back muscles from forty years of competitive figure skating. At any rate my situation is atypical and the vast majority of women do very well with reconstruction. And if I had to have more radiation I don't see any reason the flap wouldn't hold up well.

ALH49

Yeah, I think the lobular cancer is not well understood and I'm finding that very experienced, well-regarded doctors have been giving me bad advice. Now I'm getting advice to either rush into radiation or rush into mastectomy and my doctors keep changing their minds.

Have you heard that the aromatise inhibitors are better for ILC than tamoxifen but that you have to be post-menopausal to take them? I'm thinking of holding off for the time being on either the radiation or the mastectomy and having my ovaries removed so that I can start on the post-menopausal hormone blockers. Is that crazy?

nash

I wonder why the drs are waffling on if you need the chest wall radiation to the pec muscle. I can't see how it would be good practice to not radiate it.

Yes I've heard that AIs are better for ILC. I was seven years in to the ten year Tamoxifen plan when I recurred. I came across some articles that suggest Tamoxifen may even fuel ILC, but I think that was only in a petri dish setting and hadn't been proven in people. All I know is I recurred while on the stuff.

I tried to go on Zolodex to shut down my ovaries and then Aromosin, but couldn't handle the se's on top of the post-op issues. I'm supposed to try again next month, but haven't decided what I'm going to do. Unless you're really sold on having your ovaries out, you may want to consider shutting them down chemically first to see how you do.

So you're thinking of trying the AI out in a neo-adjuvant manner then? Do you want to see if it will shrink the tumor, then decide on surgery?

BarredOwl

Hi ALH49:

I am very sorry to hear this.

You may be interested in discussing the results of the BIG 1-98 trial with a medical oncologist. You can obtain a complete copy by clicking on the full-text option, scrolling down and selecting the PatientACCESS option at the bottom of the page. The quick price shown is 0.00 USD, requires registration with the Copyright Clearance Center, and then a pdf copy would be provided by email. I have obtained a number of articles at no cost in this manner.

BIG 1-98 trial: http://jco.ascopubs.org/content/early/2015/07/24/J...

I may not understand, but is there a remaining concern of residual invasive disease due to "a couple of very close margins" and that the "tumor had invaded [your] pectoralis muscle (not chest wall)"?

You seem to have lost confidence in your team, so I would recommend that you proceed directly to seeking a comprehensive second opinion regarding the surgical pathology findings and their implications, available surgical and treatment options, recommended next steps, and the preferred timing and sequence of these.

An NCI-designated cancer center and/or an NCCN member may be a good choice, if feasible:

http://www.cancer.gov/research/nci-role/cancer-cen...

http://www.nccn.org/members/network.aspx

You may wish to join the ILC forum as well.

Best,

BarredOwl

(Stage IA, IDC, bilateral mastectomy without reconstruction)

ALH49

Thanks BarredOwl -- I'll try and get this article and read it this weekend. Yes, I have lost confidence in my team. I feel like I need a doc -- MO/BS/RO -- who really understands the nature of lobular cancer and can help me make informed decisions based on that. Not feeling like I have anyone on my team who has factored that into the planning at all.

Nash -- I'm not sure if I'm seeing using the A1 as a neoadjuvant therapy (hard to think of anything as neo-advuvant when you've already had five months of chemo and lumpectomy with breast lift) but perhaps I'm seeing it as a way to reduce the systemic threat for a while and let my body and particularly my breasts heal. All along the docs have said that the best "tool" for preventing a systemic threat of recurrence are the hormone blockers, since they are "uber-effective" for lobular and for all highly positive estrogen tumors. I'm not sure why they've sent me down the road on all these other measures when they've said from the beginning -- and continue to say -- that the hormone therapy is the best bet. Ultimately I know I'll do a BMX but frankly, with bruises still all over from last week's procedure and steri-strips still hanging from my breasts, I'd love to not jump back into surgery right away.

As for the radiation, I'm getting mixed signals from the docs. Some say its crazy to do radiation when you know you are going to go back and have a BMX and some say if you have a BMX you might not need radiation at all. Before surgery they thought the cancer was up against my chest wall and that made radiation a necessity, but that was another surprise from the surgery - turns out it wasn't so close after all but it did go deeper toward my breastbone and collarbone than was picked up on the MRIs. (Which adds to my leaning now for a BMX). I'm learning now that's the fun of lobular -- the images are very deceiving.

nash

Yeah, ILC is hard to image properly. Did your neoadjuvant chemo shrink the tumor at all? I know you said it ended up being larger than expected at surgery, but did it shrink as far as what showed up in the imaging?

RE: the radiation. I wracked my brain back to my 2007 surgical decision making process, and realized that there had been no discussion of needing radiation if I had opted for the BMX. So I guess I had the chest wall boost for the pec muscle invasion just b/c they happened to be radiating for the lumpectomy anyhow, not b/c it was absolutely clinically necessary.

Radiation is the gift that keeps on giving, so if you can avoid it, avoid it. When I had my restaging scans last year for the recurrence, there was radiation damage in my lung that hadn't been there a couple years after radiation when I'd had CT for possible mets. It took years to develop.

You're prudent not to want to rush into either radiation or more surgery, but rather take your time to make a good decision based on info you trust. I think the idea of starting on an AI to protect yourself for awhile while you recover from chemo and surgery is actually an intriguing idea. The drs are so quick to push us into their timeline and protocol.

ALH49

Hard to say if it shrank at all. The original MRI following biopsy showed a mass of approximately 2.1 cm but some additional cancerous material that totaled about 4 cm, so some of that may have been ductal carcinoma and may have been suitably attacked by the chemo. At 2.3 cm, the tumor turned out to be larger than they thought at first MRI and way larger than the subsequent MRIs led them to believe. At my last MRI and meeting prior to surgery, the BS said the tumor was gone and that all that likely remained were some dead cancer cells. Boy was he wrong.

The docs are suggesting that I probably did start out with both IDC and ILC (which may have contributed to some of the misinterpretation, though certainly doesn't excuse it).

On some of these ILC threads, it looks like some women were diagnosed with ILC from the outset and skipped chemo -- even with stage 2 cancers -- and treatment was really surgery and A1 inhibiters.

The big question is: if ILC isn't really detected in imaging, how do you reliably find a recurrence at an early stage?

nash

My recurrence was in the scar tissue from the lumpectomy. It showed up on MRI. I do worry about mets not showing up on CT and bone scan.

ALH49

So sorry to hear about the radiation damage on your lung. It seems that doctors used to use extensive surgery for breast cancer and now have gone 180 degrees in the other direction and push extensive chemicals and radiation instead. I guess every case is different but it seems that both ways leave open the chance for a recurrence. Good that your recurrence was caught early and lucky that it showed up on an MRI. I get the feeling that a lot of lobulars are completely overlooked by MRIs. I've heard that there are blood tests that are either newly out or still in trial that have been successful in diagnosing ILC early. Something I need to explore...

nash

I will have to look into the blood tests for ILC--I hadn't heard of that, so thanks for mentioning it.

The only reason the recurrence was picked up was b/c I was insisting on annual MRIs due to the extensive PLCIS left over in my breast. My onc at the time said that after six years of stable MRIs, I didn't need them anymore. I disagreed, so we compromised on biannual MRIs. So we skipped 2014, and in 2015, guess what.....

ALH49

Another frequent contributor to this website mentioned to me that the University of Pittsburgh is doing a study solely on lobular cancers -- trying to determine if certain hormone blockers are better than others for ILC specifically. Unfortunately the study is ongoing so no news yet. Hopefully we'll both keep this under control long enough to benefit from the research. We both were diagnosed pre-menopausally -- me at age 49, six long months ago...

nash

I will keep an eye on the studies. I can't handle any new HT right now as I'm very sensitive to the AI side effects--maybe down the road. I was 38 at initial diagnosis, now 47, almost 48. Just kind of getting tired....

ALH49

If you don't mind me asking, what are the worst side effects? I'm going to be in that boat pretty soon. Are the side-effects worse on A1s than on tamoxifen or are they different?

nash

I didn't have any trouble with Tamoxifen, but with Zolodex/Aromosin, I was dizzy and borderline losing my mind. As in I just couldn't function normally--everything made me cry. Also a lot of joint pain and dry eyes and hot flashes from hell.

In fairness, I didn't give it much time, b/c I couldn't handle the se's on top of the post-op effect of feeling like I was being crushed to death. I'm still struggling with PT and not feeling anywhere near normal from the mx/lat flap, so I'm not ready to try the AI again. I don't even know if it was the ovaries shutting down from the Zolodex or the Aromosin that was causing the most problems, or the combo of both.

That all being said, I have a friend who has completely sailed through Arimidex with nary a hint of problems.