Just diagnosed ILC

Fearlessfoot · April 2012

Hi, All,

I found out 20 days ago that I had early stage breast cancer. I am age 52, perimenopausal, am married, and have a nine-year old son. My mother died of pancreatic cancer 2 years ago and my younger sister had a lumpectomy for lobular and ductal atypical hyperplasia 7 years ago and opted to go for 5 years on tamoxifen. I have large, dense and lumpy breasts (34DD). So I have have mammos yearly since I was 40. The radiologist saw something in my annual mammogram that looked abnormal and a needle biopsy showed lobular invasive cancer T1A. My diagnosis I think can be categorized as:

Invasive Lobular Carcinoma (ILC), DX 2Apr2012, age 52, 5mm, Stage 1, Grade 1, ER+ 90%/PR+ 100% HER2-neg, left side sentinel and satellite nodes negative 0/6, post lumpectomy under microscope found two more ILC tumors in breast tissue removed: 4mm within margins and 2mm sliced through margin.

I am an American living in Europe. I am lucky enough that one of my best friends is a ten year breast cancer survivor and past president of the English Speaking Cancer Assoc in our town, who has been guiding me through the process.

So, everything moved fast and furiously and yet was looking so "good." I had a lumpectomy on 11April, where the breast surgeon said he got clean margins and the nodes (sentinental and 6 satellite nodes) looked cancer-free. However, while the lab results 5 days later confirmed the nodes were free, two additional ILC tumors in the lump tissue extracted, both too small to be detected by mammo, ultrasound, MRI, or breast surgeon's (BS) eye. And one tumor was only partially excised (on the margin).

So this changes everything. Before the protocol was going to be lumpectomy, radiation, hormone therapy. Now I jumped quickly to bilateral mastectomy. Over the last few days, I've delved into the world of BMX and am floundering a bit. I don't yet know the range of options offered by oncoplastic surgeons here, but it is surely more limited compared to U.S.

My friend here got a one-step implant under the pectoral muscle, nipple saving, and all has worked well for 10 years. However, I've read about the perforator operations autologous using skin, fat tissues, sometimes muscles harvested from parts of one's own body, where the resulting artificial breast has higher success rates long-term. Everyone here on the forums seems to talk mostly about Tissue Expanders and multiple operations and nipple reconstruction and tatooing. I realize each type of BMX operation has pluses and minuses. I am meeting with a plastic surgeon (who works with my BS) on Monday so will get more information about what is available and what I may be a candidate for based on my breast and body type, etc.

Any advice you can give me? Thank you in advance.

Also, another scary question... does the fact that the lumpectomy cut a small tumor in half, mean that that this disturbed piece of ILC could be streaming into my lymphatic system and blood stream now during the lumpectomy healing process and that when I go for the mastectomy, my nodes could be tainted?

Again, thanks for any insights you could provide.

Galsal · April 2012

Blessings to you for the reason that brought you here. What country are you in? How special that you've got a wonderful friend like that to help you through the maze.

suzieq60 · April 2012

Do you know if you are HER2+ve or -ve - your post says +ve but your signature says negative. If you are HER2+ve then your treatment could radically change.

Can't help you on the BMX issue - I've manged to avoid one so far.

camillegal · April 2012

Hi==I'm not familiar with all that u said, but there will be alot coming on that will be, I can say u are very lucky to have a friend so close to the situation u are in so that has to be a comfort to u, Good Luck.

Racy · April 2012

Is a BMX your choice now or is that what the surgeon recommended? If you aren't comfortable with that option, consider getting another opinion. Did you have a MRI to check if there are further tumours? I ask these questions because a BMX may not be necessary if you don't want it.

In regard to reconstruction, you should also take time to explore all your options.

I haven't had these surgeries so can't give you any advice based on first hand experience. But it is important that you are comfortable with the choices you make, therefore research before making a decision.

mary625 · April 2012

I'm glad that your ILC was found on mammograms while still small. As you read more here in the ILC forum, you will read over and over again that it is unusual for it to be picked up on mammas and thus can get quite large and extensive before being found.

I had a BMX in February. I made the decision for several reasons. 1. My ILC was 7-10 cm before I found it 8 months after a supposedly clear mammo. I also had extensive node disease. I didn't want that to happen again in the other breast. 2. Tumor size at the beginning was too large for lumpectomy. It shrunk a great deal during chemo, but I still felt it was the right decision in case it hadn't shrunk in a clean fashion. You are not in the same situation as I am. Relevant to your situation, I've read here that ILC is a bit more likely to come back in the other breast and more likely to be multi-focal, as yours has been found to be. It is also known as the "sneaky bastard" of cancers because it doesn't always show up on mammas and is hard to detect, at least here in the U.S.

Regarding reconstruction, here in the US it seems to be less likely that a woman will go directly to one step recon. More likely is that the woman will get a tissue expander to be swapped out with an implant at a later date or to receive reconstruction with some form of their own body tissue. Those who do go directly to recon usually receive their own body tissue at that time. If I understand correctly, in most cases the surgeon cannot leave anything to support the implant so the tissue expander must make a sling to support the implant before it is swapped out. You may have different choices in your country. Also affecting a woman's choice is whether she has to have radiation after surgery as it can create scar tissue that can cause complications with implants. I did not have recon for this very reason.

You may have access to different treatments in Europe, from what I can tell. I have begun to research standard treatments in Germany, and I am impressed. I don't agree with the assumption that some people have that the U.S. has the best d**n medical treatment in the world. We are slow to bring treatments to patients. Personally, I would not worry about having treatment in most countries in Europe.

Moderators · April 2012

Hi Fearless and welcome!

For some further information on Reconstruction, check out the main Breastcancer.org site and the Reconstruction section -- there's a wealth of info there including all types of reconstruction, what to expect and resources.

In addition, we suggest posting in the Reconstruction forum for help to make your decisions from other ladies here who've gone through or are going through what you are. Also, for the ins and outs of ILC, the main BCO site also has a great section chock full of info.

We hope this helps in yoru decision making! Best of luck to you! Keep checking in with us to let us know how you're doing.

--The Mods

Fearlessfoot · April 2012

Susieq58, oops, that was a typo. The DX was HER2 -negative. Thank you for pointing that out. I've edited it to be correct now.

Fearlessfoot · April 2012

Dear First Responders,

Thank you for your messages. I am in Switzerland which we have found has really good health care. It's more expensive than in the U.S. and is all private (not socialized like in UK or France), but the quality is excellent. It just may not be cutting-edge and somewhat limited in scope.

Anyway, I just had the meeting with my breast oncologist. He agreed that unfortunately, BMX was the only logical solution because: 1) multifocal ILC tumors, 2) the two found after lumpectomy were not visible on my mammogram, nor ultrasound, nor MRI, nor surgeon's eye therefore very difficult to detect any future recurrence, 3) ILC often is found later in other breast, 4) I have somewhat of a family history.

With respect to radiation and chemo, he felt these were not necessary nor advisable as long as the BMX proceeds promptly. He allayed my fears about the severed tumor sending out cancer cells; I'm not sure exactly the science but I think he said the wound healing was busy at work right now and so the cancer cell biology would NOT be trying to expand. (?)

With regard to BMX choices, he said microsurgery reconstruction using own body tissue is not feasible with ILC, as if there were recurrence, it would be difficult to catch within the tissues fat, etc. The implants are much easier to keep watch on for any signs of recurrence. And the experience with immediate and one-step implants are excellent here. He also said I looked like a good candidate for skin and nipple-sparing method due to the location of my tumors. Of course, everything would need to be tested on the operating table for clean margins especially the nipple I think. I am a bit disappointed to be limited to implants because of my ILC, but am also a bit relieved to be limited so that I can focus on optimizing that option. Granted, everything can change on the edge of a dime in this crazy cancer world, I must remind myself. But for now I feel more certain. I will go perhaps to the Reconstruction Forum now for more info. Thank you so much for being there!

momof3boys · April 2012

Hi Fearless- I think your BS is on the right track. But, he he a surgeon or an oncologist? Here in the US the oncologists order a test called an Oncotype test that helps determine your distant recurrence rate and if you should get chemo. Sometimes the test has surprising results. I don't see how a surgeon can make that determination until your tumor is out and analyzed.

I had a BMX with TE... For the very reasons your surgeon explained to you.

Fearlessfoot · April 2012

F.Y.I. I got a second opinion from another Swiss oncologist who agreed with the concept that reconstruction after BMX for ILC should be implants only and NOT involve autologous own body tissue flaps because of their concerns about detective any future recurrences. However, he said it was just a "general feeling" and that there were not any relevant studies to back up this practice. So much for evidence-based medicine, but wise, intuitive hunches are also valid, I suppose!

rakulynda · May 2012

9 years ago I had left mastectomy with immediate TRAM reconstruction. At that time there was no mention of not having the tissue reconstruction because recurrance would be be harder to detect but I'm assuming things have changed with advancing research. The recovery from the reconstruction was long and hard but on the up-side, only one surgery needed, got a tummy tuck, the reconstructed breast is living tissue gains and loses weight and always matches my real boob. I had absolutely no post-operative issues with the TRAM but have read that others sometimes do.

I might have been fortunate too that my 2cm lobular tumor presented as a definite lump near the surface of the skin and was readily seen on the mammo and ultrasound.Good luck with whatever you choose - it is such a hard decision to make and keep us updated! hugs to you

Galsal · May 2012

Very interesting. Not one surgeon here has suggested I can't have any flap surgery because of my ILC. Intriguing and begs questioning when I meet with them next.

JustLaura · May 2012

I too have ILC and it was multi-focal all in one breast. I opted for a BMX (for peace of mind) with DIEP flap reconstruction June 2011. It was never EVER indicated to me in any way that I should not have DIEP and should have implants (and I had a 2nd and 3rd opinion). I have heard too many horror stories about implants and did not want to be another one. I even traveled for my BMX and DIEP to a renowned breast center in the US in New Orleans. I wonder if the difference is between Swiss and US doctors? Perhaps screening is better in the US than Switzerland and it is not even a concern. Anyone else in the US been told not to have flap surgery because of ILC?

Just diagnosed ILC

Comments

Categories