New Diagnosis. Chemo before surgery?
My Mom was just diagnosed with ILC grade 1, stage 3a, HER2+. It's been a whirlwind of tests and appointments and I know she is so scared. I'm just looking for someone who may have had a similar diagnosis that I could show her...she really needs some positivity right now and I'm at a loss on how to help her. She is fighting my suggestion to get a second opinion but, pending the MRI and some additional tests, she will start chemo before having surgery? Is that right? The oncologist said that the HER2 therapy would shrink the tumor (it's 5+cm) before surgery and maybe negate the need for surgery at all? I hope there is someone out there who has a similar story. I would love to set her mind at ease, if only for a moment.
Comments
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Hi!
I was diagnosed with Stage IIIA IDC, but it was Grade 3. My lump was 5 cm +, and it did disappear due to five months of neoadjuvant chemo (chemo before surgery). Alas, just because the chemo cleaned out the active cancer from my breast and lymph node doesn't mean I got to avoid surgery. The surgeon ended up taking out a golf ball sized amount of tissue surrounding my tumor marker. I also ended up getting all my Levels 1 and 2 lymph nodes removed (long story). I also had radiation.
I hope someone with ILC can chime in to say how neoadjuvant chemo worked for them. I am glad that I got neoadjuvant chemo because it gave me access to Perjeta, a very powerful new drug for HER2+ cancer. (Some do get Perjeta adjuvantly, but it's not as common.) Best wishes!
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I had Her2+ IDC, but can assure you that neoadjuvent (chemo prior to surgery) is an excellent plan in your mom's situation, due to the advent of targeted therapies like Herceptin and Perjeta which are making a huge difference for us Her2+ patients. Perjeta is only currently FDA approved for neoadjuvent use, that is what I assume to be driving the recommendation for chemo prior to surgery, along with the 5cm tumor size. The benefit of doing chemo prior to surgery is that you can see the effect the drugs are having. I don't believe that doing this would negate the need for surgery - you certainly want to remove any remaining cancer, or the area where it was - but it may negate the need for a mastectomy and make lumpectomy possible. Here is a link to the TCHP threads - wishing you and your mom the best!
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I also had chemo before surgery. We could feel the tumors shrink with each treatment. I had IDC, opted for bmx. I had nodes removed. BS got clean margins. Do rads too. It's been 3 years. I'm Ned.
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My neoadjuctvant therapy for ILC began 6 months before my BMX was only successful at bringing down my high ki-67 rate of 44% to under 3%. My tumors didn't shrink and I ended up with positive lymph nodes so I'm returning to surgery next week, 4 weeks after my BMX.
I may be the exception with ILC, because it had become aggressive before diagnosis. Just make sure your Mom has frequent checks while on the therapy to make sure the tumors are actually shrinking. And ILC and IDC are like comparing apples and oranges when it comes to treatment. If you have a Dr. Treating it like IDC, you need a second opinion, and I agree that this cancer is so complex that a second opinion is a good idea.I should have been in surgery 3 months earlier and on stronger chemo, but I changed Dr's after my surgeon lied to me about tumor shrinkage, and finding out she was married to the CEO of my insurance Co. So cost containment was very important to her. My new surgeons got me in as quickly as they could.
So make sure your Mom has someone who understands that ILC needs different treatment than IDC, and does appropriate assessment and monthly checks while she's on it would be my advice.
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It's very hard to find an onc who treats ILC differently than IDC. There just isn't enough data to support it.
I also had the pre-surgical chemo. The tumor area did shrink significantly. The palpable lymph node also shrank to where it could not be felt. But, as you'll see from my signature, I ended up with quite a few lymph nodes with cancer even after chemo. I've read somewhere that it's harder for chemo to get into the lymph system. Don't know the truth of that or not. -
Mary625,
You're right in that too few MO's realize that IDC and ILC require different treatments. 2 days ago, when reviewing my post-operative pathology, my surgeon told me I was one of the 20% that don't respond that well to hormone therapy. It brought my Ki67 down, but didn't really shrink the tumors. He's removing all my lymph nodes next week, then chemo.
And I'm really wondering what type of chemo. I'd like to try Faslodex, but don't know if I qualify.
AdrianneNix's mom sounds like she has a large tumor and also Her+ so she'll need even more specialized treatment. JohnSmith posted a link to a study that talked about how ILC can become less responsive even to AI's when it becomes aggressive like mine did. I hope she finds a good team who stays on top of the tumor status.
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I hope you both find good teams and great results. The giving of AI's as the first treatment was not in practice when I was diagnosed. I guess it's helpful to know how much you are responding to it. It's certainly more tolerable than chemo.
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There is currently some work being done to study neoadjuvant hormonal therapy, but it is for post-menopausal women only.
I had neoadjuvant chemo; six rounds of TAC (a protocol which doesn't look like, over the last few years and looking at the info in more recent member sig lines, is being given very often any more). On MRI prior to starting chemo, the ILC tumor measured 10.5 cm (which I actually doubt, but that's another topic). I had a CT scan halfway through and the tumor had shrunk by about half. At surgery, it was down to about 2.5 cm. All lymph nodes were positive, even after chemo.
Right now, there is no different treatment for ILC. That's in the future.
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Mmj,
I do think changes are being made based on research info, like using some form of endocrine therapy prior to surgery. Many research facilities are testing 6 months of Femara before surgery, as that's a widespread clinical study. It's based on the idea that more often than not, ILC is discovered when it's larger than ductal. Surgeons want to see if they can shrink it for better surgical results no matter whether a lumpectomy or mastectomy is planned. The tumor(s) are checked every 1 - 1.5 months to ensure shrinkage, or surgery needs to be scheduled. There's another clinical study that just came out a month ago. It adds either Faslodex or Ibrance to an AI for better results if the cancer's metastasized. I wish I'd pushed harder to get full body scans so I could have received stronger chemo earlier. I felt undertreated, and in review, was. My tumors didn't shrink. But once surgery was scheduled 2 months out, they quit imaging.
So some of these chemo drugs are being used, or in clincal trial so there is some individualized ILC treatment. But you've heard my diatribe about going to a larger medical center or research hospital and not small town Dr's for treating this cancer
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Adrianne,
My diagnosis was very similar. My oncologist wanted surgery first so she'd have lymph node results before deciding on a chemo regimen. My breast surgeon wanted chemo first because the tumor was too large & invasive for surgery. The compromise: sentinel node biopsy followed by chemo followed by BMX (followed by radiation, tamoxifen and aromasin).
I didn't have a complete response to the chemo but it did dissolve enough of the tumor to get clear margins; it was exactly the "swiss cheese" effect that we'd hoped for & expected.
Not to be insensitive, but for me, it was actually nice losing my hair before surgery. I wondered how I'd wash & blow dry my formerly longish, thick & frizzy hair post-surgery, and it was a relief not to have to deal with it. Hey, we look for silver lining wherever we can find them, right?!

Best wishes for your mother.
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In my "Living with Breast Cancer Support Group", many people have had neoadjuvent chemotherapy prior to surgery due to large tumor size, and it has worked well for them.
Good luck to everyone here.
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My surgeon told me I fell in the 20% that had ho hum results to Femara. Most people's are better. Or perhaps I was quite a bit larger and came down to 3 cm. I didn't belong on the 6 month watch and wait as mine had become very aggressive. I switched to our local med school my 4th month, so they got me in as quickly as they could.
AdrianneNix, it's a given your Mom is post-menopausal and should be on AI's. She needs treatment for the + Her 2, but I don't know much about it. Multiple medical opinions are still a good idea given the size and stage of her tumor.
GeorgiaRai, I must admit that a new head of thick hair with body would be a huge reward. Mine's so straight and thin I hate to see what more Anesthesia will do to it. Anyone with expanders would have a hard time washing their hair for awhile. I'm not sure what Chemo I'll be getting, but new hair would be great.
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Yes, Leslie, I referred to current studies for neoadjuvant hormone therapy in my post, and noted that so far those studies are for post-meno women. Well past time, probably in all our opinions, that they can determine if different treatments forI ILC are warranted. We are, as I wrote in the thread I started, the Odd Ones Out.
GeorgiaRai, my hair is nicer now than it was before (once the corkscrew chemo curls finally grew out). I wish my eyebrows were as thick as they were before, but they aren't completely gone and my eyelashes (I was fortunate to have long, thick ones before) are longer and thicker now.
Unfortunately, my waist is also much thicker. :-(
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Adrianne, I too had neo and at MRI before surgery no cancer was found. Well - good thing I had both removed because there was still 4x2.5x1cm on the left side and strays in all quads. I had FEC and Taxol - YES! she should get the neo chemo and being HER-2+ should give better pre-surgery shrinkage but........... being a stage III with ILC at diagnosis means mastectomy in my book.
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