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Topic: Ilc questioning chemo choice of ACT verses CT

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jun 1, 2019 08:54AM - edited Jun 1, 2019 09:25AM by Mymamma

Mymamma wrote:

hi this is my first post and it is my mom who has ILC. She was treated neoadjuvant with letrizole and her mri showed significant shrinkage. Unfortunately she had a partial mastectomy and margins were not clear and 12 out of 16 nodes were positive. Actually 9 since 2 were micro and one node only had one cell-so I favor going with 9. In any case, the tumor board met and advised chemo prior to full mastectomy. Prior to surgery her oncologist favored the taxotere regimen siting that the anthracyline would only offer about a 3% benefited along with a 1% risk of cardiomyopathy and of course a chance of myelodysplasia etc. now he is strongly recommending dose dense AC T. I asked him what changed and he is saying that the number of nodes changed his mind but yet he still is siting the same small numbers of possible impact. From everything I have read, it does not seem that AC has been shown to offer benefit and in some studies outcomes are worse. She just had her port placed yesterday and her first chemo is scheduled for Friday. I should add that we knew preoperatively of a macro node that biopsied positive and several suspicious nodes on mri. Her onc is saying that the number of nodes changed his mind but I am concerned r the side effect verses benefit. I should add that mom is 65 and relatively healthy prior to all this. Any advice?He does not seem to be flexible in his thought process and my mom is not wanting to go for second opinion but is pondering the two choices.

Ilc 6cm. 9/16 nodes surgery without clear margins. Full alnd on right
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Jun 1, 2019 02:43PM Moderators wrote:

Mymamma, welcome to Breastcancer.org! We're sorry for you mom's diagnosis and all you are going through, but glad you found us! We're sure you'll get responses and support from other members here soon (although sometimes it is slow during the weekend) but in the mean time we wanted to recommend you the ILC section from our main site, where you'll learn more on Invasive Lobular Carcinoma (ILC), local and systemic treatments for this type of cancer, and more. Also, in the following forum For Caregivers, Family, Friends and Supporters, you will find other family members coping with a loved one's diagnosis.

Hope this helps. Please, let us know how you and your mom are doing!

Best wishes,

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Jun 2, 2019 04:23PM mb18 wrote:

Hi Mymamma,

I'm so sorry about your mother. My diagnosis was not similar to hers. I had ILC/IDC with no node involvement but was presented with the choice of chemo (TCx4) or no chemo. I asked percentage rate of recurrence without chemo vs with TC regimen. It dropped from double digits to single digit. I chose chemo. My decision was based upon my own comfort level of having no regrets, if I were to have a recurrence. Why don't you re-post under Chemotherapy - Before, During and After. I've found in reading the various posts, that whereas the diagnosis and/or treatment may not be the same, the process of making these tough decisions is very similar for all of us. Wishing the best for your mother.


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Jun 2, 2019 05:03PM - edited Jun 2, 2019 05:03PM by nash

No one, including the oncologists, can tell you a definitive course of action. I'm sorry. I went through this bc crap with my mom, and it was much harder than my own stuff. Hugs to you both

Just make a decision that feels right in your gut. That's all I can advise. I've been through both AC and T and they both suck side effect wise. It's impossible to know which has been more effective


Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Radiation Therapy External: Brain Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Ibrance (palbociclib)
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Jun 2, 2019 06:57PM - edited Jun 2, 2019 07:08PM by Mymamma

Hi Nash, I wish my gut was more comfortable with any decision but it seems as though all of the advice of onc and surgeon that we have followed has been wrong. Especially 6 months of letrizole and now I just read her path report again and only two clips are there.... she had three. I looked at the pre localizer placement and the radiologist bracketed around only two identified clips when there should have been three. It looks like that would leave her most aggressive tumor still (grade 3 and PR negative) in her breast right now.... uggghh. I will call her surgeon tomorrow to point this out but I am sure she will say the same thing, chemo with ACT and then mastectomy. Intuitively it seems that we should do the one that guarantees some benefit (surgery) first. So many questions and yet....Thanks so much for your advice...I do believe that you are right and nobody knows for sure. Seems like a crap shoot and take your best guess and be as comfortable as you can with it. Hugs and love to you

Ilc 6cm. 9/16 nodes surgery without clear margins. Full alnd on right
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Jun 2, 2019 06:59PM Mymamma wrote:

thanks will do

Ilc 6cm. 9/16 nodes surgery without clear margins. Full alnd on right

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