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Topic: ILC Treatment Options

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

Posted on: Sep 13, 2019 11:37PM

Live_love_laugh wrote:

Hi Ladies new to the group and have so many questions, you all seem to be so knowledgable..I have recently been diagnosed with Stage 1A ILC Multifocal..waiting on oncotype results to decide chemo, Oncologist says I may only need hormone therapy, but no rads Just a few questions.

Chemo Question: my understanding is chemo kills current dividing active cells..how does chemo them help recurrence in the future?

Can lifestyle like lowering harmful foods, lowering BMI/Overall body fat and exercise decrease recurrence rate alot, can this route not be taken instead of all these treatment meds that have all the side effects.?

Lastly when tamoxifan is done 5-10 yrs down the road, are you opening yourself up to recurrence again?

Thank you for your advice and input in advance

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Sep 14, 2019 02:10AM trinigirl50 wrote:

Chemo works on the currently active cells that may have already entered your bloodstream or lymphatic system and kills them. This stops them from setting up shop in your bones or organs and growing into tumours at a later stage. This cuts down on the chance of recurrence in the future.

Yes it has been documented that exercise can help drop reoccurrence rates by as much as 20% in some studies. It is not clear whether lowering your body fat prevents reoccurrence some studies say yes, some say no. However the idea behind it, is that fat makes oestrogen and if you are ER+ then the less oestrogen your body makes, the better your chances are for no reoccurrence. The tamoxifen is used to lower or eliminate oestrogen. Tamoxifen has been absolutely proven to lower reoccurrence rates by up to 30%.

There is now an online calculator that can predict if continued use of Tamox or an AI drug after 5 years completed will be beneficial or not.

As you are so early stage, I would guess that your chances of reoccurrence are very small. ILC is know to be slow lazy cancer when caught early, not aggressive. No one is safe from recurrence but Stage 1A ILC has an excellent prognosis.

Decisions about forgoing medication and changing lifestyle instead of using conventional therapy are entirely personal. I would discuss this clearly with your Drs. But changing lifestyle for healthier eating and exercise is always going to be beneficial, whether it reduces chances of reoccurrence or not.

Good luck.


trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Sep 14, 2019 02:58AM Meow13 wrote:

My lifestyle was very good, eating and daily exercise BMI was 21 at diagnosis so were many others


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Sep 14, 2019 03:22AM OnTarget wrote:

I am stage 1a, but I had ITC's found in 1 lymph node, so in my case I felt that my cancer cells were clearly out and about looking for new places to set up shop. The standard recommendation for my situation is to not do chemo, but in working with my MO it was determined that chemo could have some benefit and I chose to take it to hopefully kill those wandering cells. ILC is often lower grade, but mine is grade 2 with pleomorphic features, so hopefully the chemo will work on the wanderers.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 1, 2019 09:51PM arizonaboundgal wrote:

Hey Trinigirl. I was also diagnosed with ILC this summer and am trying to decide whether to take the AL drug prescribed. You mentioned an online calculator...would you have a link for this? Thanks in advance!

Enjoy every sandwich--Warren Zevon
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Nov 13, 2019 05:09PM - edited Nov 13, 2019 05:10PM by MikaMika

This Post was deleted by MikaMika.
Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Nov 13, 2019 05:12PM MikaMika wrote:

Hello. OnTarget, may I ask more about your treatment?

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Nov 15, 2019 02:26AM wallycat wrote:

Mika, you sent me a PM...I don't know that there's any one way to think we can beat this ugly cancer. Some gals really make a 180 change and others keep doing what they had been, since they were healthy and doing things "right" all along. Cancer is a crap shoot. Eat well, eliminate as much stress as is possible, have friends and family around that are loving....and live life till you can't.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Nov 15, 2019 08:41AM MikaMika wrote:

Thank you so much for your response!

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Nov 16, 2019 08:24AM Meow13 wrote:

I agree do the best you can to live healthy and enjoy.

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Dec 8, 2019 07:08AM trinigirl50 wrote:

arizonaboundgal sorry for late reply. the calculator is for those who've already completed five years of AI, on whether to continue for a further 2-5 years.

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Dec 28, 2019 08:18AM LillyWasHere wrote:

Hi Ladies, I was diagnosed with ILC in August 2019. I am told I'm stage 1B since the tumor was small but has spread to 2 lymph nodes. I feel another lymph node on my collarbone that is swollen but not hard and the doctor doesn't think it is cancer. Also the left arm that was diagnosed with C is feeling numb. What are the signs that ILC has spread since it doesn't create lumps? Do you have any experience with numbness of the arm after the surgery? It is getting worst. X-ray didn't show much.

Dx 7/31/2019, LCIS/ILC, Both breasts, <1cm, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 10/22/2019 Femara (letrozole)
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Dec 29, 2019 01:32PM jessie123 wrote:

Lillywashere

I didn't have an MX or Axillary node removal so can't comment on arm pain. However, the arm is not one of the normal places ILC metastasizes to. I think that you will get many answers to your question on the Surgery forum or maybe the "pain after surgery" forum. Good luck -- I know this is all so scary.


Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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Dec 29, 2019 06:05PM LaCombattante wrote:

Hi Lilly,

arm numbness could be due to nerve damage after surgery, my surgery was in April and I still have some numbness in / near the armpit and in the upper arm.

If you are concerned about a lymph node, I would insist on an ultrasound. I would also ask for a referral to a physiotherapist with experience in lymphedema to rule it out. It is unlikely with five nodes, but better safe than sorry.

Good luck and keep us posted!

Surgery 6/20/2011 Mastectomy: Left Hormonal Therapy 8/25/2011 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/28/2019, ILC, Left, Grade 2, 6/8 nodes, ER+/PR+, HER2- Surgery 4/3/2019 Lymph node removal: Underarm/Axillary Chemotherapy 4/29/2019 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Dec 30, 2019 12:48AM - edited Dec 30, 2019 12:51AM by JRNJ

Lily I had arm pain before surgery. Was freaked because ilc can spread to arm bone. Bone scan came up clean and it's better after surgery. I think cancer was pressing on nerves. Could be something like your implant pressing on a nerve. Or symptom of lymphedema. I was freaked with 2 positive nodes and I will be getting radiation but they may not have recommended it without the Lymphovascular Invasion. I'm doing cmf chemo now after 3 opinions. My node invasion didn’t show up on any scans.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 9/23/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 CMF Radiation Therapy 3/29/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 30, 2019 02:15PM LillyWasHere wrote:

Thank you so much Ladies. I have not regret on my decision for double mastectomy but I'm regretting the decision to have breast reconstruction. I don't have lymphedema the nurse told me, the arm is not swollen and I was OK after surgery. It is lately that feels strange and I can't have certain scans because of the metal part on the spacers. Even thought ILC is very sneaky and doesn't create lumps to be shown from scans. My node invasion did not show on the scans either. This is what makes me nervous.

JRNJ, may I ask you why did you doctor decided Chemo and radiation in your case? I was told to only use Letrozole since radiation and chemo won't be effective.

Thank you again and the idea that the spacer maybe pressing in a nerve. Makes sense to me :)


Dx 7/31/2019, LCIS/ILC, Both breasts, <1cm, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 10/22/2019 Femara (letrozole)
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Dec 30, 2019 03:03PM - edited Dec 30, 2019 03:11PM by JRNJ

Lily, I went into this wanting to be as aggressive as possible. Originally My BS said no radiation or chemo if less than 4 nodes positive and mastectomy. That made me very uncomfortable, but I've since learned she oversimplified it and caused me much anxiety. NCCN guidelines say with 1 to 3 positive nodes (macro over 2mm) patient should consider either additional node dissection or radiation. My BS never discussed this with me and was very defensive when I brought it up. I was ready for a fight, but I believe the RO recommended radiation due to lymphovascular invasion noted on final surgical pathology report, in addition to the 2 positive nodes and I didn't have to push for it. But chemo was more of a gray area with Oncotype 15 but some aggressive features and I am pre-menopausal at 54. First MO said he didn't know what to do so sent me to top doc for second opinion. She said no chemo. I was still uncomfortable with that, so went to Sloan, and she said yes to chemo. Crazy how 2 doctors could have polar opposite opinions. But the trials for node positive women are still ongoing and not as much data as for node negative, and I didn't want to take that chance. But she recommended CMF because it is not as toxic as TC. I've never heard that radiation is not effective on ILC. Chemo is not "as" effective on ILC as IDC, but can still be effective. I look at peoples posts like OnTarget and say, maybe I should be doing TC if it is more effective because I am still suffering. The decisions are endless. At some point we have to make a decision and go with it. I still need to get implants, my TEs were removed due to infection. I hope I don't regret it. At least with silicone implants you are eligible for periodic MRIs. Is that you playing the sax? Adorable picture.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 9/23/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 CMF Radiation Therapy 3/29/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 30, 2019 03:20PM OnTarget wrote:

I had BMX for ILC in both sides, and sentinel nodes taken on birth sides. I had numbness in the backs of my arms for months after surgery. I'm 7 months out and just recently realized that the numbness is gone.

Kind of funny, but when the PT touches my armpit it is ticklish again, and it wasn't for the months after surgery.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 1, 2020 09:11AM mac5 wrote:

JRNJ my current Staging is at Stage IIIB. The first MO said with Oncotype 8 the chance of chemo working was less than 1%. She recommended a year of Endocrine Therapy then Surgery. But my tumor was visibly growing and the chest wall was involved so I wanted more aggressive treatment.

Second MO agreed to CMF to see if we could get a response. After 3 cycles of 21 days, they did another Breast MRI. The 7.3 cm tumor is now 6 cm. And it has stopped growing. The MO says the tumor is palpably softer and she and the SO want to try a couple more cycles to see if it continues.

The Genetic Testing of 89 genes does not reveal any mutations so my cancer doesn’t seem to be hereditary. It just happened.

All of this is just to say you know what is best for you. All the Studies in the world can’t specifically predict how your body will react. I think we should be treated as aggressively as we can tolerate. Stay strong and feel better I hope. I’m on your side

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to lungs, Grade 1, 1/1 nodes, ER+/PR+, HER2-
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Jan 1, 2020 02:21PM JRNJ wrote:

Thanks Mac5! So glad it’s working!! I know you said on the other post they didn’t think it was. Remember cmf is more treatments than TC it’s supposed to be more slow and steady so hang in there! I think I suggested on the other post you might want to consider every other week. I’m doing fine on this schedule and feel good the second week. But I think you have more health issues than me.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 9/23/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 CMF Radiation Therapy 3/29/2020 Whole-breast: Breast, Lymph nodes, Chest wall

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