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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: ILC stage 3 and 10 year survival

Topic: ILC stage 3 and 10 year survival

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

Posted on: Apr 13, 2016 12:29PM

Gracejoy wrote:

I am wondering anyone with ILC stage 3 diagnosis and made it to 10 year without any recurrence.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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May 16, 2018 05:58AM Texas357 wrote:

I will be 10 years this coming fall. I go for my annual oncology visit next week to get this year's test results but I feel great and I'm not anticipating any issues.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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May 17, 2018 11:20AM Gracejoy wrote:

Congratulations. This is so encouraging.Many more years in good health

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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May 17, 2018 12:47PM luv_gardening wrote:

I'm coming up to my 9th anniversary and I'm well. I'm rarely on this page now as I'm in Facebook groups. One for ILC and another for all BC but very informative. I'll probably visit again when I get to my 10th anniversary to encourage others.

Dx 7/2/2009, ILC, 4cm, Stage IIIA, Grade 2, 9/24 nodes, ER+/PR+, HER2-
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May 21, 2018 09:38AM ck55 wrote:

Gracejoy- I am at 11 1/2 years and feeling great!

Cyndi👍


DX 11/9/06 9cm ILC Stage 3A Mastectomy ER+ PR+ HR- 2/16 Nodes DD AC/Taxol Radiation
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May 24, 2018 05:28AM - edited May 24, 2018 05:29AM by Gracejoy

Congratulations luv gardening and CK55. Wishing you many more years in great health

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Jun 8, 2018 09:23AM - edited Jun 8, 2018 10:40AM by Chucksmommy

In April of 2017 I was diagnosed with ILC in my right breast...I was told then that I had likely had it for at least 2-3 years...maybe longer. I realize it is a tricky cancer to detect but I have had my mammograms done faithfully every single year like clockwork for almost 20 years! I had several ultrasounds and biopsies and was originally told not to worry because due to my age ( 61 at that point ) that that type of cancer is slow growing and was only the size of a pencil eraser...and maybe a stage 1 if that. An MRI revealed something much different...after being told that even though I had cancer in only one breast that this sneaky cancer would likely develop in my healthy breast I elected to have a bilateral mastectomy and that was performed in July of 2017. The pathology reports don't lie...and not only did I have many cancers throughout my right breast but 27 out of 27 lymph nodes were full of cancer and were removed. My report says Stage 3C...I had 16 rounds of chemo...4 A/C and 12 taxol...I had tremendous bone pain and instead of giving me some type of pain medication ( other than tylenol ) my onc decided to cut my dosage by 25%. I was so upset about that I decided not to tell him of my dizziness or headaches...or neuropathy fearing that he would cut my dosage again...or even worse stop my treatment. When I expressed my fears about not getting the full dose he said they have to make adjustments all the time. Following chemo I had 5 weeks of radiation. Even though I never ever missed a treatment I am told there are no guarantees that my cancer won't return...or that it hasn't already metastasized and will show up eventually...I did have a CT scan a few weeks ago that showed a spot on my liver...I was told not to worry and they will do another scan in 6 months...who tells a cancer patient not to worry?? I could be the poster child for worrying!My cancer was also estrogen positive...so I am taking Letrozol. I find myself to be very depressed and anxious...I am preoccupied and can hardly think of anything but cancer...and when mine will show up again. We are expecting our first grandchild in about 5-6 weeks and I wonder if I will live to see her grow up. I can't really talk to anyone about my fears...they all say but you look great so you are doing great! Well you can't see cancer...I am just a total wreck...

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Jun 8, 2018 07:58PM MRock wrote:

Hi Chucksmommy,

Our diagnoses are identical - I'm 3C ILC as well. I just wanted to say two things to you -

First of all, have you tried therapy? You need to have someone to speak to, and a therapist specialized in cancer patients can be very helpful. And there are often organizations that can help you with costs if that's a hurdle.

Then, my method of coping has been to focus more on each moment. I notice how good my coffee smells in the morning, and I try to stay with that pleasure for a few moments. I focus on what lovely flowers I have on my balcony, and keep my mind only on these, and their colors, for as long as possible.

This is now called mindfulness, but it's a very old practice/habit that we can all develop, and if you reflect on people over your lifetime who seemed content, you may realize they likely had this habit. An aunt and uncle of mine were always chatting about all the little joys of their apparently limited life - the dinner out once a week (at a nearby cafeteria! nothing special), their flowers, the wonderful pears their neighbor had brought by, and so on.

In short, the more I stop and ENJOY some little, apparently insignificant thing, the lighter my burdens seem. And it was a therapist who reminded me to do this, to pick up a practice I knew of but had left aside in the hustle of life. So it all began with a cancer therapist....

I hope that helps.


Dx 7/2015, ILC, Left, 4cm, Stage IIIC, 32/33 nodes, ER+/PR+, HER2- Radiation Therapy External: Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Mastectomy: Left Hormonal Therapy Femara (letrozole)
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Jun 8, 2018 10:11PM lrsreyes wrote:

I am a ten-year survivor of a stage 3C lobular cancer. I had few side effects so I have done everything I can exercising 5X a week, changed my diet to mostly chicken, seafood, fruits, vegetable, take supplements ( turmeric, green tea, which were recommended by naturopathic doctors in complementary therapies). When I stop taking Femara I will take DIM ( got dizzy when I tried it so it is an effective estrogen blocker).


Dx 5/5/2008, ILC, 6cm+, Stage IIIC, Grade 1, 15/30 nodes, ER+/PR+, HER2-
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Jun 10, 2018 12:27AM Gracejoy wrote:

Congratulations Irsreyes for making it to 10 years with NED. This is so encouraging for many of us who aren't there yet especially you were with 15/30 nodes positive. May I ask you if you did any chemotherapy after surgery if so what kind? Thanks

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Jun 10, 2018 06:46PM Momine wrote:

MRock, I do the same, and it is helpful.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jun 10, 2018 09:31PM lrsreyes wrote:

I had 4 A/C then 4 Taxol chemotherapy. I did all the standard treatments for stage IIIC radiation and 10 year hormonal therapy (Femara). The complementary therapies forum is very helpful .

Dx 5/5/2008, ILC, 6cm+, Stage IIIC, Grade 1, 15/30 nodes, ER+/PR+, HER2-
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Jul 13, 2018 06:10AM margue wrote:

oh what timing I stumbled on this thread. My diagnosis is finalizing between stage 3 and 4 (having another biopsy today) and it is just so hard to wait and so damn scary ...and of course I reading so much my head is spinning. congratulations ladies and hoping I will be as lucky as you.

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Jul 13, 2018 02:35PM Momine wrote:

Margue, BTDT, fingers crossed it is "only" stage 3. The waiting is excruciating, no way around it. Once you have answers and a plan it gets a little easier to handle.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jul 17, 2018 01:56AM dakrock wrote:

I understand how you feel.  Everyone says you look great but they don't know how you really are stressing and worrying all the time.  I had mastectomy on my right breast, no nodes involved and I am on letrozole also.  I was lucky no chemo needed I am 72 and have been on estrogen since I was 29 due to a hysterectomy at 29.  I too had ILC and had multiple mammograms every year and followed by sonograms.  I think mammograms are foolish when you have ILC   they don't show anything.    I am not quite 5 months since my surgery and I worry every day about every pain, numbness etc.  My blood pressure has skyrocketed and now I am on medicine for that and anxiety You are not alone in your worries but after reading all these stories I guess the best thing to do is try to stay positive.  I have good days doing that and bad days.   I wish you good thoughts and health and most of all peace of mind.   Good Luck. 

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant
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Aug 9, 2018 07:49AM Chucksmommy wrote:

margue I hope you are doing ok...please keep us posted as you can.

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Aug 9, 2018 07:51AM Chucksmommy wrote:

Thank you dakrock...I am taking it 1 day at a time and trying to keep busy.

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