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 12, 2016 09:59PM

Posted on: Apr 12, 2016 09:59PM

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; Mastectomy (Right) Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole breast: Breast, Lymph nodes, Chest wall
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Apr 12, 2016 10:06PM - edited Apr 12, 2016 10:09PM by meow13

oh yes they will soon respond. Lilly55 is on her way.

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Apr 13, 2016 06:37AM Robyn_S wrote:

Hello Gracejoy , I have just passed 5 years out from a stage 3a dx and am feeling fantastic.I have full confidence that I will see 10 years and am making plans for a lazy retirement traveling the world! 😎 Be brave and don't forget to live now !! ((Hugs))


Age 46 @ Dx, BMX, FEC/T, Rads, Tamoxifen, Femara, DIEP 2012 ( the works!!) Dx 3/8/2011, ILC, 6cm+, Stage IIIA, Grade 1, 1/5 nodes, ER+/PR+, HER2-
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Apr 13, 2016 08:04AM Lily55 wrote:

Not even half way there yet!  Four years from stage 3, diagnosis (and no chemo, as I refused it)

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/2/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/14/2012 Breast, Lymph nodes Hormonal Therapy 7/18/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Apr 13, 2016 08:44AM taag4 wrote:

Hi there, I had ILC stage 3 in my right breast in 2014. I am now talking to a PS to see about getting diep flap surgery (he said maybe may june) What Ilm wondering is with anyones ILC did you have both breasts removed as a precaution when you had your mastectomy. I see my oncologist next week and I am so looking forward to it. I think I am feeling a lump in my left breast now. Probably just my mind playing tricks on me but Im wondering if this will always be in the back of my mind. Maybe I should be having the other breast off, then there won't be the what if. When I saw your question of a 10 year survival rate it sort of threw me off. I never ever thought I would not be around for another 10/20 years. But the more I read in the forums I have come to realize just how serious my cancer was. My cancer was 9 cm and lymph nodes were involved. Hope to see lots of people saying they have met there 10 year anniversary .

Tracey

Dx 2/18/2014, ILC, Right, 6cm+, Stage IIIC, Grade 2, 1/15 nodes, ER+/PR-, HER2-, Surgery 3/22/2014 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Chemotherapy 5/14/2014 AC + T (Taxol) Radiation Therapy 9/8/2014 Whole breast: Breast, Lymph nodes, Chest wall Surgery 6/6/2016 Reconstruction (right): Free TRAM flap Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole)
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Apr 13, 2016 11:16AM KSil wrote:

GraceJoy,

I am three years out from a stage 3 diagnoses. My tumor was just under 6 cm and I had 4 nodes packed with cancer. Also lympvascular invasion and perineural invasion (which was cancer that spread to the nerve vessels). I have some aches and pains, but overall I am healthy and I feel great for the most part.

There are many of us that just don't post all that much since we have moved on beyond treatment. I go for my MO visit every 6-months and a radiation oncology visit yearly. I read everyday, but I need to remind myself how important it is to post, to provide hope to those newly diagnosed. I feel like I know many of the ladies on this board personally, even though I don't write much.

Love and Hugs to All ~

Karen

Dx 3/3/2005, DCIS, 3cm, Stage 0, Grade 3, 0/3 nodes Surgery 5/4/2005 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Dx 4/8/2013, ILC, 6cm+, Stage IIIA, Grade 2, 4/7 nodes, ER+/PR+, HER2- Surgery 5/19/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 14, 2016 07:43AM - edited Apr 14, 2016 07:44AM by mbasford0

hi I am 3 years clear and I did have both breasts removed as I had read lobular cancer has a slight chance of spreading to the unaffected breast. My cancer was also huge and high grade 2with 1 lymph node infected out of 26, I've had my ovaries removed as it was 8/8 oestrogen driven and am now taking femara as I read this is more effective for lobular cancer than tamoxifen. Good luck with your journey and stay positive you will get to 10 years

Dx 8/1/2013, ILC, 6cm+, Stage IIIA, Grade 2, 1/26 nodes, ER+/PR-, HER2-
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Apr 14, 2016 08:59AM claireinaz wrote:

Hi Gracejoy, I would venture to say many, many women have survived stage 3 and 10 years or more. You may not get a lot of responses from those ladies only because they have moved on with their lives, bc in their rear view mirrors (although they may glance back from time to time) and never visit these boards!

taag4, I had a bi-lateral exactly for the reason you posted--has a tendency to be bi-focal. I was vindicated when, after my surgery and my surgeon reviewed the pathology with me, which reported that I had mild hyperplasia in the "good" breast, which could have gone bad in the future. Although I know that it's physically impossible to remove every single cell, I feel relieved that I did everything I could to protect myself from bc. Vainly I also wanted both breasts to match in the reconstruction process, so removing both was better for that. Downside was the loss of sensation, which was saddening since I'm married and sexual.

Oh well.

Claire

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Apr 15, 2016 07:35AM lucca06 wrote:

Gracejoy, just passed my 5 year mark and am in a really great place. Happy, healthy and most definitely planning on hitting the 10! 12cm area of tumour and DCIS/LCIS, 9/18 nodes positive after chemo etc. Focus on all the things you want to do in the future and you will get there.

Dx 3/23/2011, ILC, Right, 6cm+, Stage IIIB, Grade 2, 9/18 nodes, ER+/PR+, HER2- Chemotherapy 4/1/2011 Surgery 8/22/2011 Lymph node removal; Lymph node removal (Right); Mastectomy; Mastectomy (Right); Reconstruction (Right): Fat grafting, translation missing: en.treatments.surgery.surgery_types.short_options.right_reconstruction_flap-reconstruction_sgap-flap-hip-flap
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Apr 15, 2016 08:13AM taag4 wrote:

Very encouraging and glad to hear Lucca06 and claireinaz. Looking forward to seeing my oncologist tuesday and moving on from this nagging feeling in the back of my mind. Having a diep flap done May or June I was told, so looking forward to getting back to my new normal.

Dx 2/18/2014, ILC, Right, 6cm+, Stage IIIC, Grade 2, 1/15 nodes, ER+/PR-, HER2-, Surgery 3/22/2014 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Chemotherapy 5/14/2014 AC + T (Taxol) Radiation Therapy 9/8/2014 Whole breast: Breast, Lymph nodes, Chest wall Surgery 6/6/2016 Reconstruction (right): Free TRAM flap Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole)
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Apr 15, 2016 04:17PM jenni__ca wrote:

yep it can be done - i made it !!!

ILC, multifocal, 7+++cm, ER+, PR-, HER2-, 1/4 nodes, stage 3A ...16 years !!!!!! and counting....

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