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Topic: ILC stage 2b, positive node...any 5-10+ year survivors?

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

Posted on: Mar 1, 2018 06:23PM

lpk29 wrote:

Hi, a lot of the posts I’m reading are a couple of years old. Wanted to hear from survivors as I am freaking out about having bc. I am one year out from dx

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Posts 1 - 27 (27 total)

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Mar 2, 2018 08:31AM claireinaz wrote:

Here's a 5+ year survivor.


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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Mar 2, 2018 09:32AM bluepearl wrote:

My friend had stage 3A ILC and is out 10 years.


Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/11/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/9/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/17/2013
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Mar 2, 2018 01:19PM lpk29 wrote:

yay!! Thank you! I’ve been feeling so down lately. It’s good to hear some positivity

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Mar 2, 2018 02:28PM IAmElaine wrote:

I hit my 14 year anniversary yesterday. I had a very crappy diagnosis. (see my stats below)

BTW, freaking out at one year out is COMPLETELY normal!

Diagnosed March 1, 2004 with stage 3C ILC, 7cm tumor with 11+ nodes
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Mar 2, 2018 08:33PM lpk29 wrote:

IamElaine I’m so happy to see your post!! Congrats on 14 years!! I have been having a really hard time the past few weeks. This brightened my night!

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Mar 2, 2018 09:36PM beach2beach wrote:

Hi,

I had a thread last year looking for ILC'ers who have been on the other side for a while. I don't know how to copy the link but it is in this forum and it is under the thread of Any long time survivor stories with ILC. (maybe 5 months ago..) Had some great responses. Love reading the positive stories and find it comforting. Look for it and bet you'll find more stories.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 3, 2018 04:29AM lpk29 wrote:

ok, thanks! I’m still getting used to navigating through this site. It’s little awkward

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Mar 7, 2018 01:08PM mojoputts wrote:

Hi.First time posting. This seems like a really helpful place. I found a lump two weeks ago that felt like a golf ball and showed up out of nowhere. Just diagnosed but will be getting more tests. Biopsy report....ILC, Pleomorphic type, provisional grade 2. ER positive(strong), PR positive (moderate). HER2 negative. In all my searching after radiologist told me what he thought it was, I never saw or looked up Pleomorphic. And now that the biopsy report is in, I'm bordering on freaking out. What are some good questions to ask (meeting my possible team tomorrow)? And how the heck does anyone make good choices about where to get the best treatment? I don't see a lot of current information about the pleomorphic type.


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Mar 7, 2018 06:29PM GeorgiaRai wrote:

Six years ago this month I was about halfway through chemo. Hang in there!

"You're braver than you believe, stronger than you seem, and smarter than you think" ~ Christopher Robin Dx 11/21/2011, ILC, 6cm+, Stage IIIA, Grade 1, 8/8 nodes, ER+/PR+, HER2- Chemotherapy 1/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/28/2012 Mastectomy: Left, Right Radiation Therapy 8/10/2012 Breast, Lymph nodes Hormonal Therapy 11/15/2012
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Mar 7, 2018 07:55PM momand2kids wrote:

almost 10 years out-- had lumpectomy, chemo, radiation--- 5 years of AI's....

even had thyroid cancer 4 years ago---

but I feel great-- life is good.... everyone healthy!!!


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Mar 8, 2018 03:38AM lpk29 wrote:

mojoputts, I would do all the research you can and write all of your questions down. Get multiple opinions. I’m guessing you have an MRI next?

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Mar 8, 2018 08:35AM lpk29 wrote:

momand2kids glad to hear it!! Did you stop taking hormone blockers? We’re you freaked out?

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Mar 8, 2018 08:58AM lpk29 wrote:

georgiarae, that’s awesome! Are you still on hormone blockers? What do you take

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Mar 9, 2018 01:53PM GeorgiaRai wrote:

After two years on tamoxifen, I was switched to letrozole (Femera) which I hated; I was confused, foggy, sad, achy, congested, and constantly having to pee (lol). Then I tried exemestane (Aromasin) which was a 100% improvement; I took it for 3 years, until my insurance changed and it was too expensive.

Now I'm on anastrozole (Arimidex) which I expect to take for another year. The SEs aren't too bad as long as I take it every other day rather than daily. I'm hoping to stop all meds at the 7 year mark.

"You're braver than you believe, stronger than you seem, and smarter than you think" ~ Christopher Robin Dx 11/21/2011, ILC, 6cm+, Stage IIIA, Grade 1, 8/8 nodes, ER+/PR+, HER2- Chemotherapy 1/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/28/2012 Mastectomy: Left, Right Radiation Therapy 8/10/2012 Breast, Lymph nodes Hormonal Therapy 11/15/2012
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Mar 9, 2018 02:49PM lpk29 wrote:

so you can stop at 7 years and take nothing after that? I’m I’ve been off TAM for two weeks for exchange surgery and I can’t wait to go back on. I don’t feel comfortable without it

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Mar 9, 2018 08:25PM - edited Mar 9, 2018 08:28PM by GeorgiaRai

When I was first diagnosed, I was told to expect to be on meds for a total of 5 years (split between tamox & AIs, due to my age). About two years ago, my onc said the recommendation had been changed to 10 years, but then, a year ago, more recent studies showed no additional benefit after 5 years. So...for now, we've settled on 5 years of AI's (after 2 of tamox), unless things change again.

I'm ready to be done with it all, and look forward to going off all of them (I also take Effexor for hot flashes). But that's just me & my unpopular opinion! lol

Edited to add: this is just what my MO told me, and I trust her opinion and education. Don't mean to imply this should be the protocol for everyone/anyone else. :)

"You're braver than you believe, stronger than you seem, and smarter than you think" ~ Christopher Robin Dx 11/21/2011, ILC, 6cm+, Stage IIIA, Grade 1, 8/8 nodes, ER+/PR+, HER2- Chemotherapy 1/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/28/2012 Mastectomy: Left, Right Radiation Therapy 8/10/2012 Breast, Lymph nodes Hormonal Therapy 11/15/2012
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Mar 11, 2018 10:40PM Robyn_S wrote:

I have just passed my 7 year mark from diagnosis and feel as though it is really behind me now. The diagnosis was serious and I had no hesitation in using all the treatments box, chemo, rads, and tamoxifen followed by Femara.

Now...Feeling fantastic and have been off Femara for six months now after a discussion with my MO. He's suggested a trial to see how I felt without the aromatase inhibitors...and I feel so much better ...younger..that my QOL has improved. Feel like I have shrugged off the old lady feeling. I remember what you are going through now...so I can say that you will get through the anxiety and a day will come that you will be yourself again. Keep living with an eye to the future and allow yourself time to recover from the treatment. No time for cancer when you are busy enjoying life!

Wishing you a smooth journey

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 11, 2018 08:09PM momand2kids wrote:

I stopped taking AI's at the 5.5 year mark--- so about 4.5 year ago....


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Apr 12, 2018 12:22AM Cloudygarden wrote:

19 years. I was diagnosed with lobular invasive breast cancer in1999, new tumor found in opposite breast in 2000, relapsed local, regional in 2013. I am doing fairly well enjoying life & family, with some joint & bone pain & issues. No progression of disease since 2013. I wish you well. Cloudy

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Apr 14, 2018 08:08AM claireinaz wrote:

We can stop taking AIs at ANY time--it's our choice...but the most recent thinking is that if you are considered high risk, like I am, we are advised to stay on them longer than 5 years, more like 10, and further research may suggest a lifelong AI for some of us like me, who had + nodes, etc. (This according to my MO.)

I'm at about 7 years and hope that research doesn't find that a lifelong course of treatment is necessary. I'm really sick of taking Aromasin, frankly...

Claire in AZ

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 30, 2018 03:14PM erinm216 wrote:

5 years in two months!

Surgery 1/10/2013 Lumpectomy: Right Dx 1/18/2013, ILC, 6cm+, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/25/2013 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel Hormonal Therapy 5/16/2013 Arimidex (anastrozole) Surgery 6/19/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 9/24/2013 Aromasin (exemestane) Surgery 11/3/2013 Reconstruction (left); Reconstruction (right) Surgery 2/8/2015 Reconstruction (left); Reconstruction (right)
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May 9, 2018 10:02AM Texas357 wrote:

Diagnosed in October 2008. I'm in the home stretch for the 10-year mark.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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May 9, 2018 05:53PM lpk29 wrote:

texas357, congrats on your 10 year anniversary this year! Happy to hear it!!

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May 9, 2018 06:29PM Humblepeace wrote:

Lpk29 - this is a really great thread. It is very encouraging and brings hope.I hope you don’t mind me asking the question of how many women stayed on tamoxifen and dealt with achiness the entire 5 years? Or how many had se’s that came and went the course of the 5 or more years? Thanks for all that reply and best wishes on your continued good health

Dx 3/2017, IDC, Right, Stage IIA, Grade 3, ER+ Hormonal Therapy 6/10/2018 Arimidex (anastrozole) Surgery Lymph node removal: Right; Mastectomy: Right Radiation Therapy Whole-breast: Breast Chemotherapy
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May 10, 2018 09:11AM lpk29 wrote:

I’ve been on TAM for almost one year and I’m not achy anymore.

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Oct 13, 2018 05:53PM bc101 wrote:

I’m 5 years out and am off Aromasin. I just had my final visit with my MO yesterday and am feeling quite vulnerable, but it sure helps reading the success stories here! Hugs to everyone!

Heart

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Oct 14, 2018 12:57PM lpk29 wrote:

I want to stay on something forever, lol. I’m currently switching from TAM to an AI. The TAM was thickening my uterine lining

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