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Topic: Any long term survivor stories with ILC

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

Posted on: Aug 15, 2017 10:03AM

beach2beach wrote:

Hi,

Was hoping for some long term survivor stories. Found so much conflicting information on ILC. Not sure where the truth lies. I know each person is unique but overall hard to find good information on it.

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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Aug 29, 2017 12:06AM claireinaz wrote:

Not sure what you mean by "long term", exactly. I know there are plenty of us who have many, many years after an ILC dx. Most of us don't get on here very much since we are living our lives and not checking here for information as we would when we were in active tx, but I take heart in all the survivor stories where women were diagnosed decades ago and drop in to say hi.

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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Aug 29, 2017 03:21PM beach2beach wrote:

Hi Claire,

Exactly how you put it. To hear stories of women who are many years post Dx. Especially since there in general does not seem to be as many ILC as there are IDC posts it seems. I know it is less common than IDC,

Great to hear!

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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Aug 29, 2017 04:13PM ck55 wrote:

Hi Beach, I am coming up on 11 years in November. Had a huge (9CM) tumor, 2+ nodes.

Feeling good, enjoying life.

Hope this helps.

Cheers,

DX 11/9/06 9cm ILC Stage 3A Mastectomy ER+ PR+ HR- 2/16 Nodes DD AC/Taxol Radiation
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Aug 29, 2017 07:24PM beach2beach wrote:

Great to hear and read ck55! I'm planning being here a long time and following the same of feeling good and enjoying life.

Thanks for responding. Makes a sweet read for us newbies. :) Happy

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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Sep 3, 2017 03:45AM - edited Sep 3, 2017 03:47AM by SajeScents

Thanks for sharing, @ck55. That gives me hope!


Dx Dec 2016 - ILC (R); IDC (L); bilateral lumpectomies, Stage IIB ER/PR+, HER2+ 1/8 nodes, Chemo DCH; rads x16 (L) and x25 (R); now on anastrozole daily & Prolia inj q6 months
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Sep 3, 2017 04:08AM Meow13 wrote:

I am now 6 years no recurrence. I had one idc and one ilc with oncodx of 34.

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Sep 3, 2017 05:34PM cathmg45 wrote:

Hi Beach2beach,

I was diagnosed in July of 2008, so it has been a bit over 9 years apparently cancer free, or in remission. I was 43 and my greatest wish was to see both of my children graduate from high school. They are now college graduates! Hang in there-sending you healthy wishes!

Catherine

Dx 7/17/2008, ILC, 4cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2-
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Sep 3, 2017 06:05PM Racy wrote:

I will be a seven year survivor next month. I had chemo and have been on Femara for six years. I attribute my survival to the Femara and God.

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Sep 3, 2017 08:04PM claireinaz wrote:

Love that story, Catherine!

My plastic surgeon is always encouraging....he asked me how long it had been, and when I told him (I was getting a checkup) he was really positive. He's been at his job a good long while so I take heart in his feedback.

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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Sep 4, 2017 12:11PM - edited Sep 4, 2017 12:12PM by Theresanne

I was diagnosed with st 2 Lobular in 2011....strongly er/pr+, her2 neg...no nodes. Every year, Every day...I feel worse and more terrified of recurrence or metastasis....as I have read many times that hormone positive cancers can never be cured, and can recur twenty+ years after initial diagnosis. Every day, I cry, sickened..and feel I cannot continue. I've tried therapy and antidepressants...nothing has worked...sorry to be a downer here....don't know where else to turn....ptsd for the rest of my life...

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Sep 4, 2017 06:14PM beach2beach wrote:

Theresanne,

I'm just going through it, but I understand. Im still numb. I know there are no guarantees. There are tho, many, many women who never have a recurrence. They just don't post here anymore or never have to begin with. Fear will hold us hostage. I keep reminding myself of that. I don't want to face each day and only have the neg to think of so I try to do what I want, and plan to do many things. I think it is something on most womens minds once they have been dx'd and gone through treatment, some can push it back and go on and live and for others the fear takes over the day. My sis is 9yrs out of Inflammatory Breast Cancer, that was an immediate 3b I believe. She has told me she still has that fear with each ache and pain but has in the past 9years lived to see her oldest daughter get married, have 1st grandbaby, babysit etc. We will never know but I think we have to keep a thought that we will live a full life and die of something else. If we don't keep a positive thought in our head, we will continue in that vicious cycle.

I hope you can find some peace somewhere, somehow. I'm trying to do the same. Hugs.

Meow, Cath and Racy....great to read! We should all plan on a long, full life. Heart

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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Sep 4, 2017 06:31PM Lily55 wrote:

5+ years out, no chemo, stage 3 on diagnosis........

PTSD but now over that mostly apart from how I feel about my mutilated state......i fact feeling mutilated is worse for me than the diagnosis of cáncer....

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Sep 4, 2017 08:28PM Theresanne wrote:

thank you beach2... you're very sweet...and smart..hugs to you too

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Sep 6, 2017 05:06PM Gitane wrote:

This is 12 years for me, dx was 2005, stage 3a pleomorphic ILC, Oncotype 23. There were so many tumors in my breast they didn't try to count, just said "a multitude". I truly did not expect to see 2017. This is the first year I didn't post here about still being alive, I thought I would just not do it this time, but then I saw this thread. I hope all my "pleopals" from years ago are doing well, I think about you guys often! I remember we joked about getting old together. Well, I'm getting old now, and that's O.K. Hugs to all of you living the dx/treatment phase. Sending support your way. G.

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Sep 6, 2017 08:52PM beach2beach wrote:

Lily55...thanks for posting. It is a major loss. Any chance reconstruction being an option for you? Stay strong!

Gitane..12 years congrats! Look forward to seeing you write one every year for the next 20/30 years! (we can make that longer too :) )

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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Sep 7, 2017 12:29AM Meow13 wrote:

Theresanne, what helps for me is that if my cancer comes back in 20 years there probably will be more effective drugs by that time. I hate all the medical exams but feel so much better each time they come back no cancer.

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Sep 7, 2017 12:33AM Meow13 wrote:

Lilly55, are you outside the US? I think I read that you were waiting for reconstruction.

I really relate about the mutilation and I didn't feel better until I got my DIEP. I feel good about the results.

I had to wait 4 horrible months for my reconstruction I think you've been waiting alot longer.

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Sep 11, 2017 12:46AM Annette_U wrote:

have to say I do feel mutilated........ but better then dead or a stage IV. I am not as comfortable with fake boobs, hysterectomy, radiation, hot flashes and leterozole. But- real happy I am still here and loving life with my kitty, bunny, Romeo my dog, my most fabulous husband, family and friends. Diagnosed in 2013 and so far just joint pain from blockers. ......just want to add I enjoy chocolate and a good bottle of wine now more then ever!!!

Dx 4/13/2013, ILC, 5cm, Stage IIIA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Chemotherapy 4/18/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Surgery 10/29/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 12/15/2013 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/7/2014 Breast, Lymph nodes Surgery 8/6/2014 Reconstruction (left); Reconstruction (right) Surgery 11/25/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 9/1/2015 Prophylactic ovary removal Surgery
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Sep 11, 2017 03:45AM Meow13 wrote:

Annette, I really don't think about my recon as being fake just rearranged. It isn't as comfortable when lying down especially since nerves are coming back to life even 5 years later.

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Sep 11, 2017 09:03PM IllinoisNancy wrote:

Hi A!ll,

I'm an 11 year survivor and feeling very good. I think a positive mental attitude is the best medicine. I also take Femara and Ibrance without too many side effects. Good luck everyone....the cure will be here soon!

Take care,

Nancy

Pleomorphic Invasive Breast cancer three times 2006, 2010 and 2016, IBrance and Femara, NET Cancer in stomach and liver 2015, Sandostatin
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Sep 12, 2017 01:02PM hlya wrote:

To all long survivors.

How many years have you been treated with anit-hormone? When did you start to take off from Tamoxifen etc...

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Sep 12, 2017 01:04PM - edited Sep 12, 2017 01:04PM by hlya

Hi, Gitane,


I remember you. When I came here in 2009 you were here. So good to see you. Bless you

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Sep 12, 2017 02:09PM Dianarose wrote:

I will be 13 years in October. Might be stage IV now but still here and fighting.

6/10/13 mets to ovary now. Now mets. To peritoneal stage IV Dx 3/22/2012, ILC, Both breasts, 1cm, Stage IV, metastasized to bone/other, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 5/30/2012 CMF Radiation Therapy 12/2/2012 3DCRT: Breast, Lymph nodes Hormonal Therapy 8/9/2013 Aromasin (exemestane) Targeted Therapy
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Sep 26, 2017 10:30PM Hipline wrote:

I will be 7 years in November. I did 3 years of Tamoxifen and now am in year 4 of Femara. I will likely stay on intermittent Femara for a long time. Life is good and my side effects are manageable. Stay active, do what you love, and love!

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole)
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Sep 27, 2017 08:24PM momand2kids wrote:

Hi

I am coming up on 9 years out-- lumpectomy, chemo, radiation and 5 years of AI.... risk of recurrence is low--- had a slow growing tumor- and as someone said, so much has happened in the past 9 years-- treatments are different, approach is different--I don't spend any time worrying about recurrence and often times forget that I ever even had bc..... it is just not a big part of my life right now-- I don't come here that often, but when I do, I always try to offer hope to those just starting out---I feel great and fully expect to live a long and interesting life!!!


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Sep 29, 2017 09:09PM beach2beach wrote:

Mom, thanks for posting. Love hearing from others, extra special when its posted along with not being on often due to getting on with life. Now that's great to read!

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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Oct 3, 2017 11:06PM - edited Oct 3, 2017 11:07PM by toomuch

beach2beach - I'm 7 years out from diagnosis and I remember searching for positive stories when I found bc.org. So many of the woman I leaned on early, don't check in anymore. BC doesn't consume my thoughts like it once did but I have daily reminders that I had it. The aches from Arimidex which I still take each day and will for 10 years are there. Mostly I remember because I'm grateful every day that I'm alive and NED. There's no doubt that I've lived differently since my diagnosis. I say yes more to opportunities to travel, spend time with my family and friends and build memories. My son entered HS a few months after I was diagnosed and at that time, I was only brazen enough to hope be at his HS graduation. He's now a college senior. Like others said life goes on...

Theresann - I hope that you won't give up trying to get help for your PTSD and depression. I too had PTSD after diagnosis. I found a great counselor who helped me through it. If one therapist didn't help, try another, use guided imagery or meditation, acupuncture or medication but don't give up!

Gitane - It's so very nice to read your post and to know that you're still doing well. I look forward to your post each year so i hope you'll think about continuing the tradition you started 12 years ago! It's so awesome!

Nancy - Glad to see that you're once again doing well too!


edited for grammer

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Oct 12, 2017 10:06PM Rdrunner wrote:

I am 5 years out next week. On Tamoxifen since then. Check up today was good. Staying on Tamoxifen for another 5 or switch to AI.

I feel pretty good. Even though I was diagnosed with another cancer in 2015 (stomach carcinoid) also in remission and thankfully surgery did the job no chemo for that one. I don't feel afraid of much anymore and try to live life to the fullest.



Dx 10/23/2012, ILC, 6cm+, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+ Dx 11/23/2012, DCIS, <1cm, Stage II, Grade 2, 0/4 nodes, ER+/PR+ Dx 11/23/2012, ILC, <1cm, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+ Dx 11/23/2012, IDC, <1cm, Stage IIB, Grade 1, 0/4 nodes, ER+/PR+ Surgery 11/23/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 2/6/2013 AC + T (Taxol) Hormonal Therapy 5/1/2013 Surgery 9/12/2013 Prophylactic mastectomy: Right
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Oct 15, 2017 05:59PM Mary_Lynn wrote:

4 years out --- getting easier and easier to put it in the rear-view mirror and accept new body image resulting from anastrozole effects. Every day is a new and wonderful day to experience.

Dx 9/19/2013, ILC, Right, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 10/23/2013 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 11/4/2013 Lumpectomy: Right Radiation Therapy 12/15/2013 Breast Hormonal Therapy 2/23/2014 Arimidex (anastrozole)
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Nov 8, 2017 11:20AM Hipline wrote:

I am 7 years out! Feeling good, still on Femara.

There will be a webinar on ILC tomorrow sponsored by ABCD, where I am a mentor. It features researcher Steffi Oesterreich and clinician Rachel Jankowitz. You can ask questions at the end. Here is the link:

http://hosted.verticalresponse.com/1808367/3978e23d8c/TEST/TEST/


Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole)

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