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Topic: ILC 4 1/2 years out

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

Posted on: Sep 9, 2008 05:16PM

spar2 wrote:

I was told Invasive lobular cancer has 30% reocurrance rate, I am 4 1/2 years NED now.  Has anyone out there had a reoccurance?  How many still NED like me?  Hope all is well with all of you.

www.spar2.multiply.com Lets help make each other's life better
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Sep 9, 2008 05:25PM HensonChi wrote:

Congrats to you...I hope to be writing whe I am 4 years out!

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Sep 9, 2008 05:31PM NancyNY wrote:

Me too Spar.  I was diagnosed May 13, 2004, so it is almost 41/2 years for me too. Hope we're all here for 10, 20 and even longer.

Dx 5/18/2004, ILC, 2cm, Stage IIA, 0/4 nodes, ER+/PR+, HER2-
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Sep 9, 2008 08:13PM lolmarsha wrote:

I don't think there is many of us here. so happy for all SO long. Just 1 1/2 years for me.Guess it depends on our signature.You are doing the RIGHT thing.Really lifts the hope. Thanks.

always marsha Dx 4/16/2007, ILC, 5cm, Stage IV, 22/31 nodes, mets, ER+/PR+
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Sep 9, 2008 08:19PM spar2 wrote:

I hope we are all still posting many years down the line!!!!!!!!

www.spar2.multiply.com Lets help make each other's life better
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Sep 9, 2008 08:29PM LUVmy2girlZ wrote:

SPAR !

I am SO  pleased to hear about your 4 1/2 year mark...I think many sisters just don't post for a length of a time. 

You are closer to your 5 year...then what are the percentages ???

I am keeping my fingers and toes crossed for you...I LOVE it when people post their marks...it brings a little sigh of relief to the rest of us!

I will always remember you, and our adventures together!!!

Cheers to you sister !

Much LUV

congratulations-bluedrinks.gif

BRCA 1 & 2 neg. mx- 7 wks rads (35 rounds) LIVE LAUGH LUV... Dx 11/19/2007, DCIS, 5cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-
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Sep 9, 2008 08:41PM spar2 wrote:

I will never forget you Luv my sweetie, we have had some funny good times together and I do love ya.

www.spar2.multiply.com Lets help make each other's life better
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Sep 9, 2008 08:53PM - edited Jul 9, 2010 09:46PM by Maire67

.

Dx 6/2005, ILC, Right, 5cm, Stage IIIB, metastasized to bone, 1/9 nodes, ER+/PR+, HER2+ Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Lymph node removal; Mastectomy Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab)
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Sep 9, 2008 10:35PM Gitane wrote:

3 years from my diagnosis.  Still NED.  Hope others post, too.

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Sep 9, 2008 11:59PM Little-G wrote:

I will be 3 years out the end of this year.  No re-occurance..knock on wood!!!!!!!!!!!  I also tend to come and go on the boards, but I do like to pop in and see how everyone is once in a while.  Here's to hearing from all of you many more years!!

g

Dx 2005, ILC, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Sep 10, 2008 09:11AM LUVmy2girlZ wrote:

(((HUGS))) to you Spar!

Love ya back!

Animated Kiss

Much LUV

BRCA 1 & 2 neg. mx- 7 wks rads (35 rounds) LIVE LAUGH LUV... Dx 11/19/2007, DCIS, 5cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-
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Sep 10, 2008 10:51AM spar2 wrote:

ROFLMAO

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Sep 10, 2008 02:08PM LauraGTO wrote:

I was dx'd in July of 2005...that's makes it just over 3 years for me! Time will tell. Best wishes to all of you Elite Lob Girls.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Sep 10, 2008 04:30PM - edited Sep 10, 2008 04:34PM by Trish03

I was dx in September of 2003. I can't believe that this year marks 5 years. I'm doing great...NED so far. My wish is for many, many more years for all of us.

Hugs,

Trish

Dx 09/03, ILC, Stage IIIa, 7 cm, 4/18+ nodes, ER+/PR+, Her2-, 11/05 BL DIEP, 5/13 Stage IV, dx mets to liver Dx 9/15/2003, ILC, 6cm+, Stage IIIA, 4/18 nodes, ER+/PR+, HER2- Surgery 9/30/2003 Mastectomy: Right Chemotherapy 10/14/2003 AC + T (Taxol) Hormonal Therapy 4/14/2004 Arimidex (anastrozole) Radiation Therapy 4/14/2004 Breast Surgery 11/16/2005 Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 5/27/2013, ILC, 6cm+, Stage IV, ER+/PR+, HER2+ Targeted Therapy 6/23/2013 Herceptin (trastuzumab) Targeted Therapy 6/23/2013 Perjeta (pertuzumab) Chemotherapy 6/23/2013 Taxotere (docetaxel)
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Sep 11, 2008 01:55AM Jani_ wrote:

Hi ladies!

I was diagnosed February 2007, so 1 1/2 years NED for me. Hoping for many, many more!

Thank you to everyone who has replied on this post. It really gives me hope!

God bless,

Janine 

Initial dx: Feb 2007; tx: Mastectomy, Chemo, Radiation, Tamoxifen. Bone Mets dx Mar 2012; tx: Ooph, Radiation Dx 2/16/2007, ILC, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/30/2012, ILC, Stage IV, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Sep 13, 2008 12:02PM moonie wrote:

I am just a little over 3 months shy of my 5 year mark!!!!

Just had a bone scan which turned out to be arthritis---still NED!

Best of luck to all of you!

Dxd 12/03, DCIS, Mast, ILC, ooph, unilateral pedicle tram 2004
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Sep 13, 2008 10:16PM spar2 wrote:

It is pretty wonderful that we are NED and want to stay that way!!!!  Thanks everyone for posting.

www.spar2.multiply.com Lets help make each other's life better
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Sep 14, 2008 09:46AM GrammyNancy wrote:

Thank you for posting this....I'm  1 1/2 year since diagnosis and NED and it sure gives me a great deal of hope to hear your stories.

Nancy

Dx 2/5/2007, ILC, 2cm, Stage IIB, Grade 3, 1/7 nodes, ER+/PR+, HER2+
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Sep 14, 2008 02:44PM snicklefritz wrote:

Hi everyone:

 I'm almost a five-year survivor.  Was diagnosed with invasive pleomorphic lobular and node positive.  Yes, there is not only hope but we are all solid proof that great progress has been made and we all play to win.  To spar2, Nancy and all of us, we will make it and won/t take no for an answer.

Love to all, Mary Jane

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Sep 14, 2008 08:00PM althea wrote:

I'm getting close to 4 years since my diagnosis.  I went through chemo first, then surgery, then rads.  It's nothing short of a miracle that my nodes had no involvement.  I should've been dx'd sooner. 

Back in those days, I didn't know there was more than one kind of breast cancer.  Apparently, the doctor I was seeing didn't know this either.  My tumor got an extra nine months to grow because of him.  Well, and because of me too, because I believed what he said.  Mine was very slow growing, and thankfully so. 

As I learned about lobular, it concerned me about the recurrence rate.  Still does.  I've been making slow, yet persistent, changes in my food choices and I hope it's enough to keep that nasty cancer from ever coming back.  I took tamoxifen for 2 years.  I just couldn't see how I could hang with it any longer.  I stopped.  Now I'm educating myself about alternative treatments.  I have a feeling my choices would be very different if I had to go through another round of treatments.  Hopefully, that will be a choice I don't ever have occasion to make.   

Listen with a questioning ear. quote from George Ohsawa, founder of macrobiotics Dx 12/22/2004, ILC, 5cm, Stage II, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Sep 15, 2008 08:00PM Harley44 wrote:

Spar,

I didn't know (probably just don't remember, I guess I forgot... can't remember anything these days!)  But I didn't know that you are Lobular... My bc was IDC...  I think that is the most popular type...  lol 

Great to hear that you have been 4 1/2 yrs!!!   I read on the beach thread that you will be undergoing some add'l tests, and scans...  Just want you to know that I'm thinking of you!

Love ya,

Harley

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Sep 15, 2008 08:04PM - edited Sep 15, 2008 08:04PM by LUVmy2girlZ

BEST of LUCK !!!! Spar....keep us posted w/ good news!  We will have to go "celebrate" okay?Wink

Love ya Spar! 

BRCA 1 & 2 neg. mx- 7 wks rads (35 rounds) LIVE LAUGH LUV... Dx 11/19/2007, DCIS, 5cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-
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Sep 15, 2008 08:57PM spar2 wrote:

Thank you guys.  Hope we get to celebrate with a party on the beach.  love back at you luv and harley, you guys are good friends.

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Sep 15, 2008 11:25PM pinoideae wrote:

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Sep 16, 2008 03:40PM spar2 wrote:

I am praying for an all clear on my pet imaging friday.  Hope we all stay ALL CLEAR and drink from the bottle of cancer free.  good going summer

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Sep 16, 2008 06:48PM awb wrote:

spar--my mom had ILC; lumpectomy, radiation and tamoxifen and is now a survivor of over 21 years without a recurrence! Good luck on your tests on Friday--praying you get good results.

Anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Sep 16, 2008 07:23PM sue_blue wrote:

I was diagnosed 13 months ago. I had my first 3 month check today after completing bilat mast, chemo, and rads. The check-up was good. I hope to be there with the rest of you, many year out from this.

Susan
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Sep 16, 2008 09:46PM Harley44 wrote:

spar,

I'll be thinking about you on Friday, and I'm praying that you get the "all clear"!   You are such a good friend!!   Love ya, Spar!

Just a little side note:

I'll be getting an u/s of my 'sick' breast on Oct. 2nd...  Seems I have a lump there, and my surgeon wants to check it out.  He 'thinks' it is a cyst.   So just a note to any of you out there who got a bi-lateral mast., or even just a single mast., you still have to be vigilant about doing bse's, because you can still get lumps on, under, or near the breast.  I had reconstruction too.  My surgeon once told me about a woman who had reconstruction, and he had to take out a lump which was located near the implant...  tricky surgery since he didn't want to burst the implant.  He said that it was benign, so now I'm thinking that is what they will say about my new development, only I don't want to have to have surgery again. 

Harley

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Sep 16, 2008 10:12PM - edited Sep 16, 2008 10:16PM by Gitane

Harley,

I had bi-lat mast, implant reconstruction, Harley, and I just read your post.  To be honest, I'm always checking because I'm just that anxious.  Now, I feel like doing a bse without breasts really makes sense.  You are so kind to post this, as it's very important to all of us.

Too bad you have to wait until Oct. 2nd to get the u/s.  Seems like a long wait.  Hopefully surgery won't be needed.  I'll be thinking about you and checking back.  Dang! 

Sniklefritz,

I'm really glad to know you are going strong.  There are so few of us PILCs.  Thank you for coming here to share the good news. 

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Sep 17, 2008 04:27PM spar2 wrote:

awb, that is just awsome and gives such encouragement to others to know you can be that many years out with lobular.   What a blessing.

www.spar2.multiply.com Lets help make each other's life better
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Sep 17, 2008 04:28PM spar2 wrote:

Harley, I think you and me are gonna be fine, we have just a few little bumps in the road but girlfriend we are tough and we will be OK!

www.spar2.multiply.com Lets help make each other's life better

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