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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Scared: ILC survival rate

Topic: Scared: ILC survival rate

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

Posted on: Apr 27, 2009 12:49AM

BWorrier wrote:

I read somewhere on web saying long term ILC survival rate is only 50%? I am feeling less hope in my future.

I don't like the saying "cured" as they even consider 5-years survival as "cured"... 5-year should not be counted for survival! Those stats look so scared!

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Posts 1 - 23 (23 total)

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Apr 27, 2009 01:57PM idaho wrote:

That could be without any treatment?  Don't feel less hope.  I don't like the "cured"saying either, because they say there is no "Cure" for cancer.  They should call it "postponed".  I don't think those stats sound right. Someone will come along that can give you some links to sights that you can put your info in and find out the survival rate.  Peace to you, Tami

There's no place like home......There's no place like home

Dx 2/1/2009, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Apr 28, 2009 11:59AM SLH wrote:

Excerpts from a 2003 study from the Breast Cancer Research site:  http://breast-cancer-research.com/content/6/3/R149

From a total of 50,399 patients with early breast cancer in the Baylor College of Medicine Breast Cancer databases, we identified 4140 patients (8.2%) with ILC, and 45,169 (89.6%) patients with IDC (not otherwise specified). The median follow-up time was 87 months.

In comparison with IDC, ILC was significantly more likely to occur in older patients, to be larger in size, to be estrogen and progesterone receptor positive, to have lower S-phase fraction, to be diploid, and to be HER-2, and epidermal growth factor receptor negative.

ILC was three times more likely to metastasize to the peritoneum, gastrointestinal tract, and ovaries (6.7% versus 1.8%).

From this report it is evident that the metastatic pattern for ILC differs from that of IDC. ILC was less likely to affect the lungs, pleura, and CNS (Central Nervous System) than was IDC. By contrast, the peritoneum, ovary, and gastrointestinal system were much more likely to be involved in advanced ILC.

The 5-year disease-free survival was 85.7% for ILC and 83.5% for IDC (P = 0.13). The 5-year overall survival was 85.6% for ILC and 84.1% for IDC (P = 0.64).”

From another study in www.pubmed.gov:
“The 5- and 30-year corrected survival rates of women with ILC were 78% and 50%, respectively, compared with 63% and 37% for women with IDC.... We conclude that ILC is associated with better survival than IDC.”

BigWorrier, you also have to take into consideration the average survival rate for people in general, which includes falling down stairs, getting hit by cars, or choking on a nut!
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Apr 28, 2009 07:03PM BWorrier wrote:

Hi, SLH,

Yes, that's one I read and why I said only half of us could survive for long time....

You made me smile but I have to say what they are talking about doesn't including falling down stairs, getting hit by cars, or choking on a nut, but they are just talking about survival from breast cancer.......*sigh*

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Apr 28, 2009 07:04PM BWorrier wrote:

Hi, Tami,


Sadly, what they said is about "with treatment".

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Apr 29, 2009 10:50AM SLH wrote:

Hi BW,

I wonder if the seemingly low 30-year survival rate (ILC - 50%, IDC - 37%) is related to the age of the participants in the study.  The 50,399 women involved had a median age of 64.6 years (ILC) and 60.6 years (IDC).

I've had BC for 4 years, 5 surgeries within the first 3.  I had to wean myself from bc.org and research studies because I was obsessed with numbers and what-ifs.  Every pain seemed to be cancer lurking back.  Now I just check in here occasionally to see how folks are doing.

Cancer survival is unpredictable.  A friend of mine had Stage 4+ melanoma with mets tumors in her neck and abdomen.  I say "had" because she's been cancer free for 8 years.

Be stoic with your treatment.  Live life happily.  Be careful swallowing nuts.

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Apr 29, 2009 12:34PM idaho wrote:

SLH- thanx for clarifying,  I guess you never know!  I agree that the ages of the participants should be taken into consideration.  I am only 47 and plan to live another 40 years.  (that is if I don't choke on a nut!)  Tami

There's no place like home......There's no place like home

Dx 2/1/2009, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Apr 30, 2009 10:41AM BWorrier wrote:

Hi, SLH,

I just read this which was published on 2004:

===============================

breast-cancer-research.com/con...

Conclusion

Results from this large dataset show clearly that ILC and IDC are different entities with different clinical courses and different biologic phenotypes, but no clinically meaningful differences in survival are evident. At present, both types of breast cancer should be managed similarly and histologic subtype (lobular or ductal) should not be a factor in the therapeutic decision-making process, and should not be considered an important prognostic or predictive factor at diagnosis. Emerging technologies such as high throughput genome mapping and microchip cDNA expression arrays may further elucidate molecular differences in these different types of breast cancer.

======================

I don't really understand why "the biologic phenotype of ILC is quite favorable, but these patients do not have better clinical outcomes than do patients with IDC", then they start to treat IDC/ILC the same....I think they didn't do their job well.

what you think?

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Apr 30, 2009 04:09PM SLH wrote:

The way that I interpreted the conclusion, was that although ILC and IDC cancers were quite different-- in appearance, in progression, in hormone factors, etc--the long-term survival rate is similar ("no clinically meaningful differences in survival are evident"). They stated that cancer being ILC or IDC was not as important as each tumor's characteristics, so that each person needs to be managed individually and not as a group.

When they say that "the biologic phenotype of ILC is quite favorable", it means that most ILC cases are ER+PR+, which means they can treat ILC patients long-term with AIs (Aromotase Inhibitors--I've been on Arimidex for 4 years, and my onc says he may want me to take it forever, unless my body disintegrates with osteoporosis!). If an IDC is ER-PR- the only treatment avenue is chemo, which is more toxic for the whole body.  I guess in that way we're "lucky"!

 But that study was conducted prior to 2003, published in 2004.  When I had my surgery in 2005, my surgeon didn't do an Oncotype DX test.  Now it's standard procedure.  The genome mapping is going to be next.  I'm betting that in just a few more years mastectomies and full-body chemo are going to seem barbaric with the new technologies.

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Apr 30, 2009 04:26PM awb wrote:

I don't know the stats on survival rates with ILC  ( I think it depends more on the actual progression of the cancer and not the particular type); but wanted to let you know some good hopeful news. My mom is a survivor of ILC of over 22 years now without a recurrence.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Apr 30, 2009 06:15PM BWorrier wrote:

SLH,

What you said makes sense! That's why I don't like what they talked about "5 years survival rate"...that doesn't mean anything.

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May 1, 2009 11:14AM, edited Aug 5, 2009 09:31AM by Seabee

BWorrier--I believe the significance of the 5-year survival rate is that most recurrance or metastasis occurs within that time frame. That doens't mean that they can't occur later, but the first five years are the most critical.

Per spem vivo.

Dx 9/9/2008, ILC, 2cm, Stage IIb, Grade 1, 3/23 nodes, ER+/PR-, HER2-
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May 1, 2009 11:44AM BWorrier wrote:

Hi, Seabee - Thanks, that makes sense.

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May 1, 2009 12:24PM wallycat wrote:

My oncologist said this to me...IDC type cancer is worrisome in the first 5 years and "USUALLY" (and of course we know that this is just an odds game and nothing is ever really usual), if there will be a recurrence, it happens by year 5. 

ILC type cancer is usually slower growing and IF there were to be a recurrence, "USUALLY" shows up after 10 years.

So ILC has a better outlook near term and then the risk actually increases (man, did I hate to hear that!).  Of course, we can all hope and pray that each year, there is better technology and detection and meds, etc.....and maybe a CURE!

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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May 3, 2009 05:07PM Seabee wrote:

I think wallycat's onc is right. IDC tends to recur or spread more quickly, and since it is by far the most common type of bc, a strong emphasis gets placed on the first five years. ILC is usually lumped together with IDC when people generalize about bc treatment, though it probably shouldn't be.

Since ILC tends to grow more slowly, it would make sense to continue taking A/Is indefinitely--or at least until something better comes along..

Per spem vivo.

Dx 9/9/2008, ILC, 2cm, Stage IIb, Grade 1, 3/23 nodes, ER+/PR-, HER2-
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May 3, 2009 05:35PM spar2 wrote:

Bwalker, I am a 5 year 4 month ILC survivor, just had bone scan, pet imaging, and mammogram and I am still cancer free.  We have no expiration time on us.  Please don't be scared, just do what has to be done, do your mastectomy, do your chemo and then live, be happy, and enjoy life.  You can do it.  sending you gentle hugs.

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

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May 3, 2009 07:17PM BWorrier wrote:

Hi, All, thanks!

Hi, Spar2: Congratulations! You must be happy about it huh?

Could you give us detailed info. of your dx? Eg. Grade, Stage, Tumor Size, Lymph nodes, HER2 , age, etc..... That would help us more to understand it.

Thanks!

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May 6, 2009 01:03PM spar2 wrote:

I pm'd you all the details and yes, I am very happy.   Hope all is better with you today and so sorry I typed walker instead of worrier.  A senior moment. LOL  I am a tad nervous about being off of all drugs now but I am not going to worry about it.  I am just going to live my life to the fullest, do Gods will as much as humanly possible and just enoy my family and most of all just be happy.  It is the tude.  Big hugs to you. Sherry

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

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Aug 1, 2009 12:17AM SonOfCancer wrote:

Thankyou all for your input I have really found it helpful,

 I am 19 attending Boston U, my mom told me today that she has ILC breast cancer with a roughly 2 cm tumor in her right breast. It has been somewhat determined that it has spread into the lymph system but there is low miotic activity within the tumor. She does not know if it has spread to other parts of the body yet and her doctors have not provided any further diagnosis.

I was wondering what I have to look forward to in the coming years given different scenarios. You guys have a much better sense of what is going to happen given this preliminary diagnosis. My family lives in CA and I go to school on the other side of the country which is going to make it quite difficult for me to comprehend what my mom is going through. She is only 42 which makes the all the more difficult to comprehend.

Your input is very much appreciated,

-SonOfCancer

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Aug 2, 2009 07:02PM tabby wrote:

Son of Cancer:  What a sweet son you are to be concerned for your mom.  I am a 46 year old mom of three children.  My oldest daughter is married and 23 and the best thing she has done is talk to me about it.  My son is 20 and on a church mission for two years.  We e-mail once a week and he's forever telling me to take it easy and let others help me (he knows me).  My youngest (daughter-15) doesn't want to "see" anything (had masectomies) but she's artistic and made me the sweetest oil pastel piece.  So, do what's right for you.  How it would lift your mom's heart to know you even did this for her!!  Just let her know what she means to you and that you are thinking/praying for her.  She needs your love and I bet you are more than willing to give her that.

Dx 3/4/2009, ILC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Aug 2, 2009 07:56PM bookgirl wrote:

My BC was a combo of ILC and IDC ...not sure what the out come for a combo is. The OC said it is treated as IDC but nicely hormone receptive due to the ILC. So I had 4 X TC and am waiting to find out which meds I will be taking. Anybody else have a mixed BC?

SLH my friend was told she had stage 4 melanoma with liver mets and to get her affairs in order when her son was 2. No treatment. That was 25 years ago, today she jogs several miles a day, and appears NED. Makes me hopeful.

Dx 9/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Aug 2, 2009 08:31PM dlb823 wrote:

bookgirl ~  I had both ILC and IDC. I had multicentric bc with a primary (1 cm) lesion that was mixed lobular & ductal; a 9mm lesion that was lobular+tubular; and two tiny (5mm + 1mm) lobular lesions.  The bc in my lymph node was ductal.  I'm still not sure what to make of it when we have more than one kind of bc, but I tend to think that different factors (family history, HRT, etc.) went into forming each type.   Deanna

"The soul would have no rainbow if the eyes had no tears" Native American proverb

Dx 2/1/2008, 1cm, Stage IIa, Grade 3, 1/16 nodes, ER+/PR+, HER2-Dx 1/3/2014, Stage IV
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Aug 2, 2009 08:53PM SonOfCancer wrote:

Tabby, Thankyou, Your words really touched my heart. I understand my mothers' postion and what she is going through. I have a sister who is 11 and I worry about her more than myself. Its just difficult not to know ... and we had a trip planned for europe in which we leave wednesday and my mom still wants to go, even though we do not have a full Dx. I am opposed b/c I want to know exactly what is goin on before we do anything to get her treated asap. Either way she needs to have peace of mind before we go on any further, and if that means going to Europe for 2 weeks before we start then so be it.

Thanks again,

Sam

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Aug 2, 2009 09:32PM dlb823 wrote:

Sam ~  It might help you to know that most bc's (with a few exceptions) are very slow-growing.  In fact, they say that by the time a lump can be seen on imaging (like a mammogram or ultrasound), it's probably been growing for 10 years.  So, unless her doctors advise otherwise, it's probably a great idea for your family to enjoy that planned European trip before your Mother has to start treatment.

The other thing you might do for your Mother is refer her to this website.  Not only is the informational section very complete, but there are threads here by month for each step of treatment (e.g. Surgery in September 09).  Having other women who are going through the same thing you are to share with makes the journey much easier.

Also -- in case no one's told you, breast cancer that is caught early -- as a high percentage is with today's digital screening equipment -- is highly survivable.  So, even though it's a very scary diagnosis, the chances your Mother will have a very favorable outcome are very high.   

Take care, and tell your Mother she has a place to come and share her fears and concerns with a ton of women who have been exactly where she is now  ~  Deanna 

"The soul would have no rainbow if the eyes had no tears" Native American proverb

Dx 2/1/2008, 1cm, Stage IIa, Grade 3, 1/16 nodes, ER+/PR+, HER2-Dx 1/3/2014, Stage IV