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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Untreated Survival Rate

Topic: Untreated Survival Rate

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

Posted on: Sep 11, 2017 04:20PM - edited Sep 11, 2017 04:21PM by RogerTaft

RogerTaft wrote:

What is the survival rate for Stage 2 LBC if it is *not* treated?

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Sep 11, 2017 05:36PM - edited Sep 11, 2017 05:36PM by muska

What's LBC?

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
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Sep 11, 2017 07:17PM - edited Sep 11, 2017 10:18PM by Mojojennijo


I don't know the answer to the question. I am sorry. I'm wondering if someone here can answer that?

Do you mean no treatment at all? Such as just leaving it to grow and spread? Or are you talking non traditional treatments

Dx 8/29/2017, ILC, Left, 6cm+, Stage IIB, ER+/PR+, HER2+ Chemotherapy 9/27/2017 AC Targeted Therapy 11/20/2017 Perjeta (pertuzumab) Targeted Therapy 11/20/2017 Herceptin (trastuzumab) Chemotherapy 11/20/2017 Taxol (paclitaxel)
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Sep 11, 2017 07:27PM - edited Sep 11, 2017 07:27PM by Icietla

Untreated, it will proceed to End Stage and Death.

Dx 2/12/2016, ILC, Right, 2cm, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal
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Sep 11, 2017 09:21PM Bosombuddy101 wrote:

Hmmm... I don't think there would be stats for untreated breast cancer or any cancer for that matter because it would be unethical. Doctors are not allowed to conduct a study where the control group is untreated. I know a few people who found their cancers late and they didn't live very long. They were placed in palliative care and given medicine to ease their pain and suffering until they died.

“Trouble that can’t be named, tigers waiting to be tamed” ----Coldplay Dx 7/4/2017, IDC: Mucinous, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/20/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 8/31/2017 Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 12, 2017 11:09PM RogerTaft wrote:

Yes, no treatment at all. The five-year survival rate is 85% with treatment. If the corresponding survival rate with treatment only goes down a little, say to 70%, then no treatment is of interest. If the rate goes down a lot, say to 30%, then treatment makes sense.

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Sep 12, 2017 11:49PM Cliffyw wrote:

I'd agree with what bosombuddy said that there may not be stats since no doctor would ever perform such a study. However, even if your example were accurate (85% and 70%) that is only over 5 years which I get slightly frustrated with. I'd like more studies with 10, 15, 20 years. Of course that gets more difficult with older cohorts of patients.

One common way of analying it however is using what are called hazard rates. For example, if the survival rate for 1 year is 90%, the survival rate for 2 years is 81% assuming constant hazard rate (.9 *.9). In your example, assuming constant hazard rates, the 10 year survival would be 72% (.85*.85) with treatment and 49% without. The longer you go the more important it becomes. If your goal is only short term, then it matters less
Husband. Wife diagnosed at 44. Although 0 lymph nodes were clinically positive, 4 contained ITC Dx 8/2/2017, ILC, Left, 5cm, Stage IIB, Grade 2, 0/5 nodes, ER+/PR+, HER2- (IHC) Surgery 8/23/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 13, 2017 10:28AM Moderators wrote:

RogerTaft, this is probably a question that your diagnostic physician could answer. Also we aren't sure what you mean by LBC. Do you mean IBC, or LCIS? You may want to read here to make sure you understand the diagnosis, and then talk with a medical professional as you consider options.

Types of breast cancer


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 13, 2017 12:13PM Lula73 wrote:

I would think there might be some observational retrospective data out there about survival rates without treatment. The subjects would be those patients who chose to do nothing - no ethics violations in following them. And somewhere they've had to compare chemo, rads, lumpectomy and mx by themselves and in various combinations to placebo to prove that the treatment has better outcomes vs doing nothing/doing 1 treatment option/doing whatever combination of treatment options. Otherwise we wouldn't have the survival rate data to start with. The question is where to find it

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Sep 13, 2017 03:42PM - edited Sep 13, 2017 03:47PM by Icietla

Lula73, there is such a study, published in a respectable medical journal, covering 129 years of those entirely untreated cases, comparing interval mortality rates by cell grade. [The Original Poster seems to want statistics for Stage II Lobular type, though.] Understand, since the time of World War One, there have been fairly few cases known to have had no treatment whatsoever. Now all or nearly all breast cancer patients who refuse prompt treatment request treatment later.

Persons are not mere statistics.

There is a great deal of difference between (otherwise) healthy survival and survival with untreated advancing breast cancer.

This thread is disturbing to me.

Dx 2/12/2016, ILC, Right, 2cm, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal
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Sep 13, 2017 04:48PM - edited Sep 13, 2017 05:07PM by Lula73

I agree about it being disturbing lcietla. However with the push for people to take some control in their healthcare we are seeing many people opt for no treatment. When I hear the statistics I want to know about survival rates related only to BC. If someone passed away in a car accident within those 5 years that the researchers are looking at I'm very sorry they passed away but that persons death shouldn't be in the stats (IMO). And at the end of the day, there are always many wonderful people who get the short end of the stats no matter what. Working toward a successful treatment/cure that doesn't decimate quality of life for those brave souls is what we need

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Sep 13, 2017 06:50PM Lily55 wrote:

I welcome this thread as we all need to be active participants in our own lives...........I think you are talking about Stage 2 lobular cáncer Roger?. Lobular is normally grade 2 when diagnosed but we do need to know more info to give any kind of answer including why the option of no treatment is of interest?  Or are you talking about no conventional treatment Roger?  

I refused chemo and am constantly reminded of it, it is oncluded on EVERY single medical report I get even for totally unrelated conditions, "patient had breast cáncer and refused chemo", like its a badge of shame!!  I have done some conventional and some natural approaches and over hauled my life, stress and diet, although after 5 years I am a bit lax on the latter.......


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)
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Sep 13, 2017 10:50PM RogerTaft wrote:

The question is for Invasive lobular carcinoma, stage 2. Before proceeding with surgery followed by this and that, we want to know the benefits. The literature quotes an 85% five-year survival rate (with no qualification as to quality of life). We want to know the survival rate with no treatment. I am not suggesting that experiments be done to measure it. I am hoping that existing data contains the information and that it has be teased out and published.

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Sep 14, 2017 06:10AM - edited Sep 14, 2017 07:03AM by Icietla

I do not expect it would be available.

I do not know for how long has been made (or known) the histopathology distinction between Lobular breast cancer and Ductal breast cancer -- do you? I seriously doubt that I would need more fingers to count the decades.

By my calculations, ILC cases are about seven percent of the breast cancer cases. At the present incidence rate, in most of the World, about one in eight women will be afflicted with invasive breast cancer. Thirty years ago, about one in twelve women. Sixty years ago, about one in twenty-five women. See where this is going? Yes, back to when (necessarily unspecified) breast cancer would have been less common, and most of the population was out on the farms or in the wilderness with no access to medical care -- and alcohol was the only medicine most people could ever have or ever even fairly hope to have. Most of them could not write (except to write only their own personal marks), so we do not have so much primary information relating to their experiences of untreated breast cancer. From letters we have accounts of the disease experience of Abigail Adams Smith and of Frances Burney, as well as detailed accounts of them being mastectomized without anesthesia. It stands to reason that they preferred that treatment over certain death from untreated breast cancer.

Again: Understand, since the time of World War One, there have been fairly few cases known to have had no treatment whatsoever. Now all or nearly all breast cancer patients who refuse prompt treatment request treatment later.

--------

"Before proceeding with surgery followed by this and that, we want to know the benefits."

How about that she could avoid being crushed by a hundred-plus pounds of stinking open tumors in and all over her upper trunk? I would consider avoidance of that condition an appreciable benefit.

Dx 2/12/2016, ILC, Right, 2cm, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal
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Sep 14, 2017 08:12AM Lily55 wrote:

Roger I don´t think you are going to find the information you need but based on my experience given all I know now I would have done hormone therapy first.....before surgery.......unfortunately you can only make decisions that are right for you, as none of us know where in the statistics we will fall........I am 5.5 years out now, with no chemo, and I have no regrets.  The problem is a lot of places put IDC and ILC in together on prognosis indicators.......and ILC does behave VERY differently as those of us who have HAD it know.


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)
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Sep 14, 2017 08:23AM Sam2U wrote:

Not exactly what you are looking for, but this calculator shows the effects of cancer with and without therapy on life expectancy:

Cancermath.net

Dx 10/9/2013, ER+/PR+, HER2- Dx 10/25/2013, ER+/PR+, HER2- Surgery 11/11/2013 Lymph node removal: Left, Sentinel Surgery 12/12/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 12/23/2013, ILC, Left, 6cm+, Stage IIIA, Grade 2, 2/40 nodes, ER+/PR+, HER2- Chemotherapy 1/15/2014 AC Chemotherapy 3/17/2014 Taxol (paclitaxel) Radiation Therapy 6/16/2014 Breast, Lymph nodes Hormonal Therapy 8/8/2014
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Sep 14, 2017 10:55AM - edited Sep 14, 2017 11:03AM by Icietla

The CancerMath calculator assumes (observed outcomes with) customary surgical treatment (and of course, radiation treatment goes with much of the surgical treatment done for ILC). See the FAQ section for more on its limitations.

Dx 2/12/2016, ILC, Right, 2cm, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal
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Sep 14, 2017 06:33PM Racy wrote:

There are many survivors of ILC beyond 5 years on this site. I am a 7 years survivor and there is one lady at least 13 years post diagnosis.

We all did conventional treatment and are doing well. There is a specific topic you can search for on ILC survivors.

Even those who refused chemo, radiation or hormone therapy at least had surgery to remove the tumour.

The cancer doctors are smart and want patients to be cured. That is why they recommend treatments. There is an enormous amount of ongoing research about medical interventions to continue to improve treatments.


Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Sep 14, 2017 07:04PM - edited Sep 14, 2017 07:10PM by Bosombuddy101

I can't imagine anyone who wouldn't want surgical removal of their cancer ASAP. Certainly the first thing to do is get it out and then mull over treatments. Personally, I couldn't function or sleep knowing there was cancer invading my breast tissue and God forbid, metastasizing. Even now, it's still very stressful. Is it your wife that has been diagnosed or you?

“Trouble that can’t be named, tigers waiting to be tamed” ----Coldplay Dx 7/4/2017, IDC: Mucinous, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/20/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 8/31/2017 Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 14, 2017 07:43PM muska wrote:

Roger, I think some information might be available in very old medical accounts that predate modern treatments. After BC gets metastatic I think it kills within months if not treated and those months are horrible. I think might take it several years to get to that point though so I expect 5 year survival from diagnosis to be relatively high if diagnosed early, type is not very aggressive and left untreated. But invasive BC will metastasize if left untreated unless you die sooner from something else

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
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Sep 15, 2017 06:53AM Racy wrote:

There is actually a lot of information available on this topic just by googling. The odds are strongly in favour of conventional treatment.

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Sep 15, 2017 05:46PM - edited Sep 15, 2017 05:50PM by Theresanne

I just saw a medical journal article that for early stage ILC....adjuvant chemotherapy does not improve overall survival....something to discuss with your oncologist...hormonal therapies may be as effective. I was st 2a, no nodes, but three small tumors,(<1 cm) so my my oncologist recommended treatment...2012...this article was just published. I had TAC chemo, mastectomy, prophylactic mastectomy other breast, then on letrozole for 10 yrs....but drs recommended no radiation...said it was overkill. Gee...I worry now not only about surviving breast cancer but will the chemo cause another cancer....never ends...

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Sep 15, 2017 05:53PM AmyQ wrote:

I was thinking just this morning about our so-called anniversary dates and how they relate to our survival, which is marked in terms of years, usually. I was dx February 2013 De Novo but in reality, I've had cancer first in my breast and then spread to my bones many many years before being diagnosed. So I wonder if researchers take into account, how long we've actually had cancer and not just when it was discovered. That could mean I've had it for over 10 years or more and have actually survived 10+ years already.

Just a thought -

Amy

Dx 2/7/2013, IDC, 1cm, Stage IV, Grade 2, 2/3 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/19/2013 Femara (letrozole) Radiation Therapy 11/25/2015 External: Bone Hormonal Therapy 1/10/2016 Faslodex (fulvestrant)
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Sep 16, 2017 04:34AM Meow13 wrote:

Lily, I did not realise you also got that black mark. I was shocked too, when my surgeon wrote notes all over my medical reports refused recommended chemo. I felt that same sense of shame but he probably was protecting his reputation. There probably is a shining point in my oncologist reports as well. Everytime I go in I see the pr less than 1% boldly on my record.

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Sep 16, 2017 04:39AM Meow13 wrote:

I also agree with others on at a minimum getting the tumor out. I couldn't rest until mine were removed. I was afriad every second that they would grow and get out of the breast to a vital area.

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Sep 16, 2017 07:54AM dtad wrote:

Hi everyone...I have decided to refuse anti hormone therapy for many reasons. However that decision is what led me to decide on the most aggressive surgery. That being a BMX. Good luck to all.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 15, 2017 07:19PM Icietla wrote:

1930s – 1950s
Classification of breast cancer introduced, enabling the planning of more rational treatment tailored to the individual.

http://canceratlas.cancer.org/history-cancer/20th-century/

Dx 2/12/2016, ILC, Right, 2cm, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal

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