Untreated Survival Rate

RogerTaft

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

muska

What's LBC?

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

Icietla

Untreated, it will proceed to End Stage and Death.

Bosombuddy101

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.

RogerTaft

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.

Cliffyw

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

Moderators

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

Lula73

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

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.

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

Lily55

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.......

RogerTaft

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.

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.

Lily55

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.

Sam2U

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

Cancermath.net

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.

Racy

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.

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?

muska

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

Racy

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

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...

AmyQ

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

Meow13

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.

Meow13

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.

dtad

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.

Icietla

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/

Amelia01

Excellent link, Icietla. Thanks for posting.

Roger : First of all, maybe you divide the "treatments" into their various stages to help find the right solution

1) do nothing at all

2) surgery

3) chemo

4) radiation

5) hormone therapy

6) alternative therapies

7) non invasive lifestyle changes: vitamins, exercise, diet etc

Any and all of these (perhaps with the exception of 7) have risks and potential benefits. No doctor can force any of them on a patient, but they do have a moral and legal obligation to prescribe the best treatment for the hopes of the best outcome (based on clinical studies with proven responses).

Many people speak of being "cured" or NED with only lifestyle changes or with the use of alternative therapies (cannabis oils come to mind). However, as in vitro studies are just that, and not human studies. I wouldn't believe everything I read on the internet without a doubt.

Just my point of view, surgery gets it out but then any therapies can't be measured (now 6 weeks after a mastectomy I'm slated for chemo and radiation and hormone therapy but can't be certain any of them are working unless I remain NED). Other first round therapies can show tumor regression therefore the assurance it is "working". Get second and third opinions if helpful.

On a personal note, losing a breast to me is an inconvenience, what scares me the most is chemo. And yes, I am waffling whether or not to do it. It was prescribed as an "insurance policy".

Best to you and you family -

dtad

Hi everyone....I know this is anecdotal but my dear friend was diagnosed with ILC 5cm with 5 positive lymph nodes about 15 years ago. She has been NED for that long. She had a BMX but refused chemotherapy against her MOs and BS advice. She did take an aromatase inhibitor for 5 years. They definitely did not know that ILC responded better to anti hormone therapy than chemotherapy at that time. Thankfully she made the right decision. just think its is interesting. Good luck to all navigating this complicated disease.

Icietla

ILC was not described until 1941.

http://onlinelibrary.wiley.com/doi/10.1002/cncr.23811/full

Momine

Roger, the biggest contributor to survival, in terms of treatment, is surgery. Adjuvant treatment (chemo, rads and hormone blockers) is "icing" so to speak. There is an online treatment calculator that can tell you how much adjuvant treatment will contribute, in terms of survival, but the calculator assumes that surgery has been performed.

The greater your risk, the greater the benefit of adjuvant treatment. There can be a lot of grey area, when it comes to adjuvant treatment. However, skipping surgery is, in my humble opinion, fool-hardy.