Breast cancer recurs in almost one in four patients....

It's good to talk this out from all the angles, and diversions are natural here. AMP, you put it well.

We all want some control.  Food is one of the very few things we have control over.  But in my case, clearly it wasn't enough.  And the profile of every BC patient I know is quite like me, so my experience doesn't jive with this study.

The medical community is making clearer that "catching it early", "cured" and a lot of standard fare lingo around BC is false.  In fact, some of the latest studies indicate your cancer is what it is genetically, and the rest is beyond modern medicine.  This is why Stage 1 patients go on to develop mets, and Stage IV sometimes stays in remission longer than expected.  Stages are also slowly going out of favor. Guess what?  We don't have any control over the genetics of our particular tumor, and I'm pretty sure cutting back on alcohol isn't going to change that much.

I don't think it's dwelling on the negative to passionately advocate for metastatic cancer patients.  They have been grouped unfairly with early stagers, with all the requisite BS that goes along with it (like if you'd just lived a less stressful life or cut the sugar garbage--I get this from friends all the time). 

faithhope,i think everyone with breast cancer or any cancer or disease that there is little known about should have an option to donate records and info to research.

Researchers are coming out with new blood tests every day that will eliminate the need for biopsies and the waiting. However, the drs dont get access to these items for yrs so of course the previous generation,my mothers' lifetime,had the Halsted method and Clinton had not yet signed the WHA of 1998 forcing insurance to pay for reconstruction. Now we can see a little, there is progress,its just long and slow when you see patients suffer or even expire.

AMP45,

Metastatic Breast Cancer is cruel.   I'm not sure what's cruel about writing a paper over the terrible survival stats of MBC (months) and the high recurrence rate (20+%).    These stats are inline with every other published stats I have ever seen.   Recurrence may mix all stages and subtypes.  But overall the number is pretty consistent. 

Pardon my ignorance, but what does recurrence mean exactly.  Now, if I read the following correctly, if I were to 'recurr' now, two years post treatment, that would mean that treatment (chemo) did not work.  The tumour they would find now, even if it's grade 3, was obviously there and growing prior to treatment but was not detected by the 'machines' back then ??

'Basically, the grade of the tumor determines the speed at which it grows. So, for an aggressive tumor (grade 3, see pg. 93), it will take approximately 6 years for the tumor to grow from the first invasive cell to two centimeters. For an intermediate grade tumor (grade 2, see pg. 93), it will take roughly 14 years for a tumor to grow from the first invasive cell to two centimeters and for a low grade (grade 1 tumor, see pg. 94) it will take about 19 years - from first invasive cell to two centimeters. And years before it becomes an invasive tumor it is DCIS, non invasive breast cancer.'

Did the medical community come up with this fancy term 'recurrence' to throw dust in our eyes ?

Apologies if I'm not being very clear, my brain is mush right now 

Great questions Maud,

Here's my understanding from the perspective of a breast cancer.   Say I am a cancer cell.  Before I end up killing my host, I need to do a take-home exam with 3 questions correctly:

a.   How can I grow aggressively and survive and be big?

b.   How can I send my descendants to travel to another site?

c.   How can I or my descendents set up shop at the distant site?

I and my descendents can answer this exam in any order we want to.   We answer questions correctly by constantly mutating (guessing blind)  till one of us (call it M) get all three questions correctly.   That M would be the metastasis at a distant site.   Clonal selection is like the teacher, would give us little hints, so we know we are on the right track so we get all three questions correctly. 

Recurrence means M is picked up by radiology scan, which is only sensitive down to a certain size.   It could be local/regional/distant.   They carry different prognosis.  

Some people's cancer answered question in this order:  a)  first, bc or cb).  But before they got to the next question, the cancers became detectable and killed/removed.   These people are truly cured.   

Some people's cancer answered question in this order:  b) a) c) or c) a) b),  the primaries were killed removed after b) a), but there could still daughter cancer cells floating around with their own copies of the exam (with b or a worked out by their moms), working on the question c).   After years and years, some of these cancer cells figure out the complete exam and kill their host.

Other people's cancer answered question in the c) b) a) order or b) c) a) order.   By the time their cancer is detectable, there are already lots of daughter cancers who had figured out every question in this exam, often everywhere.    These people are the stage IVers on the onset.   

The 6-16 years you are talking about is assuming a model.  ie, they assume the cancer is answering the question a) in a certain way, then try to model and guess how long these cancers take to grow to a certain size.    That's why breast cancer almost never afflict a 13 year old for example.    6 month is enough for an aggressive cancer to grow from radiologically nondetectable to radiological detectable.   Nor is the speed of growth constant, doubling every few months is only a model.

Anyhow, this is more or less my understanding.  Hope it helps.  I am trying to frighten or be cruel.   I just think that patients can do a lot more than sit around in blissful secure ignorance.   

Thanks a lot Wally and Jen for understanding my question  and for your thorough explanations (I'll have to reread them tomorrow with a refreshed brain).

My concern is the fact that yes, they did find this 2 cm tumor in my left breast. Then, surgery, chemo, rads, tamox all supposed to take care of the problem right ?  Especially chemo, we're told kills all cancer.  But, it didn't, because hypothetically (touch wood) I 'recurred'.  The chemo did not kill the other cancer cells in my body because two years post treatment, another tumour is found. So, instead of the medical community telling you that chemo did not work, they call it a recurrence which I find somehow misleading. 

ETA - unless like you say Rio, the recurrence is a very agressive tumour - is it always the case ? or are some 'recurrences' grade 1 ? 

I'm beginning to wonder if I'm making any sense.  After having an hallucinating event this week, not sure I can trust my brain 

Jenrio... Beesie.... blessings20... LtotheK...  thank you...

My sister and I each were diagnosed with bc over time. Neither of us have "recurred" for over 10 years. My sister, however, has had a new dx with a different bc (IBC), although with that as well she has been the "exception", atypical, several years out and no recurrence of either type of bc.

I share Beesie's perspective about how i personally look at "knowing" what there is to know. My sister does not, and is simply terrified by it. To each their own. If she does well or badly because she wants to avoid thinking about it, that is part of her decision-making process and her choice.

At the same time, I'm 100% with jenrio about actually making a difference. If you are not part of the solution you are part of the problem. Whether you want to keep your head in the sand or digest as much info about it as possible, each of us can still make the effort to participate in the discovery of possible ways to reduce the recurrence rate for everyone. Get involved in whatever clinical trial you think might be worthwhile.

At this point I've been part of 3 different ones. It IS more difficult to do them as an Alaskan because of the frequent requirement for on-site participation. It annoys me to be told that because I am now 10 years out, I'm not eligible for some of them, but there is some rationale to that limitation so I keep looking for trials I may be eligible for.

A.A.

If you are not part of the solution you are part of the problem. Whether you want to keep your head in the sand or digest as much info about it as possible, each of us can still make the effort to participate in the discovery of possible ways to reduce the recurrence rate for everyone. Get involved in whatever clinical trial you think might be worthwhile.

Beesie explained the difference between recurrence and new primaries well.   To definitively tell them apart, you need full sequencing of the DNA of 2 tumors and work out the probability of each mutation.   The technology was too expensive (100k) even 5 years ago.  Today the same technology is around 10k.   In a few years it may be $1000.    That would be the time when we can understand our tumors a lot better than today (each with dozens of mutation that makes difference, thousands of mutations that may not make difference).   That is why, investment in genomic technology, fundamental science and translational science is very important and should not slack off due to budget cuts or any other objections.   Yes, I'm talking about stem cell research and animal research.    If people has moral objections, they should know advances in modern medicine is almost always based on animal research, and they can opt out if they like.

Current stagfing system is based on 30+ year old pathology which uses lymph node pathology to check whether tumor probably answered question b).   The 5 year MBC survival rate has improved in the last 30 years (<5% to 30%), but it is still abysmal compared to many other conditions.

But the puzzle of cancer is slowly coming together, thousands of mutations/proteins/epigenetic changes, a lot of scientists are investing their prime years in figuring out small pieces of the puzzle.    I am pretty sure there would be a cure, even multiple cures.   Researchers having an Aha moment connecting the dots (refer to the AIDS patient, ah you need to even check out my blog).   But to know that these cure work, they need money, clinical trials, and they need patients.

The best clinical trial patients are the people newly diagnosed.   Neoadjuvant clinical trials allow doctors to see quickly whether some drugs work or not in shrinking the tumor.   Check out Ispy-2 clinical trial.   It speed up the clinical trial process enormously.   I was never told these trials when I got dxed.   Of course due to special circumstances I wouldn't be qualified anyway.   But I hope newly diagnosed people know that neoadjuvant clinical trials are minimal commitment (a few cycles), and usually include standard treatment, so they are getting the standard treatment in addition to new experimental drugs.

The other clinical trial patients are medium stagers who completed optimal treatment.   The best thing these patients can do, is to stick to the trial regimen of their choice and share their stories.    These patients often benefit because they get more follow-ups, more scans in addition to the latest and best early stage drugs.   

Late stagers participate in a lot of clinical trials traditionally.   They also share a lot of information on the stage IV forum. Some are too busy fighting their own battle to advocate their interest.     I'm just trying to pay my debt during the last few months, when I had no idea whether I was stage IV or not and learned a lot from them.   

But any stagers can donate their tumor samples/medical records any time.  And anybody and her aunts/uncles can donate to their local university research department and sign a petition or two:

http://www.breastcancerdeadline2020.org/act/Presidential-Petition.html 

Back to Maud's question.  It's a great question and answer won't make you happy.   So don't read the rest of my post.   This is a clinical trial forum, so I'll deliver this ugly truth.

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Recurrence tend to increase in grade (thanks to clonal selection), Recurrence may have different receptors characteristics.  The best chemos have been moved to adjuvant therapy during the early stages of the disease, so recurred tumor may be chemo-resistant, hormonal-resistant, Herceptin-resisant (thanks to clonal selection).   In other words, recurred stage IVers may have worse prognosis than stage IVers from the get-go (the chemo-naive patients).

That's why "prevention" and "cure" lingo for early stagers bugs me so much.     It's an expensive dead-end and deadly.    The only true cure for BC is a cure for MBC.   And the cure for MBC receives so little funding and attention it's laughable.

A.A. I totally agree about being protected and shielded and not informed and offered the minimum education on our particular cancer.  I've been very confident because I've been told I'm cured, but as I get educated thanks to a lot of ladies here, I'm learning an awful lot.  It has been a very steep learning curve and no doubt will continue to be.  Beesie wrote it black on white for me and I thank her for that. And I hope a lot of ladies here read her post, as I have no doubt that a lot of them were not given the time of day either. It was much more elegant than the interaction I had with my BS yesterday.  I told him: "I do not want to get breast cancer again" and he replied: "you also want to win the lottery?" and I said 'YES' and his final retort was: 'Well, it's not gonna happen'.  Needless to say, those words came back to haunt me last night and still do, until I figure out what the hell he knows that he's not telling me 

Jen, looks like part of your message did not copy well ? Thanks again for the info.  Here's something I recently found:

"Tools such as the 70-gene profile separate tumors into low and high risk for recurrence, and help identify women with a low risk for recurrence in the first 5 years after diagnosis, in the absence of any systemic therapy. Importantly, there is the potential to use this tool to define an "ultra-low" risk threshold that might correspond to what has been termed IDLE (InDolent Lesions of Epithelial origin) tumors, which are tumors not destined to progress to metastatic disease.[1]

A study from the RASTER (MicroarRAy PrognoSTics in Breast CancER) screened cohort in the Netherlands, in which almost all tumors were molecularly profiled, suggests that the frequency of extremely-low-risk tumors may be as high as 30% of screen-detected cancers.[2]

The authors recognize the potential problem of overdiagnosis, but they doubt that it is truly a significant problem or that we have the capacity to discriminate indolent from more lethal tumors. I would submit that we have that capacity and need to put the effort into validating predictors already on the market or which are emerging as commercial tests. Importantly, we need to recognize that with age, the likelihood of finding a low-risk tumor increases dramatically, which is why screening and early detection may not make much difference in women over the age of 75, even if they do not have significant comorbidities.

THE SCIENTIFIC COMMUNITY MUST NOW STEP UP TO THE PLATE TO DETERMINE A BETTER DEFINITION OF CANCER -not just one based on the presence of what appear to be cancerous cells based on a light microscopy evaluation but one based on likelihood of invasive or metastatic spread-and the time course for that risk. This type of approach will now be a major focus of activity for the National Cancer Institute, and it will improve screening by enabling radiologists to focus on detecting those lesions that truly have the potential for harm, thereby avoiding the anxiety, morbidity, and cost associated with biopsies that turn out to be either benign or of uncertain malignant potential over many years"

http://www.cancernetwork.com/breast-cancer/content/article/10165/2065552

I really wish I had my tumour mapped out by this test and have those results TODAY to work with, as long as my providers were honest with me though .....

"The best chemos have been moved to adjuvant therapy during the early stages of the disease, so recurred tumor may be chemo-resistant, hormonal-resistant, Herceptin-resisant (thanks to clonal selection).   In other words, recurred stage IVers may have worse prognosis than stage IVers from the get-go (the chemo-naive patients)."

Maybe it is just too easy to sell overkill treatments to early stage patients that the vast majority of early stage bc patients do not benefit from, which instead serve primarily to worsen the outcomes for recurred stage IVers. That kind of critical thinking goes against the grain of those most vulnerable to the "fear factor", because hitting it hard right off the bat provides so much psychological comfort in the belief that one has done "all that they could".

I have never considered myself cured.

Maybe each newbie should have an appointment specifically to meet volunteering patients who actively participate in clinical trials, and be given an approved handout that provides specific information about accessing the process of considering participation in trials.

A.A.

I at initial Dx would have loved to have a patient volunteer who can show me the ropes...  But the learning curve is steep and emotions ran high at that time for the newly Dxed.   I remember one member mentioning her doc (on stage IV) told her the prognosis of a few years, and many other members chiming in to say: "How could he say that!   He should lose his license etc. etc."    So oncos, to make their own lives easier and also hoping to make the patients relax and give patients hope, often resort to avoiding the questions or half-truths.    Even for earlier stagers, cancer dx is a hard news to deliver.    No, I don't want to force oncos to do extras like clinical trial explanations,  you are right, patient volunteer may be better suited for this purpose.

And don't get me wrong.   Adjuvant chemo/hormone/herceptin for early stagers do really save lives and increase survival.   But the problem remains:  as long as MBC has no cure,  for significantly number of early stagers, adjuvant therapy = kicking the can down the road + a potential cost in therapy resistance

Maud, don't worry too much.   Each just does what she can/likes/chooses.   There will be a cure (cures), it may already be here, but someone needs the time/confidence to prove to the world and she needs patients/activists/money to help.     Even if the cure is not perfect yet, the pieces of puzzle is being worked out by many people, the cure requires a lot of tweaking or experimentation.    

Cancer works hard.  But so do we.  

Alice,

This study tracks only up to 2002 for a reason: it tracks 10 years and we are in 2012.   So it is already as up-to-date as it can possibly be.

You may interpret stats anyway you like.   Just that 20% is not trivial.   Decimate means 10% death risk, playing russian roulette means 17% death risk, giving birth in Afghanistan means <10% death risk /delivery.   Respect for life begins by respecting truth and facing the problem.    

You happen to have a ER-/PR+ tumor, it's rare, 1-10%.  Depending on your age, you may have 1/10000 type of breast cancer.   Please consider contacting researcher with your medical records/tumor sample.   I'm curious what they'd make out of it.

Ummm, I feel like Cato the Elder.   Will end all my tirades with "Metastatic Cancer must be cured" :-) 

Letlet and Alice,

Good luck looking for your cancer twin!     Maybe moderators should open a new forum for you gals?    Did your onc recommend megace+Herceptin or anything else?

ER-PR+ cancers are rare enough that most phase III trials got only a few of you and most oncos only seen a few of you in their lifetimes, of different stages, much less have any idea how to best treat you for your particular stage/grade.   Hope you find someone who focus in this subtype and can tell you more.