Will 30% of Early Stage (1-IIIA) go on to metastasize??
Comments
-
Why do they still have Run For the Cure races all over the world if there is a cure for breast cancer? I'd LOVE to know that cure so I can stop Arimidex (joint pain and bladder infection!) and not even start rads. Please, please, tell me the cure!
I just had surgery. No tamoxifen, rads or chemo.
By the way, for those of you banking on the oncotype score, please tell me you DO know that the number is based on you taking tamoxifen for at least 5 years......right? And now, gee, they're pushing for 10 years! Why? Because no one was "cured", that's why.
Remember that word remission you used to hear all the time. Notice how you do NOT hear it about breast cancer? That's because we are just NED. Until we're not.
This site is not to blow smoke up anyones' butt, but to make sure women stay vigilant and watch for symptoms. It ain't over yet, ladies.
0 -
...and gents.
0 -
There’s a “Race for the Cure” because regardless of whether we say “cure,” “remission,” or “NED” after treatment of stages I-III, we can all agree that Stage IV has no cure...yet. It can be chronic, and manageable for a long, long time (a friend’s wife was initially dx Stage IV a dozen years ago and is thus far NED), but it cannot be “cured.” We all need to let the public know that all the “awareness," BSEs and mammograms in the world will not make a lick of difference when it comes to Stage IV. Only money---exponentially more than is currently being spent--and the more extensive research on which it’s spent, will bring us closer to a “cure” for Stage IV. You don’t often hear the word “remission” used (except by laymen and non-oncology docs) for early-stage patients who’ve completed initial treatment, because there’s usually no search for “evidence of disease” unless symptoms appear--such as a new lump, discharge, bone pain not attributable to adjuvant treatment, cough, headache/vision/hearing/balance problems, or lung or abdominal pain. I say “usually” because some MOs will do routine followup scans or blood tests for tumor markers periodically after adjuvant treatment of some types of bc, but most don’t--especially for early-stage node-neg. Luminal A. For most of us early-stage Luminal A'ers, we can’t truly be called “cured” until we live out our statistically normal non-cancer actuarial-table lifespan and die of something unrelated--but anywhere from 70-95% of us do. We just can’t find out if we’ll fall into that category until we’re dead (unless there really is a sentient afterlife).
0 -
It depends on what definition of "cured" you are using. My Grandma had breast cancer in her early 60s and died of old age 30 years later. I'd call her cured, and for human purposes, she was. When we say Race for the Cure, we're talking about a different kind of cure - the kind where we can take nearly any patient, treat them, and know today that they will be fine. No waiting until you're 92 to find out if it worked.
0 -
Cure denotes something that you don't have to worry or think about coming back. There is no cure for any cancer.
0 -
My BS said that once you have cancer you always have the chance of it coming back. In my case my genetic mutation also gives me up to a 30% chance of a new breast cancer. On the other hand, my dear departed sister lived for 30 + years without a recurrence but died an early death from something else at age 56.
0 -
barbe1958, let me first say how sorry I am that you've had a recurrence, and that it's a late-stage recurrence. It sounds like there are lots of things going on with you that certainly point to something more than a localized recurrence. My points were not to argue your diagnosis; in fact, I would agree that if your doctors are telling you it's advanced stage, then that is what it is. Just as my doctors are telling me that my local recurrence is not advanced stage - and I trust the MOs from both my local center and UofM.
And I think that's where KBee's words ring true for me - it's about terminology, and it seems there are differeing opinions on this topic. My words were meant to clarify - based on the information I have at my disposal - that local recurrence isn't always late stage. I hate the confusion - I wish it were very black-and-white instead of the myriad shades of grey we always seem to run into with this diagnosis. Even our highly-esteemed professionals can't always agree on what's what. It can be maddening.
0 -
I'm not living my life thinking/waiting for the other shoe to drop. But to people not in the know like us in the trenches, to say we are cured after so many years NED or death from something else leads folks to believe there is a cure, and there isn't. We are better at knowing better with the different terminology that gets tossed around and the analysis of it, but regular Jane on the street wouldn't know and I sure don't want her to think there is a cure cuz really, there isn't.
0 -
Part of the discussion of what is cure or what is NED is semantic, part is ones own point of view. It is, of course, clear that there is no 100%,guaranteed cure. However, it is equally clear to me, that some people are indeed cured. In my mind, at least with respect to bc, we just don't why this is true of some people nor can we predict who those people will be.0
-
Farmerlucy, you hit the nail on the head. I was diagnosed with PTSD only just yesterday. I have been through lumpectomy & re-excision (with attendant complications), chemo (which included a bout of sepsis), and BMX (with even worse complications.) IPS's best estimate is that it might be fully healed by sometime early June. June! I had the f*ing BMX Feb 4~!
Yeah, you bet I've got some PTSD...I try not to think too far into the future because it makes me anxious. It's a wonder we don't all have PTSD, considering the treatments we have to undergo.
0 -
Great discussion ladies and GENT. I'm on the side of NED. I'm not cured. I will never be cured unless there's a new scientific discovery that doesn't appear to be on the horizon. I can live with NED even though sometimes it's scary. Especially when I see people like Barbe come up with "progression". Or we can just stick our heads in the sand, since Artista nailed it - there is no cure.
0 -
Artista there is no "known" cure. Some of us are cured. We just don't know who.
0 -
With my neo-adjuvant chemo going well and the tumor shrinking by the week, I naively quipped to my oncologist that I was cured. "No", she said, "understand that a 1cm tutor hosts one billion cancer cells and not until we get very cancer cell in your body would that be the case." Since then I've learned that this is pretty well mission impossible, so I'm quite comfortable with NED. When you think of it, we're NED for other potential diseases lurking in our systems, too. One thing's for sure, treatments today are so much different than 55 years ago when my mum, diagnosed at age 38, died just two years later, after the then rudimentary treatment of radical surgery and intense radiation. With no chemo and no hormone blockers, she she had no chance. Fortunately, today, most of us will die with the disease, rather than of it.
0 -
I agree with NED and not cured as there would be no recurrence with cured. I know I still have PTSD issues every spring for my yearly mammogram. My IDC could not be felt upon physical exam but was eventually caught on a mammogram deep against the chest wall. No one thought to order a US or MRI back when I had dense breasts and I was too ignorant to inquire. Then I was put though hell with my lung nodule biopsy. Next a pancreatic cyst was discovered on US for a diverticulitis attack. For the past 5 years, I've had yearly MRIs to monitor with no change as it is too small to biopsy or remove without complications. I just cancelled the scan for this year as I cannot handle this yearly stress. Last summer was Lyme dx with elevated liver enzymes. I had to clearly point my GP to my Lyme symptoms and not go off ordering scans. My MO is very passive and lets my GP monitor me except for the Prolia injections. I don't know what normal is anymore.....
0 -
Nancy, no need to apologize!!! This is a great forum where we give all aspects of this journey. I am just bitter right now as my initial diagnosis was undertreated to my knowledge. My new cancer isn't growing in a breast as I don't have any.
Arista, good point about not allowing people to think there IS a cure!
I was told to "save the big guns until next time" after my initial diagnosis, so no, I don't believe all early-stage breast cancer is treated to cure. Otherwise I wouldn't still be on this forum after 7 years!
I had 4 breast biopsies over 30 years before it was finally cancer. Then, since my DMX I've had another 5 biopsies!! I've had many scans - CT, bone and ultrasounds over the years which always brings the fear of recurrence to the surface. I feel like I've been the happiest DMX patient around and a lot of people are surprised that I've dealt with breast cancer. I go flat totally and wonder how they didn't notice - but I still walk around like I've got the best two out there.
0 -
barbe1958 you are the 2nd person I know that wasn't given hormone suppression therapy, who was hormone positve and recurred. My other friend survived a total of 21 years. She recurred after 6. She too felt they messed up and she should have been given Tamoxifen.
I know I would be very
0 -
Before I had been diagnosed with BC I was walking around thinking I had no risk, but I did. If you look at my diagnosis you will see that its not the most favorable one and in the early days after my dx I wallowed in the statistics.
Two and a half years later, after a second dx of DCIS and all treatment and recon over, I have no evidence of disease and I feel I am working my way back to having a risk level that I had before and that the non diagnosed have. So I don't feel that my diagnosis is a life long sentence of worry. All these stats mean nothing - I am either going to escape reoccurrence or not. For me its 0% or 100%. Worrying is not going to change anything. My lifestyle choices might have some impact - but I'm not going to beat myself up if I don't live a perfect life.
When I was pregnant with my first son, I had an Amniocenteses, and on receiving the result that no abnormalities were found I was briefly consoled, but then realised that this did not mean nothing else would happen to him whilst I was pregnant or for the rest of his life. He's now a healthy 19 year old college student and I now know that worry is not going to protect him, only sensible choices and luck.
We forget there are other things that could happen to us, and that life is one big risk, and should not be lived in fear.
I wish everyone successful treatments and a long life.
Sarah
x
0 -
I'm glad we all can share our experiences, different views and even the need to vent with each other. Someone's specific journey and issues and how they cope is very helpful - thank you.
0 -
I have been following this thread since the beginning and find all the comments interesting. I, for one, am not offended by the term "Race For the Cure". To me, this signifies running for/toward something that does not yet exist. Semantics, I guess. I have had several doctors use the "C" word or another form of it like "cancer free". I always correct them in as gentle a way possible. The last thing I need is a medical professional who thinks there is a cure for cancer. Worries me that they will stop looking for one if they are in denial.
MsP
0 -
^^^^^ Good point. I didn't think about docs/MOs saying you are cured and causing them to step back from you. It's more than semantics. Wording is important when it comes from your provider of care. If they feel you are cured then they likely won't be on top of you as much as if they think you are NED. Thankfully my MO never uses the word cured as she says, there is no cure.
0 -
MsPharoah, we aren't offended by the words Race for the Cure. We are acknowledging that there isn't a cure!
Iago, I would be thrilled to live another 15 years!!!
0 -
You know. I've been a nurse for 39 years and you could have put my knowledge of BC in a thimble. My own sister had DCIS, lumectomy, rads, and AI and I still didn't understand that BC is a different animal in every person. Although I am very knowledgeable about my own breast cancer, i must admit that I don't fully get others. And that's okay. I don't have to be fully comprehensive about it. If there is a recurrence later, then there is. I will deal with it and make myself knowledgeable all over again
0 -
barbe1958 You have a chance of living more. They are discovering new stuff all the time. Wish they would find a cure but one thing I see for sure. Drug companies seem to find new drugs for metavivors to live longer lives.
BTW the person I'm talking about is Marybe. I met her first on this forum. She came to Chicago a couple of times so a group of us met her for dinner both times.
0 -
Even tho progress has been made in the treatment of breast cancer, 40,000 women every year and about 500 men every year in the U.S. die from breast cancer. Even adjusting for population increase, that is still too many deaths. That means approximately 110 (mostly) women die every day from breast cancer. These are moms, daughters, grandmothers, aunts, sisters neighbors and best friends.
Are the majority of the 110 women every day who die of breast cancer ones who were diagnosed stage iv from the start? It doesn't seem that would be the case when only a small percentage, 6 to 10% of women are stage iv from their initial diagnosis. (This statistic is from the metastatic breast cancer network website.) There is no cure for breast cancer. Racing for the cure, all well and good, but isn't anyone exhausted by al that racing? When do we see the finish line?
0 -
There's no telling who will progress and who will do great with the treatments available today. But one thing I learned that it's better to not worry and to go on and enjoy life. Because worrying will not change anything. We shouldn't let cancer take away from us more than what it has already taken. I think back to the years before I was diagnosed and how I used to say, "One day this thing will end up being cancer". I had such a gut feeling that my breast problems wouldn't just "resolve" and I would worry so badly every mammogram time. And all of that worry didn't stop it from happening. Like what TravelText said, no disease has been actually "cured". People with heart disease manage with medicine. People with asthma never know when the next attack comes. Even the common cold or flu can't be "cured". So we do what we can with what we know and we move on. Hugs to everyone here and warm wishes for a lifetime free of cancer.
0 -
Hi MrsM:
You asked: Are the majority of the 110 women every day who die of breast cancer ones who were diagnosed stage iv from the start? It doesn't seem that would be the case when only a small percentage, 6 to 10% of women are stage iv from their initial diagnosis.
Percentages are not very intuitive when there are large differences in size between the populations being compared (i.e., total initial diagnoses versus total deaths), and when those diagnosed (at any stage) in a given year survive for some period of time (and breast-cancer specific deaths in a specific year may include people diagnosed in multiple years). In 2012, there were an estimated 2,975,314 women living with female breast cancer in the United States:
http://seer.cancer.gov/statfacts/html/breast.html
SEER estimated 231,840 new cases of breast cancer in 2015. 6% of that would be 13,910 and 10% would be 23,184. Each year some percentage of those previously diagnosed with localized disease suffer distant recurrences. Each year, some portion of these two pools will not survive (annual breast-cancer specific deaths). However, I do not think it is possible to figure out what portion of the 40,000 they each represent from just looking at total number of deaths per year, total annual breast cancer diagnoses, and percent diagnosed initially with metastatic disease (Stage IV).
Subject to the limitations of their methodology, your question is similar to the one that the (unpublished) American Cancer Society study discussed earlier in this thread tried to answer. ACS determined that "28% of the women who died of breast cancer during that time period [2008-2012] had localized disease at diagnosis."
This is how they determined that in a specific four-year period, 28% of those who died had "localized disease at diagnosis" (meaning 72% of those who died in the period did not have localized disease at diagnosis) [EDIT: please see my post below regarding the 72%]:
"It turns out that the ACS has special access to SEER data.
The organization has an agreement with the SEER program that it will not identify individuals, said Otis Brawley, MD, chief medical officer at ACS in Atlanta. "So we get a larger look at SEER data," he explained.
"Dr Brawley worked with two ACS epidemiologists to examine the issue. They looked at breast-cancer-specific mortality (as identified on death certificates) in 12 health districts in the United States from 2008 to 2012. They were surprised by the finding: "28% of the women who died of breast cancer during that time period had localized disease at diagnosis" . . ."
Apparently, the data in the SEER database is de-identified (can't be linked to a particular patient). However, ACS likely signed an agreement which gave them access to additional information present in the SEER database. My guess is that with that special access, they were able to correlate publicly available death certificates to particular patient data in SEER to determine that "28% of the women who died of breast cancer during that time period had localized disease at diagnosis."
ACS did not appear to be keen to publish the results of their study. Indeed, there are significant limitations with their methodology, as discussed earlier in thread. For example, others remarked on potential problems arising from reliance on potentially inaccurate information in death certificates. Are the "12 health districts" sufficiently comprehensive and representative?
You can google the title of the Medscape article to access it without registration:
"The Mystery of a Common Breast Cancer Statistic"
And again, the determination by ACS of the percent of those who died who had "localized disease at diagnosis" is not a determination of the percent initially diagnosed with localized disease who will eventually be diagnosed with metastatic disease. See e.g., MsBrompton's illustration of how the math works here:
https://community.breastcancer.org/forum/108/topic...
BarredOwl
0 -
I always read this thread, and thank you for your input and explanations.. I find it too hard to understand the statistics when I read them..
0 -
So, the sentiment of the article....in a nutshell - 28% of those with Late Stage (iv) WERE previously early stage (0-iiia) not that 30% of all BC WILL become late stage? Forgive me if I over simplified this - I am making sure I understand the content correctly.... I feel foolish clarifying but it really makes a huge difference ....
0 -
I've decided generalized stats are sort of a waste of time since no one seems to officially keep count of the numbers that would answer the question being asked here, "What percentage of early stage BC patients progress to stage IV?" You really would think someone might be doing that, but no, it seems they are not. WTH?
My oncologist has taken a stab at providing me with a personal recurrence rate based on Oncotype and the features/stage of my own BC and generally speaking the personal numbers we get from our health care providers based on our own cancer's characteristics is probably as accurate as any single one of us will get. Our personal recurrence rates might or might not fall in line with the general/ average numbers even if such things existed in a trustworthy form. We do know most women diagnosed with early stage BC will not progress or recur but obviously some will and all of us worry about it to some degree, I think.
As far as using death certificates to establish anything, I'm quite skeptical. My mother had BC that progressed to stage IV. She was in the middle of another round of chemo treatments when she died. Her death certificate lists pneumonia as the cause of death with liver failure (she had liver mets and the chemo was not kind) and breast cancer listed as secondary contributing causes. If they look at the primary cause only, she wasn't counted, but she certainly died of BC.
0 -
"Subject to the limitations of their methodology . . . Indeed, there are significant limitations with their methodology, as discussed earlier in thread. For example, others remarked on potential problems arising from reliance on potentially inaccurate information in death certificates."
At least three other members expressed concerns about the use of death certificates (see e.g., page 13 of this thread). I do not know what specific content was used in this study, because there is no corresponding scientific publication detailing the methods used. However, death certificates are used in research, and attempts have been made to assess their accuracy:
"Misclassification of breast cancer as cause of death in a service screening area"
http://www.ncbi.nlm.nih.gov/pubmed/19015942
"Should Cause of Death From the Death Certificate Be Used to Examine Cancer-Specific Survival? A Study of Patients With Distant Stage Disease"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC309738...
Hi EnglishMummy:
Essentially yes, I think they are saying 28% of those who died (presumably?) of metastatic disease during the four year study period, were initially diagnosed as having "localized disease". That says nothing about the percentage of those initially diagnosed with localized disease who progress to metastatic disease. I am not certain which particular stages were included in the ACS study. With no underlying scientific publication, all we have to go on is the Medscape author's understanding of the remarks made by Dr. Brawley, who allegedly used the phrase "localized disease" and whatever stages that included.
BarredOwl
0
