Jul 15, 2017 01:31PM VL22 wrote:
I'd also be careful implying that TN and HER+ make up the unfortunate 7
Posted on: Feb 8, 2015 12:42AM
Just curious because everyone keeps telling me there is a roughly 93% success rate for my stage (IIb) and that makes me very happy to hear! But I'm just curious what happens to the other 7%? Do they bump up to a higher stage? Do they have complications from surgery or chemo? Do they opt out of some treatment?
Posts 61 - 90 (93 total)
Jul 15, 2017 01:31PM VL22 wrote:
I'd also be careful implying that TN and HER+ make up the unfortunate 7
Jul 15, 2017 01:38PM - edited Jul 15, 2017 09:00PM by VL22
Jul 15, 2017 07:49PM - edited Jul 15, 2017 09:31PM by Traveltext
Thanks for posting that link Beesie.
I can see that the death rate in men in 2004 was 0.29 and in 2014 it was also 0.29
Better news for women, in that the death rate in 2004 was 24.49 and in 2014 it was 20.55
Note: All races, and rates are per 100,000 people.
From the same source: 2014 death rates for black males twice that of white males, and 2014 death rate for black women, 30% higher than for white women.
The latest research I've seen comparing sexes shows median overall survival from diagnosis is 5 years for males (95% CI, 4.1-5.9 years) and 10 years for females (95% CI, 7.8-12.2 years; P < .001).
As I see it, low awareness that men get this disease means later diagnosis and poorer prognosis. It's time for the pink charities to lift their game on both awareness and research for men.
Jul 17, 2017 10:37PM Fiddler wrote:
it's not very realistic to go by these stats which just throw everything (I.e, all types) together. For instance, I am stage 2a but my doctor told me I have a 20-25% chance of recurrence. He based this on MY personal situation:size of tumour, grade of tumour and the fact that I am HER2 positive. It's annoying to me to see these statistics because then people think that if you have "early" stage cancer you're going to be perfectly OK. To me a 20-25 percent chance of recurrence is nothing to sneeze at and will be something I worry about for the rest of my life
Jul 18, 2017 02:09AM Traveltext wrote:
Yes, that's true Fiddler. And often a prognosis that doctors provide patients is based on older stats when treatments were not as good. But, any chance of a recurrence is a worry and I'm certainly in your boat percentage wise.
Nov 28, 2017 12:37PM - edited Nov 28, 2017 12:40PM by Hope99
According to my little knowledge, the blood test is available now and its working well to detect before they start to spread. the sensitivity of these tests are high according to some studies. I mean tumor marker, I think most of you know about CA 15.3, CA 125 and CEA blood test, they can follow up the cancer mets/rec. well. its not 100% perfect but it gives indecations about your status, I think its not costly. some time the result become high for other reasons, however, if its more than 30, its better to visit the doctor.
these 3 tests can help who treat their cancer and also the new diagnoses to know if the metastasis spread in your body with other test like ct and bone scan.
hope its help, 2017 is better than before
Dec 30, 2017 10:06PM Shenandoah wrote:
I just had a surgeon followup with a p.a. physicians assistant..had the biopsy, surgery and 15 rounds of radiation in Nov.2017
While I was talking to the physicians assistant, we discussed my HBP, my diabetes and my psoriasis. All these are connected to a low immune system. I said, I must be a ticking time bomb..their reply..yes you are. I am 63.
Came out sad, as she said you know breast cancer can go to other parts like lung etc.
Even tho I am cancer free, estrogen pos. But no cancer in the lymphs..is my life always doom and gloom, waiting for the next shoe to drop?
I am 63
Dec 30, 2017 10:32PM Traveltext wrote:
No, things are not all doom and gloom. Forgetting your other ailments, which have nothing to do with your bc, your treatment was appropriate to your diagnosis (I'm assuming you will also have hormone blockers) and so you can properly expect that the 93% chance of survival applies to you.
Dec 30, 2017 11:35PM carmstr835 wrote:
I think about recurrence, but I put little value in the statistics. My MO said I had a value of 3% less recurrence if I had chemo.
His opinion was I get no chemo. What exactly can he base that on? The onca score of 19 and 17? I believe he did. Well that score is valid with no lymph node involvement and HER2-. Then they added that as long as you were less than 4 nodes involved, the onca score was still valid. I fail to understand how someone with zero nodes could be in the same recurrence statistics as someone with 1-3 nodes. One of my positive nodes was not a sentinel node, I had 2 positive nodes. I also had bilateral cancer, doesn't that mean a cumulative score for recurrence? I had a 3 % recurrence with my left breast and no nodes and Her2-. Then add in the fact I was also right breast HR+ Her2+ and extranodal. So does that mean you ignore the left breast completely? Doesn't that also warrant a 3% recurrence without chemo? He still stands by his stats that I only got a 3% value to my 6 cycles of chemo. I believe it was more like 6% +3% for the left, then add in the Her2+ and that I believe is a huge increase increase in value. I had chemo. Bravo for tumor boards!
So unless everyone in the study can be compared to your statistics, it is not valid. I sure wish we could trust what our MO's tell us. I don't believe I can.
Jan 4, 2018 01:06PM - edited Jan 4, 2018 01:09PM by Hope99
I think the chemo is important to women with stage 2 and positive nodes. my onco told me it's necessary to make sure there is no metastasis around your body + try to stop and kill the cancerous cells before it's locate in some organs outside the breast area. So we should care about metastasis before recurrence, the onco dx test not accurate 100% ( like Ca 15.3 and CEA mark tumour ) if the doctors not make sure you are free-cancer disease and metastases not present in your ct/bone scan .that's what I know and no idea how much accurate is that.
Mar 4, 2018 05:14PM NotBrokenJustBent wrote:
Mgriffiths, while I was told early on by two MOs that after 5 years I was deemed "cured", now I know there is no such thing and that for ER/PR+ my odds remain the same for my lifetime. I have seen some studies that after 20 or 30 years the chances of distal recurrences go down but I suspect that the sampling pool died of other causes so how can they figure that in? How could researchers possibly know if a dead person would have developed mets? Stats mean little to me these days and it strikes me as junk science.
Mar 4, 2018 06:51PM - edited Mar 4, 2018 06:52PM by voraciousreader
not...i don't think you can call it all junk science... imagine for a moment...if a patient died from cancer, how would you ever know what their chances woukd have been of of dying from heart disease, diabetes or stroke? All of us hope for a natural death, but in the end, we all die from something, so it is good that all of this info is documented, so hopefully, many of us can make informed treatment decisions based on whatever “numbers" are “known." That said, in this digital age, the accumulation of “numbers" are getting better and better..and informed decisioned, how ever hard they are, are getting easier to make...Easy? No. But easier..
Mar 4, 2018 08:43PM voraciousreader wrote:
not...you are using brush strokes to explain the drawbacks of epidemiology. For sure the drawbacks are many. However, epidemiologists work hard collecting data and use statistical analysis,in attempting to help us understand the probabilities of disease, their prevention, their treatments and possible cures. It is far from junk science. And you know what is amazing? Now, more than ever before, records are digitalized. This gives researchers opportunities to glean patterns earlier than what we were capable of doing years before. Thanks to genomics, we are also getting better at screening for disease and when disease strikes, giving us better treatments and treatment options, One day soon we won’t need to screen entire groups and we will be able to move some of thise screening dollars into research and finding treatments and cures.
For sure, breast cancer affects more older women. The risk of getting breast cancer is greatest between 50-75. With American women living well into their 80’s, it gives researchers lots of time to see whether women are getting breast cancer and are dying from the disease or dying from something else. Researchers are also getting autopsy data that unveils those people who died from something else and yet had been living with an undiagnosed breast cancer.
Finally, to answer your question of how would we know if a person was cured of cancer if they died from something else decades later, that speaks to the belief among researchers that for so many women, breast cancer has become a very treatable disease, Cure? Maybe not. But good enough for most. And researchers know that thanks to the Scientific Method, Statistics and Computer Technology. You may perceive that to be junk science, but I would rather think of it as progress
Mar 4, 2018 09:15PM NotBrokenJustBent wrote:
Voracious, I am not buying into stats when they are twenty to thirty years out. How can they possibly ascertain who survived BC vs who would have survived if not taken by another illness/accident when BC generally strikes in latter years. Believe what you want but I still stand behind my thoughts that it is junk science or an educated guess at best, but nothing more. Stats can be manipulated or interpreted in many ways and I question the science with so many variables. Regardless, as for me, when I am in my 80s or 90's I doubt I will take much comfort knowing that my distal reoccurrence stats have improved. It is all just noise to me at this juncture.
Mar 4, 2018 09:34PM voraciousreader wrote:
statistics may be controversial to you, but if you look around, you will see that there are millions of women in the United States living with a breast cancer diagnosis. The facts are, that despite population based screening, the numbers of women diagnosed from the start with a stage 4 diagnosis has barely budged. So, on one hand, we have gotten a lot better at finding breast cancer and treating it for most patients, but have made little progress at finding it before it becomes stage 4 for those who seem unfortunate.
Likewise, statistics were able to guide my treatment and were able to give me great hope that breast cancer will not kill me. Might I die from it down the road? Perhaps. But statistics tell me and my team that I am more likely to die of heart disease or another type of cancer.
If statistics weren’t available, then what could my team of doctors base their recommendations on? Today my team are getting better and better at recommending what care is right for me because technology is getting better. And that is a good thing
Mar 4, 2018 09:53PM NotBrokenJustBent wrote:
Voracious, perhaps your doctors are more knowledgeable than mine. Much of what I based my medical treatment on has since been disproved. I am pleased that you have such faith in your medical team and BC stats and science in general but given my experience and my common sense I am skeptical of stats twenty to thirty years out. Believe what you want but don't deny me my voice and my thoughts.
Mar 4, 2018 11:46PM voraciousreader wrote:
not...you are not alone. Some, if not many, feel as you do. Often times, sisters will come along and ask what to do. Their team might tell them they should do chemo...or their team might tell them not to do chemo. What’s a person to do? There is absolutely NO right answer. But if you have some confidence in statistics OR some confidence in your team, eventually you will do what is best for yourself. But with that being said, must we dismiss medicine as junk science when they try to project?I think not. And furthermore, I think feeling that way deprives medicine of the praise it deserves. On my journey i have met extraordinary researchers and clinicians. Have there been mistakes? Yes! Have the mistakes been huge? Absolutely! On a sonogram my tumor was mistaken for a cyst and missed completely on a mammogram....for 3 years! And I have had bigger mistakes that nearly killed me....violin playing now...i nearly died from a ruptured ectopic pregnancy because I was pregnant with twins and the one in the tube was missed....soooooo....if anyone should have a healthy disregard for medicine, that should be me....but I don’t. Until some better form of science comes along and we can dismiss the Scientific Method and statistics, I will just have to stick with the status quo...
Lastly....if you think your team was inept, why didn’t you seek out better care? Before being treated, I consulted the NCCN breast cancer treatment guidelines. Did your team’s treatment plan differ from the Standard of Care? What was the level of evidence that determined your treatment? No doubt there are some patients that were not offered the standard of care....but then there are some who are and yet refuse. Are the breast cancer treatment guidelines, which there are a few, just bewildering to the point where you don’t trust them? I am just trying to understand why you would be so dismissive of the statistics....I know from time to time the cancer researchers and clinicians will vehemently disagree with one another, eg DCIS treatment, population based screening, just to name a few....and these controversies continue unabatted....BUT....at least the players in these controversies are doing their best at trying to settle the controversies by conducting more research and in time, someone will be proven correct. My team was able to tell me what they knew (guidelines) and what they didn’t know ( clinical trials). From that, AND their experience, I made as best of an informed decision as I could. If I am alive in 30 years, perhaps the decision I made will be helpful to some future patients and clinicia
Mar 5, 2018 03:40AM Traveltext wrote:
I've noticed reading very many posts on this perennially popular topic that people tend to have many rationalizations for their situation. They invariably trust their team, follow the stats and sit back comfortable with their situation and their prognosis. This is likely a good thing, but surely all the science is not spot on and all the stats are variously rubbery to some extent, so arguing the point becomes somewhat meaningless for me.
Mar 5, 2018 10:57AM voraciousreader wrote:
mari....within the NCCN guidelines there is a page devoted to Tubular and Mucinous breast cancer. Because both are considered rare “favorable” cancers, there isn’t much “hard” evidence. That point speaks to what Traveltext said....the evidence is “2B” according to the heirarchy of evidence. Over decades, evidence accumulates for the various cancers and, as the “experts” meet annually, they look at the evidence and then debate the merits and develop new guidelines as the evidence changes. Since I was diagnosed 8 years ago, I have seen some changes recommended for tubular and mucinous breast cancers. I have also seen changes, in my opinion remarkable, for other types as well. For example, back in 2011 they began recommending the OncotypeDX test for those patients with ER + HER2- disease.
So, That’s why I think trust in your team is paramount. They are the ones who have the years of experience and are able to see the evolution of the guidelines. Years after my primary treatment ended, I realized how spot on my team was with their recommendations. Now, as I move closer to my 10th year of treatment, both my MO and I continue to stay current with all of the latest studies and discuss how they affect me. Several years ago i mentioned that I was reading up on the BCI genetic test and my MO said at the time he wasn’t ready to recommend the test. Then, a year ago, he finally recommended it and I did the test.
Now, to answer the question of why someone would want to trust prognostics twenty years ahead? Well the answer lies with those sisters who were diagnosed with BC more than 50 years ago. As we move forward, we are able to look back at those patients who were treated 50 years ago and we can look at their outcomes. That partially explains how the OncotypeDX test was developed. Moving more closer in time we see how newer treatments have and still are affecting patients.
Is all of this research junk science? As one who has finished active treatment and now sits in the bleechers and watchs the research evolve, I most humbley and respectfully disagree. With each passing year I grow more confident in the decisions I made AND I grow more confident with the research devoted to breast cancer prognostics
Mar 5, 2018 11:06AM ksusan wrote:
Statistics describe groups--they're probabilities (either descriptive, based on counting a sample, or projective, anticipating trends from data and algorithms).
Descriptive stats are harder to argue with because they are based on actually counting target phenomena (though one might argue with what was counted or how it was counted). This data is then generalized to a population, which is likely to have more complexity than the sample. This is why clinical study findings are more accurate than community findings--in the study, error variables have been reduced in order to isolate phenomena. As an example, a BC study might exclude people who also have melanoma to simplify the data and its analysis.
It may be helpful to learn whether the "30 years" statement (citation for that?) is based on a description of a sample of people who are 30 years out from diagnosis (in which case, there's potential for error in applying this finding to people just being diagnosed, since diagnostics and treatment have changed since the sample's experience in perhaps the mid-1980s), or is a mathematical projection based on a current sample's data that's been plugged into a regression equation or other algorithm to anticipate outcomes.
Mar 5, 2018 11:06AM Paco wrote:
You don't have any diagnosis information in your signature. May I ask at what stage you were diagnosed and the medical treatment you were provided that has since been disproved? I find it helpful when considering viewpoints and understanding better this complicated disease.
Mar 5, 2018 12:13PM NotBrokenJustBent wrote:
Paco, I am stage 1a and was advised to do chemo because of my relatively young age, grade 3 and an oncotype of 20. I was advised not to remove the healthy breast in that my chances of developing cancer there was no greater than that of any other woman. I was initially advised to watch and wait 6 months in order to monitor any changes as opposed to a biopsy and upon the recheck it was IDC. Lastly I had a difficult time on the hormone blockers and tamoxifen was an especially terrifying experience. I finally switched MOs due to an insurance change and she immediately took me off Tamox and now I am on femara and doing fairly well expect for extreme fatigue which may or may not be a SE.
I am with Traveltext and a twenty year projection is meaningless to me in fact I am sorry I even got involved in this discussion.
Stay well All. Signing off.
Mar 5, 2018 05:53PM NotBrokenJustBent wrote:
https://ww5.komen.org/BreastCancer/OncotypeDX.html This sure shakes up the stages and previous stats.
Mar 5, 2018 06:16PM marijen wrote:
NBJB. thanks for the link. Here's the tests that should be done for metastases - I just wonder how often these tests are done? In our HR+, ER+ Her2 - dx's, the recurrence actually increases after five years. I hate the idea of waiting for distant symptoms. By then it's TOO LATE!From Komen.org
If the breast cancer has spread to the lymph nodes in the underarm area (the axillary nodes) or you've been diagnosed with locally advanced breast cancer, you may need tests for metastases.What tests may be done?
The 3 main tests are:
Positron emission tomography (PET) and other tests for metastases may be done, depending on your symptoms and the findings from the three main tests.
Mar 5, 2018 08:17PM Hopeful82014 wrote:
marijen, I think most of those tests are done primarily at time of initial diagnosis, particularly the scans but not on a regular basis after that unless symptoms arise. Blood work is often done more frequently but I'm not sure what the guidelines specify although it's probably easy to find that info on line.