Survivors who have used only alternative treatments
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Edited my previous post to BOLD what I think many might be missing. Also, my post was intended to envelope ALL cancers. I mentioned that. Just wanted to make my statements clear. I don't prescribe to the stupid theory of "if you're going to get cancer, breast cancer is the one to get". IMO, that is the dumbest thing I've ever heard. There's no way I could say that with a straight face.
Edited to add: I totally agree Yazmin...there seems to be a complete disconnect between researchers, funding and drug companies.....and don't get me started on the drug companies!
I would like to end my final post on the matter with one of my favourite quotes:
"Yeah, but your scientists were so preoccupied with whether or not they could, they didn't stop to think if they should". (Jeff Goldblum - Jurassic Park)
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Gracie, is your post directed at me? I certainly never said "if you're going to get cancer, breast cancer is the one to get." I don't believe that and I didn't say it. I did say that research for breast cancer is far, far ahead of where it is for glioblastoma, the kind of brain cancer that killed my mother. That is a demonstrable fact. Not sure why you think its the dumbest thing you've ever heard. I'm surprised anyone would even disagree with that statement.
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No Member, it wasn't directed at you or anyone. So sorry if it felt that way. I just wanted to make MY OWN thoughts and opinions clear. I should have known better than to get involved. I'll humbly bow out.
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Wornoutmom,
I would suggest before you decide to refuse chemo that you have a blood test for circulating tumor cells done. This could give you an idea what your chance of distant relapse is without chemo. This was discussed in the last San Antonio Breast Conference.0 -
My favorite organizations to hate in the fight against cancer: the American Cancer Society and Susan B Komen (I know I am about to be pelted with carrots and beer cans at any moment - I am not saying that they do no good - they do charity work that helps many).
It is so sad, because the cancer world is so corrupt with profiteering from crappy treatment protocols that more properly belong in the annals of Medieval medicine. And yet patients put up with it because we are conditioned to think that if a treatment for cancer hurts, it might work. The rest of medicine is in the post-Enlightenment era, thank goodness.
I can see it more clearly, too, because I have a comorbidity that also has its money makers, big pharma people, etc.... BUT the advocacy and research groups are so much cleaner and less corrupt. You get the sense that the whole industry is constantly pushing for better and better and that they are responding to clamours by patients and doctors. I trust most of the academic literature. People are allowed to think outside the box and make bold proposals and breakthroughs are made periodically.
In the cancer world, there is a tyranny of narrow mindedness that we allow to remain because fear clouds all reasoning. You simply get pharma reinventing itself and working on the ridiculous notion that it is unethical to not give a patient chemo, when chemo has a dismal record, at best. You have prescriptions for blind treatment - early stage breast radiation "just in case" is one example. The Hippocratic oath of "do no harm" is routinely violated out of fear. You've also got too many people making too much money off of the status quo. If there were a cure for breast cancer such as in the form of a vaccine, imagine how broke all the drug makers would go. Imagine how Komen and the ACS (who, into the early 2000s, was still denying that environmental factors could cause cancer) would feel. I seriously think our GDP would drop.
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Gracie, please don't go anywhere. You belong here just as much as anyone else.
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Heidihill - would you go into more detail about the "circulating tumor cell" conference discussion...
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....And I thought I was the only one to hate the American Cancer Society and Komen! I mean: they do such a good job out of covering themselves up and getting thousands of poor woman to walk, run, swim......whatever....... all for their own selfish money-making interests!
It is a shame that such organizations continue to receive millions and millions of dollars in public and private funding, when their goal is just to keep the status-quo, at the expense of any real, meaningful new discoveries.
What a shame.....
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Boy, lots to chew on here - enough to make me delurk!
First of all, I'm one of those survivors who used BOTH conventional and alternative treatments. There's no reason why you can't hit this beast with everything you've got! I did lumpectomy, chemo, rads, tamox, acupuncture, Chinese herbs, massage, prayer, nutrition - yup, I hit the cancer with everything I had.
Whether the complementary treatments made a difference in my actual survivorship, I really don't know. I like to think they did, but who knows? I do know they made a TREMENDOUS difference in my quality of life during and right after treatment. Especially my fatigue, energy levels and general mood were so helped by the Chinese medicine. I was able to keep up with my Master's program, see friends, go to museums, and in general, I was able to live life and wasn't glued to the couch.
Nutrition helps, too - unfortunately I was neutropenic and had to "cook it, peel it or not eat it" but I was able to enjoy my steamed veggies and peeled fruit. Probiotics made a big difference in how I felt as well.
I'm one of those people who say "go for the alternative stuff, it helps a lot, but in addition to, not instead of, conventional treatment." Herceptin is such a miracle drug, I think if you're HER2+ you owe it to yourself to at least give it a try.
Remember, too, on a message board you are going to get a disproportionate number of people with real problems. For me, chemo sucked, but it was do-able, and I wasn't left with permanent disabling damage (just chemopause and hot flashes!). You hear from people who get really gnarly side effects because they are the most vocal posters who are seeking support.
It's a teeny, tiny, minority who suffere from severe, disabling, permanent aftereffects from conventional treatment. Usually, the really bad stuff is temporary and can be cured or controlled. The benefits from chemo outweigh the tiny possibility of disability that cannot be cured. It's like any medical procedure.
In sum, I'm a "do both" survivor. And if worst comes to worst and it returns, I'm going to once again hit it with both conventional and complementary treatments. I think complementary treatments really DO help.
About the major cancer charities, I don't think there's some kind of huge conspiracy between charities, Big Pharma, and doctors to keep some miraculous cancer cure secret, OR to dawdle on finding a cure in order to milk profits. But it is maddening to see all this money rolling in to places like Susan G. Komen, and not necessarily a lot of results. Where does the money go? What about cancer prevention, specifically finding out if something in our environment is causing it?
I especially hate the "Buy this pink chochke in October" stuff, HATE IT, because probably about $1 of that $15 lipstick will actually go to charity, and of that $1, only about $0.25 to finding a cure.
Cancer in general, and BC specifically is so multifaceted that a "cure" for one might be found but not for another. There have to be targeted cures or remedies, like Herceptin for instance.
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Athena, I just want to say that I agree wholeheartedly with your posts on this thread.
Wornoutmom, I believe the reason no one can answer your question is because the women who have chosen to go the alternative route either do not come to these boards or do not remain here. We can very clearly see why, when we read your thread. Please know that there are wonderful women here on these boards. Some strictly conventional and others doing conventional with alternatives mixed in. Who is to say which is right for each individual because it's really all a guessing game. Until they find a cause, they'll not find the cure. Some have been coming here for years and are wonderful with offering support and information but I have found, as you have, that even though you are posting in the "alternative" forum, the consensus here is primarily negative when it comes to strictly alternative therapies. I had hoped to be embraced by like-minded people when I found this "alternative" forum but I have to say that I was disappointed. I thought the forum would be women who talked about their experiences, successes and hardships with their chosen alternative therapies. Sort of like the "herceptin" threads, where people who are on herceptin go to discuss their issues. However, there are definitely pro-chemo people here who are very condescending about their opinions as to the best therapies and I'm not pointing out anyone posting here...just that I have found this to be true in general within this forum. To my surprise, I felt attacked and ridiculed when I revealed that I had refused protocol. Whatever their intent, it served to fuel my passion for my beliefs which is probably just the opposite of what the well-meaning women were trying to accomplish. I know of others who have felt this as well and they do not post anymore. I would like to point you in the direction of the "natural girls" thread, as there is a wonderful atmosphere there and some very good "alternative" information being shared.
After much research and soul searching, I made my choice in therapies and I am happy to have had one. I have found my peace and haven't looked back. My hope for you is to find that place in whatever route you have chosen because it is truly a decision that only you can make.
I would like to say that there isn't much that bothers me more than use of the word "quack". Dr. Burzynski is a primary example of this type of name calling. The government has wasted so much of our money trying to persecute him without success. He is in clinical trials and if/when antineoplastins are approved, it will mark the first time (to my knowledge) in history that a scientist, NOT a pharmaceutical company will hold exclusive rights and distribution of a treatment for cancer. I have to wonder if that's why they are trying to stop him? Conspiracy? I think not but there are too many pharmacuetical reps in bed with too many government agencies and too many sitting on boards of 'cancer this or that' or funding our doctors educations for there not to be some conflicts of interest. As I understand, the final phase of his trials will cost somewhere in the neighborhood of $150 million. I would like to see some of the money raised for research to help fund this but of course I'm dreaming.
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I would like nothing more for women who have had this exact Dx to respond with there experiences, hardships and sucesses. Please anyone who has had this Dx and who has survived not using conventional treatment, please jump in...
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It's unfortunate but I don't believe those women come to these boards and the ones who do, discover they are not the source of support as they had hoped so they do not remain here. I wish mainstream took as much interest and studied these women as well. Maybe then, we wouldn't be left to wonder.
I have said that I dont call myself a "survivor". I choose to say I am thriving after cancer. There is something I've wondered and maybe this is a topic for another thread but....At what point do we call ourselves survivors? One year, fives years, ten?
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I have to say I thought I was the only one a bit appauled by Susan B Komen. I love the awareness it raises don't get me wrong there but when I found out the fee they charged to walk I was in shock. You mean to tell me you will turn me down if I only get $1000?? You add that by another 100 women can the cure really just forgo all this money? Not to mention I am surviving this diagnosis and if I can't come up with all the money you will turn me away????? It really makes me wonder about the true focus of this group. I can understand that they have costs but the lung cancer one is only $125. So I will be doing that one on 3/26 in SF in honor of all the women who have it spread to their lungs as all cancers are interrelated. And my way of showing BC I am still in charge here
On the survior part I am perplexed. My mother in-laws doctor told her "I cured you". I thought this was unethical of a doctor. There is no Cure for cancer. She is stage 0 and had lumpectomy and rad, almost 7 years out. She then bashed Suzanne Summers but she iwas more advanced and like 13 year out so isn't she a survivor but she is ridiculed. So weird, if she had taken chemo they would be praising her success. I just don't understand the double standard.
I do know medical science can only give 5 year statistic but my doctors gave me a 10 year guess. She also said they don't follow second cancers other than leukemia probably because that statisic is below 2%. My fear is what happens after the 10 years and why won't they show that as we have been giving chemo much longer than that.
I also think why do we lump alternatives into one big group but yet with chemos we talk in terms of specifics like herceptin. There are quacks out there for sure but there are some people getting some really good results too. Hyperthermia used to be called quack medicine and they are using it in the cancer centers of america and my doctors are still hitting you with chemo to do the same thing. My sister in-law put Essiac extract in my father in-laws drink and the doctors watched his tumor shirnk to nothing and told her keep doing what your doing ( she corrected me as I hadn't realized he was in favor of it based on the results on him). His wife a full chemo believer watched it with her own eyes and has to agree. Sad part is they won't look into it. I guess when you see it work you can't fight it no matter how much of a nonbeliever you are but most just read and make assumptions.
It is like we watch the news and the news says cut fat eat carbohydrates. We all bought fat free this and fat free that. Few years later the same news says cut carbohydrates eat protien. High fat protien bars etc hit the shelves and people bought them up but at no time do they question hey weren't you the same one that told us we needed carbs?? We see the drug recalls daily and yet still take what ever they give us and never question that the last thing we had is now too dangerous. Guess that sums up why I am searching for surviors
I will see a NP and listen to one who works with both medicines to give me the whole picuture. Who knows she might think both is best but again EACH person is different that is the biggest problem with one protocol fixing us all. If I do end up the chemo route I will demand the sensitivity testing even if I have to pay out of pocket!! I want to know each one works on my tumor as I dont' want to gamble with that. My Radiologist seems to think I can get tissue sampling to do this funny how this comes up when you push but not if I just take their advice. No one would even talk about it but knew of it. 0 -
First of all.....listen to yourself.
I agree that no amount of statistics actually pertains to any one individual. They are numbers and they are usually made to look good, or bad...according to who is publishing them, and the agenda (or drug) that is being pushed. Belief in yourself and the treatment you choose is most important.
You can incorporate natural therapies right now, and hopefully, it will give you enough time to figure out what to do.
I know deciding is difficult. I am seeing a doctor who treats patients with the view that the body will heal itself if it is in balance and healthy. I have had AC and Taxol for the last six months, and just refused surgery with was scheduled February 24, 2011. My family is very upset, and frightened for me....but, I need more information. I am not able to go forward at this point because I really don't believe in the treatments planned....at least, I don't believe that is the place to begin treating my cancer..but, should be a last resort. I don't see any sense in treating only the symptoms, and not the underlying condition that causes cancer. I believe cancer is a lack of good health. After all, we are told that cancer is inside all of us, and only rears it's very ugly head when our immune system is overloaded. Best wishes, and please don't delay whatever you choose.
ps....even I would be a bit afraid to delay treatment with a stage III, and would be more likely to go the conventional treatment route..mostly out of fear of it getting too out of hand. I don't know, I guess that is why each of us must choose what is best for us individually.
From my reading, a natural approach takes a HUGE committment and encompasses a large multi-faceted approach.
Here are some sites that I have been reading:
www.drlwilson.com/index
www.wandacline.com
www.healingcancernaturally.com
and there are SO many more.
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I agree with whichway2run... well said!
I too believe there is a cause and effect for everything. My second bc surgeon, who headed up the cancer research at the Legacy hospital, also said the body is smart and knows how to heal it self. What bothers me is we have a very complex immune system with killer cancer cells, and the treatment for cancer patients is to kill the immune system through cancer drugs. That doesn't make sense to me. I refuse to do anything to harm or suppress my immune system. Rather, like you said, encompass a multi-faceted approach to health.
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Wornoutmom,
Most oncologists use a program called Adjuvant! which only looks at 10-year data. There are other programs that look out as far as 15 years. The problem is that chemo agents change and surgery techniques improve, so it is hard to go too far back. Also, Herceptin, for obvious reasons, does not have long-term outcome data.
However, there is more general cancer treatment outcome data over the past several decades showing that death rates have barely budged. This suggests that most treatments have failed to address the disease but, of course, it could also suggest what many have long suspected: that we are ignoring the environmental causes. It doesn't help when organizations like the American Cancer Society, which is the world's largest charity, consistently dismiss or belittle or fail to further investigate environmental causes (the reason for this is well know - they are funded partly by polluters).
However, here are just two articles in the mainstream press that appeared just when I was making my treatment decisions and shed rather dismal light on our progress so far:
As Other Death Rates Fall, Cancer's Scarsely Moves
Advances Elusive in Drive to Cure Cancer
http://www.nytimes.com/2009/04/24/health/policy/24cancer.html?_r=1&scp=1&sq=war+on+cancer&st=nyt
I am, generally speaking, very pro-conventional therapy and also believe in complementary (not alternative) therapy alongside it. Generally, in western medicine, conventional therapy and science-based medicine are one and the same. Cancer is one illness where the two often part company. To be honest, the treatment I most had faith in BY FAR for me was plain old surgery. The Tamoxifen I was on and the Zometa I continue to take are, to me, secondary. I confess to being a huge enthusiast of Vitamin D3 and of good sleeping patterns, since low amounts of both have been linked to bc and I was unusually low on both counts on the eve of my dx. I had more chaotic sleeping patterns than most animals (this is not an exaggeration) and I avoided the sun like the plague. It therefore made sense to prioritize two areas where I stood out from most anyone else and which may be associated with BC (although a causal connection remains unclear).
Radiation I had no use for in my case, so I didn't even consider it. I do believe in radiation, but not for my situation. With chemo, a comorbidity made that treatment potentially fatal, but what really killed the decision for me was the lack of real science. Statistics are not science. They are maths.
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I am reluctant to revisit this thread.. It is so impassioned. I have always been a 'natural' girl and when I first found my lump, was convinced that exercise, special eating and any non medical 'therapy' would make it go away. It is really difficult for me to live with the guilt of not 'doing something' sooner. I most likely would have been stage 2 or 3.
I adore my children and well, to put it bluntly, should have sought immediate aggressive treatment.
that's all I'm going to say.
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If your MIL was stage 0, DCIS, she was cured by surgery. The cancer cells in that case were not invasive and couldn't spread. Some doctors refer to DCIS as pre-cancer for that reason. Now sometimes they miss some invasive cancers with DCIS and in those very rare cases, the cancer can spread. But if she really did have DCIS, the surgeon cured her and chemo would not have been an option. They do prescribe hormonal meds for women with DCIS, and as much of a proponent of those meds as I am for invasive cancers, I would think hard about taking them in those circumstances. But I digress, these aren't your circumstances.
I think complimentary medicine has come a long way toward acceptance and I know my cancer center has a complimentary treatment center as well. I don't think its quite fair to say that women who choose mainstream medicine are bashing alternative practices. Many use both, and they've expressed themselves well on this thread.
What you are considering is something else. Purely alternative methods have nothing like the scrutiny that mainstream methods have had. You may be able to poke holes in some of the science behind mainstream treatments but these other treatments have no science at all behind them. And they are a big business. With all the hostility toward big Pharma I think everyone should have some of the same skepticism toward Big Alt, an industry that had enough power and money to lobby to get themselves exempt from FDA oversight. Essentially anyone can claim anything and get a following. You should bring the same skepticism you have toward mainstream medicine to this as well. A lot of people are getting rich offering sick people untested approaches.
And I don't think it is bashing to point out that there hasn't been a single poster on this thread with OP's pathology who chose an alt approach and survived. I would be interested in hearing if such women are out there. I have never heard of any.
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Mainstream medicine has given us studies which mathmatically demonstrate:
Lymph node dissection - NO overall survival
Radiation therapy - reduced local recurrence, NO overall survival
Herceptin - reduced recurrence, NO overall survival
Arimidex - reduced recurrence, NO overall survival
Chemotherapy - too many mixed cocktails to evaluate, may extend life a few months
If mainstream medicine was a success, there wouldn't need to be alternative approaches. When there are studies that show the tradtional approach is statistically significant for breast cancer, I will sign up for it. Mainstream adjuvant breast cancer treatment is tested but unproven to be effective for overall survival.
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Mathteacher please explain how the therapies you list reduce recurrence but don't effect overall survival. I just don't understand because it seems that if your reduce recurrence then you won't be dying of the disease.
I mean I know someday we all will die of something so in that case you're right, Herceptin isn't going to help me if I get a heart condition, diabetes or just old age and end up passing from complications from that.
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Mathteacher: your statement on arimidex, no survival benefit, compared to what????
Arimidex does reduced recurrance rate and increase survival rate - compared to no hormonal treatment.
I understand you want to make a point, but for the sake of fairness and accuracy, your statements purposely lack detail to make your point, and mislead.
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aw Math- you are right and therein lies the rub for us all. I think we have to beat the bastard BC with whatever is at our disposal and what we can stomache...WHILE taking care of ourselves like never before to stop providing fertile ground for others cells to mutate into cancer. It is a weakend immune system that helps that occur. Having said that...i have unfortunately met an extraordinary amount of women that were at the top of the charts in regards to health...and still BC reared its ugly head. There are no guarantees. Many think I am playing with fire using my alternatives to arimidex but it is my choice based on a number of factors. .BUT as I said previously, i know in my heart it would be a different ballgame if I had a more advanced cancer. I am big on data...withmy diagnosis I had a bit of wiggle room to test it out. Not so much if I had a rapidly growing primary cancer. I apologize if any were offended by my obvious dislike of Suzanne Somers but in any case I never trust someone who says CURE., It is offensive. And impossible to claim. And inthe end, we only know what they choose to reveal...there isno way to prove the ancedotal info.Same drill with Bryzinski here in Houston. Applying to the FDA for a clinical trial is entirely different that being accepted in the FDA. Being investigate by the FDA for dangerous practices is also different than claiming persecution from the FDA. The FDA is too bloated and ineffective at this time and they are taking measures to rectify it. But a course of treatment or a medicine that does nothing but offer empty hope is in some ways more or as dangerous than something that does not. It may keep someone from seeking or trying a therapy that could be helping. It does come down to the bejamins in all cases....both the alternatives and big pharma...there are many heartfelt researchers that struggle to find cures and eases for this BC...but even that is subdivided by types and we all know the range of types there are with new variances being discovered all the time. Actually tradtional medicine is moving to personalized medicine based on our own genetic profiles...it is a long way off in most cases as the cost is prohibitive and science not yet sound. But every major pharma company has a team working on that couse of study right now. I can say that every major researcher I have ever spoken to (ack and this was all prior to my BC-will be different this year) insists that people have to listen to their bodies when taking a drug. That no two people react the same. Not in anyway. Even something as simple and fairly inert as benadryl - it makes most people sleepy and makes me into speedy gonzales. Just different bodies. As the severity of a particular disease is raised so does the acceptance of the side effects. They have to be measured...a return on investment so to speak. But I think it is most important to know that nothing from either camp is definite. Sometimes thing just have to make sense to us and we have to listen and study with a clear mind. My choice of BMX for a 5mm tumor made sense to me then and does today. For others, it appeared to be a horrific choice. That is ok. And in the end, that is what it has to be, something we can LIVE with.
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lago- I concur with you....overall survival rates are tricky as there are so many other things that can kill not just BC. And there is simply nothing on this planet that can yet say you are cured from BC and everything else that might ever kill. It just so happens the studies that are focused on breast cancer so of course that is added in as a factor when indeed itmight not have anything to do with it. Too many variables even in controlled tests. Because compliance ultimately depends on us humans who too often skip things or don't follow protocol...there is always an error factor added in. And that too is just an educated guess. I got run over by a car the fact that I had BC would be factored in when indeed BC would have had nothing to do with it. I am going to get some numbers that illustrate a bit better what I am trying to say:)
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Iago,
You ask an excellent question: How can anything that reduces recurrence not extend survival? The short answer is because sometimes treatment-caused disease kills you first.
With radiation they have figured out the answer to this. While radiation effectively "sterilizes" the potential cancer cells in 10 women out of 100, after ten or fifteen years the radiation can take its toll on the heart and lungs. So while the breast remains cancer free, you can die sooner from heart/lung diseases.
Regarding Herceptin, no one knows yet why the overall survival benefit hasn't been shown. I don't know whether it is cardiac toxicity or not. Going out another ten years, the scientists may know.
Regarding Arimidex, it hasn't been well-studied at all. I'm not qualified to speculate because there is so little data. It may be just that it is such an blast to the hormones that women die sooner from the protection that some estrogens confer to the heart. Or the lack of overall survival problem may be completely unrelated to blasting the estrogens.
These are very hard decisions to make when considering treatment. The doctors in good faith want us not to have a recurrence so they recommend treatments directed toward that goal and seem to disregard overall survival as a goal we may want to know about.
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Timothy,
Were there typos in your post? I don't know what you're saying other than attacking me before you have even read the material.
You want detail, you can look up the studies, yourself. Don't believe me. One of the good things about mainstream medicine is that its limitations are right there in the published studies.
Best to you and Bev.
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So then in your opinion these therapies haven't proven overall survival.Yes you are entitled to your opinion.
Radiation only effects the heart/lungs if it hits those areas. Some of those 10% might have had undiagnosed heart issues prior and some might have developed heart issues in the 10-15 years anyway. But what about the other 90% that don't have issues.
Herceptin only causes heart issue in a very small amount of women. Most of the time it is reversed once the drug is stopped as long as it is stopped in a timely fashion. Some do develop congestive heart failure but that is very treatable and better than treating cancer. HER2+ diagnosis had a very poor prognosis prior to herceptin. This drug has been proven to make a big difference granted I agree it is still new. We don't have long term stats for early breast cancer treatment and maybe 10 years for advanced. Hey if it gives me 6 years more rather than 2-3 without I'm taking it.
Arimidex if you are not qualified to speculate then you really can't say it has no effect on overall survival. Granted I do believe you believe it doesn't but that's an opinion. Some folks might get mixed up on what's opinion and what's fact.Remember that women taking Arimidex are post menopausal anyway. Many of these issues would have happened even if they weren't on Arimidex.
When doctors weight treatment they looks at benefit vs risk. I was in a grey area for RADs and my rad onc said no need to put my body through further risk given my already aggressive treatment. Obviously she felt the risk in my case wasn't worth the benefit. Considering my tumor was in the posterior region AND on the left side I'm sure my heart was one of her concerns.
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Iago,
No, not my opinion at all. I just reported the conclusions of the published medical literature on these adjuvants. These are the studies which you can look up yourself in the National Library of Medicine database. Please check so you know first-hand.
You will see some of the investigators and published researchers speculate about cardiac or other unknown toxicities. I said I wasn't qualified because I personally am just reporting on what the definitive researchers wrote after looking at the ongoing data-gathering.
As they say around here, if you don't like the evidence, check the sources and don't shoot the messenger.
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Mathteacher you are just plain wrong. There have been many, many studies on the survival benefits of chemo, herceptin, Arimidex. The links to those studies have been posted over and over again. These are your fixed ideas and the science just doesn't support them.
Radiation: heart/lung damage is only a potential issue with tumors located in a a specific area, the minority of tumors. They've gotten much better at targeting the radiation and in those rare cases, they will flag the potential issue ahead of time so the patient can make an informed decision.
They absolutely know herceptin increases survival which is why her2neu cancers are no longer considered the most potent and why they unblinded the study early. It hasn't been 10 years, that is true. So women should wait? Even though the date they have so far proves stronger than almost any cancer drug in recent memory of a survival benefit. And for the small number of women with (largely reversible) cardia issues, no one should take it? A far higher number of people get ulcers/stomach issues from over the counter pain meds, perhaps no one should take those either.
Arimidex has shown a very strong survival benefit. It has not been shown to have strong benefit over tamoxifen and I know a number of women on these boards misread this to say no benefit at all. But compared to taking nothing at all, arimidex saves lives.
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No - mathteacher is correct and it isn't her opinion. Lago, I know it sounds counter-intuitive. I will try to explain.
Overall survival means just that. Survival from all causes. Disease free survival, from our perspective, means survival with no known breast cancer. As you point out, you can die of other things. So a medication or treatment may reduce death from breast cancer, but that reduction may be offset by an increase in death from other causes and it may average out to no overall benefit.
But it isn't as though we can each take the "no overall survival" benefit personally. OS is based on epidemiological data; it says nothing about what will happen to you, personally. Mathteacher is accurately describing what studies say about many, many thousands of breast cancer patients. I should add that Tamoxifen, too, has no OS effect.
So how does this work in individual terms, and how do we extrapolate, from individual cases, what seems like a contradiction: a reduction in breast cancer recurrence, but none in treatment-related death?
Let us talk about treatment X and let's profile three women, whom we will call A, B and C. This is how overall survival can work:
--Woman A may see benefit to her breast cancer and live happily every after. Without treatment X, she would have died. As it is, Treatment X proved a cure and she died forty years later of a heart attack.
--Woman B may see no effect that she wouldn't have seen without treatment and die of bc - or not - treatment X wouldn't have factored in one way or the other. She may as well have had a glass of water. Treatment X was useless to her.
--Woman C may develop, let's say, a deadly blood clot or metastatic uterine cancer and die as a result of Treatment X. BUT, lo and behold, she didn't have an iota of BC in her when the autopsy was done.
Generally, oncologists will be primarily preoccupied with the effect of treatment on breast cancer. So in this group of women I have made up in my head and whose fates I have invented, it might make sense to say that Treatment X is a good idea and had a 66 percent success rate. That is, strictly speaking, accurate. But it was also responsible for one death, cured another person and made no difference in another. So the overall survival benefit from Treatment X was zero.
This reality underscores just how difficult our cancer treatment decisions are and how much of it is a casino chip game. Because -I must add this crucial component here - woman A, B and C had identical cancer profiles, no known comorbidities and were not taking other treatments that could have accounted for their fates. Obviously, there was something different between these three women; otherwise they would have had the same outcome. So what was different?
We still do not know.
Doctors and pamphlets will almost never mention lack of OS benefit, sometimes because they don't want to confuse patients. Such a lapse is grossly unethical, IMO, and only in the fear-driven cancer world can practitioners get away with it. Cancer scares so many people that they lose their heads. As a result, crucial questions routinely go unasked or unanswered. I sometimes wonder if more lives could be saved if we left well alone!
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Just adding this postscript to my previous post: I am not personally familiar with the data on Herceptin. My post is to explain overall survival which is true. For Tamoxifen and radiation for early stage, the OS benefit is indeed zero. Overall survival benefit of mammograms: also zero, in recent, well designed studies.
Member: you are comparing apples and oranges. A drug can indeed save lives and STILL have no OS and therefore no epidemiological value. Again, see my previous post.
Oh, if only things were simple and we could just say, rah, rah rah for today's cancer treatment!!
Also, BCO is not representative of breast cancer patients. For one, we are generally a much younger crowd. We also have more access to treatment than many and our access to the internet suggests other advantages too.
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