Survivors who have used only alternative treatments
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I think step one should be researching your actual, or absolute risk of recurrance from the precise details of your diagnosis and age. How many women out of 100, without further treatment, would have a recurrance after 5 years? 10 years? After that, look at the benefit of proposed treatments, understanding what it does to your risk of recurrance. Is the risk of recurrance reduced by a small amount or a significant amount? Step 3 should be to look at the actual risk of the various side effects or detrimental outcomes of the treatment. What are the side effects and how often to they occur? How does this balance against the benefit of the proposed treatment? You need to factor all of this into your decision. Its complex, overwhelming at times, and often there is little time given to ponder.
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Woah, there's a lot of bad information in this thread! Let's show some scientific support for our statements before we send someone down the path to her early death.
I will start by challenging 1Athena1's statements:
* "As of this date, there is no evidence that chemotherapy has any bearing on overall survival in large organ cancers such as breast and lung."
UTTERLY FALSE!
I'd like to refer everyone to a study published in the Lancet in 2005. It was a meta-analysis (which means the authors collected data from all relevant, vetted, RANDOMISED studies).
Here's the study: "Effects of chemotherapy and hormonal therapy for early breast cancer on recurrence and 15-year survival: an overview of the randomised trials."
http://www.ctc.usyd.edu.au/cochrane/publications/EBCTCGpaper.pdf
It's a complicated report, no question, but extremely thorough. And therein, Athena, you will find plenty of evidence that chemotherapy does indeed improve survival for women with early breast cancer -- especially for women under 50, like wornoutmom.
Secondly, Athena says:
* "Studies that do show benefit from chemo for early stage cancer are flawed because they do not have the placebo-controlled protocol."
The earliest studies of chemo for early breast cancer DID compare women who got chemo to women who did not get chemo. (Of course! The researchers weren't sure if chemo would work, so it made sense to let some women try and some women go without.) Only after these randomised studies showed survival benefits, did they start comparing newer chemo regiments against older ones. In those cases, they were looking for ADDITIONAL survival improvements. They already knew the old ones were better than nothing, so the question was: are the new ones better than the old ones?
The chemo vs. no-chemo data is also in the LANCET study referenced above. To give you just one nugget of info (from Figure 2 in this study) -- for women under age fifty, 68 percent of those who got chemo were alive 15 years later, compared to 58 percent of those who did not get chemo.
The study also shows data on how the more modern chemo regimens, and the addition of Tamoxifen, improve survival rates even more. For example, in Figure 4, you see that an ER+ woman like wornoutmom (I assume she's ER+ since Tamox has been recommended for her) who gets chemo AND tamoxifen would have an 88 percent chance of being alive 15 years later. (I'll note that nodal status and HER2 status could change that number quite a bit, with more nodes and positive HER2 status lowering survival, and making the treatments that much more valuable.)
This study does NOT include information about HER2 status or Herceptin, AIs, taxanes, etc. -- which have become standard treatments since 2005.
Still, it does show unequivocally that chemo saves some lives. All lives? No. But some lives, and there's currently no way of knowing if you'll be one who doesn't need saving (because your cancer was completely removed at surgery, or because it isn't capable of metastasis), who can't be saved (because it's going to resist all treatments and spread anyway), or who can be saved (because it will be killed by the available treatments).
If you want to give yourself the best chance at long-term survival, you must do the treatments. They are no guarantee, but they will improve your odds, and for some women, they will literally mean life or death.
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Beeb,
You don't seem to understand that taking no therapy is not the same as testing treatment in a trial with a placebo. So Athena is perfectly correct. You are comparing apples and oranges with respect to chemo. Placebo treatment can provide 30%-50% success in trials when compared with pharmaceutical outcome.
*edited for clarity
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Hi,
Have you considered intergrative medicine? That is when a person receives conventional therapies for health problems plus help with nutrition and some supportive things like acupuncture, massage, and other services are also prescribed. Sometimes nutritional supplements are prescribed. Your naturopath might be able to suggest a convenient way for you to do that. You might want to try to do an internet search for integrative cancer treatment and see what comes up. Several well known hospitals in the U. S. offer those services. There are even M. D.s who are trained in integrative medicine and oncology.
Good luck and take good care of yourself.
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I considered the "placebo effect," however, that would have been eliminated in subsequent studies of say, chemo type 1 vs. chemo type 2. On those studies, both arms would have been receiving treatment, so the placebo effect should have been the same. And yet, Chemo 2 proved better than Chemo 1...and Chemo 3 better than Chemo 2. So there must be some "true" benefits to the chemo itself.
(Note: I'm using Chemo 1, 2 and 3 for simplicity. Specifically, I'm referring to the evolving "generations" of chemos, with the first being CMF-like, the 2nd being anthracycline-based, the third being anthracycline + taxane...dose-dense)
But even if you want to argue (and to me it's ludicrous and tons of evidence suggests otherwise) that the entire survival benefit from chemo comes from the placebo effect, don't you still need to get the chemo to get the effect? After all, if you opt out of chemo, your mind will not believe the cancer is being treated with the best that medicine has to offer...hence, no placebo effect cure.
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Athena
I have to commend you on the best post I have seen regarding the evidence pro/con of the protocols under the "standard of care" that seem to drive breast cancer treatment. Thank you for laying it all out in a form that makes sense especially this statement:
"Cancer is, to a large extent, a fear-driven business and frequently therapies with lots of SEs will be recommended and accepted because many patients feel that if they put themselves through hell, or throw the kitchen sink, something good must come out. This thinking has led to over-treatment in many cases. In others, no harm was done. In a few cases, some harm may have been prevented, but there is no scientific way to know for sure with today's technology."
WW
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Following up on ElaineM's suggestion, here's a website that has a lot of very helpful information:
http://www.integrativeonc.org/
Also, keep in mind that sometimes women who advocate for or against one type of tx or another have completely different stats than yours, thus a totally different mindset and understanding about future risk.
I'm really sorry that your medical team hasn't inspired trust or confidence. I know there are women here on BCO who have appealed to go outside of their HMO networks for both second opinions and reconstruction. No doubt it's a pain to have to do that, but I feel if you had better conventional doctors, you might not feel quite as negative about using some conventional treatment for what sounds like an extremely aggressive bc. Deanna
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One of the hardest on the statistics is that they compare it to no treatment and not alternative treatment. I also think of the years that women were given Avastin to treat BC and I am sure they were given the same story this is what medical science has proven as to get a drug apporved they must have had to compile all the data that we all are quoting but later it is removed showing no effects in BC. This is on Dateline. Heceptin I am also told now they are finding won't work without the other theapies. I also believe the improvement in statistics is hercpetin added making older chemo more effective not compared to "no treatment"
I totally understand the unethics in placebos but why when there are people who chose alternatives are they not offered to participate in studies. Dispite all the arguing it is good to have the discussion as usually there are bits of truths to all sides.
I see a few mentions of how this should be raised in another forum so does anyone know of such a forum? I am working on more responses but limited time on computer with little ones..lol
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Wornoutmom: I opted for standard and alternative treatment and have been working with an integrative dr. Get three opinions, but also work with someone who is knowledgeable with integrative therapies. I was doing many alternative, healthy things because I had not been feeling well for awhile. I discovered my BC while going to my integrative dr. Best of luck to you. Just remember, for BC, there is no cure, only treatments.
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This subject always intrigues me... because I so wish that there were more studies, better studies out there.
I went to a Naturopathic Oncologist AND a Medical Oncologist, did a lot of research, and decided what was best for ME in my particular cancer situation. So many people wanted to give me their opinions. "Do a lumpectomy, getting a bilateral is so radical! You should def do a bilateral. You should do chemo because of your age. You should avoid chemo like the plague. Don't do hormone therapy it has horrible side effects. You have to do hormone therapy to survive. You can never drink alcohol again. Wine is fine. Avoid soy products. Soy is okay." The list goes on and on.
Like others have already said..... do the research, know exactly what kind of BC you are dealing with to be able to compare apples to apples for "treatments that have worked/been tested" by someone, get 2nd, 3rd, 4th opinions by a variety of professionals and do some soul searching.
Ultimately, you have to do what feels right for YOU. It is your body. It is your life. You do have options to choose from. You don't HAVE to do anything. You've already made a huge step by having the cancer removed from your breast. What you do next is entirely up to you.
I hope you ultimately find peace in whatever treatment path you decide to take.
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I would LOVE to see any studies about alternative therapies (placebo-controlled or not
Do these exist? Would love to read them.
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wornoutmom.. please know that this section of the board is very much 'infavor' of alternative treatment. I certainly know how scary this is. I don't know that doing what you 'feel' is right is the best for you .. You are 'cancer challenged'.. I would pose your questions on other sections of the board to get a broad perspective. We all want to hear what we want to hear.
Here is a link to a thread with many triple positive women -
http://community.breastcancer.org/forum/80/topic/764183?page=1
There is also a stage III forum in the index.
(personally I would definitely go thru treatment if I were you. I look at my kids and just about die, knowing I'll be leaving them. You are an earlier stage and treatable.)
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Actually avastin works really well but only for a very small number of women so the studies don't support its use across the board. Those women for whom it does work face losing insurance support for a life-savig treatment. Its just not a good example.
wornoutmom, all of the women encouraging you to avoid chemo here had cancers diagnosed ay an earlier stage than your's and were not, except for on woman whose bc was diagnosed very early and is only a year out, her2neu positive. They are not an example for you.
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wornoutmom, so sorry you have occasion to join our forum. I don't know what percentage of bc cases include her2+, but I imagine it's rather small. It can make things very frustrating. BC is as individual as each of us. Stats can be a useful guide for a group, but ultimately we are individuals, and the stats are convoluted at best. They often refer to a 5 year timeframe and no more. They often focus on death by bc and nothing else counts. So if I died of a heart attack that resulted from damage caused by chemo or rads, it's not going to count as a death caused by bc.
Some studies will include numbers that cite death from other causes. Unfortunately, delving into the study itself is the only way to know for sure. Some people can read and understand them, for me they cure insomnia. So it boils down for most of us to choose an interpreter that we trust. This thread clearly demonstrates that trust is vested in widely differing views.
I've been here for a long while now, and I can tell you that I know of just one person who said no to all conventional treatments, including surgery. She stopped posting after a few months, and I don't know the reason for it. Everyone else to my knowledge at least has surgery, and oftentimes chemo and/or rads. If there's any topic where people 'tend' to say no here, it's hormone therapy (tamoxifen, arimidex). I personally had stage 2 lobular and went through chemo/surgery/rads and 2 years of tamoxifen. I felt like crap for a very long time after treatments. None of my doctors were helpful regarding chronic complaints, so I began camping out here to find my own way. This is the kind of topic we frequently discuss in the 'natural girls' thread. We're wanting to thrive and keep a recurrence away from our doors.
My own mom and grandmother are the only two people who would be a 'yes' to your question about opting for surgery only. My mom had bc in 1980 and she's now 83 years old without a recurrence. My grandmother was dx'd somewhere in her 50s and lived to be 84. I didnt' know about all the nuances of stages, grades, er/pr etc until my own dx in 04. I often wonder if I needed anything beyond surgery. For you, however, stage III and her2+ puts you at higher risk of recurrence. I suggest that be where you focus your learning curve. Know the difference between relative and absolute statistics. Previous posters touched on this. Also, the placebo effect is very real. It may not be included in a study on breast cancer, but that doesn't mean it's irrelevant. If you don't have confidence in the choice you make, imho, your outcome will be affected negatively.
I'm also curious about a comment you made about having no cancer cells at this time. Generally speaking, cancer isn't detectable by standard screening techniques until hundreds of thousands of cells are clustered together. There is, however, a CTC (circulating tumor cell) test that's available now. I believe it's an out of pocket expense for most people, but you might find it to be money well spent as you contemplate what path to choose. There are also some tests available for determining the appropriateness for different treatments -- can't recall the name right now. The gist is they take some of your own cells and run a test on specific chemo agents and determine how much response you as an individual would receive from the treatment. I'm not sure if this test is available for herceptin though. Maybe someone else will remember the name of the test I'm describing and/or if it's available for herceptin.
editing add: to my knowledge, my mom and grandmother simply followed what was recommended. They don't totally fit into your question because they didn't refuse chemo or rads; they received surgery alone because that's all that was recommended to them.
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Wornoutmom:
I know how hard it is to make such decisions. Considering that you are facing an aggressive adversary, though, I would agree with Timothy that you need to know exactly what the real statistics are for your type of tumor, and for the different treatments offered.
Though I am NOT a big proponent of chemotherapy myself (for the reasons that you yourself put forth, as you are remarkably well-informed), I would recommend that you keep an open mind about the possibility of undergoing chemo: after all, many, many people have had chemo and are living normal lives afterwards.
As for Herceptin, I personally don't like the ABSOLUTE (versus relative) statistics. The absolute statistics are great, and those are the ones used by pharmaceutical companies. Unfortunately, the relative statistics are somewhat different.
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As for Avastin, I am just wondering what interest none other than the FDA itself would have in writing this about Avastin......:
“After careful review of the clinical data, we are recommending that the breast cancer indication for Avastin be removed based on evidence from four independent studies,” said Dr. Janet Woodcock, director of the FDA’s Center for Drug Evaluation and Research. “Subsequent studies failed to confirm the benefit observed in the original trial. None of the studies demonstrated that patients receiving Avastin lived longer and patients receiving Avastin experienced a significant increase in serious side effects. The limited effects of Avastin combined with the significant risks led us to this difficult decision. The results of these studies are disappointing."
http://www.foxnews.com/health/2010/12/16/eu-curb-roches-avastin-breast-cancer/
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wornoutmom- You have some very tough decisions to make and I truly feel your pain. I elected some conventional treatment but also declined some and am focusing on alternative and lifestyle strategies. Perhaps it would help you to consult with an integrative oncologist? Here is a link to an organization for integrative oncologists http://www.integrativeonc.org/ As I understand they sort of balance both traditional and alternative methodologies and include lots of complementary therapy too. Wishing you strength and clarity.
edited to add-
Timothy- I just read your logical, pragmatic advice. I wish my many doctors had said it so well!
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wornoutmom- I too am sorry that you have had to join this sisterhood. I know you are getting quite a bit of people's opinions on this thread about what you should do, but it is ultimately what you are most comfortable doing. I am also 36 and was dx in Oct'10 during the first week after dx I had all of the normal scans done and right off the bat was Satge IV as there were mets to liver brain and bones. I chose the chemo route with herceptin since I am also HER 2+. I have 3 children as well. Even though I am doing chemo I have been trying to make changes in everyday life such as drinking green tea, working out and use organic foods. My tumors are shrinking and tumor markers went from 280 to 28 as of last week. The chemo is working for me and the SE are not that bad for me. Take into consideration all of your options and how they will affect you and your family then make your decision. Good Luck to you!
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Yazmin, not sure what your point about avastin is unless you are cheering on another treatment failure. My point is that there are some women with mets who have seen regression or have been stable on avastin. Just go to the stage IV section and see for yourself. These women believe they are being kept alive by this drug and have the scans to prove it. Obviously, they are in the minority and the drug has, in general, not lived up to its promise. Which creates a huge problem for the women it did help, few though they may be, because they are going to have to fight for an off label use of the drug. I don't know what the answer is here but I just wanted to point out that the situation with avastin is complicated and should probably not be used as an example of anything.
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Beeb,
In order to have a placebo effect, you have to have a placebo arm in the study to measure against. You can't just add extra chemos to the primary chemo and say there can't be a placebo effect.
For example, 200 women have a headache. 100 women are given aspirin. 100 women are given a placebo. Neither group knows what they are taking. After an hour, 50% of the aspirin-taking women report their headache is gone and 40% of placebo takers report their headaches gone. Do you follow this so far?
So you subtract 40% placebo effect from the 50% aspirin takers and you get a benefit of 10%. Both groups are subject to the placebo effect.
If you add Tylenol to the aspirin takers and also have a placebo group you might get 52% benefit from the aspirin-tylenol cobination and 41% benefit in the placebo group. So you can conclude 11% benefit from the drug since both groups are subject to the placebo effect.
If you understand this, let me know. I'm studying biostatistics right now and that's how they do it. If you disagree with it, you may want to get a book that is better than I am at explaining.
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Beeb obviously knows how the placebo effect works, she was explaining how they try to account for it in the context of cancer trials where they cannot use placebos because you cannot ethically leave someone's cancer untreated. Obviously this is indirect, but you cannot measure it directly without sacrificing lives, which would never get by a human trials board and would never be tried by any reputable researcher and no one would sign up for such a study. You seem to be saying that we can never trust any trial that doesn't use a placebo and therefore we can never trust cancer drugs which (1) doesn't make sense and (2) the placebo effect can be accounted for through the means Beeb described. And opening the trial is not a solution because if its going to take several years, as trials do (usually it takes up to a year to fill the trial, then several more years to test outcome. BTW, the herceptin trial had already been going on for several years when they opened it up to the control arm.) because that would mean leaving a cancer untreated for several years which will never happen nor should it. I get that you would volunteer for such a study, but you would probably be the only one.
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Member, your position rests on the assumption that any drug must necessarily work better than the placebo. That is a huge assumption. It has been proven wrong many times. You can only prove your position by having a placebo arm.
There are treatments that have turned out to be more deadly than doing nothing.
Look, I'm just studying how drugs get FDA approval and what the standards are. If you disagree with the scientific standards, take it up with them, don't insult me. I just thought I could help.
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Approximately 25% of all breast cancers are HER2+. With in that subset I believe less than half are triple positive. The positive thing about being triple positive is there are therapies like Herceptin(with chemo) for HER2+ and Tamoxofen (or ALs if you are post menopausal) to target the ER+ factor.
Maybe I'm crazy but why do you think in a thread within the"Alternative, Complementary & Holistic Treatment" there are only a couple of folks that have refused chemo, only one is first hand story and stage I not 3… yet there are many here that did the chemo. Maybe because the chemo worked more than the alternatives… I'm just sayin' that it's odd there are not more alternative survivors posting given the section of the site you posted this thread.
I highly recommend you also research in the triple positive thread and the Stage III forum section before you decide.
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Lago, most of the people who post here are chemo pushers. Most of the serious alternative and complementary women here participate in other more specialized, sophisticated groups and boards elswhere. So don't count the chemo "ringers" when you are taking stock on BCO.
Also, since you were diagnosed so recently, might I make an older sister suggestion that you take some time to study up and learn from the old timers?
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Hello Wornoutmom: I am sorry this is happening to you...Have you noticed that no one with your diagnosis has jumped in yet and said I was diagnosed with the exact same thing 10 years ago and did not do the treatment and I am fine???? I think every case is different and alot of women do not need some of the treatments. But...Some really do...I would seriously consider what your doctor(s) have to say. Better yet, go get a second and maybe third opinion...Best of luck to you.. PS: I just want to go on record as saying I am so not a chemo pusher....but..consider what you have..
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I do not think you would find many women your stage doing only alternative Tx. You did have mastectomy, but unfortunately you could still have some microscopic cells floating around. Being Her2+ even if you were lower stage you would be offered chemo. No oncotype testing. Herceptin for sure.
You are only 36. Statistics are usually given for next 10-15 years. You would be only 46-51, still very young. That is why onc likes to be aggressive with younger people. Somebody who is 65 or 70 when diagnosed can probably be less aggressive.
I was 42 when diagnosed, my son was 6, and my onc gave me this statistics: 25% of getting cancer back within first 15 years if only double mastectomy. 16% if only Tamoxifen and down to 8% if chemo was added. I started with 25% because I was 42, somebody 20 years older would start with smaller percentage.
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Please note that mollyann always indicates I'm "newly diagnosed and therefore I know nothing" after every post I make. I have done my research and I'm not that newly diagnosed. I'm about to start my 11th moth since I knew I had BC (Official diagnose date was after biopsy but we knew before that. She continues to attack me personally every time I post an opinion. Keep in mind that all she wants to do is discredit me.
Anyone who is in favor of chemo or targeted therapy isn't automatically a chemo pusher.
As you can tell I have told my story and my recommendation. I have not attacked or doubted those who have posted they have survived without chemo. I just find it interesting that more have not come forward. Of course they are in the double secret "specialized sophisticated groups" not like us idiot slobs here.
So where are the links to these forums? 0 -
If you have 100 women taking chemo for stage I and 100 women opting to go without chemo and ther are all registered as cancer survivors and followed by their onc next 5, 10 or 15 years would not that give them information if chemo is working?
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wornoutmom is stage IIIA. I don't think the stats for stage I really apply to her.
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Lago,
I'm curious, how do you manage the time to give out advice from dawn til midnight on every subject?
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The FDA does not allow placebo trials for cancer drugs. What is it that you want me to take up with them? Yes, there are treatments that have turned to be more deadly than beneficial. One was bone marrow transplants for women with metastatic breast cancer. For a while it was popular (and I believe some women still do it) until it was found that for all the downsides, and bone marrow transplants have many serious side effects, the benefits were no greater than conventional chemo. in other words, they compared it to chemo, the standard protocols, not a placebo. Your insistence on placebo armed studies would ensure that no drug would ever be studied. Not sure I understand the point in that.
I really don't think I've insulted you but you are the one engaging in name calling, with this "chemo-pusher" thing. There are many woman who have posted on this thread that they are skeptical of chemo for early stage disease, but since OP is not early stage, she should do it. Is that pushing chemo?
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