Polite Explanations are Welcome....
Comments
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there is a poster here whose husband performs OA.... it would be really helpful if she were to post.
while supposedly this is a forum with a discussion emphasizing alternative therapies and it's polite agreement with them... no other such forum attitude exists here (as far as I've encountered) here at BCO.
dang. alternative treatments can be of such benefit.. why any discussion has to be hijacked with those who have an anti 'big-med' agenda or are 'anti-science is irritating.. I can deal with that i guess.. but it would be far more helpful if those with the strong opinions that are anti medicine would be less shrill.
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and believe me there are women who do have advanced cancer and unfortunately the option of traditional treatment have been exhausted (used up) . It would be really nice if some of the admament alternative treatment cheerleaders would be mindful of that and be helpful rather than disdainful of what is likely their biggest help. it's not about YOU and your ideas versus whatever is out there.. Really!
not in anyway to put alterntive treatments as a 'second' to conventional.. It's a big world and it's all good.
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Member...You say to AA, "We're already seeing fewer women do chemo than when I went through treatment 7 years ago because they are getting a better sense of who benefits and who doesn't. Thats because of research." That point was made by me and several other sisters on the Why I'm Not Doing Chemo thread. I explained that with the OncotypeDX test, fewer women are being recommended for chemo than they were several years ago. And, for sure, a lot has changed since when AA was diagnosed a decade ago, BEFORE the OncotypeDX was put into clinical use.
I agree wholeheartedly with Apple. We all need to support alternatives, while still supporting chemo for those sisters who choose to have it. And, the discussion should not go down the road that mainstream medicine does NOT support researching alternatives. That's the part that ruffles my feathers. When I point to the SOFT trial which is in the process of trying to answer the question if O/S is equal or better than chemo for early stage breast cancer, AA will go into a POLITE discussion of WHY IT'S TAKING SO LONG....as though the question should have been answered 10 or 20 years ago. She dismisses the milestone of the OncotypeDX test that was originally conceived, because physicians knew that they were OVER treating with chemo many sisters. No siree...AlaskaAngel will point to "consumer demand" for chemo that stands in the way of making progress in finding alternatives....And yet we didn't have to look across the pond to find progress.... here we have it, the OncotypeDX test conceived of and made here in the good old U.S. of A. ...sparing many sisters of need for chemotherapy. And...we also have the TailorX trial, which is trying to further assess whether or not even more sisters can be spared chemotherapy....But the data from the TailorX trial will not be forthcoming before 2015-2016....I can only imagine what will happen to "consumer demand" for chemo, if the TailorX trial concludes that more sisters in the "intermediate" area can avoid it.
Yes, AlaskaAngel, I too, have read Marcia Angell's terrific book. I also read John Abramson, MD's book, Overdosed America. I've also read H.Gilbert Welch, Ph.D.'s book Overdiagnosed. Make no mistake about it, I am quite familiar with the Pharma industry and it's influence on medical research and practice. However, I will NOT conclude that perhaps there is a conspiracy or motivation to withhold possible treatments from the sisters. And I doubt that I need to remind everyone here of the great discovery of Herceptin, which was also made here in the USA. There is great research in the field of breast cancer occurring here and throughout the world. I wish everyone would take a moment to remember that and remember all of the sisters who sign up for clinical trials, because without them, milestones would NOT occur.
So I will NOT peace out, or refrain from posting as long as AA continues this POLITE discussion.
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OK, not taking sides here but this is the truth. My breast lump began 25 years ago. I was diagnosed with fibrocystic, told if I don't have it out it would grow larger year by year. I was young, poor and uninsured so I chose to keep my lump. 25 years fast forward, my lump was now the size of a lemon, very visable. On HRT for five years... Lump extened into nipple and dimpled. Lumpectomy, cancer diagnosis, masectomy, you know the drill.
On to see the Onocologist. I walk in, he has my pathology report on his desk. He tells me my tumor was very large (and it was) and that I needed to start chemo right away. I was to have a total of four treatments, three weeks apart for recovery. He says my hair will fall out and there is nothing they can do about that but they would give me drugs so as not to puke.
I explain I had the lump for 25 years so I am thinking perhaps it was a slow growing cancer, fueled by HRT. The lump showed up when I was on birth control. But he replies that is not really possible. Yet that is exactly what happened. For years I have been doing thermograms and monitoring my lump but the last thermogram showed it had rapid growth. I tell him I am afraid of chemo if it isn't really necessary. He replies chemo would help me and not to fear the temporary side effects.
Now I had done my research so I requested the Onco test. He tells me the tumor is huge (again) and that chemo is still my best option. He says the test is very expensive at $4000. I remind him I am insured and I ask if insurance covers Onco. He says yes, they will, BUT it takes three weeks to get the results back and based on his many years of experience, my path report and tumor size he could already tell me my score would be high. And this would only delay my treatments which I need NOW. I ask what he thinks my odds are with and without chemo and he says 33% reoccurance, or one in three, with no chemo and I could slash that figure in half with chemo.
I insist I want the Onco test (that was never offered as I had to ask/demand it). Reluctantly he agrees but says I have to PROMISE to come back for chemo when the test comes back as he already knows my results, yadda yadda. I say I will consider it and get second opinion from my Integrative Doctor.
I get my Onco test back. My score is 22 with 14% reoccurance and it is determined I would not benefit from chemo.
Am I glad I fought for my own best interest instead of just being blinded by fear and the Onocologist expertise? You bet I am! Did he scare me? You bet.
Another example if I may share, was my husband. Triglycerides were 2500 and that's no typo. First Doc said quit drinking beer and have this Nitro if he has chest pains. "What?", I ask? "Can't you do better than that?". We got a letter saying my husband was welcome as a patient but I was not to come back with him. Took our own research and three more Doctors to finally figure out he was pre-diabetic. But still no diet advice. Then he became diabetic. They gave him meds for it. He did not have a heart condition yet. With research we decided to try Atkins Diet--much against his Doctor's advice. Atkins diet, low carb, turned everything around for him without drugs. 3 fish oil pills a day and supplements and here he is today, triglycerides at 80. I realize this is about BC but I am telling you this because I have learned you better be your own best advocate out there.
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Circles,
I'm glad that you didn't have chemo if you didn't need it - this story definitely supports Member's post about the progress of the Onco test and the resulting change in treatments for early stage BC.
I'm also not certain how this story is relevant in a discussion of the availability of ovarian ablation for pre-menopausal women, but it definitely is interesting.
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I do apologize for being off topic. My point is we should all do our own research on treatments to discover options we may not have been aware.
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Circles...A little O/T...on cardiology...Anecedotal experience that the DH had. In addition to having an "orphan" genetic METABOLIC muscular dystrophy, the DH also has heart issues. Thankfully, he is under the care of the most AMAZING endocrinologist, medical geneticist AND both of their dieticians! Despite getting his cholesterol numbers down WITHOUT the use of statins (because he's NOT a candidate for a statin because he gets rhabdomylosis due to his metabolic disorder) he STILL develops plaque. He exercises every day. He also is on a low carb, high protein diet and takes extra strength fish oil. Sooo...everyone, including the cardiologist was at a loss at what to do next. So, they decided to send the DH to a cardiologist who was also an endocrinologist. We waited three months for the appointment and spent close to two hours with this Harvard trained doctor. Half way through the appointment, he went into his file cabinet and pulled out a sheet of paper with all of the alternative treatments that he tries...the list included niacin, fish oil, folic acid, etc..... Told him we did all of them...also showed him which fish oils were better and WHY.... Ended the appointment and thought he should have paid me a co-payment instead of us paying him!
The frustrating thing about cholesterol numbers is that close to half of all people who get cardiac events, have normal cholesterol numbers. Very sobering.... Still much to learn in that category.
If you're interested in where technology meets cardiology...check out Eric Topol, MD's vision of the future...which by the way is happening RIGHT NOW. You may recall, until 2006, Dr. Topol was chief of cardiology at the Cleveland Clinic. He believes a stethescope is antiquated and a hand held ultra-sound machine, close to the size of a smart phone, gives you more information! Furthermore, he is working on a device, similar to a halter monitor which can predict a heart attack approximately TWO weeks before you might have one. Imagine that! IMHO, I believe he is the most brilliant cardiologist in medicine today.....
Glad your husband is doing better. And yes, we need more dieticians directing care...but we also need a better understanding of precisely who is at risk of a heart event.
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Point well made, Circles. I agree - an informed patient is an excellent thing.
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A few pages back AA wrote:
Some of those posting here are firmly against having breast cancer patients be told what all of their possible choices are -- including discussion of the common advantages and disadvantages -- and they believe that the visit to the doctor to discuss therapy should avoid mentioning anything but chemotherapy. They believe that patients don't understand how to choose from all the possible choices, and that the doctor should make that choice for all patients every time.
And all I can say after I pick my jaw up off the floor is SERIOUSLY??
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Yeah, I don't think there is a soul here who thinks we should only discuss chemo with our oncs. Goodness, didn't we all have very broad ranging conversations with our oncs about everything? Let me list what I've discussed with my onc besides chemo: OA, hormonal treatments, diet, exercise, bone density, anemia, menopause, depression, lymphedema, alcohol. I'm sure I could list more if I thought about it.
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One of the reasons that oncologists and reasearchers will strive for better cancer treatments is that they and their families also get cancer and when this happens they want the best care available.
And, having just had my last period one year before I started chemo and having been tested to see if I had hit menopause and then having been treated with an AI I thank my lucky stars that I was not offered ovarian oblation. I took AIs for 4 years and had awful side effects. I took myself off with my doctor's blessing. I can not imagine enduring the fatigue, the joint bone and muscle pain and the other side effects for the rest of my life.
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resemary-b: I don't know for sure if O/A causes those kind of SE's for the rest of your life. I did it 20 years ago and of course was put right on HRT so no way to tell what would have happened if I had not had the HRT. What I did develop was thyroid problems and low libido as a result of the O/A. I've been off the HRT now since being dx about six months ago, and so far all I'm having is some hot flashes that are mild enough to tolerate. The insomnia and such that I was experiencing has basically gone away, perhaps because I am now taking supplements (like magnesium) that my body was deficient in all along and the problem is self correcting. I even notice that my heart PVC's are better. I've only been on the tamox for three days and at a lower dose, so too early to tell if SE's will result.
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Kaara
I know that the joint pain we get as we age is from, in part lower levels of estrogen I don't know about the rest of it, especially the other side effects, like dizziness, that I did not mention but I do know that I would be afraid to take an irreversible step like that without firm proof that it would make a major difference.
It is funny isn't it how each of us has things we will and will not do and for each of us those things are different. I did chemo and almost 5 years later I am glad I did it. As for ovarian oblation, no way, not never not nohow is my gut reaction.There would have to be overwhelming evidence that it ould help and I can see that that is how many women feel about chemo.
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My onc was really dismissive of everything but conventional treatment. Even after I did really well throughout treatment and she said, "I wish we could study people like you," she still discounted all of the CAM therapies/diet/lifestyle changes that I had faithfully done, like it made more sense that it was pure luck. It is too bad.
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Each of us has our own personal experience with the medical system and some of us, not all, are wary of the damages done at times by the professionals who have the authority to advise about treatment.
This is not a black and white issue even though it is much easier to make it into a divisive one as a distraction, and to create disharmony. Not all medical providers are negligent or sloppy or just in it because of the money or the glory, and not all of them are honest, either. Doctors and researchers are humans with the same imperfections as the rest of humanity. They are just as likely to be biased or blind to truth as anyone else is.
Some don't like to question the authority and recommendations of their providers, and some of us do. Sometimes we need to agree to disagree.
Conspiracy is a black-and-white word. People who hate a lot tend to use it fairly easily. I don't believe the failure of some physicians to be professional is a conspiracy. They are just ordinary people who fail to perform their trained skills when they should.
A.A.
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VR,
Just to be clear... My use of Peace Out was meant as a "goodbye" as I was leaving... It in no way was meant as a directive to anyone... -
AnneW,
Your point is well made. The only problem with it is that this forum is specifically for those who have some interest in alternative therapies. This is not a forum for focusing on other therapies.
A.A.
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Bulletin.... AlaskaAngel is moving away from referring to most doctors to just "some" doctors that are failures. A miracle. I guess that must mean there is no conspiracy ( I know, people who hate, love to use that word) to keep alternative treatments from ever becoming mainstream. I mean, come on now, how could just a few rogue doctors create the demand for chemo? I know. As long as those few "failures" don't tell sisters that there are alternatives...then those sisters are going to create this über demand for chemo and then for sure, we will never see new less toxic treatments or heaven forbid a cure that will put the oncology doctors out of business.
So, AlaskaAngel.... Would you like to explain in detail why you BLAME the sisters who choose chemo why they create consumer demand and thwart progress?
Can you explain for those who have come late to the party why you believe POST menopausal women should be offered O/A and kindly explain why there are NO clinical trials or discussions advocating the procedure for POST menopausal women?
Could you then explain in your most POLITE doublespeak why the Oncotype DX test does not encourage the use of LESS chemo since you believe there is no incentive for consumers to refrain from using chemo and yet the NCCN guidelines recommends its use?
And finally, I know I am attacking and bullying you by repeatedly asking, do you think you owe, not me, but the rest of the sisters an explanation why you choose not to tell them the outcome of your physician complaint? If this physician was as awful as you say he or she was, was there a CONSPIRACY to protect that doctor? Or, perhaps was there two sides to the story and somewhere in the middle was the truth? -
V.R.: Give it a rest! I don't feel anyone "owes" an explanation to me on anything! "Repeatedly attacking and bullying"...you said it! Enough...please....let's make this a pleasant place to come for comfort, support, and education...not a battle of words.
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Kaara... Yes! I would love to find comfort, support and education too.
I think all of my questions are as legitimate as her outrageous comments. She need not answer any of my questions. I post those questions mostly for others to ponder. And I think most of the sisters are smart enough to know what the correct answers to my questions are. -
Please remember that this forum is here to discuss alternatives that are used instead of conventional, evidence-based treatments. If you are not interested in alternative treatments, there are many other forums.
Everyone has a place here on the BCO forums, as long as they can remain civil and respectful of others views.
The Mods
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Hi Nancy, thanks for sharing the information about it. Because there are no garantees with any treatment and there is confusion and uncertainty and misinformation about them, I started this whole discussion so that questions could be asked and we could help each other find whatever answers are out there.
After all of what has been said here, there IS still one person who would have made a different choice if she had received accurate information from her oncologist. Her problem was that she had been raised to consider such people as professionals who are "expert" in the field, with sound ethical practices.
While it appears from all we have been able to find out so far that perhaps only a limited number of others would be similarly interested in or benefit from the option of O/A or O/S as alternative therapy to "standard treatment", the fact is that the guidelines are limiting the recommendation for it to a very narrow population for consideration.
I can see where scientific principles would lead them to do that. But those same scientific principles want to be "excused" from having to acknowledge or even care about the flaws in their own beliefs. According to some of the patient replies in this forum, the assumptions that are made include assuming that all medical practitioners are offering (although not recommending in most cases per the guidelines) O/A or O/S to all patients as a choice. Are they? Or are the guidelines subtly encouraging them to provide that information only to those who are already aware of it or who specifically ask for it, unless they happen to be among those for whom the guidelines recommend it?
I am only one person, but my medical practioner, who is at the top of the heap, failed to provide me with honest information about that choice when I specifically asked about it. He may even feel he did it in my own best interests. But he withheld pertinent information to which I was entitled to consider as one option. That information was considered at that time to be relevant by his peers.
The guidelines consider the various options through the narrow viewpoint of what is medically best, and leave it to the medical provider to answer patient questions honestly.
What is missing and was missing for me is that medical providers are not interested or capable of offering the patients the full range of choices that are truly available for consideration. Providers are biased in favor of the recommendations. They are clueless when they recommend expensive, time-consuming, carcinogenic therapies with the known potential for multiple and varied long-term difficult consequences and no definite benefit for the individual patient, how irrelevant or relevant that recommendation is for that individual patient's circumstances. If they are discouraged from mentioning an alternative medically authorized option by both the guidelines and their own bias, then the patient is left to choose among the options specified in the guidelines or going it alone.
I personally think that is highly unethical. Premenopausal women can and have benefitted from being aware of and choosing the alternative therapy of O/S or O/A., and they should be told about it as one viable alternative.
There is a major misconception among patients about the advantages of chemotherapy that is also very hard to "see". When patients mention that chemotherapy doesn't provide the "permanent" annoying effects such as sexual dysfunction, UTI's, etc. that O/A or O/S does, they are fooling themselves. That is true for younger patients, but at the same time, it is less true for older patients and 2/3 of the patients with bc are over age 55. Not only that, but to the degree that a younge person does not have those disadvantages, it also means they have less protection from recurrence.
Is that a difficult concept? From all the discussion so far here, it sounds like medical providers have either failed to convey it to patients or have not had a vested interest in trying to provide it.
All of us have different circumstances to deal with. Some of us do have personal economic considerations that MATTER and have very long-term consequences. After discussing it here, I definitely believe I would have chosen O/A over the treatment that was recommended to me and that failed to inform me that O/A was considered equal to the treatment that was offered to me as a premenopausal patient.
There is no documentation to indicate that this doesn't happen to other patients as well.
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Seriously agree with the Moderators. I may not agree with AA that OA is a great option for pre-menopausal women, but this is the forum to discuss such a thing. I'm surprised at the combative nature of this thread. I really don't think any of the alt threads are going to lead some newly diagnosed person astray.
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Um, yes they do, sweetbean, and I believe you know that. We've seen over and over opinions stated as facts and downright fallacies presented in this forum as pseudoscience, and unfortunately, some women do buy into it, hook, line and sinker. It's a shame, but it happens, so don't kid yourself and anyone else. All medical practitioners have their own interests at heart (another black and white statement presented as fact). If AA would only say "in my opinion," then I doubt anyone would disagree, it's her belief. But by stating it that all physicians are greedy, it's almost as if she wants to start an argument with someone else.
What I still don't get is how to present a different opinion on this forum without being branded a troll or an enemy combatant. Yes, there should be a forum to discuss whatever one wants to discuss, but there should also be room for someone interested in alternative who might not agree with the opinions stated as facts.
One more comment: since when is surgery, i.e. the OA that AA is continuing to obsess about ten years down the road, not standard? I thought surgery was standard, but obviously I'm mistaken.
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digger: I can answer your question about how to present a differing opinion..you do it in a polite manner without attacking, accusing or ridiculing the person you are directing it to.
It's all in the presentation.
My friend did O/A a few years after she was dx and treated for bc because she carried the hereditary gene from her mother's side. She wanted to make sure that she didn't end up getting ovarian cancer. I can see that as an instance where it might be beneficial.
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OA is a standard surgery, but I don't think that it is an standard replacement for chemo, which is what AA is proposing.
I guess I just don't agree about the forums changing too many minds regarding conv vs. alt treatment. I've never seen anyone who was really on the fence go one way because of these threads. I think most women have pretty much made up their minds and then look around on BCO for reassurance - and that goes for conv treatment as well as alt treatment. I've been on these threads since Nov 2010 and I really haven't seen one person go for alt treatment that wasn't already firmly leaning in that direction.
And if you don't want to be branded a troll, you might want to look at your tone. Starting any post with "Um..." is rude and conveys an air of condescension, whether you mean to or not.
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It is hard to accept that any medical provider might not be entirely above failing to disclose pertinent information to patients based on their own personal bias about treatment. But medical providers are humans, and are not immune to human frailties. Hopefully most are highly ethical. But some are not.
In other words:
Unfortunately, some patients do buy into unprofessional medical recommendations hook, line and sinker. It is a shame, but it happens, so don't kid yourself and anyone else.
O/A wouldn't be standard for patients who don't have the hormonal basis to benefit from it. But maybe what is not clear is that O/A would be one option. That doesn't mean it would be discussed as being preferable over other options such as chemotherapy. They would be presented with the statistics to show what the benefit would be for that person. That person would then be able to take into account their own personal situation and preferences. The decision about the importance of it wouldn't be made before the patient even walks in the door by never telling the patient it is one possibility.
I do think there still is confusion about why it is logical to discuss this option. So here is one example.
Premenopausal patient X, who is 55 and HR+, and widowed with 2 children (one of whom who is partially disabled) comes in to discuss treatment options for a stage 1 t1c single breast lump and no evidence of further disease. She is self-employed, with minimal health coverage, and is out-of-pocket to begin with for her oncology appointment. She doesn't know anything about using O/A as one method of dealing with her situation. Surgeon, then onc, then radiologists go over the various standard therapy recommendations for her cancer and talk about lumpectomy, mastectomy, sentinel node biopsy, radiation, and tamoxifen or aromatase inhibitors, and if appropriate, trastuzumab. Adjuvant Online is used to show her the differences in choosing something like tamoxifen for 5 years, or chemotherapy and tamoxifen. Of course, it doesn't show anything about O/A and the oncologist and surgeon have not mentioned it to her as being one option to consider. She adds into the calculation whether she personally has a home situation that would permit her to do the months of treatment with all the transportation and time not working, and whether or not she still would even have any employment to come back to. She believes she is unable to do the treatment and no other treatment is offered. She chooses to do tamoxifen alone, based on her situation, not having ever been told about the less expensive, shorter-term option of O/A or that it might be something helpful for her to consider.
There are some support services that may be available to her, but are they going to be enough to cover her situation? What becomes of her situation if she does the only recommended treatment and has treatment failure?
In the instance where such a patient is at least told about the option of O/A, and chooses it, if she does have treatment failure, her resources are far less depleted in facing the next set of choices.
In the instance where such a patient is not told and goes through the more extensive treatment and then has treatment failure, in her circumstances she may have lost her clients for good, and have put herself and her family through very expensive treatment and difficulties involved with child care, etc.
Does it make sense yet to at least offer O/A as one option, and to include clear, understandable comparison in tools like Adjuvant Online that would allow her to see what the disadvantages and advantages might be for her particular situation?
Or does it make more sense to leave it entirely out of the professional recommendations?
Why would it be ethical not to provide the information and comparison for everyone to see?
Thanks for any polite responses,
AlaskaAngel
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Um, okay. Sorry, I couldn't resist....and the circle continues round and round and round....
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When I arrive for my O/S Lupron injection each month... I get in a line behind all the other sisters ahead of me who are receiving their Lupron injections in lieu of chemotherapy. Again, I will repeat saying that it was my oncologist's suggestion to me, and obviously to many other women that We should all consider O/S.
I think it is fair to say that since AlaskaAngel completed her active treatment a decade ago... perhaps clinical treatments have changed!
Without a doubt, I am sure there are sisters not being told about O/S. But from the looks of things where I get treatment, lots of sisters are dropping their pants for Lupron shots. And it doesn't look like the insurance companies are having a problem because mine is paying for the treatment. -
Part of the original questions I asked also involve a different ethical question.
It may be that those who are more recently diagnosed don't yet have the years of waiting for more progress that ten years brings.
The way in which the trastuzumab trials were done resulted in no one having clear information on just how effective trastuzumab alone is or isn't, or whether it is effective enough for some patient groups but not others.
So it was particularly interesting to me to realize that ten years ago, trials that were done in other countries that compared O/A + tamoxifen to standard chemotherapy for one group of patients at that time demonstrated that the two types of treatment provided equal results. This was news worth considering, especially for countries and patients who didn't have the ability to use the standard treatment with chemotherapy.
Part of what is concerning is the question of the ethics of continuing to insist on standard chemotherapies in combination with newer treatments. Chemotherapy is unpleasant and expensive. If chemotherapy always has to be used together with new drugs, then how can we ever get to the point where we have proof that other drugs are better than chemotherapy?
We learned from other countries that O/A + tamoxifen was equal to the regimens that were more commonly used at that time. We wouldn't have known that if other countries had felt it was "too unethical" to do the comparison.
So if a trial could be done 10 years ago without chemotherapy in order to compare it to chemotherapy, and we valued the results of those trials done in other countries,
"How long will it take for us to get a comparison of either ovarian ablation and trastuzumab alone (or possibly trastuzumab plus lapatinib) for premenopausal early stage HER2 positive bc patients, versus standard chemotherapy, in this country?"
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