Polite Explanations are Welcome....
Comments
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Seaside... As Senator Daniel Patrick Moynihan once said, "Everyone is entitled to their own opinion, but not their own facts.". I don't mind her having opinions. However, I mind when she assumes, AS FACT, that most sisters are not being properly informed of their options. I mind that she matter of factly explains that research is being held up because chemo is way too profitable and there is little incentive to change course. IMHO her opinions are dangerous to vulnerable sisters. Sisters need to be enlightened, but not by someone who admits to being chemophobic.
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SpecialK,
One thing that is makes it especially difficult to interpret each other's focus that we are often blind to is that 2/3 of all bc patients are 55 or older, and the effects and options are so different for most of those who are younger and those who are older. Another blind spot is that most people posting are not long-term survivors and are only 2 to 5 years out from treatment so have yet to experience the long-term effects.
I often catch myself not grasping the difference in perspective related to individual posts due to those two un-obvious factors. The natural tendency is to assume everyone else thinks much the way "we" do, when their situation is in reality very different.
I don't think O/A or O/S is going to be something that most bc patients would get much benefit from. But because of so many different personal situations that bc patients have, I think oncs should go over it with patients. I can see where oncs may tend to make the assumption, just like many of us might, that cessation of menstruation is definitive but it may in fact not be. So for some it might mean the difference between doing ANY therapy and doing a therapy that is as brief as possible.
A.A.
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I would appreciate it if the link could be posted that is to a post specifically made by me and "matter of factly explains that research is being held up because chemo is way too profitable and there is little incentive to change course."
I definitely do believe that as consumers we do provide major influence fiancially on what types of treatments are pursued and available as "standard therapy".
A.A.
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AA - I can imagine if you were offered OA and chose to do it to avoid chemo, you would probably be complaining about that and probably had a recurrence by now.
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I think the points and counter points were made about five pages back, and now, please, it's time to move on.
The ongoing harrassment of any individual on this site should be dealt with by the moderators. I have seen it far too often, mostly in the alternate threads, and I've only been on this site for about six months.
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susieq58,
We can not know one way or the other because it, along with my HER2 positive status, was never mentioned to me by my onc.
Nancy91355:
Yes, as far as I know O/A or O/S does nothing to kill cancer cells. But it appears that chemotherapy does not kill stem cells, either. Some patients can consider those factors when making the choice as to whether to do briefer treatment such as OA or OS vs chemotherapy that matches the patient's cancer somewhere around 1/5 of the time.
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Here are three posts of yours AA. I did not edit them. They can be found in the "Why I'm Not Doing Chemo" thread. Would you like to clarify the 4th paragraph in the Jan 12 post of 08:13pm?
Jan 12, 2012 08:13 pm, edited Jan 12, 2012 08:22 PM by AlaskaAngelAlaskaAngel wrote:
hillck,The problem is an ethical one. Chemotherapy, even though it has a fairly poor track record of being effective, is the standard against which any other treatment has to be measured, which prevents any possible better solution from being tested without chemo. Yet there is the belief among us that "someday, something better will be available". If we pretend that trastuzumab never came along, and that "something" was discovered that genuinely was as good as chemo or better but with fewer side effects and requiring fewer support drugs and fewer lab tests, etc., we still would not be able to find out whether it actually could stand on its own because it would have to be given with chemo as an ethical practice. How would we ever get to the day where "something better will be available"?What happened with trastuzumab is that by designing trials for participants who were limited to patients at higher stages and excluding patients at the lowest risk, it was possible to at the very least try to see if "something" added to chemotherapy could improve outcomes for patients with breast cancer that was considered especially fast-growing. This was also done in part because they weren't sure how dangerous the other problems with it might be, such as cardiac damage, and it didn't make sense to expose patients at lower risk to the unknowns of those kinds of problems with trastuzumab.I don't think anybody was deliberately "suppressing" trastuzumab. By getting it through those trials, it provided better results for those at higher stages, and that is very much worth doing. But one has to realize also that IF early stage patients had been included in the trials, the results would not have been nearly as dramatic, because proportionately fewer early stage patients would ever recur anyhow. It worked -- as long as we don't ever ask that chemotherapy not be part of the solution.As I mentioned earlier, as long as patients (the consumers and their insurance companies) continue to be satisfied with doing and promoting chemotherapy for others, where is the impetus going to come from for the development of better treatment? Right now, as long as oncologists and PCPs provide it as the standard of care for consumers who promote it, they are covered and make a living with it, and are seen as dedicated professional providers for doing so. And those in poorer situations elsewhere can't afford the chemo, much less the trastuzumab, but they don't have a voice as consumers anyhow.Until patients (consumers) show more interest and less support, everything will have to spend time being shackled to chemotherapy. A.A.P.S. There actually are a number of HER2 positive bc patients who have had to go without any herceptin because they would not do the chemotherapy. Is that a terrific ethical outcome of keeping chemotherapy as the standard of care?Jan 12, 2012 09:30 pmAlaskaAngel wrote:
VR,I do respect the efforts being made, and I'm sorry if I indicated otherwise. But I do also think that on an unemotional and logical basis, consumer demand is very effective in keeping the status quo in place. There are certainly low-risk patients who are recommended to do ovarian ablation without chemotherapy. I still have no answer from anyone as to why ovarian ablation is not included as a factor in such sites as Adjuvant Online for all patients to consider and to choose from based on their individual risk and preference.Jan 19, 2012 03:36 pmAlaskaAngel wrote:
Beesie,
I understand your concern about wanting to keep this discussion focused on evebarry's situation. I think your posts are very helpful in clearing up the confusing impressions people have, including me, about treatment. I think it is valuable for evebarry to get a stronger sense of risk vs benefit.
I do not value the active cooperation by patients in the continued application of lack of investigation into better alternatives by assigning them to some other time and place. Medical practice responds to consumer demand. It is one reason why it is so difficult to get drugs like trastuzumab approved at all. I don't think it is harmful to more clearly define any of this as a part of evebarry's thread, for her to consider.
A.A.
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VR... I get what you're saying but will also throw out there... some doctors are far more in tune with current knowledge than others... By current standards, my tumor would have been a big fat 'duh' for chemo and, in fact, that's what my MO recommended...
After my Oncotype came back low, it was determined that chemo would not help me.... While he was OK with my decision, I still think it was hard for him because it relied on a new test and totally flew in the face of conventional wisdom! Made my decision and no second guessing now! Though time will tell...
We all need to do the research and determine what is the right path for us... I'm sure we all remember those early Googling days and I really don't think that any one thread here on BCO influenced us one way or another.... -
Nancy: Here's some background info on O/S vs. chemo that I also posted on the Why I'm Not Doing Chemo Thread:
Jan 19, 2012 08:45 pm, edited Jan 19, 2012 08:46 PM by voraciousreadervoraciousreader wrote:
For those of you interested in ovarian suppression vs. chemotherapy in ER+ /HER2 negative tumors, there ARE several studies. Keep in mind, though, one of the studies (PERCHE) was closed early due to lack of partipation. If anyone has followed this thread, you will note that I mentioned earlier, that the heroes in this story are those sisters who participate in clinical trials. Below is a retrospective study that looked at all of the studies concerning ovarian suppression vs. chemotherapy. Despite what Alaska Angel says, there are many ongoing studies. But, as Beesie mentioned, more often than not, studies are not completed and solutions forthcoming in the timeframe when we need answers.
Again, I wish that AA would take her discussion elsewhere because, Eve's situation, has NOTHING whatsoever to do with ovarian suppression since she is menopausal and is HER2 positive.
And, I want to point out once again, that despite the fact that AA was NOT offered ovarian suppression as an alternative to chemotherapy, I was and so are many women nowadays. Furthermore, as mentioned earlier, with genetic screening, more and more women who have ER+ HER2 negative tumors are able to defer chemotherapy. Not sure why she is hell bent on questioning the motivations of researchers and clinicians. However, I think this retrospective analysis is a testament to the hard work that researchers are doing as they try to unravel the mystery of how to best treat patients.
Cochrane Database Syst Rev. 2009 Oct 7;(4):CD004562.
LHRH agonists for adjuvant therapy of early breast cancer in premenopausal women.
Goel S, Sharma R, Hamilton A, Beith J.
Source
Medical Oncology, Sydney Cancer Centre, Royal Prince Alfred Hospital, Gloucester House, Level 6, RPA Hospital, Missenden Road, Camperdown, NSW, Australia, 2050.
Abstract
BACKGROUND:
Approximately 60% of breast cancers amongst premenopausal women express the nuclear oestrogen receptor (ER+ breast cancer). Adjuvant endocrine therapy is an integral component of care for ER+ breast cancer, exerting its effect by reducing the availability of oestrogen to micrometastatic tumour cells. Endocrine strategies in premenopausal women include oestrogen receptor blockade with tamoxifen, temporary suppression of ovarian oestrogen synthesis by luteinising hormone releasing hormone (LHRH) agonists, or permanent interruption of ovarian oestrogen synthesis with oophorectomy or radiotherapy. Aromatase inhibitors are also available with concurrent suppression of ovarian oestrogen synthesis, either through LHRH agonists, surgery, or radiotherapy. Chemotherapy can also have an endocrine action in premenopausal women by interrupting ovarian oestrogen production, either temporarily or permanently. International consensus statements recommend single agent tamoxifen as the current standard adjuvant endocrine therapy for premenopausal women (often preceded by chemotherapy), and the role of LHRH agonists remains under active investigation.
OBJECTIVES:
To assess LHRH agonists as adjuvant therapy for women with early breast cancer.
SEARCH STRATEGY:
The Cochrane Breast Cancer Group Specialised Register was searched on 19 February 2009. This register incorporates references from CENTRAL (The Cochrane Library) (to 2002), MEDLINE (1966 to July 2008), EMBASE (until 2002); and handsearches of abstracts from the San Antonio Breast Cancer Symposium, American Society of Clinical Oncology Annual Meeting, and the Clinical Oncological Society of Australia Annual Meeting. MEDLINE references (from August 2008 to 19th February 2009) were checked by the authors. The reference lists of related reviews were checked. A final check of the list of trials maintained by the Early Breast Cancer Trialists' Collaborative Group was made in January 2008.
SELECTION CRITERIA:
All randomised trials assessing LHRH agonists as adjuvant treatment in premenopausal women with early stage breast cancer were included. Specifically, we included trials that compared:(A) LHRH agonists (experimental arm) versus another treatment;(B) LHRH agonists + anti-oestrogen (experimental arm) versus another treatment;(C) LHRH agonists + chemotherapy (experimental arm) versus another treatment;(D) LHRH agonists + anti-oestrogen + chemotherapy (experimental arm) versus another treatment.
DATA COLLECTION AND ANALYSIS:
Data were collected from trial reports. We reported estimates for the differences between treatments on recurrence free survival, overall survival, toxicity and quality of life using data available in the reports of each trial. Meta-analyses were not performed because of variability in the reporting of the trials.
MAIN RESULTS:
We identified 14 randomised trials that involved over 13,000 premenopausal women with operable breast cancer, most of whom were ER+. The numbers of trials making the different comparisons were:(A) i. LHRH versus tamoxifen (three trials),ii. LHRH versus chemotherapy (four trials);(B) i. LHRH + tamoxifen versus tamoxifen (two trials),ii. LHRH + tamoxifen versus LHRH (three trials),iii. LHRH + tamoxifen versus chemotherapy (two trials),iv. LHRH + aromatase inhibitor versus LHRH + tamoxifen (one trial);(C) i. LHRH + chemotherapy versus LHRH (one trial),ii. LHRH + chemotherapy versus chemotherapy (five trials);(D) LHRH + tamoxifen + chemotherapy versus chemotherapy (three trials).The LHRH agonist in most of these trials was goserelin.For most of the treatment comparisons there are too few trials, too few randomised patients, or too little follow up to draw reliable estimates of the relative effects of different treatments.(A) LHRH monotherapy: results suggest that adjuvant LHRH agonist monotherapy is similar to older chemotherapy protocols (eg. CMF) in terms of recurrence-free and overall survival in ER+ patients. There are insufficient data to compare LHRH agonist monotherapy to tamoxifen alone, but available results suggest that these treatments are comparable in terms of recurrence-free survival.(B) LHRH + anti-oestrogen therapy: there are insufficient data to compare the combination of an LHRH agonist plus tamoxifen to tamoxifen alone. Results suggest that the LHRH agonist plus tamoxifen combination may be superior to an LHRH agonist alone or to chemotherapy alone, but the chemotherapy protocols tested are outdated. The data comparing LHRH agonists plus aromatase inhibitors to LHRH agonists plus tamoxifen are currently inconclusive.(C) LHRH + chemotherapy: there are insufficient data to compare the LHRH + chemotherapy combination to an LHRH agonist alone, although results from a single study suggest comparable efficacy in ER+ patients. There is a trend towards improved recurrence-free and overall survival in patients who received an LHRH agonist plus chemotherapy combination in comparison to chemotherapy alone.(D) LHRH agonist + chemotherapy + tamoxifen: there is a trend towards improved recurrence-free and overall survival in patients who received an LHRH agonist plus tamoxifen plus chemotherapy in comparison to chemotherapy alone.There are insufficient data to assess the effect of the addition of LHRH agonists to the current standard treatment of chemotherapy plus tamoxifen.Endocrine therapy with LHRH agonists appears to have fewer side-effects than the forms of chemotherapy assessed. The optimal duration of LHRH therapy in the adjuvant setting is unclear.
AUTHORS' CONCLUSIONS:
Overall, the data from currently published clinical trials of LHRH agonists in the adjuvant setting for premenopausal women with endocrine-sensitive breast cancer are supportive of clinical benefit. Nonetheless, definitive comparisons against current clinical standards of care that include third generation chemotherapy regimens and tamoxifen are required before their place in the adjuvant setting can be properly defined. The authors conclude that the current data strongly support the continuation of current trials that definitively compare a variety of combinations of LHRH agonists and anti-oestrogenic strategies to the current standard of five years of tamoxifen.
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I'm still waiting to see the post that "matter of factly explains that research is being held up because chemo is way too profitable and there is little incentive to change course."
Consumers do provide major financial support for continuing standard therapy, and as long as they do so, there is little incentive to change course.
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I personally note that the Authors Conclusions noted at the end of that post fail entirely to suggest the possibility of comparing such things as O/A or O/S, and/or intact immune systems + trastuzumab (and possibly lapatinib, although that is a more recent bit of information than the study cited) to chemotherapy regimens and tamoxifen. Perhaps that would address some of the more aggressive cancers.
This is particularly appropriate given that the average age of HER2 positive patients is younger than the average age for the general bc population, and would be more likely to benefit from premenopausal treatments.
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Seaside...with all due respect to you and to your MO...I see you were diagnosed in 2009. While the OncotypeDX was first approved for use in 2004, it wasn't until 2011 that the NCCN guidelines included it in it's recommendations. So, it is understandable that your MO was hesitant about NOT offering your chemo. The bottom line is that you ultimately was able to make an informed decision about your treatment, which you don't regret. And that's how it should be for all of us. I understand that for some women, they do NOT arrive at making an informed decision, or may in the long run, regret the decision they made. However, for MANY of us, we are informed about all of the possible treatments, as well as alternatives and ultimately make our choices and then move on with living. Unfortunately, AA chooses NOT to move on and prefers to cast doubt on the medical community using a wide swath.
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I'm fine with the understanding that not all oncs fail to provide the pertinent information, and not all oncs do provide adequate pertinent information. I think we all wish they all presented adequate pertinent info all of the time.
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You imply in this statement of yours AA, that there is NO incentive for researchers to promote new therapies since "consumers," "insurance companies" are "satisfied" and "oncologists and PCPs make a living with it."
AA says"
"As I mentioned earlier, as long as patients (the consumers and their insurance companies) continue to be satisfied with doing and promoting chemotherapy for others, where is the impetus going to come from for the development of better treatment? Right now, as long as oncologists and PCPs provide it as the standard of care for consumers who promote it, they are covered and make a living with it, and are seen as dedicated professional providers for doing so."
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Yes, AA, I have a wish list too... I wish that no one ever got cancer and that we wouldn't need oncologists to provide adequate pertinent information, ever.
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I asked a question.
Based on the current status quo (i, e, as long as oncologists and PCPs provide it [chemotherapy] as the standard of care for consumers who promote it, they are covered and make a living with it, and are seen as dedicated professional providers for doing so), can you answer the question:
Where is the impetus going to come from for the development of better treatment?
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I went through making my decisions alone as well, Nancy. And I am the primary caretaker of my disabled husband. I worry every.single.day more about him than I do myself. I know for all of us how frightening getting a diagnosis of BC is. We all try to make the best decision with the best available information.
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Possibly current economics will provide better incentive for progress with other therapies. Given that Europe is moving into a time of greater economic pressure, and has been more inclined to accept alternative therapies for research, it is possible that may allow more emphasis on more thorough investigation of less toxic (and less expensive) therapies.
However, less expensive doesn't always mean more effective, and can also mean less choice among very spendy pharmaceuticals.
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DOES THIS SITE HAVE MODERATORS???? IT"S ENOUGH VORACIOUS READER!!! YOU'VE CROSSED THE LINE!!!!!!! IT'S TIME FOR YOU TO GROW UP.
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AA... Will you answer my question first? What was the outcome of your complaint?
Regarding YOUR question... So you don't deny that you said consumer demand for chemo inhibits the impetus to find new treatments? And now you want to know where the impetus to find new treatments will come from? That's a wonderful question. The next breakthrough will be occur despite consumer demand for chemo. The impetus will come from the bright researchers who are toiling in their labs and are cognizant of the fact that far too many sisters are being diagnosed with and lost to BC. -
SpecialK, it's unfortunate that you still got BC despite already having had surgical ovarian oblation.
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And don't forget... The heroes in this journey are the sisters who participate in clinical trials.
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VR,
Didn't know that the Oncotype had made it into the NCCN guidelines... Haven't read up too much since my diagnosis but, will check it out!
Did want to clear up something in my previous post... My MO was not hesitant to offer chemo. In fact, it was his only recommendation. It was me, after reading here at BCO and elsewhere that asked for the Oncotype... He basically said, well sure, we can do that but, given the size, i'm certain it will come back in the intermediate to high range.... Nope,..It came back low risk! I do trust this doctor and think he is just brilliant BUT I also think it's really tough for them to go against all they have known and embrace the new research...
I'm not sure that anyone's message is that all doctor are incompetant so the message is, you just don't know...So you need to be your own best advocate...
And i'm not really sure that whether this particular thread is factual or not is really going to amount to anything meaningful for anyone whether they are current members here or those just starting out.... -
I appreciate the many thoughtful and polite comments here, including those who agree with me and those who disagree politely. I've learned quite a lot from many of you. This is a forum for discussion emphasizing alternative therapies and I'm thankful for those who have been polite enough and intelligent enough to recognize and honor that.
AlaskaAngel
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Seaside... I hope new sisters are not left with the impression that most doctors either have an agenda or are incompetent. That's why I am forcefully countering AA's statements.
I am glad you got the help here to guide your decision and push to have the Oncotype DX test done. Hopefully now with the test recommended in the NCCN guidelines, the process will be easier for future sisters. -
VR, good one.....Goodyear blimp.
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chiluvr, you made me giggle.
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VR,
That's the point I was trying to make! There is no need to forcefully counter anyone's statements or opinions on any thread as I'm thinking no one thread is going to influence anyone one way another.
Rather than arguing who's right or wrong ad nauseum, I wish that we would just choose instead to inform and recognise that some will accept the information and others will not and will need to make their own way...
Anyway.... That's it for me on this topic.... Peace Out! -
Racy - unfortunate is right! Unfortunate that we are all here!
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Still completely confused as to why this is even an issue. AA you say most women will not choose OA as their main treatment if they are post-menopausal. Yesssss, I can't imagine why they would. I can't imagine there would be much benefit at all. Hey, losing weight has been tied to lower recurrence rates. But I can't imagine oncologists prescribing Weight Watchers as the primary treatment for breast cancer. Perhaps it helps around the margins, but cancer is a mighty foe and weight loss is just not going to be enough to do the trick. This is particularly true for those of us who are not overweight -- which I think is the best analogy for post-menopausal OA.
There is really no reason to think it would do much good and i would prefer that research be dedicated to teratments that will. You should support this even if -- especially if -- you are anti-chemo because the better the research, the mare targetted and less toxic the treatments. 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.
Special K raises the point that I did, that OA has permanent side effects that can be worse in the long run than any adjuvant treatments. Why would you do this for very little benefit?
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