Stage 1, grade 1 and pre-menopausal
Comments
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rozem...regarding AA...if you go back on this thread, or other threads, you will note AA's continued vengeance. No matter what you or I or Annice or anyone else says to her, she goes on a tirade. Shame on the physicians! Shame on the researchers! And shame on sisters who have favorable prognoses and are given a CHOICE that doesn't include chemo. We should carry the torch for better research for all sisters! Shame! Shame! Shame! I get it! AA comes to this thread to enlighten us. Sadly, we can't be enlightened and that frustrates her even more. Our ignorance feeds her unhealthy opinions. She needs our pity...more than she needs explanations. There is NOTHING more that you or I can say to her that hasn't be said before. Very sad.
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rozem... Premenopausal women who had completed chemo were eligible to enroll in the trials.
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Hi rozem,HER2 positive patients with tumors less than 1.0 cm, even though they are HER2 positive are apparently not in terrible danger despite being HER2 positive, given that chemotherapy is optional, even for those who are grade 3.
It is the premenopausal patients for whom chemo is optional that it would be helpful to know if OA + trastuzumab is effective in place of chemo + trastuzumab.
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AA
standard of care is any her2 tumor 5mm and over is recommended chemo -
now to get back to OS topic - AA I know you believe strongly in OS in place of chemo because chemo is supposed to do the same thing (stop your ovarian function) well I had chemo and my ovaries are just fine, in fact a year after the zoladex shots, I stopped for 2 months and my periods returned so hence the debate on whether or not I should remove, keep getting the shots or do nothing at all. Both these adjuvant treatments do different things - target different parts of the cancer
hope I am explaining myself correctly!
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Rozem....While AA will claim that patients that have HER 2 positive tumors are not at great risk of occurrence, that is downright wrong. While the NCCN guidelines say patients with tumors greater than 5 mm should consider chemo AND Herceptin, if you do your homework, you will see that, while there isn't enough evidence to recommend it, there is a growing consensus to offer it. In fact, despite AA's insistence that there should be clinical trials encouraging o/s instead of chemo with Herceptin, more and more doctors are even recommending chemo and Herceptin for patients, especially younger ones with tumors even smaller than 5 mm.
Rozem, AA will NOT let go of her beliefs. Many sisters have tried explaining what you and I have said to her. I doubt you will be the last to explain it. Furthermore, I find it appalling that she comes to this thread and tries to appeal to us that we should appreciate how lucky we are that we are offered more choices than other sisters with more aggressive tumors. How absurd!
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To clear up the confusion in VR's post above -- I do not and did not generalize by claiming that all "patients that have HER 2 positive tumors are not at great risk of occurrence."
I agree that " there isn't enough evidence to recommend it, there is a growing consensus to offer it." VR and I are in agreement that the consensus is not based on evidence, but on mere estimated collective opinion.
Opinion is not verified evidence -- in other words, what may seem to some as "growing consensus" may not be "growing" at all, with no scientifically demonstrated "count" -- whether it is just noisier (the same persons estimates being reported over and over); a "growing consensus" is simply an estimation by opinion. I am saying that because they did not include those patients in the trials, it is not the same thing to use an estimate like "growing consensus (but not based on evidence) that these patients need chemotherapy".
This is especially true given that evidence has not been gathered to find out how much protection is available to these very early stage patients from using just trastuzumab with OA.
They have never scientifically demonstrated that NO benefit occurs with trastuzumab used alone, much less that trastuzumab plus OA would not provide adequate benefit -- any more than they have proven that chemotherapy provides any benefit to that group of patients.
VR has "left out" one important difference in her statement:
" how lucky we are that we are offered more choices than other sisters with more aggressive tumors"
It should read:
" how lucky we are that we are offered a different choice than other sisters with a different type of cancer that stands to benefit from adding trastuzumab to OA to achieve the same result for HER2 positive cancer."
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around and around we go AA. There are no studies with the exception of patients older than 70. Shall we begin the debate again why there are no studies? You see AA, your problem is that you think the researchers are choosing not to study the younger patients and that is why you continue this grudge with a vengeance. The only thing that needs to be cleared up is your obstinance.
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Yes. That IS the choice they have made for over a decade now, along with making the choice to instead provide patients with no evidence one way or the other while using "guidelines" to tell patients to "consider" chemotherapy. There is no clear evidence for patients to use in making that consideration because they have chosen not to conduct the necessary studies.
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VR, you are a very knowledgeable person, and very helpful to many patients for whom trials are being conducted to demonstrate what works and what does not. That's wonderful, and I'm glad you are.
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AA....Do you ever tire of playing a charade? As I said to Rozem, perhaps hearing yourself over and over again telling other sisters how the medical establishment fails patients because they CHOOSE not to conduct specific trials for HER 2 positive patients, WITHOUT any explanation as to WHY they choose not to, some how soothes your ego. I guess others can say I enable you, since each time you bring up this subject, I feed your wounded psyche in a most unbecoming way.
Annice...I am sorry that AA has hijacked your important thread. I apologize for continuing this most unwelcomed exchange with AA.
That said, I look forward, along with my brethren of sisters here, which includes you, to continuing this important thread!
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sorry to beat a dead horse but....
lets say a cell escapes (g*d forbid) and its floating around - whether you are stage 1 or 3 or anywhere in between why would you need less treatment to get that cell? is it the life cycle of the cell ? I always pondered this one - maybe someone smarter than me can explain
AA there are trials going on now at DF using taxol alone with Herceptin in the very early stage and I understand they have been very successful. Yes, its still chemo but arguably chemo lite and much less toxic.
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Rozem... you are correct that you would hope to treat any cells that might be floating around. Endocrine therapy was designed to mop up those remaining cells that may have taken hold some place else in the body. Interestingly, I don't want to scare you or any one else reading this, but your body may have cancer cells floating around all the time....The body does a great job most of the time of mopping up those cancer cells before they become dangerous. One of the ideas from the camp that opposes so much population based screenings is that imaging and the blood tests that we currently have do a great job of picking up cancer cells. In fact, researchers know that some small cancer tumors spontaniously disappear on their own and don't require outside help.
They consider this "over treatment." Likewise, they also complain that many of those tumors that get picked up in population based screening, as opposed to "diagnostic" screening (screening when there are symptoms), are more often than not quite treatable and would not have necessarily harmed you in the first place.Now, getting back to AA, she is quite aware of all of the Herceptin studies....Including the one that is being done on "low HER 2 +1 and +2 " patients. Researchers ARE doing very important research on trying to identify which HER 2 positive patients are at most risk of recurrence. Sadly, she puts blinders on her eyes and brain when it comes to those studies. Anyone doing research knows that researchers, through design of their studies, "cherry pick" who can be a part of a study. They also know that in the real world, clinicians use treatments in patients that haven't been "cherry picked" and that can sometimes be problematic. Likewise, as we have discussed with AA NUMEROUS times, MANY studies are PURPOSELY designed to "cherry pick" certain cohorts of patients. The reason why they are designed that way is to PROTECT the MAJORITY of patients that are participating in the clinical trial. Omitting HER 2 Positive young patients is NOT perceived as treating those patients as "lepers". It is designed that way to protect patients. AA will argue that exposing those "leper" patients to "TOXIC" chemicals is UNethical. Sadly, there is NOTHING ANYONE CAN SAY that will seep into her brain and permit her to consider otherwise. And then, telling us Stage 1, Grade 1 (HER 2 negative) patients that we should carry the torch to demand more "equal" clinical trials is PATHOLOGICAL, IMHO. What researchers are doing with most of the trials that they are designing is trying to figure out through meta-analysis which other co-horts might benefit from treatments without exposing them to further risks. In AA perverted mind, exposing patients who might NOT benefit from chemo and exposing them to the RISKS is UNethical. She is correct. BUT WRONG. Over and over again, she has been told that tests like Mammaprint and the Oncotype DX test wouldn't have been developed in the first place if researchers and clinicals didn't think they were OVER treating patients.
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I'm not asking anyone to take up any torch for anyone. Anyone new to dealing with very early stage HER2 positive bc is left completely in the dark in reading the title to this thread that the raging thrill of having multiple trials investigating possibilities such as substitution of OA for chemo in achieving menopause is considered an intelligent possibility... but not for HER2 patients. They wonder why. The answer?"Researchers ARE doing very important research on trying to identify which HER 2 positive patients are at most risk of recurrence. Sadly, she puts blinders on her eyes and brain when it comes to those studies. Anyone doing research knows that researchers, through design of their studies, "cherry pick" who can be a part of a study. They also know that in the real world, clinicians use treatments in patients that haven't been "cherry picked" and that can sometimes be problematic. Likewise, as we have discussed with AA NUMEROUS times, MANY studies are PURPOSELY designed to "cherry pick" certain cohorts of patients. The reason why they are designed that way is to PROTECT the MAJORITY of patients that are participating in the clinical trial."
So.... researchers don't explain why OA would not be practical for substituting in place of chemo for HER2 positive patients. Do they not understand the question or why it is being asked? Are they so high up the ladder that it is considered terribly "rude" and intrusive to even consider the question and provide an intelligent scientifically documented answer, rather than just walk away generalizing about how we have to cherry pick our patients for trials? Perhaps.... maybe.... if they personally had to put aside much of their previous life and devote most of it to lab tests, imaging, clinic visits, multiple drugs that cause discomfort and the uncertainty of whether a variety of SE's will start, stop, last indefinitely or complicate other health problems that come wtih aging prematurely due to chemotherapy, they might allocate some time here documenting why trials are being offered in the hope that OA can be substituted for chemo for the "cherry picked" patients, but why that same application would absolutely not work in combination with trastuzumab for HER2 positive patients.
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rozem,
HER2 grade 3 patients would not receive "less treatment" to "mop up stray cells". They would in addition receive trastuzumab, which is considered to provide additional protection for that type of cancer. We already know that chemotherapy when used without trastuzumab has dismal results. The question is, can these erudite people provide documented proof that when OA is substituted for chemotherapy in combination with trastuzumab for grade 3 very early stage premenopausal patients, it does not provide reasonable protection to those patients?
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AA..."Documented proof".....Keep going, AA! I know the more you bloviate, the more it makes your tormented psyche feel better. However, on the contrary, IMHO it just makes your psyche worse. I guess I should feel like you do, because there is so little research done on studying mucinous breast cancer. Following your logic, my MO should have never created the active treatment plan for me because he was subjecting me to all the harms without any "documented proof" that it would benefit me.
Have you made your point enough yet, AA? Do you understand my point yet? I know you believe you are helping others by pointing out what you think is unjust. However, this is not the place to make your appeal.
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and AA....following your twisted logic, none of us who were given the choice of ovarian suppression SHOULD have been given the choice until there was "documented proof" that it worked. Could we have been over treated? Shame on those researchers and clinicians who offered us that choice while it is still being studied! I'm telling you, AA...take off the blinders!
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and AA...don't tell me that at least they are studying those cohorts. Researchers and clinicians are very aware of the risks and benefits of treatments. That is why they do the studies that they are able to ethically do AND that enough brave souls are willing to participate in those studies. At last count,I've personally told you this at least a dozen times....and that doesn't include the number of times other people have made that point to you.
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rozem, I missed this post of yours earlier, sorry! That is why trastuzumab would have to be done in addition to OA for HER2 positive patients.0 -
This thread is such a good one - so much valuable information and great discussion. I have to say, however, that the tone of the last several posts is very disturbing to me...
I think we all agree that progress towards better treatment is a win regardless of what kind of cancer. I think we are all probably a little frustrated (at a minimum) that there isn't more progress that happens at a faster rate. And I think we all realize that - to some degree - this last part doesn't have an easy fix.
Among many other things, this should be a safe place to voice frustrations. No response to something you disagree with might be a better response than one that sounds like an attack. After all, in the end, we ultimately all want the same thing!
I respectfully ask you to consider this...
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nan...for reasonable people your suggestion is noble. However, my concern is for newbies who read AA's posts and become confused or worse. There isn't a sane researcher who,CURRENTLY, would design a study which she advocates for and enlightened people understand that.
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I understand your point. My concern, however, is that newbies will hesitate to post questions or share their own frustrations based on the direction (tone) that this thread has recently taken...
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nan...I cannot agree more with you! It is a double edged sword that I am well aware of. Unfortunately, comments like AA's cannot go unheeded. I truly understand her pain. Yet, I truly understand as well, how hard researchers and clinicians work each day to make all of our journeys less difficult. Calling HER 2 positive sisters "lepers"? .....while reminding Stage 1,Grade 1, premenopausal sisters that we should remember our other HER 2 positive sisters treatment needs are unfulfilled? What tone do you suggest I take with her, when countless other sisters have patiently explained to her the WHY it takes so long for all kinds of research to unfold? Shall I agree to disagree nicely with her only to worry where she will post next with her OUTRAGIOUS comments?
By all means...if you have a better way to deal with her pathological frustration that only gets soothed by her outragious comments...I'm all ears.
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In part, the problem originates in the completely innocent failure in the OP to distinguish in any way that this particular thread is limited to addressing the concerns of non-HER2 positive patients. Perhaps if the OP indicated that there are no grade 1 HER2 positive patients on the planet, it might create less confusion for the newly diagnosed. For stage 1 patients who are HER2 positive and who are exploring what other stage 1 patients are discussing, neither the title of the thread, the content of the OP itself, or even the titles of the mutiple trials being offered to other very early stage 1 patients provide straightforward indication that these trial results exclude HER2 positive patients.
This is how the question of whether or not very early stage premenopausal HER2 positive patients might reasonably consider OA + trastuzumab instead of chemo + trastuzumab continues to keep them focused on considering only the more limited treatment alternatives. As pointed out, trials take years to reach conclusion, and the more years that go by with lack of investigation in their behalf, the sooner other early stage patients will have an answer and the longer it will be before any very early stage premenopausal HER2 positive patients will even have access to begin such investigation. Whether these patients intelligently choose to accept that continuing lack of access to investigation of that question is really a matter of genuine informed consent.
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AA...the only confusion that is occurring here is being directly caused by your obfuscation and pathological insistence.
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I am dizzy.
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This is a place for support, we have enough on our plates dealing with our own treatments.........
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I understand, Belinda (good comment, School Counselor). I have posted in a different forum and thread specifically related to very early stage HER2 positive bc for that reason. But perhaps there is no place here where such questions are openly and freely welcome:
https://community.breastcancer.org/forum/80/topic/781897?page=13#post_4060536
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Hi Ladies,
Back to the Ovarian Suppression vs Tamox only conversation (since I am a bit lost on the Her2 arguments above). Is anyone here under 40 and thinking of doing the OS? I didn't opt for chemo and just started the tamoxifen (3 days -- so far, just a little occasional sweatiness) and feel ok with it. I wonder if anyone felt nothing with the Tamox? Or do side effects start much later?
As for the OS, I am hesitant to do the OS since I want to maybe have another baby one day (with the 3 eggs left rattling around my ancient ovaries), AND I don't have enough info on what happens with the OS. I feel like (and I'd love to be corrected/informed), that doctors like to take out things and treat the disease you have NOW and are less concerned with diseases that might occur because of XYZ procedure. Cases in point, the appendix and the uvula -- tissues that used to be removed all the time with no thought as to their purpose. Now we know they provide important functions to the body. Obviously OS helps women with hormone positive cancers, but how does one weight the clinical trials with your very personal version of the cancer?
Thoughts?
Happy belated summer solstice!- GG
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gowanus...Here's a good overview:
http://m.jco.ascopubs.org/content/30/5/479.full
Many of us have chosen O/S...that's why we are looking forward to the data from SOFT and TEXT that will hopefully be presented at December's annual San Antonio Breast Cancer Symposium.
I wish you well.
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GG I had my 1st side effect at 2 weeks. I had 3 whole days of weird bone pain in my leg. My onc said to stick with it and I have. I'm on my 2nd bottle and now just have nightsweats and a bit of insomnia. No joint pain, bone pain or anything else.
I'm 45 a bit older than you and I am hoping to get my onc to agree to OS in August when I go back.
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