HER2+ and no chemo for early stage?
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Thanks kayb, I know you are serious, and I am equally so. Whatever the reasons are, they are not publicly made available for patients to consider, for no clear reason. It appears it is at least as important not to tell as it is for patients not to ask.
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Not at all, kayb. I am disappointed that no medical reporters have given it any thought in our behalf, to ask it in our behalf, to provide any explanation for it. I'm not a Slamon or a medical reporter.0 -
kay....AA's lack of interest ( not disinterest)...is not so baffling! She believes sisters need to know about the potential long term side effects of chemo. That is quite honorable. However, what is not valiant of her is her desire to put doubt into the minds of others while bashing those people who are devoting their lives to saving lives. I think she is afraid of looking elsewhere to help find the answers to her concerns. Instead, rather than look for answers that might help herself and others, she prefers to wallow in her pain and allows that void in her life to fester. I find being an advocate brings me peace of mind and spirit. It empowers me. Could I fall into that same void that she is in? Absolutely not! When I started this journey I was as much afraid as everyone else. My treatment wasn't and continues not to be a picnic. Do I wish there was more research out there that can direct us? You bet! But rather than be embittered, I choose to be empowered. AA should not baffle you. She deserves answers to her questions, but she will not find those answers here. It is really up to her to decide how she wishes to move forward on this journey. She can continue obfication. Or she can direct her journey toward finding answers that will make the road kinder and gentler. Most of us do eventually make peace with ourselves to ease that journey. Sadly, she hasn't quite done that yet. Not sure if a group hug is going to help her. She has the compass. Hopefully soon she will choose the right path....she has been in pain much too long.....
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VR, you are very knowledgeable about many aspects of bc, whether or not you've had chemo; it simply is one basis for considering the value of your opinion. Having personally had to accept and then complete chemo is only one basis for considering the value of my opinion.
Patients today are receiving more information to consider than I received. That's great. I would like that improved information provided to patients these days to also include the answer to my question, which no one here has been able to answer.
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AA...so now you also blame the medical reporters for not asking the right questions???!!!! Look in the mirror and see if there is someone else who you should blame!
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AA... We have provided you with an answer. Empower yourself by asking those questions to the medical establishment and the medical reporters.
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were you not satisfied with Annice's response? I guess not. Because you keep asking us for an answer that can't be found here.
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Patients today are receiving more information to consider than I received. That's great. I would like that improved information provided to patients these days to also include the answer to my question, which no one here has been able to answer.
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AA if there is a dearth of answers here...perhaps this isn't the place to get you questions answers. And if you think newbies should have the answers ....then direct your questions elsewhere. Slamon, NIH, or medical reporters. And once you get satisfactory answers...by all means...let us know.
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kayb, I am following your suggestion, and will post if I receive any response from the suggested source.
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kayb, I received a prompt, brief, but thoughtful response.After thinking it over and putting other considerations together with it, my impression is that a trial for early stage use of trastuzumab alone by younger patients is not yet happening due to a combination of factors, not the least of which is our own tendency to buy into doing therapy that is useless for most as long as individually we think it "could" work for each of us as individuals.
The ethical quesion of patients undergoing expensive and difficult treatment that does nothing for most early stage patients isn't valued enough to give it much consideration. It is easier to get the money to pay for overtreatment from patients, insurance and the government than it is to get the money to conduct a trial for that group of patients.
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AA....as you are aware, recall we have previously discussed the sea change years ago involving the idea that there was over treatment using chemo on many early stage patients that had ER fueled tumors that were also HER2 negative. That idea led to the development of the Oncotype DX test which led to sparing many patients of chemo. I don't know who you are quoting, but I beg to differ with their idea that those in healthcare and insurers are not interested in finding out whether or not sparing early stage HER2 positive sisters of chemo is a possibility. Are clinicians, researchers and insurers not interested or concerned about how many patients will be overtreated with grueling therapy that will only ultimately benefit few? I think not! I think they are concerned and interested! As Dr. Brawley mentions in his book, How We Do Harm, the medical establishment understands more does not necessarily mean better! Years ago, I dont think many people would even consider that idea. But, the elephant in the room that the reply that you posted doesn't address returns back to the original question of how a trial can be designed without putting young patients at a meaningful risk? And if you can't get enough patients to enroll, then what good is having the trial? I appreciate the conviction of the argument that so many patients are being put at unnecessary risk by giving them the chemo, but what could the possible trial look like without jeopardizing young patients' lives? Round and round we go again!
And I will leave you again with another idea of Dr. Brawley's. He tells us we need "rational" healthcare. Is it "rational" to give so many patients chemo when we know it benefits a few? Clearly, no! But how do we get from here to there? Probably in small increments. Beginning with the trial on older women. Maybe one day using genetics and N of 1. Baby steps.. But here is the biggest mammoth.... Population based screening mammograms. So what does that have to do with this topic? We are seeing more and more studies questioning the use of population based mammograms. The numbers of lives that they are saving is questionable. Don't you think we are over screening and over diagnosing and over treating the many to save the few? Both of these issues beg for the answer to the question how do we help the most people with the least amount of harm?
As the mammography debate rages on, I haven't an answer! The only thing I do know is that the medical establishment IS interested in sparing all of us unnecessary screening and treatment. I don't think its fair to say that they are unconcerned about harming many to help a few. The quandary for them and us is to understand how we do harm, which I do think enlighten people know, and then figure out how not to!
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VR, on the whole, medical providers have good intentions. I am just saying that in the decision-making process for whether or not such a trial for younger early stage HER2 positive patients would be offered, the question about the ethic of treating so many who do not benefit is not given much consideration. I'm not saying that the profession doesn't care.However, when it comes these patients and this issue, unfortunately the actual track record shows that despite "caring" practitioners, trial after trial for patients like yourself are designed and funded, leaving out any arm for early stage younger HER2-positive IDC patients to participate.
As patients we are directed toward continuing the standard treatments that largely overtreat, and the only alternative is to opt out, and have no way to document outcomes. As patients we don't have the power to authorize a clinical trial. And our continuing participation in standard treatments, given such lmiited options, contributes to the influence that money plays in continuing the limited choices presented to us.
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kayb, I understand your desire to obtain a quote from me, but I personally do not publicize privately sought and offered information from public figures without any authorization, and I did not promise to do that. I said I would post after obtaining it, and I have done that. I do not pretend that my statements represent those provided by any public figure. My post indicates that the response I received helped me to understand why such a trial is not being offered.0 -
AA - you say "I am just saying that in the decision-making process for whether or not such a trial for younger early stage HER2 positive patients would be offered, the question about the ethic of treating so many who do not benefit is not given much consideration."
The other question is the ethic of risking people's lives by not treating them properly - that's why they won't do it.
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AA...again....you are running laps with me. Your statement that much ethical consideration of treating so many young people without considering the harm is patently false!
As Professor H. Gilbert Welch was asked recently about the recent New England Journal of Medicine article about the latest group to denounce population based screening mammograms, his reply was,"The times they are changing.".
These debates would not be possible if there wasn't a belief in over treatment and its harm. Shall I mention the names of others who also worry about the ethics of over treatment? Harvard professor, John Abramson and Harvard professor and former editor-in-chief of the New England Journal of Medicine, Marcia Angell to name just a few!
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And citing expense as the single most important factor playing out here in the discussion of the ethics of over treatment is a topic unto itself. I do agree that money clouds many of the decisions, some for good reasons, but also sadly for as many bad decisions. I don't think it is fair to get into that side of the issue with the exception of saying that it is a factor.
That said, I don't believe that the positive idea of chemotherapy is as dogmatically entrenched in the minds of the medical establishment as it was a decade or two ago. With that in mind, I stand by my opinion that the medical establishment is very considerate of their experiment designs due to their ethical oath of "First do no harm". As Dr. Welch has said, which should give you and everyone hope, is that the times are changing, slowly at best.
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Hikingandhorses, i would love to know what your oncologist suggest and what treatment you'll be going ahead with!
I'll be making my final decision most likely on Wednesday.. after getting my echogramme done on the heart (pre-Herceptin baseline) .. .still deciding between FEC-TH or TCH! ladies, after much deliberation, i would think it wise for me to just do the chemo+herceptin and stop overthinking about it. There have been many times while reading, i wonder, WHEN will they do the just herceptin trials, or WHEN will certain markers be better established to know whether chemo will work on me, and WHEN will alternative therapy finally get enough funding to be properly tested on humans so we don't need drugs any more.. and the list goes on.. through all the emotional ups and downs, one thing i do realise is the WHEN is NOT HERE yet, and might not be here in the next decade.. maybe it'd benefit the next generation but definitely not me, so i'm gonna stop asking WHY and focus on WHAT i can do to get through it.. i do believe that when one thinks positive, and pray, good things happen (okay, confession, i can be a bit naive!
) Yet it's the simple thoughts that keeps me happy! 0 -
kayb,With the reservation that I will not provide some of the response I received that is equivocal as to the value of the entire response, I will provide some of the information that was provided to me, along with my comments as a patient:
1. The rationale for giving chemo with trastuzumab is because when earlier trials were done only on metastatic patients, chemo plus trastuzumab worked somewhat better.
My comment: We do not have any way to know whether or not that action in reducing but not eliminating cancer is due in large part to the greater tumor burden that metastatic patients have and the greater reduction involved for a greater tumor burden, which early stage patients do not have. Without evidence, the addition of chemo for early stage is based on assumption, not proof.
2. Many considerations are used in determining whether or not to offer a clinical trial, and a major one is cost. Sponsors usually test what they think has the best chance of success.
3. . It is unlikely that a drug company, the NIH, or any sponsor would pay for a clinical trial unless there was substantial reason to believe that it would lead to substantial improvements in therapy.
4. It is possible to receive trastuzumab alone (without chemotherapy) for those who are able to get funding for it.
My comment: As patients, no discussion or evidence is provided to indicate the value given to measuring ethical considerations for clinical trials open to other patients (TAILOR-X, SOFT, etc.) but not to any HER2 positive patients who would be willing to take on the risk that other participants ARE allowed to take. We also do not have any information about the weight or value assigned to consideration for NOT exposing patients to overtreatment who get no benefit from it, and who do get detriment from it.
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yensmiles, I'm glad you are focusing on moving on with your choice of treatment. Each of us is asked to choose from the uncertain, and each of us sees the risks and benefits in our own way, knowing that no matter what we choose, there are no garantees and any of us can recur regardless. I too see your situation as likely to result in staying NED as an early stage diagnosis!
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VR, I agree with your statement, "I don't believe that the positive idea of chemotherapy is as dogmatically entrenched in the minds of the medical establishment as it was a decade or two ago."
I am sorry that it has taken so long for them.
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kayb,I'm not sure why, but you misunderstood. Why do you think my post did not refer to a comparison between chemo + trastuzumab and trastuzumab used alone, for metastatic patients?
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kayb, it would have been clearer if I'd just added in the full info, noting the trastuzumab used alone was the comparison -- sorry! In a way, that is why proof matters. It is natural to suspect that it is the addition of chemo that would make the difference, and it may also be true. But when it comes to subjecting so many people to the addition of chemo and all that it involves, that should require proof.
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So, AA....Because the medical establishment has moved away from the dogma, which I get that you are sorry it has taken so long for them to do....will you now concede that newbies, like our dear sister yensmile and others like her are making decisions with more understanding of the potential risks of therapy? Will you concede that some facts as to why she and other newbies will never receive just enough info to make informed choices, is because somewhere along the way there are ongoing studies that make knowing in the present impossible to know? And will you finally concede that while the medical establishment is moving away from the chemotherapy paradigm in both research and treatment, it is NOT because they choose to ignore certain cohorts? AA, you may continue to share the facts with newbies as you choose to believe what the facts are. However, I think clearer minds will ignore your "facts" and see past your pain and arrive at a place that will bring them peace of mind with their decisions. I really wish the same for you. If you could only move away just a little bit from your pain....just maybe you would think a drop more rationally. Sadly, I don't think that's possible.....
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Proof is a very sad way to define your being, AA. I look all around me and as my life unfolds, there is proof of less and less things. I am humbled by science and life every day! Recall the other book I told you to read! Ignorance: How it Drives Science by Dr.Stuart Firestein. Science isn't driven by what we know (Proof)...but by what it is that we don't know!
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Patients don't base their decision so heavily on what any one of us has to say. They base it on what they think "everyone else" in their situation says they are doing, on what is recommended to them, and on their own very personal ability to tolerate risk when it comes to a lack of proof.0 -
AA... Sadly, sometimes they do CONSIDER what we tell them when they are formulating their ideas. You NEVER know how much of what any of us say influences others! And what I find so dangerous in your posts is your conviction of what you say are "facts" AND your talent for obfiscation! And if that isn't bad enough, you have this great talent of taking statements out of context and then fixing them into a narrative that suits your need to find blame with the medical community. Would you like proof of what I am saying?
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I hadn't read the posts for a few days and was surprised by the flurry of "back and forths" about the subject of adjuvant therapies. I copied an article from the "Annals of Oncology" titled "Minimal and small size invasive breast cancer with no axillary lymph node involvement: the need for tailored adjuvant therapies." Written June 2004. The background describes the prognosis for node-negative , tumor size <1cm paitients and the debate of whether or not to offer adjuvant therapy. Their conclusion is "Within the first 4 years, microinvasive breast cancer parallels ductal carcinoma in situ (DCIS) rather than invasive carcinoma. Costs and benefits of adjuvant therapy should be accurately weighted in these patients. Patients with pT1a and pT1b, node-negative disease have a limited but substantial risk of recurrence and therefore adjuvant therapy, according to endocrine responsiveness of the tumor and patient preference, should continue to be offered as a reasonable treatment option."
The more I read, the more I accept that this microcosm of the disease is a grey area - and treatment isn't set in stone. I also like that I am participating in the decision about my care and that my health care providers at my institution are working with me on it. While at my 2nd opinion meeting prior to surgery, the Dr said "don't worry, we will make all of the hard decisions and allow you to make the decisions that won't impact your treatment and care." Hey, this is my body and my party. I am going to be a part of the process! Every day brings a new light on diagnosis and treatments. What worked (or didn't) 5 or 10 years ago can be completely revamped now based on new information. As drugs age, as patients age, as treatments age, we learn more and more about them. We, everyone involved in my care, will make the best decision we can based on our current knowledge, and my preference. That's all we can ask for.
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Met with the oncologist yesterday and after hashing through all the options, we have decided to move forward with 18 weeks of TCH wrapping up with a year of Herceptin. The three factors that weighed heaviest - the grade and positivity of the HER2, the size and my age. If the IDC was smaller (less than 5mm) or weak or no HER2 or if I was much older, I would have gone on to just radiation. I'll get my port next week. Good luck to everyone!
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Good choice Hikingandhorses !!
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