Survivors who have used only alternative treatments
Comments
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Yazmin, I am completely confused by what you are saying. Many stage II and all stage III cancers are in the nodes (well, I think primary tumors over 5cm are considered stage III even if not in the nodes). I was stage IIb and node positive. Stage IIIc breast cancer is considered highly likely to become metastatic. Or I should say, to develop into distant metastasis since cancer in the nodes is a form of metastasis. Its only the stage I cancers that are all node negative, and I agree that unless there is something in the pathology that indicates aggressiveness, these women largely do not need chemo. Its really in stage I that decision making is the most difficult and I have found that many of the women who choose alternative methods are either stage I or have DCIS.
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Yes, Member, everything you are saying is true. It is among the Stage 1 that there is the most decision-making to do. Still, I was Stage II and node-negative (for whatever reason).
And I should probably remove the Stage 3 tumors from my "list" altogether, as I meant to talk ONLY about those cancers that are not in the nodes. I apologize for the confusion I created, and thank you for helping me try to clarify (I don't know if I have succeeded: this is SO complicated!)
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Hi all,
I think we all agree that we need more and better research and improved treatments for cancer. But, for those of us diagnosed today, we have to decide about the treatments that are available now based on the evidence available now. That's what I've been focused on in this thread -- since that was the issue raised by wornoutmom.
Yazmin. OK, the studies we rely on disagree. My question continues to be: what studies are you relying on? If I knew which studies you were talking about I (and everyone else who wanted to) could go to the actual study, the primary source, and figure out if that study applied to them. We could consider it on its merits. But you haven't posted links to any actual studies*.
Also, importantly here because wornoutmom said she was Stage 3, it seems that many of you are talking about extremely early stage breast cancer patients who may, in fact, not benefit much from chemo or radiation or tamoxifen -- mostly because their risk of recurrence/metastasis is extremely low to begin with. I didn't think Stage 1 patients are even offered chemo, for example (I guess that may depend on HER2 status).
I agree with you Yazmin, that most Stage 1 patients will not progress, even with no treatment. But some will (I believe it's about 10 percent) -- you can find them easily on this site. And when you get to my Stage 2b, you're looking at 50/50 odds, so that's pretty dicey. Obviously, the odds for Stage 3 are even worse (but the upside is that the benefits from the treatments are much greater in these later "early" stages.)
My point is that we should all focus on the specifics of a particular cancer and not simply chant, with no evidence to support it, that "there's no overall survival advantage" to this or that treatment.
Sheila -- I'm not a scientist. I'm a journalist. In journalism, a "fact" is a piece of information that can (indeed, must) be verified by a trusted source. That's why I post links ad nauseum. I personally know nothing, I can only tell you what other sources say -- if someone reading wants to say that Adjuvant Online is wrong. Or that the Early Breast Cancer Trialist's Collaborative Group is wrong. OK, everyone is entitled to their opinion. I just think we do readers a greater service by showing them the primary sources.
Athena - You misread me. I'm not angry. But I am impassioned and will continue to press my points. Orange1 said it best: Because you keep printing false information, I feel like I have to.
It would just be too horrible if a newly diagnosed woman accepted that "there's no overall survival benefit" to any of these treatments, refused them, and learned the truth the hard way.
FOOTNOTE: * Yazmin, posting this as a footnote so as not to further bore everyone. And to ward off those who will say you posted an actual study about the treatment benefits we're discussing....Your link to breastcancerchoices.org includes an editorial from the Journal of Clinical Oncology about a study involving breast cancer patients who had a 15 percent mortality risk at 10 years, which is improved to 13 percent with chemotherapy. That study presumably (since the study itself isn't shown) contradicts the statements on this board about no survival benefit from chemotherapy, in itself. But whatever. More importantly, a woman with just a 15 percent mortality risk without further treatment, has very, very early stage cancer. I'm stage 2B and my mortality risk at 10 years without further treatment is 45 percent. So that study is not very relevant to most breast cancer patients, and certainly not to wornoutmom.
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Athena,
Let me add that that's a general, not a specific, "you" in "You keep printing false information..."
I think much of what you have said in this thread is very insightful and valid -- like about how cancer stats are necessarily both outdated, and lacking very-long-term follow-up. I only argue with the false and unproven statements, like that Tamoxifen offers no overall survival advantage.
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Beeb - I appreciate your post. I have posted this before but it might bear repeating: Regarding Tamoxifen, though, interestingly, you will find the information in adjuvantonline, of all places. I almost fell off my chair when I read it. Caution: Adjuvant only follows node-positive, er-positive cases. That is where I first learned of it myself. Still, if one understands the concept of OS*, a reasonable person can still decide to take it. I (who will not describe myself as reasonable) chose this no-OS benefit drug as part of my treatment. It may have benefitted me for the 18 months it lasted in my system; I won't know for a long time, though. Or perhaps ever.
You used the word "horrible." That is the right word in things cancer!
Cheers,
a fomer journalist myself.
*Something that should be pointed out: When looking at studies or tables discussing overall survival, make sure the data is clear in whether it is FROM CANCER or FROM ALL CAUSES. Sometimes, OS benefit is referred to as all-cause OS, and sometimes it only refers to cancer. I have used the term in my posts on this thread to mean overall survival from all causes.
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Beeb75:
Though I said I would not provide any additional links on what I am saying, check these:
http://jco.ascopubs.org/content/28/20/e346.full
http://www.oncolink.org/conferences/article.cfm?c=3&s=21&ss=135&id=826 (Here, please note the distinction they are making between DFS (disease-free survival) and OS (overall survival). Aren't we sick and tired of those surrogate end-points they keep on throwing at us?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1451405/pdf/cmaj00198-0023.pdf
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And then, there is this one:
Please see this medical review (only one among many similar ones), entitled, this way:Tamoxifen Continues to Prevent Breast Cancer for Years After Therapy Is Stopped (FromMedscape Medical News): http://www.medscape.com/viewarticle/549550Nevertheless, please read all the way to the BOTTOM of the study, and you will see this, in Medscape's own words:But Higher Mortality in Tamoxifen Group
"......However, overall the mortality was higher in the group of women who took tamoxifen for 10 years than those who took placebo, although the difference was not statistically significant. In total, there were 65 deaths with tamoxifen vs 55 with placebo (P = .36), with cause of mortality outlined in the table.Table: Death and Cause of Death in Tamoxifen Study
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Thank you, Yazmin! I will read those.
And Athena, I'm just not sure why you say that Adjuvant Online shows no survival advantage from Tamoxifen. I am looking at the actual bar graph image from Adjuvant Online for someone with my stats (I can't for the life of me figure out how to upload the image to this post.) Anyway, for someone with my stats, 11.7 additional women are alive at 10 years due to tamoxifen.
More later -- got to get some work done.
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Member_of_the_club not all tumors over 5cm are considered stage III. My tumor (invasive part only) was 5.5cm but no nodes. That made me a stage IIB. If it was in my nodes, even micro invasion I would have been considered a stage IIIA.
But regardless of stage the tumor plays a big part in this too. Triple positives and HER2+ tend to be more aggressive and may be treated more aggressively regardless of stage II or III and in some cases stage I.
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Lago: that's the whole point, indeed. I am glad Research finally discovered that. It baffles me how some 5-6 cms tumors never present any nodes, while some 1 cm triple positive or triple negative can present nodes.
Amazing.....Amazing......
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Yazmin: The article you posted is about studies of the use of tamoxifen to prevent breast cancer, not for treatment. I can't see how it is relevant to this discussion of its use to prevent the recurrance of breast cancer. The risk to benefit ratio could be entirely different, as there is lower risk of breast cancer in the general population, than the risk of recurrance in untreated stage 3 patients.
Additionally, the statistically insignificant (ie, it could have just been caused by chance) increased mortality in the group of healthy women who took tamoxifen for ten years as a preventative of occurance (as opposed to recurrance) is probably why tamoxifen beyond 5 years isn't recommended treatment.
I don't see the relevance of any of this to breast cancer treatment, as it involves the general population of women, and treatment with tamoxifen purely as prophalaxis to ward off an initial occurance of breast cancer.
I also looked at one of the studies you referenced:
http://jco.ascopubs.org/content/28/20/e346.full
and just as I suspected, all discussion of aromatase inhibitors benefit is in comparison to tamoxifen. That is why when someone makes the ambiguous statement that AI's have no proven benefit, I have to ask, in comparison to what. If you could show me they had no benefit compared to placebo, then I would say throw them in the rubish, but as they do either stand neck and neck or have recurrance advantages over tamoxifen, they have, at the very least, value as an alternative to tamoxifen for women who cannot tolerate tamoxifen.
Took a look at this article as well:
They failed to separate out women who were hormone recepter negative or note Her2 status. They only used tamoxifen for 3 years instead of 5 years, and the treatment with tamoxifen may have been concurrent with chemotherapy, something that is suggested to be counter productive and cancel out benefits of each of the two therapies.
Experts say this study is at odds with other studies,and pose the above as possible explanations for the unpredicted results.
See full text below.
Home > August 10, 2004 - Volume 26 - Issue 15 > Operable Breast Cancer: Tamoxifen Benefits May Be Modest at...
< Previous Article | Next Article > Text sizing: A A A Oncology Times: 10 August 2004 - Volume 26 - Issue 15 - p 57-58 doi: 10.1097/01.COT.0000293190.23316.5f European Breast Cancer Conference Operable Breast Cancer: Tamoxifen Benefits May Be Modest at Best, But Results Differ from Previous Studies
Moyer, PaulaFree AccessHAMBURG-The benefits of tamoxifen are modest at best in patients with operable breast cancer who receive postoperative chemotherapy, according to a study presented here at the European Breast Cancer Conference.
The overall survival for [treated and untreated] groups was 8%, reported Robert Paridaens, MD, a medical oncologist at University Hospital Gasthuisberg in Leuven, Belgium.
He stressed, however, that other factors can influence the value of tamoxifen. For example, among patients with both estrogen- and progesterone receptor-positive tumors, 88% are alive five years after diagnosis. Even so, that rate was the same between those who did and those who did not use tamoxifen, he said.
Tamoxifen was associated more with relapse-free survival, though. Among those treated with tamoxifen, 72% were relapse-free at five years, compared with 66% of those who did not use tamoxifen.
Among the 1,863 study participants, the current median follow-up is 6.3 years. At the time the ongoing study was reported, investigators had recorded 359 deaths and 551 events, defined as relapse, death, or both.
Back to Top | Article OutlineAmbivalent Results in Chemotherapy-Treated Patients Dr. Paridaens explained that he and his co-investigators were interested in assessing tamoxifen's other benefits because, although the drug had been shown to reduce recurrence and mortality in patients with hormone receptor-positive operable disease, less clear benefits had been seen in patients receiving adjuvant chemotherapy.Earlier studies have also suggested that tamoxifen and chemotherapy may in fact be partially antagonistic, and that concomitant use of tamoxifen with chemotherapy was less effective than chemotherapy alone, he noted.From March 1991 through May 1999, a study under the auspices of the European Organization for Research and Treatment of Cancer (EORTC) recruited pre- and postmenopausal women who had operable breast cancer in Stages I to IIIA. Among these, half received tamoxifen therapy for three years following combination chemotherapy; the other half had no tamoxifen.All patients had received six cycles of any one of several regimens of adjuvant combination chemotherapy. The chemotherapy treatment options consisted of cyclophosphamide, methotrexate, and fluorouracil (CMF); cyclophosphamide, doxorubicin, and fluorouracil (CAF); or cyclophosphamide, epirubicin, and fluorouracil (CEF).The study protocol did not exclude patients by their menopausal status or by the primary tumor's hormone-receptor status.Patients were excluded if they had other forms of cancer, such as contralateral breast cancer. Exceptions consisted of adequately treated cervical carcinoma or basal cell skin carcinoma.The investigators analyzed the patients' treatment centers, chemotherapy regimens, and age. At the start of the last chemotherapy cycle, patients were randomized to receive 20 mg of tamoxifen daily for three years or no further treatment.The goal was to determine whether treatment resulted in at least a 5% increase in the five-year survival rate, from the current rate of 80% to 85% or more. This endpoint required at least 159 deaths in each treatment arm.
Figure. The findings...
Image Tools The study also sought to assess relapse-free survival, local control, and the incidence of second primary breast cancer, as well as to correlate the results with the tumors' hormone-receptor status.The findings show that tamoxifen-treated patients are less likely to have a recurrence, but that there is no overall survival benefit to tamoxifen in patients receiving postoperative chemotherapy, Dr. Paridaens reported.Back to Top | Article Outline Inconsistent Findings Several breast oncology experts noted in telephone interviews, however, that the findings differed from other research showing a clear benefit to tamoxifen.Robert W. Carlson, MD, Chair of the Breast Cancer Guidelines Committee of the National Comprehensive Cancer Network (NCCN) and Professor of Oncology at Stanford University School of Medicine, said, This is an interesting large study. The results are surprising and not consistent with other studies of tamoxifen in early breast cancer.The results are disappointing, and one reason might be that the study included women with estrogen receptor-negative disease. Also, the patients were treated with tamoxifen for three years, when we have data showing that there are more benefits when tamoxifen is taken for up to five years. The short course and the number of estrogen receptor-negative women may explain these findings. As we practice breast oncology in the United States, we always know the hormone-receptor status of every breast cancer patient.Julia Smith, MD, a medical oncologist and Clinical Assistant Professor at New York University School of Medicine, noted that some used anthracycline and some did not. That's very important, she said. These drugs can interact differentially with tamoxifen.In addition, the investigators did not mention whether they stratified by HER-2/neu. That is important because we know that anthracycline, tamoxifen, and HER-2/neu can all have differing effects on outcome.I think this study is food for thought because with postmenopausal women with early-stage, small, receptor-positive tumors, we know you may not add a benefit with tamoxifen if you also add adjuvant chemotherapy, she continued.
Figure. George Somlo...
Image Tools We may be talking about very small increases in benefit. For some women, the small percentage gain is enough. This study doesn't yet give clear indication of what to do at this time. Like Dr. Carlson, Dr. Smith pointed out that the three-year treatment duration was short, and that five years is optimal.If you ask me if I'm going to stop prescribing tamoxifen after chemotherapy, the answer is no, said another member of the NCCN Breast Cancer Guideline Committee, George Somlo, MD, Associate Director of High-Dose Chemotherapy in the Division of Medical Oncology and Therapeutics Research at City of Hope National Medical Center.This is one of several studies that have been recently presented looking at whether there is a role for tamoxifen in delaying recurrence or extending survival for patients with operable breast cancer, particularly when you provide it in combination with chemotherapy. The findings show no difference in outcome, which is a contradiction to other studies. The various chemotherapeutic regimens give the study a bit of heterogeneity.He also agreed that the three-year duration of treatment may not have been long enough for the patients to derive full benefit from tamoxifen.The variety of chemotherapeutic regimens and the duration of tamoxifen may explain why the investigators found only modest benefit to tamoxifen, Dr. Somlo said.One additional difference is that studies in the United States were conducted in postmenopausal women, and this study included pre- and postmenopausal women.0 -
We need to remember that positive nodes are really just surrogates for whether or not there are cancer cells in the bloodstream, with the presence and number of nodes increasing the likelihood. Each cancer has its own "personality." So something that showed up very quickly at 5cm, without hitting the nodes, may be so aggressive that it goes right into the bloodstream. there was a discussion amongst the Stage IV women a few years ago whose cancers fit that profile. Then again, a cancer that slowly lobs along and eventually becomes 5 cm without hitting the nodes probably isn't aggressive at all, its just been ignored for a long time. This happens, especially when women are scared to followup on lumps or aren't having any screenings. Their prognosis is very good. But the tiny tumor that fills up a bunch of nodes is probably really aggressive.
My onc thought because my tumor was already 3cm (it was misdiagnosed the year before) and had only gotten into one node in all that time, that it wasn't that aggressive. But aggressive enough.
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Beeb75 - I should have clarified - it is in the literature that accompanies the data as background under the "content" tab. The way adjuvant! identified OS benefit in Tamoxifen was as non-breast or endometrial cancer-related mortality, and their finding was "no significant difference" in a table they have. Significant means statistically significant. But I see now that they do believe in breast-cancer survival benefit (and not merely recurrence). Tamoxifen does kill a few people, but other studies I looked at say it helps more. So you will either live, die or "die anyway." Welcome to the world of survival data. Yes, the data is old and I have struggled mightily with that issue, but it is also the information that oncs today are using to give patients recommendations in 2011.
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lago/member/Yasmin:
This type of inconsistency speaks to the need for researchers to come up with a better staging system, IMO. Things are thankfully moving in that direction and tumor grade is finally getting the respect it deserves, but more needs to be done.
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I think a good oncologist will see stage as only one piece of information, and grade as another.
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Timothy: Thank you for your thoroughly thought-out research (as usual).
The reason I am referring to the use of Tamoxifen to prevent breast cancer is not to try and prove that it has no benefit at all: I feel, and I always felt, that Tamoxifen is beneficial to a very limited number of women, due (among other things) to its potentially serious side-effects; and in my opinion this medicine is WAY overprescribed (to have women take Tamoxifen to prevent breast cancer, for instance, is a criminal activity in my view).
Having said that, I have also said that Tamoxifen is a life-saver for some people (including someone I know, whose tumors are being kept at bay by Tamoxifen).
As Athena puts it, researchers need to come up with a better staging system, but, even more urgently, with tools to determine which patient actually benefits from what.
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As a stage iv person NED 3 years now, I woud prefer to look at disease-free survival. How much time is a med going to give me before I have to move to another one? There are too many other factors affecting overall survival, not least study design. Studies aren't usually designed for us. I wonder, for example, what happens in a study if a person does have a local or distant relapse? Do they just wait until the person dies so they have their " required number of deaths," or do they switch therapies?
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I think this has been an interesting and informative thread. But I wonder if some of the treatment-skeptics who have qualified their skepticism should refer back to the original post and clarify that they think this poster should do chemo. Many of you have said your skepticism only refers to early stage bc, or prophylactic use of hormonals. But your earlier posts call into question the benefit of these treatments in general, and are not so qualified. I think its really dangerous, particularly for women whose cancer is as advanced and as aggressive as OP's, to advocate for the uselessness of treatment. She is young and has young children and is in a vastly different situation than most of us who have posted on this thread.
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Member I agree but would also like to add the skepticism refers to very early BC (stage I or 0) and doesn't considered agressive cancers like triple negative and HER2+ or tumor size (5cm or larger). Stage IIA or B and Stage IIIA are all still considered early BC but have a more agressive treatment than stage I for a reason.0
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Someone asked if I am still here. I am workng on a cake for my husband for this saturday. I am a perfectionist probably why my body was so run down..lol I can't wait to dive into all the information but have to wait until the cake is complete
So I will being going through all the posts afterwards.FYI I have gotten some great responses from alternative treatments but the majority email me privately as they just can't deal with the bashing they recieve as they are not doing was is socially acceptable. I can't say that I blame them as there is some real heat with my question. I must force my self to stop until sunday...lol Again I love to hear all sides as dicussion like this I blieve will get us so much further in this so called war when we start looking ALL the components of cancer. Clearly we have much improvement to do.
One of my biggest enlightenments for me came from this site. It made me understand cancer no matter what treatment I choose. WWW.envita.com/cancer_treatments.html
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wornoutmom...I looked up evita.com/cancer.treatments. I so love what I read! If I am ever dx with a later stage cancer, I for sure will call Evita. It looks good!
I so agree with their stand on the importance of the immue system in fighting cancer. Thank you so much for posting that link.
(((HUGS))) evebarry
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It's great you're exploring treatment options. Sometimes you need to ask a lot of questions to get the answers you need. There may be so much information out there, you're not sure you're getting the best information. I'm doing a survey to see how we can improve the conversations that you're having online and the information you're getting about health care. If you have a few minutes, I would really appreciate your feedback on this survey. I work for a company that helps patients find research opportunities that may be appropriate for them.
Thanks for your help.
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Tracy, you need permission from the Moderators of this board to post anything such as your request for survey participation. Unfortunately, unless you clear your request through them, we have no way of knowing if you are who you say you are (as vague as that is), and if your intentions are legit.
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Member, you wrote:
"........But I wonder if some of the treatment-skeptics who have qualified their skepticism should refer back to the original post and clarify that they think this poster should do chemo......."
I confirm: OP should consider chemo, but I thought we had all agreed on that point, since she is not an early stage breast cancer patient.
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I confirm too: Never give medical advice over the internet without being a doctor. It's dangerous. And, for that matter, to those on the other side: Never TAKE medical advice from a non doctor over the internet.
I think the OP has already made her decision anyway, and we should respect it.
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I re-re confirm, then: OP should consider having chemo IF her medical team deems it necessary. Smiles
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Dear Wornoutmom,
Hope you find a terrific oncologist that provides the guidance and support for your difficult decisions. Thankfully my original team of doctors suggested I get a second if not a third opinion and for that I am truly grateful because it set me on a different path.
Not familiar with this organization personally but they seem to take an integrated approach: http://www.blockmd.com/. They are located in Illinois. Has anyone worked with them?
Good luck and keep us posted!
p.s. Was 38 and our youngest was 13 months when I diagnosed and treated 10 years ago. Bet they like to sit in your lap while you're trying to type.
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supermom I have heard a few posters mention block md but it is to far..bummer I have to type late at night so they are not on my lap.,..lol
I have anohter question for the group. I asked my doctor for the CTC (circulating tumor cells) test and she is saying that "I am cured" by surgery so this test is not for me. Basically made it sound that unless I was stage 4 I can't have this. Does anyone know if this is true?
My medical doctors are saying that of course that chemo is necesarry as they would risk losing their job if they did not due to the fact it is the only treatment approved. However there is success by alternative and they don't seem to think it is a must. I asked my 85 relative what she had and she does not remember stasge # but knows she had a full mastecomy and 4 lymphs removed. Chemo and rad were not required then so she did not have it and is over 15 year clean with no changes. Funny how quickly we forget that it wasn't always persribed. I had no idea.
I think it really boils down to rather than lump summing it you have to look at each individual and all the things that created it etc. One thing when I get people saying you must have chemo I think funny as you never asked me any specifics. I was personally exposed to chemicals for years so adding chemo to my body is like a ticking time bomb this is not like most others. Fact is chemo and rad cause cancer there is no dispute about that. This is a huge factor in my decisions. Also my her2 postive tumor was not the natural tumor in my body but popped up after the in situ one was misdianosed and they put me on birth control pills. I really believe the pill made it agressive as my original one was not.
I respect all decisions and just wanted to hear some others experiences to make a informed decission. One person said it best to describe all the heat this post caused. It must be hard to hear there are other choices that could have been made that would not harm your body and that you want to defend what you chose as otherwise you will be left thinking you might have made a wrong decision. To me if you feel it is right then that is the best one for you but you don't have a right to tell someone else what they need to do. Sharing stories is a great way to learn and make your decissions and I am glad I have gotten this from this group
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wornoutmom my onc doesn't do any blood tests or additional scans unless there is a symptom.This seems to be pretty typical although there are a few that do.
Although HER2+ tumors can be hormone sensitive, more are are not highly hormone sensisitive… granted there are several triple positive women on this forum that do have high ER and/or PR sensitivity. Many slower growing breast cancers are associated with being ER/PR positive but again not all Er/PR sensitive breast cancers are slow growing.
I have never heard birth control pills being the trigger for HER2+ although I do agree that it feeds it's growth. My tumor was both IDC and DCIS. They didn't measure the DCIS part but mentioned it was less that 25% of the tumor. I haven't been on birth control pill for over 25 years and since I was peri-menopausal I was not on HRT.
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Wornoutmom, please be sure to read your pathology report thoroughly before making any decisions. There is a lot of info in there other than stage, tumour size, positive nodes and grading. They can make a big difference in outcomes but they are often neglected when we talk about tx types.
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Wornout Mom....
From my after-visit summary - 1st Meeting with oncologist:
"Stage IIb disease has about a 50% mortality if she had no further therapy. I think we can reduce her risk to about 20% with adjuvant therapy."
With odds like these, I was more than eager to do the full deal.
You might want to look at your odds the same way. What are they if you do treat/what are they w/o? I suspect not as good as mine were w/o, but I had Grade 3 tumor cells.
As your oncologist, I wouldn't do a circulating cell test either. What if there are no detectable cells in your blood, but there are some in your spine, liver, or lungs?
And reread what Apple wrote. Just the saddest of stories. You don't want to be the next Apple and you could well be headed down that path. - Claire
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