Survivors who have used only alternative treatments
Comments
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wornoutmom.... I find it disturbing that your husband was not found welcome here. I frequent the stage 4 forum.. and the men are SOOOOOOOOOOO welcome and supported.
i wish things were easier for you WOM.. .. just having someone babysit seems like it would be a godsend for you. Perhaps a support group can step up to the plate. I get treatment at a cancer center and they are very supportive.. of course my kids are older... one actually drives (that's good and bad).
I urge us all to support the men and their questions
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Hi WOM
I was just reading your original post and hoping you have decided to do the chemo. I opted out of chemo on my first diagnosis and have had 2 recurrences since because of it. I am currently taking four cycles of TC and really regretting I did not do this two years ago and get it over with. I was terrified of the chemo and had to get to a place in my head where I saw it as my ally not the enemy. Do you mind sharing where you are at in your journey and what treatment decisions you have made so far?
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I encourage everyone with cancer to beware of practitioners (conventional OR non-conventional/alternative) that are completely close-minded to any particular type of treatment/medicine. Bloggers such as the one mentioned use attack tactics meant to shut down discussion. We need to stop talking past one another and instead acknowledge that there are many tools in the toolbox of cancer treatment (beyond the standard of care). As patients, we need practitioners that are interested in finding the best tool for the job, for each individual patient, and we need to start demanding smarter, safer treatments (of which there are many). I'm a big fan of chemo-sensitivity testing for anyone wanting to choose chemotherapy -- it eliminates the complete guessing game of what chemo drugs will actually work with an individual's cancer. As a former patient, I'm not a big fan of anyone telling someone what treatment a patient should choose. It's such a unique, personal, pain-staking decision that we need to respect one another, and stop judging each other.
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Hollie, I do think there's a difference between 'telling a person what treatment" they should use and pointing out that the "science" someone is promoting through books and websites is faulty. If you're going to try to dissuade women from using conventional treatment, how is that different than someone pointing out where the studies contradict what you are promoting? And if you are so set in your method, why be threatened by someone offering counter-arguments?
When you say every approach is OK, you are essentially saying it doesn't matter. I think the lives of mothers of young children matter. At the very least, you shouldn't be afraid to subject your approach to scrutiny.
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Hi Member_of_the_Club. I agree with you wholeheartedly that pointing out faulty science is important. But what about the faulty science behind conventional treatments? Surely you're not suggesting there is none? We're so appreciative of the conventional doctors who are pointing this out, like Dr. Susan Love, who consistently notes that we're in the midst of an epidemic of over-treatment of breast cancer. Again, we're promoting smarter, safer medicine, rather than any single approach. Sometimes, that involves the tools of conventional medicine. Sometimes not. What we're trying to dissuade people from is unnecessary or ineffective conventional treatments. That's a real blind spot in conventional cancer care today, and patients suffer because of it (including, yes, mothers of young children, like me). We want as much scrutiny as possible, but we want it shined on conventional medicine as well as non-conventional. It really sounds like we're wanting the same thing, so I appreciate your post.0
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I would like to ask you if it ever bothers you that the power of your word could lead to someone, at a very vulnerable time in their life, making a decision that could cost them their life?
Sometimes a guilty conscience fits the bill ...
Having someone tell you what you want to hear doesn't make it true ...
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Hollie - You said - "As a former patient, I'm not a big fan of anyone telling someone what treatment a patient should choose". If you feel that way, why did you write a book?
As Orac says, surgery is the first line treatment and most often will be the cure in itself. For some people, unfortunately, that is not the case. I've said this before on this thread - I'm under no illusion that I am safe from mets - no one is. Chemo/herceptin is extra insurance. If, at some time, years later, a patient (like Merilee above) has a recurrence after refusing chemo, they can't go back and change that choice. At least I know I've done everything I could at the start.
Sue
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Apple - hope you are feeling better. One thing - WOM's DH hasn't come on this site - she just said she 'hoped' he would be welcome - which of course he would be.0
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Suepen, I'm glad you cleared that up. I was horrified that someone might have made WOM's husband unwelcome and went back through the thread to find where, and couldn't.
Overtreatment is always a problem, acknowledged by everyone associated with breast cancer care. They have gotten better at focusing treatment. The oncotype test, for example. In my opinion, the possibility of overtreatment is not a reason to forego treatment at all. At the very least patients should decide what kind of risk they want to take based on accurate information. For some people the increased probability of survival is not worth the side effects; for others it is. I have enormous respect for women who make their decision, whatever it is, by weighing these factors. I also know there are women who cannot tolerate some forms of conventional treatment because of other health problems -- they have to find their own way (and hopefully have oncologists who will help them). I also have enormous respect for the women who augment their conventional treatment with complimentary approaches.
My problem is with the misinformation you are peddling to others.
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Hi Britchick. Thanks for the well wishes. I also truly hope that you are doing well. But I would like to ask you the same question. Does it bother you that the power of your word, in defense of conventional-only treatment, will cause some people to undergo conventional treatments that they don't need, or worse, to undergo conventional treatments that will only make their cancers worse, or may cause them to die?
In earlier posts, I've clearly stated that I am not against conventional medicine (I even reference an incredible tool for choosing chemotherapy drugs -- chemotherapy sensitivity testing). But I do encourage patients to examine all the research, not just that recommended under the standard of care, and to consciously choose their treatment, whatever it might be.
We're all on the same side of wanting people to heal from cancer (and ideally never to get it!). We haven't done a great job of this since the war on cancer began, so I believe it's time to start looking for pracitioners that are willing to create individualized, complete treatments. There are many out there doing it, but they're definitely in the minority.
@suepen, I wrote the book to show patients that they DO have choices when it comes to cancer treatment, despite what they may be told. I also wrote it to point out the flaws that we discovered in the logic and science behind conventional-only cancer treatment. My message is really only for those who would like to look at other options in addition to the recommendations being given to them.
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I continue to be appalled by the sentiments expressed on this thread.
I also want to caution anyone reading the comments here that foregoing chemo and radiation and having a positive outcome doos not make that choice a wise one. Using myself as an example, I have about a 50% chance of being fine without additional treatment. Based on those odds, I chose extra chemo and certainly intend to complete the five years of anastrazole.
It's all about making my odds of surviving as high as possible.
But if I had foregone additional treatment, I would still have had an even chance of surviving.
However, if I can have a five in six chance of making it getting blasted with treatment, then that is the wise thing to do.
The issue I have with those who forego their oncologist's recommendation is that they may well be in the group that would have been fine anyway. I would not say they made an intelligent or rational choice. I would say they were lucky.
Others who follow their path may not have the same good fortune. - Claire
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Well said Claire. It's still interesting to see how few women have come out in repsonse to WOM's queston. I hope the reason for this is that most choose conventional treatment and not that they are no longer around to tell their story.
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Hi, I keep going back and forth and sometimes wonder if I'm being totally crazy. Now, I know a lot of you are going to scold me but I haven't done a thing since my lumpectomy five months ago. At first I was told by my surgeon right after the lumpectomy that and I'm quoting her now, "yours was one of the slowest growing tumors I've ever seen." I was very happy with this. I should also mention that my margins weren't clear and she said I needed a re-excision. Upon my post-operative visit my path report was not ready so I didn't know the diagnosis. On the next visit I met with the oncologist who had my report and told me that she highly recommened chemo. I was surprised since I had such a slow growing tumor. She said, "Who told you that? It's Grade 3 and aggressive." Naturally, I was very upset. I left and never returned even for the re-excision. So, here I sit after reading everyone's posts thinking that I must be insane. Am I? Is there anyone out there who is just sitting and waiting and wondering what's next? Please be honest, and tell me if with my diagnosis there's a chance in hell that I'll be okay doing nothing.
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Your surgeon had no right to give his opinion on the stats of your tumour without the pathology. My mother's surgeon did the same thing. When she saw the oncologist he could not believe what she had been told based on the same reports that he was reading.
I was told that my tumour was small and lazy. Not to worry. Lumpectomy came back with unclear margins. Mastectomy revealed that my breast was full of cancer and that it wasn't quite as lazy as they thought. I went from DCIS to stage IIIb in 3 weeks.
Please go back to see you oncologist.
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mindovermatter- I am NOT a doctor but please, at the least, go back to yours. I am all for the least harmful approach but that changes of course with degree of stages and grades and yours has already told you the margins were not good and that it was agressive. Although it would be reassuring to pick the surgeon's offering that it was slow...it is just too risky- until the pathology is truly known following surgery, all is a just a supposition for the most part. The difference between the two doctors is the onc HAD the path results. You are not insane...you are scared and probably a bit pissed off to say the least. We have all been there. And I for one go in and out of insane regularly:) keep us posted
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My surgeon told me he expected the tumor to be a certain size and it turned out to be twice as large. oops. In that case I think he was just making his best guess. Perhaps they shouldn't speculate at all until they know.
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Mindovermatter, Honestly you shouldnt be mad at your oncologist. Please dont let that be a reason to not go back and have this taken care of. If your margins were not clear, you are risking leaving cancer cells behind and with grade 3, thats a huge risk. Just my opinion. Whatever you choose, it has to be what you are comfortable with. Hugs, Mazy
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Thanks everyone! I appreciate your input. I'm going to make a decision soon. Hope everyone here is doing well. Hugs to all.
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just my few cents worth. you need someone who will be your personal advocate no matter what decision you make-- if you find yourself second guessing your decision, I think whatever you decide on will do you more harm than good..
why not be in the middle and do both conventional and alternative?? -- or what they call complimentary.
I have read the stories posted by ORAC as well as poptart-- it seems for most of these unsuccessful alternative stories-- their family and friends are not 100% supportive. unlike for Hollie Quinn and Suzanne Sommers, they have 100% support from their immediate relative.
there seems to be a few ladies on this thread who are quite comfortable doing both conventional and non-conventional-- if you are going to get support from these ladies, I think you better do what they are doing as well-- so you do get some support from both worlds. what we do not want is that either of the 2 will drop you from their circle of support just because you have chosen one for the other..
all the best to you and hope you make the decision wherein you will be comfortable sticking to and get the support you needed to execute that decision.
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I have read the stories posted by ORAC as well as poptart-- it seems for most of these unsuccessful alternative stories-- their family and friends are not 100% supportive. unlike for Hollie Quinn and Suzanne Sommers, they have 100% support from their immediate relative.
This statement is such a load of garbage that it's funny! Yes, that's right Suzanne Somers is alive because she had a good cheerleading squad. We have found the cure for cancer ... we'll all just rah, rah, rah every decision or non-decision anyone makes and all the bad stuff will go away.
I haven't responded to what I think have been some nasty comments about my posts. It is funny that if you have a cancer diagnosis and you express negative feelings about it or about how someone reacts to you, it is all well and good, but for someone who has a cancer diagnosis to reflect on her experience as the daughter of parents who died of cancer to admit that the entire expreience wasn't all rah rah rah (by the way, rainshed, I was a child when my mother was diagnosed), somehow that is not allowed here. Sometimes I get the impression that people believe a cancer diagnosis gives them some kind of moral high ground. It's ridiculous. I cried more over this thread more than I did about my own diagnosis. And, I am sorry if it offends people that, although most of my memories about my mother are good, I am not completely in the rah rah rah camp about decisions she made regarding her cancer treatment. She wasn't into alternative therapy, she was into no therapy essentially (until it was too late). Alot of people on here write as if all these decisions about treatment are purely about individual preference, and that all those closest to the cancer patient are just suppose to blindly support every decision because it's "personal." Do people really believe this? Does any one in all honesty think that a person with stage 3 her2+ breast cancer is doing good by refusing chemotherapy and radiation? I am not sure, is WOM refusing anti-hormonals too? It is one thing to say you will stand by a person no matter what they do, yet quite another to actively support what may be a really bad decision.
"Hey go ahead, walk off that cliff, we'll be thinking lots of good thoughts about you so you don't need to worry ...." This is essentially what some people here are saying. "Hey, you chose to walk off the cliff, so that must be the best decision for YOU." Go for it.
I have read the stories posted by ORAC as well as poptart-- it seems for most of these unsuccessful alternative stories-- their family and friends are not 100% supportive. unlike for Hollie Quinn and Suzanne Sommers, they have 100% support from their immediate relative. (By the way, I think Suzanne SOmers had a stage 1 tumor with no node involvement and she did have raditiation. )
I just want to say again that this statement is pretty disgusting. Cancer is not cured by magical thinking. Lots of wonderful people with wonderful support from family and friends die from cancer. There is certainly a long way to go, but there have been improvements in treatments and targeted therapies. Just because treatment options are not ideal doesn't mean they won't work. Why not reach out for the help that is available NOW?
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Why is that women who extol an alternative only treatment regimen are considered so brave and fearless? I read through the reviews of the book on Amazon that Hollie has so kindly joined BCO just in time to market to us. Except for one review, which points to the absolute pseudoscience mumbo jumbo in it, the other reviewers have just posted one review on the entirety of Amazon, and their one review is for Hollie's book exclaiming how brave and utterly fearless and courageous this woman is for doing it in her own way. I just see the same stuff over and over again and it gets really repetitive, you know? Conventional treatment kills, conventional treatment isn't individual, doctors are stupid and insensitive and refuse to treat the cause of cancer, pharma and doctors just want our money....only the truly brave women, with the support of their families, are able to "think outside of the box" and are courageous enough to speak up for themselves....
And what does that make the rest of us, who chose some conventional therapy as well as alternative? We're just not brave enough, we're just not natural enough (I'm sorry, the name of the "natural girls" thread just honestly bugs me...it's like saying that everyone else who doesn't go the total natural route is "unnatural." It's like an underhanded insult, in my opinion...and while I'm on a roll, we're women, right, not girls?
Sorry, it's just the same stuff and the same arguments over and over again, some vulnerable women on here buy into it, the poster makes money from the books or the products she just happens to be selling (sorry, I really do find it insulting that there's a poster here that every chance she gets, directs women to her informative site that just happens to sell products that she makes money off of).
That's my vent of the day....I'm sure I've insulted many, many people....but I had to get it out.
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Does anyone else think "rainshed" is nanay, or "Ruth in Singapore"?
It sounds like her.0 -
I am glad to had and requested the most aggressive treatments I could have, I saw my new born grand child born, now she is going to college, had a second grand baby,saw both my children finish college.
I would have done anything to be with them, it was not only about me. And I had all side effects known to men/women.
But one is free to forgo treatments, roll over and die, fight and maybe loose the battle,but still a warrior, all is a personal choice.
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I looked up that book also on Amazon, and it did get glowing reviews. Sounds like those reviewers probably don't have cancer. One even said she "ended up being less afraid of ever getting cancer". Huh? Maybe she needs to spend some time on these boards.
It seems to me that surgery is what cured Hollie, I am happy for that. But in the book, she states that if she could go back, she wouldn't do surgery. Really? Does she really think you can shrink tumors without chemo? I guess there are examples of that in the book. I believe chemo is the only thing that could make a tumor shrink, but I have heard people talk about alternative medicine doing so. Can anyone give me an example of an herb or alt. med that could shrink a solid tumor? I just don't believe it
If she was couragous and fearless, I guess that makes me a wimp! Lol for spending the last few months doing aggressive chemo and radiation treatments. I would be terrified not to.
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You know, I recently met two women who were diagnosed with a 2cm, Stage 1 tumor about 8 years ago. There was no lymph node involvement for either woman. One opted to do a lumpectomy and a zillion other alternative treatments (mistletoe, Chinese herbs, meditation, LDN - you name it!). She did not do chemo, radiation, or Tamox. Today, she is cancer-free. The other woman decided not to have the recommended lumpectomy, deciding to do a purely alternative path to shrink the tumor. Six months later, it was in her bones. She kept it at bay for about 6 years with Arimidex, but then it came back in her bones and liver. She died a few weeks ago. She was 51.
Surgery is a HUGE part of the cure, I think. For someone to say otherwise is really ridiculous. I have done ACT and just had a BMX with ALND. I will do 6 weeks of radiation and 5 years of Tamox. I currently researching a variety of complemtary therapies, like mistletoe, to add in. I have no regrets about my choices and am very comfortable with all of my choices.
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MindoverMatter - there is no way a grade 3 tumor is considered slow-growing.Yiur oncologist was right...the surgeon wrong, in my estimation.
Lynn - yes, lol.....definitely shades of our nanay.....
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MindoverMatter - please at least see about getting clear margins. That is the most important issue for you right now.
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Thanks Black-cat.
You know I'm actually glad when someone like Hollie comes here to promote a book or product, even though against BCO policy, as it allows others to comment without being too nicey nice about it.
I went to Amazon to look at the book contents, I went directly to amazon without clicking on the link ($$$) on the suggested webpage. First thing I did to evaluate the book was to look at the index, (at least there is an index, give credit where due, many personal experience books do not have one). Though there are a few specific words you would expect in the index of a book about breast cancer, mostly the lookup terms were fairly general such as 'benefits', 'chemotherapy', and my favourite, 'cure', each with a string of page numbers after without further breakdown so not very useful.
Several doctor's names are listed in the index, alphabetized under 'D' for Dr., (most strange), Dr. Susan Love was one of them. I borrowed Dr. Susan Love's Breast Book from the library on the way home from having my ultrasound when I learned I probably had BC. I later bought my own copy, 4th edition, and in 2010 upgraded to the newest 5th edition, if you are making decisions about breast cancer treatment I highly recommend it.
Next I went back to the amazon book page and put the phrase Susan Love in the search box and came up with all the pages containing that name. Guess what, Susan Love's Breast Book was the first book that Hollie bought after diagnosis too -- the 3rd edition -- published in 2000. Fine ok, makes sense as Hollie was diagnosed in 2002, but is that any reason to use the information in the older edition of Love's book as the background research information on cancer treatments in the new book being written?
Nuff said, go take a look for yourself, pick out our own look up terms.
Kathy,
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I looked through it and found a lot of slap-dash conclusory statements, pretty much repeating the tropes you can find on the internet without any research. Not sure why this is considered brave. But I've noticed in our culture that people are labeled brave just because they meet with disagreement. Famous person who sticks up for such and such unpopular cause is "brave," because people will disagree -- meanwhile famous person continues to live the celebrated/wealthy life. That sort of thing. There's nothing brave about writing a book.
This is what's brave: the woman who is terrified of chemo and does it anyway because she wants to do everything possible to live. Or the woman with mets who continues to live life fully while fighting her disease. When I see a woman who is terrified but does the hard thing anyway, thats my definition of bravery. Mothers who take on the pain and discomfort of treatment because their children need them for as long as possible. Mothers who are dying and still do the work that is necessary to ensure their children's future, making arrangements for a future that will exclude them. And finally, women who are dying and make the wise decision to end treatment and bring in hospice because they know its time. I've seen acts of bravery like this and it take my breath away.
Saying "I will ignore medical science and my doctors because I am smarter than they are," is not brave, whatever it is. I am glad Hollie is OK, but she is peddling nonsense and women will die as a result. This doesn't make her brave.
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Nerida: (((Hugs))) to you
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