Survivors who have used only alternative treatments
Comments
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I, for one, am not losing sleep over what WOM chooses to do or where she is in her treatment timeline. I in NO WAY mean that to be callous or snarky! She is an intelligent adult who is seeking what is right for her and what fits her value system. I doubt that any of our opinions have swayed her much off her original base, but more likely solidified her thinking prior to starting this thread.
WOM, I wish you the best of life as you move forward. Just keep moving and thinking and acting based on what's right for you.
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I can explain MOM's prof pic...it's because of the OMG they found a cure for stupid thread...a very sarcastic and humorous thread if you ask me. It started because of the ridiculous cure emails we receive from the "do gooders" in our lives. Aspargus has been touted as a cure, so it went on from there. I thought MOM was very creative, she posted all kinds of crazy pics, actually hammered the board with them if you look through. I'm surprised at how the vitrolic discourse evolved from her. I hadn't recognized anything in her previous posts. I'm really surprised by the name calling and the dismissive nature too. I try to read between the lines, and I do read a great deal of fear or frustration beneath all of the anger...because after all anger is just a reactive emotion when we are threatened, frustrated or fearful. I really can't understand antagonism and threats on these boards at all. As a fence rider, I have to admit as much as this soap opera amuses me, it is very frustrating to find COMPLEMENTARY tx details. I am thankful for the studies and accurate data that is cited here. I'm thankful for the experienced advice that so many provide. Especially the debunking info. I probably would have bought Hollie's book out of curiousity, but to find that she's just misleading the alternative followers is worrisome. I need facts and stats and I think that's what we're all looking for on some level.
As for the antagonizers and the users/abusers on this site, I'm sorry you have the need to hurt others. Maybe one day you'll get to the core of what's bothering you and recognize the error of your ways.
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Mary (YramAL) -- Most of us were first drawn to this thread out of concern for wornoutmom. You'll see in the earlier pages of the thread all of the information and opinion that was provided for her. I'm with AnneW, now, not losing sleep over her lack of treatment (if that's what she decided). Wornoutmom has tons of information at her fingertips (probably much more than most BC patients making their treatment decisions). She, for one, will not be able to say "I only wish I would have known back then..."
Ultimately, everyone is responsible for what they decide ("own it" as someone else said earlier) and no one can be forced to accept treatment they really do not want. Everyone knows the consequences of women refusing the offered treatments -- more women having progression/recurrence/death from breast cancer than there would have been otherwise.
But what can you do? You can lead a horse to water....
GirlFriday -- I'm a stats/facts lover myself, and I wish there was a place on this site where they were offered more clearly, and where false information was debunked. Who will ever wade through all 50+ pages of this thread? Hmmm, maybe we should start something like that.
I've also had a terrible time looking for info on complementary tx. The ideas out there do not seem to be based on valid research/studies, which makes me wary of them.
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Ditto to almost everything Beeb said.
Not loosing sleep over WOM - she has the data, she will make her own decision (although I suspect she dosen't fully understand it) I agree.
Consequences of women refusing offered treatment. Generally agree for higher risk women because generally offered treatments are appropriate. But some women (especially lower risk patients) are over treated because of docs wanting to do everything the can to prevent recurrence, even if that everything is highly unlikely to benefit a particular patient. I agree with many from the alt. side that women need to understand the likely risk and benefit of proposed treatments to them as individuals.
Agree that meaningful stat's on benefits of complementary therapy are very difficult to find because they mostly don't exist - except for some well conducted studies on weight gain (very bad for women diagnosed when premenopausal).
Even though MOM kind of creeps me out, he did open my eyes to one thing - I spend too much time on BCO. Its too easy to get sucked in the craziness here.
WOM has helped me understand that people are mostly going to do what they are going to do regardless of advice from an intenet forum. This is probably a good thing in most cases - exception for WOM noted.
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For those of you that are better researched and more experienced than I are there stats that say what women dx with BC die of? I know that's morose at best, but really...I have a low grade rare cancer...I can find nothing on it...but at my age 37, am I more likely to die of breast cancer or something else? Is BC the death bell tolling? How often is it a blip on someone's health hx and not much more? There are all these survival rates and I just get so confused and frustrated. I can't compare my case to anything higher stage or higher grade, not in an emotional or a physical way. I meet with my MO next week...the one that told me I'll most likely have cancer again in my life time WE the F that means...Tamoxifen is in my future, I'm 100% ER+, and I just can't find any guidance on what I really need to do. I don't feel "safe" going all alternative, and I do doubt certain aspects of conventional because of the "over tx" possibility. Numbers and research are essential to my decision making. There are just so many scare tactics out there, and so much false bravado. I can eat healthy, I can exercise, I can make good healthy choices in my lifestyle, but in the end, I need to see those stupid graphs and colored lines to make me feel secure about my tx decisions. Obviously this doesn't completely fit in with this discussion...it's just my rant.
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GirlFriday: I like to look at stats too but sometimes it is hard to find good stats for your particular kind of cancer. I don't know too much about Papillary Carcinoma, have you looked here for people with that diagnosis? It seems to me the majority of BC patients go on to live long lives. Like you said, it's often a "blip." I don't know why your MO thinks you will have cancer again, could you get a second opinion?
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GirlFriday, you asked the million dollar question we all have. Will I die of BC? I have also struggled mightily with the question and done tons and tons and tons of research to try to get at the answer. There is no easy answer.
I come back to two thoughts:
1) Most women who are diagnosed with breast cancer do not die of it. On the order of 80 percent survive the cancer and die of something else (this is based on govt incidence and mortality statistics, SEER data). So 80 percent of women who ever get a BC diagnosis, do *NOT* die of the disease. That's pretty good.
2) No breast cancer patient is completely safe, and no one is completely doomed. And we all fall somewhere on a continuum in between the two ends (safe and doomed). But even the best of diagnoses (say low grade DCIS) can progress...and even the worst of diagnoses (high grade metastatic) can be managed for a long, long time...long enough for the woman to die of another cause.
I'm about your age and we younger people do have higher risks for recurrence (compared to older women). But we're typically treated more aggressively which helps even the odds (so to speak.)
Your early stage, low grade cancer bodes well for you. That said, if I were you, I wouldn't be cavalier about turning down the suggested treatments. If they're offered, the docs think you could benefit from them. And the stakes are so very high (life or death.)
I just started Tamoxifen myself. So far, not a single side effect. I'm thinking of it along the lines of a BC pill -- a hormonal alteration, with some potential side effects, but overall likely to be beneficial to me.
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Lynn: She actually just kept telling me I could get a 2nd opinion...but I'm a little limited by my insurance at this point. I've only met with her once, and now that I've gone through my surgery and rads, I have the "survivorship" stage of my tx plan...I love the BC tx center I've been going to. I've had wonderful interaction and assistance at each step of this process...well all except for her. I just have to keep spinning my emotional wheels and get through this next appt with her before I make my decisions. But I'm impatient...so here's my beef with the stats...This is on the Am Can Soc page updated 2/9/11...WTH do these mean any way? There's nothing about grade on here. I can't seem to locate grade info in any stats. But these are just for 5 year survival rates, and there's a note that says rates drop by stage at 7...but no data. We're a similar stage, but we are polar opposite grades and status. I've already been a fluke in terms of stats, my age, my type, my family hx...I guess I just want more data so I can wrap my brain around it all. I've tried to find other women with Papillary...I've located 4, all with BMX...eek...I had a Lx...
In regards to these stats, with so little clear and concrete in terms of treatment, how is it that each of us aren't fiercely attacking our cancers with all means necessary, conventional and alternative? With all of the experience on just BCO alone, why do we not have better information?
Stage: 5-year Survival Rate
0: 93%
I: 88%
IIA: 81%
IIB: 74%
IIIA: 67%
IIIB: 41%
IIIC: 49
IV: 15%
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GirlFriday, I believe that those stats are outdated, quite outdated. I know because I was diagnosed stage IIb and at the time, my prognosis was between 80 and 85% (depending on the calculator). This was taking my treatment plan into account. Without treatment I think it was just above 60%. So the figures you posted are just wrong and i am concerned they will scare people.
Now that I've made it this far my prognosis is in the high 90s.
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MOTC: I thought they were scary too! Here's where I pulled them from
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-survival-by-stage
Where are the "calculators" based on tx plan?
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These numbers don't make any sense to me and the website doesn't say if it is with or without treatment. For example, it has the survival of DCIS as 93%. I know the actual number is more like 98% or 99%, and actually if its true DCIS without microinvasion, it would be 100%.
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I thought there was a nearly 100% 5 year survival rate now for stage 1. I know that there is some risk with dcis, because it has to return as invasive ancer, then progress. I thought the mortality risk associated with dcis was more longterm, after 5 years for sure. I know there are exceptions. My MO did a little of this survival statistics with me, but using 10 years. I think those stats are outdated.
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I went to lifemath.net...and apparently my cancer drops by 3 years from a 44.8 max life expectancy to 41.8 years. Ha! but then it says that in a 15 year cycle, only 8/100 will die from BC. hmmm....
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GirlFriday: You misunderstood the information. It means your life expectancy is shorted by 3 years. In other words if you didn't have breast cancer one would expect you to live an additional 44.8 years. Since you do you now have only 41.8 additional years. Assuming you're 35 it means you (with your diagnosis) are statistically expected to live till you are 76.8.
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I'll say it again, and can't say it enough. What all our opinions are doing is creating a repository of information that a woman, just like myself recently diagnosed and scared to death, will find. And it might change her life.
Doing the best we all can to offer the most recent and correct information (understanding most of us are not medical professionals, and all too human) is the responsible way to participate.
I'm sorry if it is offensive to people who have already made their minds up or feel "beat up" when they come to discuss naturopathic therapies. This is a public forum, not a private meeting.
It is my opinion, and I believe the opinion of many people here, both naturopathic and/or allopathic leaning that WOM is endangering her life if she does not get treatment. Sadly, the window may already have closed--most treatment is to commence within a pretty short window. Chemo particularly.
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This thread has not changed and says more about some of the posters than about the real science - and lack thereof - of mainstream breast cancer treatment at various times and junctures. Pure politics. I'm not going to listen to the campaign dribble from the overpaid, underworked, cable TV pundits, so I certainly won't listen to cancer punditry either - or to insults at those who choose non-conventional ways. It's gotten tedious.
Edited to add: I could have inserted this post anywhere in the last five or six pages. I just happened to be awake and posting after a long hiatus now.
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I simply don't understand the mud slinging. We disagree. Period. We are populating a thread on what is (amazingly enough) considered debatable.
Please spare me the "cancer punditry".
Edited to add: I realize there are folks who believe there are alternatives to conventional therapy. I'm confident one of the thousands upon thousands of alternative routes--from milk thistle, to CoQ10--will pan out in decades to come. What I'd hoped for, and Nanay started (though it wasn't really readable/logical) was threads pointing to studies where we can read, and actually digest new ideas on alternatives.
No one is pointing to studies suggesting viable alternatives to allopathic treatment for a Stage 3 patient. I'm not even that stubborn, and I can't figure out how anyone can conclude standard of care treatment wouldn't be a good option for this patient. It's just empty "go your own way, we support you" cheerleading.
With all due respect, and call my stance what you will: that haunts me.
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GirlFriday -- those stats are interesting, but you're right, they are *extremely* general. They say nothing about cancer grade, receptor status, type of BC...all those factors that also affect prognosis. They also say nothing about what type of treatment the patients got. As we know from this very thread, some women choose every possible type of treatment, some go home after their diagnosis and do absolutely nothing. The stats also report survival very generally, so, for example, a 72-year-old woman is diagnosed with DCIS and dies 4 years later from a heart attack, she is counted among those who did not survive 5 years.
Besides lifemath and cancermath, there's also Adjuvant Online. That's what many of our oncs use to give us our stats. It incorporates data from many studies. Adjuvant says you have a 90 percent chance of being alive in 10 years. (includes your current age, ER status, and cancer size and grade.) A 9 percent chance of dying from breast cancer, and a 1 percent chance of dying of something else (the proverbial bus.) Hormonal therapy would make it 93/6/1.
However, it's significant that you have papillary carcinoma. This was the type of cancer I was originally suspected to have so I researched it back then. I remember reading that the prognosis for papillary breast cancer is particularly good. You will probably not find lots of big studies on it, because it is relatively rare, but I bet if you search places like PubMed you will find a few studies that talk about it specifically.
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GirlFriday, additionally, your Oncotype, according to many oncologists, trumps the other calculators. I always liked to aggregate all of them (Adjuvant, Oncotype, Cancermath) as Oncotype hasn't been around that long.
The sad news is, a lot of new studies, even out of alternative research centers like Block, are finding mixing allopathic and naturopathic can be contraindicated. It's not as simple as "add in more naturopathic and get a bonus on your allopathic treatment".
"Emperor of All Maladies"--the title of a book on cancer. Probably the most elegant and correct title I've ever heard. A merciless and shape shifting emperor.
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I read your post Nerida. Why did you delete it?
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nerida: I did the same thing earlier on another thread. I deleted my post a few hours later. Why are you trying to hold back?
LtotheK: Do you recommend that book? I have heard it is very good.
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Lynn,
I read the book and loved it. It's pretty dense and technical in places, but very, very interesting. A little scary too, to be honest, to learn how complicated cancer is. But I always think its good to be informed.
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It is a fascinating book, but I think spending time on these forums makes us better educated than the average reader of that book. Its main theme is that cancer is brilliantly elusive. He has some beautiful metaphors, and some great thoughts.
It is actually a wonderful book to educate the legions of people bothering us with the "are you okay?" and "did they catch it early?" cliches.
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Beeb75: To tell you the truth, I have been scared about reading it, but I really want to. It seems like the type of book I would have loved to read, before I was diagnosed. Guess I need to brave up and get informed.
L: So maybe a good book to have on hand to loan to those friends? Here is my favorite question people like to ask: "Did they get it all?"
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...but this post is not about me, as i have been reminded of alot
Who did that? Who is to say who this thread is about? Why hold back? No one else does. Best wishes and good courage to you as you work out your treatment decisions.
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Nerida: I am glad you have your psychologist to help you; this is too much for one person to think about. I am sorry if someone made you feel unwelcome here, it seems like anyone should be able to post on here, especially people like you, with so many questions, trying to decide what to do.
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Forgive this non-sequitor, was working on this post when the other discussion broke out...
I wanted to post these stats too, in comparison to the ones GirlFriday found. These are from SEER data (from the government)
Stage Distribution and 5-year Relative Survival by Stage at Diagnosis for 2001-2007, All Races, Females.
Localized (confined to primary site): 60% of cases, 98.6% not killed by BC within 5 years
Regional (spread to regional lymphnodes): 33% of cases, 83.8% not killed by BC within 5 years
Distant (cancer has metastasized): 5% of cases, 23.4% not killed by BC within 5 years
Unknown (unstaged): 2% of cases, 52.4% not killed by BC within 5 years
http://seer.cancer.gov/statfacts/html/breast.html
You can see these are quite different from those from the American Cancer Society. That might be because these are 'relative' survival, which tries to assess the actual risk of death from breast cancer. In other words, the ones from the ACS include a lot of 72-year-olds dying from a heart attack within 5 years of their BC diagnosis
That might really be the explanation, if you consider that pretty much no one with DCIS dies of BC within 5 years, so 7 percent of that population died anyway of something else. If you add that 7 percent to all the other stages, you start getting near the numbers above, which reflect (essentially) deaths from breast cancer only.
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I missed Nerida's deleted post....
Nerida, I truly don't know how successful chemo is for metastatic BC, though I assume it offers some time benefit or else it wouldn't be offered. Time isn't everything though. Your onc, also, should be able to help you clarify all that -- what you can hope to get from a particular chemo, what the downsides are.
You're hormone positive and just recently diagnosed, though, seems like a lot of women do well for a long while -- years and years in many cases -- just using anti-hormonal approaches. I wish decades for you...for us all.
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Nerida - feel free to ask anything. Sometimes people get so caught up in the arguments that they don't always notice all of the posts - it's not personal at all. Every time I post on here, I don't always have someone refer to that post and I don't feel ignored and I don't care if I am being ignored either. If you have a specific question, start your own thread - it will be more noticed then.
((((((((((HUGS)))))))))))
Sue
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Neruda,
That sounds fascinating and I would also love to hear more about such women. If you find them, their blogs or books or articles about them, please share them here?
i've also heard of spontaneous remissions of cancer. I believe it happens. Makes sense that some bodies find a way to smack down the bad cells. I just wonder if there is anything we can do from 'the outside' to make that happen. A way of eating, a supplement, a lifestyle change. It seems to me that cancer is so much more complex than that.
I'll dig around myself on the topic.
I think your situation is very different from WOMs because in her case, there is an approach that studies show can cure many women. For women with metastatic cancer, that cure is much more elusive...makes total sense to try to find any examples of it by any means.0
