Data On Alternative Vs Conventional Treatment?

DivineMrsM · February 2016

I fully believe in conventional medicine. But I was wanting to know if there is any kind of data kept on women who use only alternative medicine to treat breast cancer, like if they went into remission and stayed that way or if they progressed to end stage. This is not any kind of slam against alternative. Adults are free to chose their type of care. I was hoping to start a conversation here on what you know and what your personal experience has been about how actually effective alternative treatment is.

Certainly, we've heard of cases where women with lesser stage bc have done only alternative and been able get rid of the cancer without reoccurrence. But do you think there are many stories like that for women with metastatic/stage iv bc? Just curious.

I've been five + years dealing with stage iv bc from the start and chemo and Arimidex have kept me stable. Do you think I would still be here had I chosen alternative treatment rather than traditional treatment?

RosesToeses · February 2016

This is an article I read a while ago that I found very interesting:

http://onlinelibrary.wiley.com/doi/10.3322/canjclin.14.1.3/pdf

It's basically what the stats were for untreated breast cancer before there were treatments, and while it varies by grade, it's still all pretty grim.

I know people will say, "well untreated isn't the same as treated with [insert natural cure here]." But, on the other hand, when you're talking about a population living from 1805 to 1933, you by default talking about all organic, more exercise, no or severely limited processed food, low sugar, fewer "toxins", etc, so some of the natural cures people do are probably not that far removed.

I'm curious to hear what others have to say. For myself, I've read enough bad things about supplements that I don't mess with them but I know some others here swear by them. It's an interesting topic, for sure.

dlb823 · February 2016

Great question! Sadly, when it comes to mbc especially, I don't think there are even totally accurate stats on conventional tx, no less alternatives. I also think that our bc's are each so individual, you are likely to run into similar experiences with both -- women who went alternative at a lower stage and did/didn't progress and/or survive, just like those who went conventional. But who knows -- perhaps some bc never would have progressed no matter what they did or didn't do. I have personally known at least two women who did exceptionally well with mostly alternatives for many, many years, although they both eventually succumbed to mbc after seeking conventional tx when they felt alternative options were no longer helping them -- much the same as people who more frequently do it the other way, looking to alternatives only after conventional medicine has nothing left to offer them. And those who did the mostly alternatives route (and I say mostly because I never knew their original dx or tx -- only knew them after they'd been mbc for 20+ years) were quite wealthy and could afford the tens if not hundreds of thousands of dollars it cost to seek tx at clinics in various far flung locations.

The fact that conventional medicine for cancer is now focusing on immunology I think points to some interesting common ground, as many alternative docs and protocols, from Dr. Burzinsky (the famous TX doc) to simple Vitamin C infusions, focus on building the immune system (vs. killing the cancer cells), albeit only with natural substances or holistic therapies. What I personally do not like about alternatives for cancer -- especially breast cancer because there are so many variations of the disease -- is the one protocol fits all mentality, which I have personally run into with alternatives. In other words, practitioners who have had good results with other bc or other cancer patients, thus are positive their tx will work for you. I think this is incredibly naive compared to sophisticated testing and expertise of docs who deal with bc 100% of the time, although I suppose conventionals are also somewhat limited as of yet when it comes to truly personalized options.

zarovka · February 2016

This is the best site that I have found so far as summarizing the available clinical data for specific alternative therapies.

http://cam.cancer.gov/health_camaz.html

You can also search Pubmed for research on medical outcomes of specific alternative or experimental approaches on specific cancers.

This is a reasonable site on Integrative Oncology. The articles support the alternative approaches he recommends with data.

In these forums researchers generally look at how alternative approaches can enhance rather than replace traditional approaches. I am not aware of any reliable studies of how people generally fare on purely alternative approaches. Most Integrative Oncology sites promote alternative approaches but adamantly recommend against relying solely on alternative approaches.

The only universally effective, and proven alternative medicine is the "placebo effect". When you feel like you are on the right track and you feel you have an edge that will help you win your health battle, you mind rallies your body to fight. That has been proven again and again and it is very important. IMO, if you drinking green tea gives you confidence, you should definitely drink green tea. I pay close attention to how feel about what I am are doing. But no one thinks that optimism alone will cure you.

In my treatment plan I aggressively complement my traditional medicine with alternative approaches: exercise, lots of sunlight at mid day, mediation, yoga, artemesinin, CoQ10, milk thistle, a multivitamin and fish oil. I am eliminating refined carbs and sugar from my diet and reducing meat. I am reducing my stress by a lot and working to heal emotional issues that I've carried with me for a while. From my research, the benefits of these strategies are well supported, but so are the benefits of hormone therapy and Pablociclib.

I've noticed that many people trying to make a business of alternative therapies to cancer out of their own cance cure, like susan sommers, in fact used traditional medicine extensively.

To answer your question directly, I do not think you would be here today without the traditional treatment you chose. Congratulations on your remarkable journey.

Shutterbug73 · February 2016

I confess, I am leary of supplements. Even before cancer I was aware that supplements are not without their own side effects and dangers. (For instance, did you know too much zinc can make you lose your sense of smell permanently? Or that St. John's Wort makes birth control pills less effective?). Too many people say "It's just an herb/vitamin/mineral, what could it hurt? Natural does not equal harmless.

My feeling about alternative medicine is, if it works then there should be double-blind randomized trials to test that hypothesis and prove its efficacy. If it stands up to science, great! I also do believe in the placebo effect, and that works for both conventional and alternative medicine.

That being said, I do meditate because I find I really helps calm my mind and helps me cope with the mental and emotional aspects of the disease. It also helps me reduce stress, and that could only be a good thing. I try (and often fail) to eat a healthy diet because I know I am relatively healthy aside from the cancer, and I want to do all I can to stay that way.

And I echo what dlb said about some cancers never metastasizing. Perhaps those women with early stage disease who relied only on alternatives just got lucky and their cancer wasn't the traveling kind.

exbrnxgrl · February 2016

Good question , divine

"My feeling about alternative medicine is, if it works then there should be double-blind randomized trials to test that hypothesis and prove its efficacy. If it stands up to science, great! I also do believe in the placebo effect, and that works for both conventional and alternative

Thanks shutterbug, my feelings as well

RosesToeses · February 2016

I also think there's sort of a blurred line sometimes between what is really "alternative" and what isn't which can confuse things when we're having discussions like this.

Is getting regular exercise and eating a diet centered on fruits and vegetables with whole grains with limited processed foods and sugar alternative? I think some people put it there but both those things are recommended by most mainstream doctors and nutritionists (including mine!) and are also backed by multiple studies, so personally I would say no but others, I think, would say yes.

Is meditation alterative? A conventional psychologist who works with my cancer center recommended it to me for chemo fog and told me there were studies to back that, too, but again it is also often in the alternative camp.

For me, the difference is in whether those are things instead of conventional standard of care or with it. And for me, I see direct correlation in my tumor markers and scan results to certain medications and right now I'd cut the person who tried to pry the Xeloda out of my tightly clenched fists to get me to give them up for juicing, but I also get 10,000 steps a day and a "rainbow of fruits and vegitables" because I believe those things help, but I don't really consider that alternative.

DivineMrsM · February 2016

Roses, ha, ha, love your comment about cutting someone who tried to take your meds and replace it with juicing.

What exactly alternative comprises is something I think even those who go that route are often trying to clarify. For example, for some, getting the tumor cut out is not considered relying on conventional "medicine" as it is a surgical procedure; it is only having chemo and rads and taking antihormonals like Tamoxifin or Arimidex that many in that community label as conventional.

To my way of thinking, alternative means "in place of". Complimentary means "in addition to".

So Rose, your comment is more to my point. I wonder how many women diagnosed with metastatic breast cancer would chose juicing *in place of* conventional medicine like Xeloda,Falsodex or Herceptin, and then how many have results as good as those taking conventional routes? (I think the results would not be good). I am all for complimentary medicine and methods that work alongside traditional medicine, and I have incorporated complimentary methods in my life. I would do more, like acupuncture, if I could afford it. But, like you Rose, I would never do something like replace the Arimidex with a diet of cottage cheese and baking soda.

Longtermsurvivor · February 2016

Hi Divine Mrs. M.,

I seldom engage in any type of vs. (either-or) debate, because it's a no-win for everyone.

Proponents of conventional medicine have not only their tools, drugs, methodologies, but also a world view that's often in contrast to proponents of alternative medicine. I've walked on both sides and respect the strengths and weaknesses of both systems. There are folks offering false promises on both sides and those of the purest of hearts and deepest of concerns for their patients. Some things "work" in both systems, but many things don't when facing advanced breast cancer.

You are right - complementary (not complimentary - free) medicine is a bridge medicine that combines the best of both worlds for the greater well-being and care of the patient. Many large cancer centers and even smaller ones offer complementary (aka integrative) care to their patients that includes counseling, nutritional advice, acupuncture and support for lifestyle changes.

Most offer support groups too, because many patients swear by them and research even supports support groups for improving and possibly prolonging life.

I want to point out that we're engaged in a huge experiment here at bco - we're participating in support groups. Will they cure cancer? No. Will they lead to increased quality of life? Maybe. Will our hearts be broken when members suffer and die? Probably. Will we find support and good advice for finding new ways of coping with and confronting the beast? Seem to. Will we help one another find and stick to treatments? Likely.

Is there an increased survival advantage to support groups, whether in person or online?

All worth thinking about.

Not really worth waiting for a double blind study to justify the value of support groups like the bco experiment. If we're happy being here, we're happier and it's not a waste of our time or energy. If we're not, then we can wander on to what is more healing for us.

The work of Stanford oncologist David Spiegel, MD has long interested me. In his 1989 Lancet article, Effect of psychosocial treatment on survival of patients with metastatic breast cancer, he reported, "The effect of psychosocial intervention on time of survival of 86 patients with metastatic breast cancer was studied prospectively. The 1 year intervention consisted of weekly supportive group therapy with self-hypnosis for pain. Both the treatment (n = 50) and control groups (n = 36) had routine oncological care. At 10 year follow-up, only 3 of the patients were alive, and death records were obtained for the other 83. Survival from time of randomisation and onset of intervention was a mean 36.6 (SD 37.6) months in the intervention group compared with 18.9 (10.8) months in the control group, a significant difference. Survival plots indicated that divergence in survival began at 20 months after entry, or 8 months after intervention ended."

A later 2007 study seemed to refute the survival benefit for most participants, but noted, "The newest research did, however, confirm that support groups improved quality of life for the participants". In the journal article abstract the improved quality of life wasn't mentioned, but the improved survival of those with ER- disease was - Effects of supportive-expressive group therapy on survival of patients with metastatic breast cancer: a randomized prospective trial (free full text article available at the link).

His further research has supported the benefits of mind-body medicine for supporting both quality and quantity of life in those with metastatic breast cancer.

Thanks for starting this topic/thread dear Divine Mrs. M. I didn't plan to participate because I don't like arguments or false polarities, but I do like online support groups and civil conversations about topics of mutual concern - our survival and well being are paramount.

Wishing you a good, good day! ~ Stephanie

barbe1958 · February 2016

Interestingly enough, I sort of "left" bco in November of 2014 when I moved. Then I started a job which I loved - BUT - last July I got a new boss who hated me. Seriously. She rode me day after day and I would go into my office and cry. I didn't even cry when my parents died, or when I was diagnosed with cancer! Then in October I felt a new lump. I've had a biopsy and lumpectomy which is positive for breast cancer but I don't have the markers in yet. I had a CT and bone scan this week and will see the surgeon on Tuesday and new onc on Thursday to set up a plan.

I had a double mast the first time without any further treatment. I've been 7 years "cancer free". So. Did the stress of the new boss and/or lack of bco support change my body chemistry? If I'd had chemo and/or rads the first time, we'd be saying "hey I had a good 7 year run, I'll take it". But I got the 7 years without any treatment except surgery. This time I can do the chemo and/or rads I didn't do the first time. Sadly I kind of made a "deal" with God that if I stayed cancer-free I'd stop drinking. Two of my kids got married and I toasted them with ginger ale. Then by September I was so stressed with my horrid boss that I started having a glass or two of wine occasionally. Did breaking my "deal" with God cause my new cancer????

So just how much does our thoughts create - help - stop - change our body. They say what you think you are, you are. Now I have to think of myself as a fighter. She fired me 3 days before I got the diagnosis (she knew I was getting it). After all, wouldn't she be a real bitch if she fired me AFTER learning that my cancer returned?

DivineMrsM · February 2016

Longterm, thanks for your comments including complementary vs complimentary. I'm not sure I recognized the difference until your post.

I don't consider my topic any kind of argument and feel myself to be civil and respectful of all opinions always knowing I can simply leave a conversation if I don't like the direction it's going in.

I don't need a study to know that the bco forum leads to better quality of life and when talking about it, I describe it as a support group. I also believe it can lead to a longer life in an indirect way in that, by discussing treatment options with others in similar situations, it may lead us to make better, smarter choices in our personal treatment than if we'd been uninformed.

Barbe, I am sorry to learn of the recurrence. Looking back, it's just as possible that you could have had chemo, the best boss in the world, drank no alcohol, keeping your promise to God and would still have a recurrence. I wish all the best to you as you get further treatment.

barbe1958 · February 2016

Thanks Divine, that makes me feel better! Others have said it, but to hear someone who is in my "boat" makes a big difference. I lived on bco for 6 years and took a lot from it and tried to give as much as I could. I, too, believe it helped me make better decisions because it's full of people who have gone before us and blazed the trails. I got the double mast to avoid chemo and/or rads and now I have that option with my recurrence.

JeninMichigan · February 2016

Divine

I think you asked a great question. Most of us have been offered some kind of alternative treatment that would miraculously save our lives. Hard not to wonder what would happen if you would forgo the harsh chemo drugs. While I am all in on complementary treatment, I am not in enough not to get medical drugs. However, that being said I have made some decisions to stop my AI treatment as the side effects where wreaking havoc on my quality of life. Instead I opted to be able to vigorously exercise and adopt a clean diet. However, I am only mildy ER positive and my have been NED for a long time. The one thing about most medical doctors that irritates me is that they are not well educated on diet, supplements and complementary options. My first oncologist dismissed supplements all together and told me take nothing ... not even a multivitamin - while on chemo/radiation. I went to the University of Michigan and they were completely fine with my very long list of supplements and further offered me a consult with a nutritionist. Too many medical doctors are quick so just say no and not even consider the benefit of supplements. How great it would be if our medical doctors were willing to work with naturalists to give us every benefit possible.

Jennifer

exbrnxgrl · February 2016

Kris Carr's story is wonderful but is anecdotal. Where's the data

DivineMrsM · February 2016

I read many books about cancer, medical miracles, remission, well being, healing. After being diagnosed, I tried reading Kris's Carr's book even tho the title turned me off. But it was a best seller and I kept an open mind. Till I started reading it. I did not care for it and did not finish the book. Here is part of a review (not mine) from Amazon about the book which describes much of how I felt, too:

....I wanted to like this book..... I am so glad that Kris Carr has dealt so well with a devastating diagnosis.....I think the author's heart is in the right place, but something went wrong here...When I had cancer...I didn't go through a decision-making process about whether to tell my esthetician about my illness. I wasn't worried about getting my bikini area waxed. I didn't go on a "cancervation" with my "posse", because I was working to pay my bills and keep my health insurance. I didn't attend retreats and trainings and buy hundreds of dollars of goods from Whole Foods on shopping trips and make a documentary about myself. People deal with trauma and heal in different ways, and spending freely seems to have been beneficial to Kriss Carr's personal journey. Each woman featured in this book talks about her height and weight, and Kris Carr makes numerous references to her own weight and desire to weigh less...

I am happy for Kris Carr's results. Looking up Caryn's word "anecdotal" to describe Carr's story, I see the definition means: based on personal observation, rather than systematic scientific evaluation" and that sounds about right. I just never clicked with Kris Carr's story.

barbe1958 · February 2016

I've already had someone tell me to do the Gershwin protocol....sigh.

Xavo · February 2016

Has anyone noticed this article from 2009? It might explain some cases of autoremission.

http://www.nytimes.com/2009/10/27/health/27canc.html?_r=0

Lily55 · February 2016

For a detailed assessment of treatments for breast cáncer you can purchase (it is 50 pages long) the MOSS REPORT. He is a medical researcher and assesses ALL treatment for various cancers, so there is a report on breast cáncer alone. It is a tough read as its very dense and talks survival statistics, but it iw vey well researched. He exposes the charlatans and recommends the good clinics doing alternative protocols well.....as opposed to poorly.........if you want to go the alternative route, even just partly, its a good investment.......just google Moss Cancer Treatment reports

Longtermsurvivor · February 2016

HI Barbe,

Sounds like your new diagnosis is stirring things up for yourself and those who care for you.

While it makes good sense to stop and take stock of where you are and what factors may have brought you here, it also makes sense to let go of any blame. You have no control over those factors now and can make choices about what you want to do - things that feel good to you, whatever the outcome. These days I'm all about "no regrets" and "living well is the best revenge against cancer". Just letting go of shoulds and have-tos is a big relief. And knowing I've made my best choice for the day and can change my mind tomorrow helps me let go and live without regrets.

A recently diagnosed friend told others that he fully trusts his team. He doesn't disclose that his team includes both conventional and integrative/complementary practitioners, professionals and lay folks like me. He just gently closes the door on unwanted advice, while keeping it open to all healing thoughts/wishes/prayers/feelings.

When folks offer unwanted or odd advice, I just figure it's about them, not me and is reflective of their caring - not my need. I focus on that, not the anxiety that often motivates them. Our warm relationships matter, not the content of their "advice".

btw, I love hearing Gerson called Gershwin! I will remember that.

As the saying goes, "take what you like and leave the rest."

warmest healing wishes always, Stephanie

Longtermsurvivor · February 2016

Dear Divine Mrs. M.

You are the very essence of diplomacy, tact and civility!

The members of bco and our conversations have also been exemplary – supportive and informative.

My reluctance to participate in either-or, black-and-white debates is my own. Life is so much more complex, nuanced. And guessing the whys and wherefores of others' decisions is futile.

Heck, at 16+ years with lung mets, I sometimes still struggle to understand why people smoke when it might lead to a fate like mine. And I understand that they can/do/will, even if it makes no sense to me. Mine is not to judge, but to move upwind of their smoke or even leave the premises.

Thank you for all you do here!

warmly, Stephanie

exbrnxgrl · February 2016

Barbe, my old friend,

I am glad to see you back, although not under these circumstances. I had wondered what had happened to you. Nothing to advise, but know that you are in my thoughts and I'm (virtually) here for you.

Caryn

DivineMrsM · February 2016

Longterm, your comments are insightful, "let go of blame"....agree 100%

I like this philosophy, too: "knowing I've made my best choice for the day and can change my mind tomorrow helps me let go and live without regrets."

I like the response of your friend and I may use it, too, saying I trust my team. I am realizing, as you say, oftentimes advice is made from a place of caring, although I've had several people "warn" me about Big Pharma and its conspiracies and I don't see that as coming from a caring place. And there are those who come across as blaming someone with cancer for not eating or exercising the right way therefore causing their own cancer. I have learned to preface my responses with something Ike, "I know you have my best interest at heart". It cuts down a lot of drama

Lily, the Moss report sounds interesting but too technical for me to figure out

DivineMrsM · February 2016

Xavo, interesting article....

Longtermsurvivor · February 2016

Hi Divine Mrs. M.,

I agree, it's no fun to have fear projected on us - fear of cancer, suffering, death, Pharma, medical errors or alternative treatments.

It's a warped kind of caring.

The folks doing it are trying to help us, to pull us back from the precipices they perceive, but we might have different concerns/approaches/risk tolerance. We might make different choices than they'd wish for us.

Here's another thought that comes to mind. A friend trying to decide what to do for early stage breast cancer corrected me when I used the word choices. She said, "I'm not being offered a choice between something good and something better, but different bad options. I'm not making a choice, I'm making a decision."

I think it's human nature to want more power and more positive choices. And there are truly some decisions that are between bad, worse and worst.

Groups like bco help us evaluate our options and to make the best choices or decisions.

For this, I am grateful.

warmest wishes, Stephanie

Fitztwins · February 2016

Watched a Law and Order rerun episode last night that addressed this very issue...

MusicLover · February 2016

I thought that Kris Carr had an experimental treatment which was successful, and of course, she has added a lot of green smoothies but I think it was that experimental treatment which made the biggest impact.

DivineMrsM · February 2016

Fitz, I love Law and Order, not sure I remember the episode, but hope to see it in a rerun.

Longterm, you bring up another issue: those who see conventional medicine as bad but often necessary vs. those who see it as good/better/best options. Count me in the latter. I don't really understand your friend's perspective that she has different bad options.

I am currently reading "The Death of Cancer" written by a pioneering oncologist whose career began in the 1960s. I feel extremely fortunate for the treatments available to me since the diagnosis in 2011 compared to treatments in the 60s and 70s when it seems so barbaric now what they did back then. Bad options sounds kind of ungrateful to me.

exbrnxgrl · February 2016

Real choice would have been never having been dx'ed with breast cancer. But since I was, I have to work with the realities of current available treatment. Wishing for something that's a sure bet, non-toxic with no side effects is wonderful, but does nothing for me, or any of us, here and now. So using the words options or choices is a matter of semantics for me. My reality is now and it doesn't matter what I call it

DivineMrsM · February 2016

The way I look at it is the "bad" part was being diagnosed with bc. The worst part was being diagnosed stage iv and learning there's no cure and not knowing how I would respond to treatment.

The "good" part was that there were treatments available to me for the type of bc I was dealing with. There was medicine to help alleviate the side effects of chemo which, having a brother who had testicluar cancer in the 70s, I was well aware of how it took a toll on the body. In 1994, Aromatase inhibitors began being used worldwide to treat advanced breast cancer. The first complete PET scanner was invented around 2001. The "better" part is that these advancements all contributed to my continuing to live with bc at stage iv for over five years.

Many of us remember the radical mastectomies that were once the standard treatment for bc leaving women deformed. Better surgical procedures have taken its place. It also became law in the U.S. around 1998 that insurance companies must provide coverage for reconstruction. Herceptin also discovered in the late 90s.

Sure, we all want even more advancements than what we currently have, but I can't look at these things and assign each of them to a "bad" options or choices category.

Tho being diagnosed with stage iv bc is the worst thing that *has* happened to me, it's not the worst thing that *could* or *could have* happened to me.

DivineMrsM · February 2016

Oh, bc.org, how I take thee for granted, something that has provided me with so much. I was remiss to mention that breast cancer.org was founded in 1999. Women with breast cancer did not have such a forum to go to prior to that time. It's an invaluable resource for thousands upon thousands of women. I can't say how I'd be doing today without this advancement.

Simply having medical information available via the Internet is to our benefit. I well remember getting our first personal computer in 1998 with dial-up, dinosaur speed internet. Prior to this, we had to search libraries and such for medical knowledge. So much is at our fingertips now.

barbe1958 · February 2016

Longterm, great advice, thanks. You ladies have allowed me to dump some of the guilt and I appreciate it.

My first time around I had choices, too, and chose a double mast instead of chemo and/or rads and was glad I did! About a year later, it was discovered that chemo didn't work on slow growing cells, which mine were, so it would have been a waste of good health in my system. I'm so glad to see less chemo automatically given. There wasn't even oncotype testing (especially in Canada) back in 2008, so they've come a long way. I agree that a combo of conventional and alternative works best, but it's an individual choice as to what we chose to do from each protocol.

Curious to see what my options will be this time - surgeon on Tuesday, onco on Thursday....

(exbronxgirl, good to see you too! Glad to see you're still around as well.)

Data On Alternative Vs Conventional Treatment?

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