Non-Mainstream Therapies: Are You Curious? Skeptical? Grateful?

ruthbru

A couple years ago I went to a program where the speaker was a doctor,  nutrition specialist, and an eleven year breast cancer survivor. I thought she was extremely interesting and informative. I am listing her tips with a side note from me that since they are a couple years old, some of the recommendations may have changed.

 Here are some of her tips for staying healthy :

1. We all know we should eat more fruits & veggies, whole grains, less red meat, processed food etc. so I am not going to go into any of that (this is me taking in my notes....she talked a lot about diet as you may guess, as that is important).

2. EVERYONE should be taking a multi-vitamin. Make sure it says ‘Complete' on the label. Make sure it contains iodine, Vitamin K, selenium and folic acid along with all the other good stuff. Interesting facts about why multi-vitamins are important:

* older women with the lowest levels of vitamin B-12 were at the greatest risk for breast cancer

* taking acid-blocking medications make you less able to absorb B-12

* she recommends 400 mcg of folic acid a day. It works with the B-12 (studies have found that folates may help to make chemo more effective and decrease side effects)

* B 6 is important in lowering the risk of breast and colon cancer

* she recommends 90 mg of vitamin C

* 30 iu of E

3. Omega 3.....either eat oily fish twice a week or use fish-oil supplements (make sure it says EPA and DHA approved) 1000 mg a day. It's associated with decreased risk of cancer, heart disease, inflammatory disease, depression and more.

4. Vitamin D....a big deal.....she recommends getting it tested (should be between 40-50 ng/dL). She recommends 2000 iu a day to maintain a good level. Many, many conditions are associated with low vitamin D; heart attack, cancers, rheumatoid arthritis, muscle weakness, asthma, diabetics, multiple sclerosis etc. etc. etc. There are over 200 different body tissues that have been identified so far that have receptors for the vitamin D hormone and they need it to work properly.

* adequate Vitamin D levels has been shown to reduce the side effects of taxol based chemotherapy

* Adequate Vitamin D has shown to reduce the side effects of aromatase inhibitors

* start with a multi-vitamin, drink milk, eat yogurt (check and make sure it has vitamin D added), and most people will also need a supplement to keep that high of levels

5. Vitamin K, should get 100 mcg a day. Check your multi-vitamin, not all of them have it added.  Inadequacy leads to an increased risk of various cancers, heart disease, osteoporosis and kidney problems.

 

Momine

Light, not really. The whole point here is that some of us, even in our approach to complementary and alternative treatment modes do not go on "belief."

labelle

Well belief is not bad. There are several studies showing women who believe in their treatments (chemo/radiation) who see them as helpful rather than toxic do better. An of course the placebo effect is very, very real and well studied. Perhaps believing wholeheartedly in our chosen treatments is just as important as the treatments we choose. I'm good with the choices I've made.

I'm still working on the exercise thing these days, as the evidence seems pretty overwhelming, despite the fact none of my doctors have spend anytime discussing it with me (does that make exercise alternative?). Anyway I started with a yoga CD a few weeks ago and just now signed up for a 2 hour Restorative Yoga session that will meet tomorrow. I'm pretty excited about it. I haven't felt like doing a lot since beginning treatment but am now finally starting to feel like I might be approaching something like normal again.

Claire_in_Seattle

I am thankful that we have conventional treatment, and I did everything recommended with the exception of bisphosphonates as had just spent megabux on my teeth. Just down to the last few Arimidex tablets and finish a month from now.

Echoing Ruth, what I do is:

• Exercise. Important as we get older anyway, as who wants to be thinking of the things they USED to do. I do it all, and stronger cycling than ever.
• Little diet change. I have always loved fruits and vegetables, and I cook my meals from scratch. Probably more meat than recommended, but I find I need a lot of protein. My oncologist mentioned that this is because I am fit and need to rebuild muscles.
• Supplements of a multi, vitamin D and calcium.
• Aspirin.
• Aromatic soaks in the bath tub. Candles with dinner. Celebrate each day.

Not complementary medicine, but certainly affects quality of life. Planning adventures and making sure I live life to the fullest. My last adventure was a ski trip away with my guy for my birthday a little over a month ago. Lots of exercise, adventure, gorgeous scenery, good (locally sourced) food, drink, and wonderful company. More to come. One coming up is vineyard camping plus doing the Yakima Canyon Ride.

As I believe life is about balance, I will follow today's 25 mile bicycle ride with a friend with a visit to the fabulous French bakery. And because I am training for summer cycling events, make sure I do 30+ miles tomorrow (hopefully a bit off my beaten track). - Claire

BrooksideVT

Thank you so much, NineTwelve, for starting this thread. I'm really looking forward to some lively discussions.

I'm a big believer in statistics first, all else second. All the healthy decisions (food, product, lifestyle) I made over the past decades did not prevent my cancer (although I somewhat firmly believe it did delay its onset), nor did it do so for lots of women posting on these threads who lived even healthier. With slips (large and small, short-term and long-term), i eat an anti-cancer diet, not so much because i think it will help, but because I am convinced the bad stuff will hurt.

My primary complementary target is liver health. My nutritionist insists that water is the way the liver cleanses itself and, considering that the liver is one of the favorite targets of bc, I now start the day with a couple of glasses of water. I hope a super-healthy liver will be better prepared to repel invaders. A couple of months ago, I had a nasty run-in with a gall stone, with elevated liver enzymes. i went on a near-perfect liver friendly diet (no booze, practically no bad fats, lots of veggies, practically no non-veggie or -fruit carbs). I dropped 15 pounds, my liver enzymes descended to about half their historic level, and my A1C (suspiciously elevated) dropped into normal range. I was surprised at the power of a correct eating plan, and struggling to keep at it.

lightandwind

Yep, everyone goes on belief. When it comes down to it, that is all any of us really have to make our choices. Everyone decides who, or what they believe, and why. People believe things based on different reasons, and different information. Beliefs can define who we are. But beliefs can also confine us.

Whether or not it's okay to take calculated risks is based on belief, and ultimately it is what we all do, when we decide where to put our faith and choose our treatment at any given time. You believe in doing something, then you do it, if you don't , then you won't.

That is why it can be offensive when people come around support forums and poo poo others choices/beliefs, with their own subjective viewpoint. The biggest scams in cancer treatment are a matter opinion.

Momine

Light, I am sorry, but you are wrong about that. There is such a thing as empirical evidence and reality, and thus there are areas of life where one does not have to go on a wing and a prayer, although wings and prayers never hurt.

gypsyjo

I think that we are talking apples and oranges here though there is a relationship between knowledge and belief. Unfortunately, we in the breast cancer community are called upon to make decisions with less than perfect knowledge. We all have to make the call for treatment at different levels of knowledge and sometimes with unsubstantiated belief. This helped clarify this continuing debate for me. I hope we can move beyond the debate so we can focus on what people are doing for QOL and what their experiences with their treatment.  

Belief vs Knowledge

Perhaps you wondered why during your philosophy class the subject matter for trying to differentiate trivial things occurred. Even if the topic was not debatable, it became an issue in philosophy. Maybe that is how things work out. Even simple things become complicated when you relate it through philosophy. Hence, in this article, we will be differentiating two terms which are also often used in philosophy – “belief” and “knowledge.”

Without digging deeper into the meaning of each term, we can define “belief” as “one’s principles” while “knowledge” can be defined as a set of facts. However, if you try to pound your brain more, we can infer that knowledge can originate from a set of justified beliefs. So how can we differentiate between “belief” from “knowledge”?

According to my research, a belief is the subjective requirement for knowledge. This means that a belief is a biased and personal judgment. However, if we have laid proof or evidence, this belief can be considered as knowledge. In other words, a belief can be a certain knowledge. In the Belief-Knowledge Continuum, there are varying levels of belief. If the “belief” has reached a +10, it will now be considered as certain knowledge. If it does not, it will only stay as a belief.

There are three kinds of belief – vague, well-supported, and beyond a reasonable doubt. We can say that a belief is vague when there are no concrete, supporting statements. For example, “Eating nuts can make you smart.” If we will look at the statement alone, this is just a vague belief – no concrete, supporting statements can help prove that eating nuts can make a person smart. In a well-supported belief, you cannot rule out a certain notion. For example, you believed that the test was hard since you got a failing mark. We cannot rule out that the test was hard since you got failing marks. As for the belief beyond a reasonable doubt, we cannot say it’s a fact unless we’re the ones who experienced it ourselves. For example, “The lady saw the World Trade Center collapse.” It was a fact, but we’re still not certain.

So what is knowledge? “Knowledge” is defined as “justified, true belief.” In order to “know,” we have our emotions, reason, perception and knowledge. According to Plato’s Theory of Knowledge, there will be knowledge as long as there is a justifiable truth and belief. We can say that Plato’s Theory of Knowledge and the Belief-Knowledge Continuum coincide with one another. Truth is the objective requirement for knowledge. However, if you just believe that something is true, it does not always make what you believe true.

As we continue to grow, we always gain secondhand knowledge. This secondhand knowledge can be derived from our cultural traditions. In our own culture, there are certain things we must know and learn. Other sources of secondhand knowledge are: school, Internet, expert opinions, and the news media. As long as they are around, our knowledge will continue to stack and pile.

Read more:  Differences Between Belief and Knowledge | Difference Between | Differences Between Belief vs Knowledge http://www.differencebetween.net/language/words-language/differences-between-belief-and-knowledge/#ixzz3VhISG8tp

DivineMrsM

Complimentary medicine has a nice ring to it, very zen like. All things working together for the greater good. Where I live, there are no naturopaths, acupuncturists or reiki healers but I would certainly consider seeking them out if there were. I take many of the supplements mentioned. The biggest change I made since bc is to cut out as much stress as possible. My perspective has changed on life, and many things are pointless to get worked up about. I also find that being able to take my time when doing things is one of my most favorite luxuries.

Alternative, to my way of thinking is doing something in place of something else. I think there are varying degrees of it. I am skeptical of it. In all areas of life, there are schemers and scammers. Preachers have swindled large sums of money from their congregations. Volunteer moms have stolen money from Parent-Teacher organizations. Bernie Madoff bilked investors out of their life savings. Politicians have usd taxpayer money for their own profit. It goes on. Yes, there are even doctors who are crooks. I just don't like the idea that alternative methods aren't regulated or monitored. Anyone can make claims. There are way too many people out there without a conscious who don't lose sleep over making fraudulent claims. Too many opportunists seeking to make money off of those who are ill. And some people will believe anything, not really having a filter or intuition or can be easily swayed by the persuasiveness of another.

When I get strep throat, no amount of raw vegetables is going to make me feel better. I need antibiotics. When seasonal allergies make everything above my neck a sneezing, itching, runny nose mess, I am reaching for Claritin, not coffee enemas and cottage cheese. When I had anxiety so bad that I physically trembled and could not get off the sofa most of the day, I tried prayer, meditation and relaxation tapes for weeks with no relief. The same afternoon I started taking antianxiety medicine, I stood up from the sofa and got back into the game of life. These are less life threatening maladies than cancer. So why would I not turn to conventional medicine when diagnosed with bc? To me it makes sense. There is way too much gray area for my liking when it comes to treating cancer with alternative methods only.

Cheesequake

I can't find the quote now, but Dr David Gorski (aka Orac, a breast surgeon with a blog called Respectful Insolence) wrote something to the effect that chemo will work on a patient in a coma, whether the patient believes in chemo or not. Belief is not a requirement.

Which is a good thing, since I know that if I end up going through with chemo I'm going to have a very hard time believing that something making me feel so awful is doing anything good at all. I tend to stop taking things if they have even mild side effects, like temporarily changing my sense of taste. Staying with chemo will be a huge challenge.

Maybe if they could just knock me out until its over... (Kidding.)

WinningSoFar

I'm kind of a hard sell. That's my natural personality. So, I've decided that what makes me believe in a medical treatment is rigorous science, in other words, at a minimum, several trials that show a statistical benefit to a therapy. Then, I will consider it after taking toxicities into consideration. Unless the therapy rises to that level of evidence, I've decided not to believe in its efficacy. That's my choice in how to approach medical therapy and not everyone would agree that she needs that level of evidence, or maybe even needs more evidence. That's how we differ, I think.

Of course, saying that, I'd not be surprised that I break that rule occasionally, so I don't want to come across as too much of a purist.

lightandwind

What each person constitutes as evidence.....is a choice that makes up their reality, which forms their beliefs, and ultimately decides what they choose for treatment.

Reality is subjective. If we can't be critically minded enough to think that far out of the box, then what is the purpose of the discussion?

Just telling me I'm wrong with no evidence to back it up, doesn't seem fair.

We're all just trying...just doing our best, with what we have at any given time, which is why I think acceptance, and support for everyone and their choices on these threads is called for.

Momine

AndiCBD, lol, I hear you. I am a major wuss, really bad. Chemo was not easy for me (nor was surgery or any of the rest of it). I think I was "lucky" in that my doc insisted on neo-adjuvant chemo for my very large tumor. After 2 chemo treatments, the tumor had shrunk to about half, and after 3, nobody could find it anymore (there was still live cancer, however, we found on path, but the shrinkage was dramatic).

Orac's quip is pretty funny and completely true. That said, I do think that having respect for your treatment team and being able to feel that you can trust them, whether that is an onc or a Reiki healer, are important and contributes at least to QOL.

Momine

Light, there is no real "evidence" that might convince you that there is such a thing as "fact" and "objective reality." I understand that you do not believe this and that you do not operate with these terms, which is fine, but most of the rest of us do. There are many questions that can be approached from more than one angle, but that doesn't mean that everything is relative.

A cancer tumor is reality. It is not relative or dependent on anyone's belief that the tumor is there.

wrenn

I don't see where this thread is different than the other.

BrooksideVT

Thank you for your post, Gypsyjo, which seems so beautifully to illustrate the continuum from alt to traditional. I always wondered why they insisted I take that philosophy course, but am now wondering why I didn't pay more attention.

WinningSoFar

Trying to draw a distinction between what is evidence to one person and what is reality, can be two different things. I may believe that taxol is effective for my type of cancer, but that doesn't mean that it will be. In my paradigm, I made the decision to take taxol for the right reasons (replicated clinical trials showing statistically significant benefit) but the reality is that despite that, it doesn't work on my cancer (.This is just an example, since taxol did work for me.)

In my case, I have a number of therapies that rise to my level of evidence, so naturally I would try all of them before I would lower my level of evidence. That doesn't mean that I'm right--it just means that I have a paradigm that I live to.

Momine

Wrenn, this thread is in the comp forum, not the alt forum. It was started specifically for discussion of all modes of treatment. So, those who have no interest in discussion or who consider it insulting etc are able to avoid it.

ruthbru

The standard of care treatment advice given to us comes from clinical trials that thousands of the brave women who have gone before us have taken part in, literally at the risk of their own lives. A person may have other health conditions which might make any given recommendation unworkable for them, or psychological objections which may cause them to choose a different route. But the recommendations are based on science (and change as new evidence from various trials come in).

Andi, I had a difficult pregnancy, during it I had to focus on my ultimate outcome, a healthy baby (which, is thankfully what happened). I sort of thought about chemo the same way, the ultimate outcome I wanted was a healthy, cancer-free me (which, thankfully is what happened there too.....so far, knock on wood.....I do not discount the luck part in all of this either ).

Momine

Winning, yes, individuals are not collectives or probabilities. A cancer tumor is still reality and fact, as well as palpable in many cases.

lightandwind

I do subscribe to the basic laws of physics believe it or not, at least until there is evidence to the contrary. Yes a tumor is a reality, a mass/ matter, but our beliefs decide how we choose to address or treat the tumor. We all see it differently and take in evidence from different sources, into our different perspectives and each decide on a plan that works for us individually...and that is why it is good to be nice and not poo poo on other peoples choices.

lightandwind

I only consider insults to be insulting.

labelle

From my perspective "standard of care" is just that, the standard doctors recommend to treat BC (or whatever for that matter) . It is what whatever studies have been done, have shown to be effective to some degree and what doctors have been taught to recommend to each and everyone of us, regardless of how much it may benefit or harm us as individuals. Studies are about groups not individuals. It's always up to us as individuals to choose our treatments. I was very surprised when I first came to BCO and some women seemed to believe they HAD to do whatever their doctor said, like if you have a lumpectomy you HAVE to have radiation treatment. Those are 2 different decisions.

While my OC recommended Tamoxifen for me, she could not guarantee it would work for me. Despite all the studies that show various things work some of time for some people with BC, none of them work all of the time for everyone. If they did, then all our decisions would be easy, it would be silly to turn down treatments that are 100% effective, but nothing we do is even close to that. Surgery is probably the most effective and curative option we have and just about everyone opts to have that done, but everything else is kind of a crap shoot IMO be it conventional or alternative, so after having an extensive surgery to remove a tiny tumor and a bunch of DCIS (that final pathology said did not exist) then being burnt to crisp, developing an abscess due to RADs (just like a sunburn they said), having to have emergency surgery to drain that mess and now having an open hole in the side of my breast, I'm going for the "do no harm" things and am pretty leery about just doing whatever the doctor says.

cp418

labelle - you made a very good point about studies being about groups of patients and not individuals. Clinical trials attempt to categorize with hormone receptor status, tumor size, node status, Ki-67 and recently Oncotype testing to determine a treatment protocol. The treatments have not changed much using the same chemo drugs for the past several decades - just changing the dosing regimens to dose dense. This "standard" model used today is still not specific enough for treating the "individual" patient. However, based upon scientific evidence it has made a difference even though the progress has been SLOW. Yes - these standard treatments provide no guarantee to the patient that they will work. We certainly are left to follow our own beliefs, gut, research, scientific evidence or whatever you prefer to make these critical decisions.

I am very glad to see more discussion and information available for newer patients about supplements, diet, exercise, things to avoid for interference with their treatment and more. It was so frustrating when I was dx in early 2006 - the hospital and staff including oncologist were not interested and had no knowledge of how valuable and critical this information is to patients. It seemed like I was always butting heads with my former oncologist asking so many questions. I learned so much here from experiences of those women who had gone before me. Their feedback was invaluable for helping me get through my treatments. Frankly I relied more on them than on my oncologist or the nursing staff. Now I can only look forward and am comfortable with the decisions I made - even those when I argued with my doctors. No regrets there.

Momine

Light, I am really not sure who is "poo-pooing" here.

annika12

Our bodies are different, the cancers we have or had are different, the reasons they started growing in us are different, our futures are different and so are our approaches and believes! !! I dont like statiatics cuz if you are that 1% it doesn't matter what the other 99% did or didnt do !!! If statistics were right I shoukdnt have had cancer at all......... One thing we all do have in common is making all those hard choices for oourselfs and putting our minds at peace with them , maybe that's why it seams so hard to support others decisions, we question our own or feel we have to defend them!! Now a question.... how much vit D is everyone taking daily?? Im having a hard time getting mine up !!!!

labelle

My vitamin D was in the toilet a couple of years ago-something like 12. My gyno prescribed 50,000 IU once a week for 12 weeks. Levels were than retested and came back at around 55. I continue to take a maintenance dose of 5,000 IU daily, and levels recently tested at 72-a level both my doctor and I are comfortable with. You may need a prescription for a large dose to get your levels up and then switch to a maintenance dose. Vitamin D levels do need to be monitored /there is such a thing as too much/ levels above 105 are generally considered toxic but as a rule you'd have to take a lot of vitamin D to get that high. Still, the dosage that works for me or others, may not be right for you.

Lily55

I am curious, sceptical, grateful, interested and trusting but my over riding concern is there are a lot of snake oil salespeople out there with no scruples........ao anyone considering complementary, or alternative or however you categorise it, needs to research first and if able to, trust in your own intuition for you (but that is not so easy to do as fear can disrupt a clear communication process of intuition, if you see what i mean).

I do diet, exercise, supplements, changed everything I put on my skin, and generally eat and drink whatever is in its most natural state.......nothing processed, except chocolate for medicinal purposes........!!

placid44

I had conventional treatment and am now applying what I learned from the nutritionist at the cancer center.. Lots of vegetables, including cruciferous. I als cut out alcohol and switched to a beta blocker that a couple of early studies showed may help prevent recurrence of triple negative. More studies are needed, but since I was already on a beta blocker to start with... I have not yet lost the weight (25 lb.) which my onc strongly recommends...feeling a bit guilty about that. So I'm using both types of treatment. Thanks so much for starting this

MombieZombie

I've been lurking around this thread and decided to add a late addition. It won't seem like anything new, but I hope it adds something useful to someone. Hoping I can learn more too.

I go to a cancer center that offers conventional and complimentary treatment all in one place. There are Oncs, acupuncturists, massage therapists, naturopaths all working together. You can see any combination of professionals you like. I chose conventional treatment in the beginning, and I've had very good results, but I found that I wanted more. So I've added massage for stress management, I see the Naturopath for nutrition and preventative help, and I'm considering seeing the acupuncturist for things like pain management and insomnia. Pain relievers don't help me, and melatonin works but gives me headaches that make it not worth taking. I take probiotics. I take a form of CoQ10 to protect my heart from the Herceptin I'm on. It's called ubiquinol.

While my conventional treatment is going well, and I'm super grateful, I felt so yucky all the time. I'm so glad I started choosing complimentary treatments now, because I feel sooooo much better as I have followed their instructions. I wish I had chosen it sooner. The added benefit is that I also feel like I'm being more proactive in doing all I can to be cured and live long and healthy.