Doctors opinion of Standard of Care - 1289990

Hi roamer321,

Welcome to GRACE. I am sorry to hear of your wife's diagnosis. I understand completely your desire to find the best treatments for your wife; that search led me to become a GRACE moderator.

The guidelines are simply that - listings of treatment regimens that have the best scientific evidence of efficacy for a particular cancer, staging and histology. They are not rules by which oncologists are bound, and there is room for the doctor to use his best judgment. There are certain limitations: the drugs use must be approved for use, at least in some context. And because it is usually such an important issue for most patients, whether insurance will cover the chosen therapy is important. In practice, most patients want the "best" therapy, and an oncologist responds with the treatment that has the best evidence of probable success.

It is true that there are therapies "in the pipeline" (although each has its own set of side effects), but they have that status because there remains insufficient evidence of their efficacy and/or safety. Many oncologists will recommend a clinical trial when appropriate, even when there is a more established therapy available. It is up to the patient to decide, with the guidance of the oncologist, whether to try a less-proven treatment. Unfortunately, many new therapies (which are often touted as a "cure" in the media) never live up to their promise and never get approved. If your wife's oncologist is not open to the possibility of a clinical trial, perhaps a second opinion is in order.

Good luck with your wife's continued treatment.

JimC
Forum moderator

Hi Doug,

The issues you raise (regarding pharmaceutical companies and the inability to finance clinical trials of certain types of treatment) have been discussed here numerous times over the years. You are correct when you say that the GRACE faculty and most oncologists would not recommend the treatments you describe because of the lack of clinical trial evidence of their efficacy, though they would not specifically state that such lack of proof means that they might not be effective.

JimC
Forum moderator

An example of such a discussion, which includes reference to Ketogenic diets in a cancer context, can be found here: http://cancergrace.org/cancer-101/2010/09/02/does-sugar-feed-cancer/ In that discussion, Dr. West clearly states the consistently-held view of the GRACE faculty that:

"There may well be useful conclusions to draw from Dr. Seyfried’s work, but whatever that research offers, it isn’t strong clinical data on human cancer patients that shows better outcomes in patients who follow one diet over another. If these hypotheses are correct, they will still remain hypotheses until they are actually tested in clinical trials. Until then, both sides are operating more on faith-based perspectives that we can justify with scant, poor evidence to justify our own predispositions. I don’t think that the argument can or should be made that “sugar is terrific”, but rather that at this time, overall, there isn’t significant evidence that diet has a very significant effect on clinical outcomes in patients with known cancers. Absence of proof isn’t proof of absence, but I think it’s wrong for either side to take a dogmatic view here."

The bottom line is that, given a choice between a treatment for which there is strong clinical trial evidence of efficacy, and one for which that evidence is missing or largely anecdotal, the faculty here, along with many practicing oncologists, will choose the treatment backed by clinical trial evidence. That opinion is unlikely to change unless clear evidence is presented to support the efficacy of a particular treatment.

JimC
Forum moderator

Hi roamer321. I am so sorry to hear of your wife's diagnosis. I too have been rapidly learning about cancer biology since my wife's diagnosis almost two years ago.

As a cell biologist, I also have taught a course on biomedical ethical issues, such as pharmaceutical company funding and control of most clinical trials. I share your concerns for the way profits can skew the type of approaches being investigated, but the companies are not monolithic, and there are in fact nutritional and other studies being done, and an entire center at the National Institutes of Health for studying alternative and complementary treatments.

Dietary intervention is, in fact, continuing to be explored, (see articles below). Their basic conclusion is that while ketogenic diets might slow tumor progression in mice in some conditions, and may help in quality of life while undergoing therapy, there is no strong evidence yet that it can halt cancer progression. [Note: There is also separate evidence that mice are poorer models for how cancer works in humans than some other animals like rats]
cancerres.aacrjournals.org/content/71/13/4484
www.ncbi.nlm.nih.gov/pmc/articles/PMC3954599
www.sciencedirect.com/science/article/pii/S2213231714000925
nutritionandmetabolism.biomedcentral.com/articles/10.1186/1743-7075-8-54

The upshot of these studies is that while complementary approaches have been shown to sometimes help, they haven't shown any type of consistent strong control of cancer. Anecdotally, my wife has been on a low-carb diet for a number of years (not quite ketogenic) and it did not keep her from getting cancer or impeding its progression (although we hope it hope it has helped keep her in the relatively good health she has had during treatment).

I know these treatment decisions can be excruciating, but as a scientist who is also religious, I know how science, faith, and heart can work together.

May your wife's treatment, standard or not, be effective and long lasting.
Hugs and Prayer

Roamer321,
One other point. Our oncologist has always been open to any conversation about treatment (e.g. we talked to him once about probiotics in concert with the chemotherapy) so feel free to discuss any and all concerns you have with your oncologist about any form of treatment.

Sorry to say but the ketogenic diet has been in clinical trials and still is in clinical trials. As for nutrition, they didn't go to medical school for nutrition and if you want help with that, then see a nutritionist.
Take care, Judy
https://clinicaltrials.gov/ct2/results?term=ketogenic+diet&recr=Open

I agree Judy - My wife has a nutritionist as part of the care team, and although we haven't contacted her much, she has been great. And I am anxious to see the results of the ketogenic diet trials. Some early animal studies showed an enhancement of the chemo/radiation effects on reducing tumors, but little direct effects on its own, so I will be interested to see how the diets pan out in the trials.

Thanks for the info!

Best,
scohn

Hi Roamer,

I admit that before my husband had cancer I thought the pharmas created their own treatment myths. As I've grown in my understanding and communicated with the oncologists who do the clinical research I understand that it's more than just the big pharma's desire to make money. Healthcare is the most complicated subject ever studied. The answers aren't being kept from us; no one knows the answers. It's the reason why the US is in such an unmanageable place in healthcare reform. The high cost of care is a lot more than large corporations wanting to grow as large as they can. Certainly the almost or maybe complete inability to understand the body makes for fertile ground for misuse of our dollars but it's light years more complicated than big pharma and one line campaign promises.

Few oncologists would state categorically an unproven science won't work. They don't use it because it's not proven to help and it's not proven not to make matters worse, it's not been studied enough.

Our forum is here to share the information about treatment and care options that are data driven. Unfortunately the science doesn't exist that a diet can change the course of someone's cancer. I'm sure the only way that will happen is through government supported research because there's no reason for a pharma company to do so. In the US much of medical research is now up to private enterprises. I don't think this is the forum to argue whether or not an untested treatment is appropriate.

As a side note, it is understood that diet effects ones chances of getting a host of diseases and I wish the US could do a better job of teaching our kids how to eat. How simple would it be for lunch to be a class where they are served a tasty appropriate diet. There is certainly need for change.

I don't mean to shut you down I just want you to understand our mission on this forum.
Best of luck,
Janine

Hi roemer321.

Interesting video, but it mixes a lot of cell biology phenomena together. There is no doubt that poor nutrition can increase oxidative stress on cells and weaken them, and in general increase the likelihood of a large range of metabolic disorders (and possibly increase rates of mutational stress as well). But, these are likely most beneficial as a type of preventative approach to keep cells healthy, and the immune system operating at top efficiency.

The question of these roles once cancer has been established is much less clear. In particular, take the case of the mitochondria. Many current models for cancer tumors suggest that mutations of cell control genes are the primary drivers. These mutated proteins overstimulate cell growth signals, and the continual overregulation of these pathways often require a huge amount of energy. This leads to two effects - one, the stimulation of tumors to increase nearby blood supply for food (hence the use of Avastin and other anti-blood vessel drugs) and the conversion of tumors to glycolysis (which provides cellular energy much more rapidly, but much less efficiently). How mitochondria fit in isn't exactly clear, but once a cell shifts to a mainly glycolysis/fermentation pathway, the input molecules for mitochondrial activity are greatly reduced, and the mitochondria can be compromised.

It certainly is a possibility that a ketogenic diet will likely stress the tumor cells more, but since the mitochondria often become adapted to that stressed environment, the tumor cells can still often maintain a steady supply of cellular energy, and may grow slower, but not die. That is why chemotherapies that target the actual mutated driver molecules, or even that generally target overstimulated glycolytic cells, can be effective. So the question, which hopefully these clinical trials will begin to address, is whether additional tumor stress caused by a ketogenic diet will enhance the effectiveness of chemotherapies.

Hi roamer321, sorry for replying but I was just hoping that you weren't thinking I was one of the responders who should be reprimanded, since you asked me what I thought of the video.

All the best, and I hope Dr. West or one of the other doctors will respond to your original question regarding the standard of care.

Best, scohn

Doug,

The current standards of care are based on a combination of the evidence supporting best efficacy along with the judgments of some of the leading specialists in the field. Some, like ASCO, are very conservative, recommending very little beyond what has ironclad proof, while others, such as NCCN and a subscription commentary service called UpToDate, include a combination of hard evidence and judgment that is often more liberal.

I agree that there can be a mismatch between what is best for patients and what some doc's recommend. That's actually why I started GRACE, because I saw that docs could sometimes not know the best treatment (in an increasingly complex world of cancer results), may consider the best treatment too toxic and hard to manage, and/or that they may be paid better for a less than optimal option.

However, the current standards of care are really the definition of the best evidence, and I disagree that there are curative therapies that are in the pipeline that are ignored by oncologists because they have financial self-interest in ignoring them. They hold them to the standard of actual clinical evidence showing a significant benefit in a population of patients. Whether ketogenic diet, Budwig diet, alkaline therapy, cannabinoids, dichloroacetate, or anitneoplastons, these all have zealous followers and evidence only of a vaguely plausible lab-based premise for how they could work, some anecdotal reports of people who say they've had a miraculous response, but no denominator of how many people tried these and failed. No reputable studies.

You can say that there's not enough financial incentive to study them, but I'd say that if any of these interventions worked even a fraction as well as advertised, there would be armies of cured patients. There are not. It shouldn't be that hard to prove amazing treatments.

Finally, we shouldn't forget that those promoting these treatments invariable make money by doing that. Please prove me wrong.

-Dr. West

roamer321,

I assume that your latest post is directed to me. To be honest, I do not understand why you feel that I took this thread off topic. If I did, I apologize to you.

However, this is a public forum to which any member can post, and I think a few things need to be stated to clarify the position held by the faculty and oncologists in general. It is always up to you to decide whether to read further.

You originally asked about the oncologist's view of standard of care. I tried to describe the process they follow in making treatment recommendations, and the circumstances that would lead them to recommend other treatments. I focused on clinical trials, but there are other types of therapies they may acknowledge, mostly used as a complement to standard treatments (such as nutrition, supplements, for example), which were covered in posts by other GRACE members, but that without the type of strict proof of efficacy oncologists generally would not suggest them as the primary treatment for a cancer patient. Given your initial post, that information summarizes the view of the GRACE faculty and most oncologists.

In a subsequent post, you mentioned the Ketogenic diet and on more than one occasion have described its "proven benefit". It is certainly appropriate for you to say this if you believe that there is sufficient proof of its efficacy. What you originally asked, though, dealt with a doctor's view of the standard of care and willingness to deviate from it, and what several of us have stated is that from the oncologist's point of view, some suggested therapies (such as the Ketogenic diet) do not meet their standards of proof. You can argue that their standards of proof are too stringent or are incorrect, but the answer to your question remains this: most scientifically-trained oncologists will require proof of efficacy as determined by randomized clinical trials in human subjects.

[continued]

[continued from previous post]

And in their world, anecdotal evidence is felt to be insufficient. It is your right to disagree, but this site is based on the oncologist's view of scientific proof, so it must be made clear to users of this site that the opinions you express are not those held by the oncologists who contribute their expertise here.

I see that Dr. West posted while I was writing my own post. As you can see, his opinion is identical to that which several of us have previously expressed, and what I have stated in this post.

JimC
Forum moderator

The stated mission of GRACE is:

"The Global Resource for Advancing Cancer Education (GRACE) provides expert-mediated information on current and emerging cancer management options in order to empower patients, caregivers, and health professionals to become direct partners in cancer care."

The information provided by GRACE, through podcasts and posts by the faculty and current and archived forum discussions, empowers each of these types of individuals to make well-informed decisions with regard to cancer care. The presence of that information throughout the site is what bears out Dr. West's purpose in starting GRACE.

JimC
Forum moderator