Radical Remission Book Club by Kelly A. Turner, Ph.D.

Andi67

I've just finished Chapter Two and I am already in a tailspin. The book is telling me everything I instinctively know.... I wish I'd read it years ago ( I have read others..... just none so impactful for me personally) I went to the store last night and bought all organic (my kids are in a tailspin as well... they want to know where the Cheetos are) and I am seriously considering quitting my job. It's too much/too stressful/too much time in the car...I need to make that change!

LovesMaltes - on laughter; I do find ways to laugh, believe it or not. I have a best, best, best friend (she's at work, so one issue with quitting) and we literally almost pee our pants laughing every day. If you have even one friend like that, it can make all the difference.  What about funny movies? When I was going through chemo, my dear husband looked up every funny movie he could in an attempt to make me laugh.... and not a lot worked. That was back when I wasn't walking to the mailbox, either. However, in the last few years I have managed to laugh out loud at movies like The Other Woman, This is 40 (even though I am pushing 50, I think the humor is classic)... anything with Leslie Mann! I think she is a riot, but I guess it's an individual thing. 

XO

Andrea

Longtermsurvivor

Some interesting ideas and useful options on stress management from Jan Adrian, MSW of Healing Journeys:

Dear Friends,

I heard Dwight McKee, MD, say at a conference on new cutting edge treatments for cancer that he believed the first 30 days after a cancer diagnosis would best be spent learning stress management techniques. There is a strong correlation between stress and cancer, and a diagnosis of cancer is in itself a very stressful experience. Any treatment you decide on will be more effective if you are feeling less anxiety and tension.

continued at:

https://www.healingjourneys.org/wp-content/uploads...

Healing Journeys puts on wonderful conferences and events. I've attended several over the years and always benefit.

Dr. Turner's work featured in the Spring 2015 newsletter. Includes both workshop ad and article on intuition by Dr. Turner.

http://www.healingjourneys.org/wp-content/uploads/...

Healing regards, STephanie

jensgotthis

I had an interesting appointment today with a doctor who works with cancer patients to strengthen their immune systems to reboot the innate immune system which is our body's natural cancer fighter. He prescribed a rigorous supplement, diet and exercise program. I'm excited to see how this goes and will be using the radical remission and block center booksto keep me on track as well.

eelder

Jensgothis... would you mind sharing what the program is? Like what supplements... what kind of/how much exercise... etc? I'm fascinated to hear. You're being treated at UCLA right? I went to graduate school there.... Lived in LA for years. Fascinated to hear what you'll be doing.

Anonymous

Jen- I find this so interesting! Tell us more. How did you find this doctor?

jensgotthis

I found him through a new friend who has been living with MBC for 14 years. I asked her for her advice on strengthening immune system and she told me about him. He gave me so much information - and it really is interesting - so when I get ona real computer later today I will put together a summary to share.

Longtermsurvivor

I'm delighted and a bit envious to hear of new-fangled integrative, naturopathic and holistic MD's that you get to see. The divide between conventional and alternative medicine was deep and wide when I started this breast cancer journey 25+ years ago. I've been the bridge between practitioners and between practices - learning to trust my intuition about which are suitable when and for what. It's a challenge to be both patient and practitioner and to practice medicine on myself without a license.

Like most good health advocates, I like to keep my eye on the "opposing party's" views.

Science-Based Medicine is an online source/resource for contributors to criticize their opposition (including integrative, alternative and holistic medicine - btw, I find their articles on cancer screening and lead-time bias fascinating) in a often pseudo-scientific, materialistic, moralistic and reductive manner.

I checked them for articles about Dr. Turner's work and didn't find anything. Still, it's likely that they'll come after her too. They love to hate Dr. Andrew Weil - found over 100 entries on his name in the archives.

Here's a recent article with comments on the harms of integrative medicine to cancer patients. "Integrative medicine preys on a patient's desire for hope and control."

The Harm of Integrative Medicine: A Patient's Perspective

Jesse Luke

June 12, 2016

https://www.sciencebasedmedicine.org/the-harm-of-i...

Seeing through others' eyes is a good way to understand one's own perspective and approach!

warmest healing wishes, Stephanie

Anonymous

Steph- you're such an inspiration to me. You write and I think.... you really probe me to think more... and you write so beautifully to us. Thank you.


This may be off topic a tad, but I had a wonderful 18 year remission and find that not enough research is being done for metastatic breast cancer. A new study just found that bone building drugs like zometa and xgeva actually protect you from breast cancer, which brings me to ..."Why didn't my MO have me on a bone building injection many years ago"? I have had osteopenia for years and degenerate spine issues where I have had surgery. They dropped the ball there.

We live in a failed system... I should had known better to go to a dedicated Breast Cancer Center rather than a local oncologist for 18 years who insisted that the lytic lesion in my pelvis was not cancer. After 25 years she has never seen a recurrence of breast cancer with an 18 year remission that did not come back in the breast first. Well I was her first case and she let me go with cancer from July-to the end of October. All the research I did explanation for a lytic lesion was only one thing... cancer... I took it upon myself to hobble to Dana Faber who really gambled with my bone biopsy result and chose a treatment on comments from a pathologist report and not the actual bone biopsy result. Thanks to them I have been able to do a pretty easy first line treatment for 8 months and save what I was going to have ( for triple neg) for later. 8 months is a long time when you are talking MBC.

eelder

I'm still so new to this... where are the dedicated Breast Cancer Centers?

Anonymous

elder- A teaching hospital that has a dedicated breast cancer wing with oncologists that only treat breast cancer and do research for breast cancer. i.e. trials etc. Her are some for example, MDA, SMK, JHU, DFI, UCLA, etc. etc.

eelder

I am assuming UCSF and Stanford would apply to this....

Anonymous

Elder- yes

dlb823

eelder ~ Here's a list... http://www.cancer.gov/research/nci-role/cancer-cen... UCSF & Stanford are both top notch.

eelder

Thank you dlb823!!! I really appreciate it.

eelder

jensgothis... would love to hear about immune system strengthening... any useful tips you can share? TIA!

Milaandra

LovesMaltese, I'd be interested in seeing that study, but I can't seem to find it. Can you help me out?

Now that I have jaw necrosis after something like 12 denosumab injections, I wish I had refused it and stuck to supplements instead.

Anonymous

Mila- Here you go!

http://www.news-medical.net/news/20160601/Denosumab-drug-that-inhibits-RANKL-gene-can-prevent-genetic-breast-cancer.aspx

HLB

There is a heart drug that is also a RANKL inhibitor. I think it's digitalis. I have it written down somewhere but too many scraps of paper right now.

Longtermsurvivor

Hi Carol & Mila Andra,

Here's a very good analysis of the news story release on denosumab and hereditary breast cancer.

It's never OK to use 'holy grail of breast cancer prevention' when talking about pre-clinical animal study

'Holy grail' of breast cancer prevention in high-risk women may be in sight

Health News Review Summary

The news release focuses on the potential of a drug called denosumab to prevent breast cancer from developing in women who have a BRCA1 gene mutation that makes them more likely than the general population to develop breast cancer. The relevant research was published in Nature Medicine. However, the release has some significant flaws. For example, it refers to a "holy grail" of breast cancer prevention for high-risk women, only noting much lower in the release that the work has yet to be proven in clinical studies. Further, even if denosumab does prove to be effective in reducing breast cancer risk for women with the BRCA1 mutation, that would not mean that all "high-risk women" would benefit; there are other genetic mutations — such as BRCA2 and other less common mutations — that can increase breast cancer risk. The release also neglects to address well-known health risks associated with denosumab use.

Why This Matters

Breast cancer affects many women and, by extension, their loved ones. Men are also affected. According to the National Cancer Institute, approximately 12.3 percent of women will be diagnosed with breast cancer during their lifetime, and approximately 1 in 1000 men will be diagnosed with the disease. For women with the BRCA1 gene mutation, that number jumps to between 55 and 65 percent. Men who inherit the BRCA1 mutation also have an increased risk of developing breast cancer. Women with the BRCA1 mutation often take preemptive steps to decrease their cancer risk, including — in some cases — preemptive mastectomies. This is a complex, highly personal decision and has been the subject of significant public debate in recent years. Breast cancer is a high profile disease, and concerns related to BRCA1 have had a particularly high profile. That means that research into breast cancer prevention, and BRCA1 in particular, is likely to garner public attention. It also means that research institutions have an obligation to promote such research fairly, accurately and responsibly. This release could have done much more to highlight the preliminary nature of the relevant findings.

Continued at:

http://www.healthnewsreview.org/news-release-revie...

Longtermsurvivor

I've been thinking more about the book Radical Remission and how I appreciate its message to mainstream folks who want to do everything possible to achieve remission, even in serious and advanced cancer.

But, I see this from two perspectives - 26 years ago, I was a fitness buff working in a natural foods market. I'd meditated and done yoga for years, listened to my intuition, expressed my creativity and followed my bliss. Not only were my habits and diet pure, but my mother was a dietician and I grew up with a healthier diet than most of my friends. Then I was diagnosed at age 34 with bilateral breast cancer. i have a rare genetic condition that predisposes me to cancer in a wide range of organs, so I truly believe that lifestyle factors weren't at play in the cancer's onset.

I continued and amplified my healthy lifestyle, but my cancer recurred within 6 months of bilateral mastectomies and has never gone away...so, in a real sense, I've achieved remission, because I've outlived my prognosis by decades.

I ask, "a radical change in diet would have been exactly what?"

Other lifestyle changes did happen, organically and through intention.

I wrote about some of my MBC journey here:

https://community.breastcancer.org/forum/8/topics/...

But now that I'm on hospice and facing death, I notice now that I've ingrained practices of holistic care - integrated mind-body-spirit medicine. This part of the journey requires constant adaptation and creativity, much of it automatic. I enlist CAM methods continuously for an increasing variety of symptoms.

I'm not drawn to eating junk food (okay, I still enjoy chips and occasional white bread), but I don't reach for alcohol, caffeine drinks, sugary or low-carb foods or other "forbidden pleasures. That's just not my body's idea of a good time.

As I said earlier, the best diet is the one you can do. I think too - it's the one you can stick to. It makes no sense to buy a diet or supplements and then not use them or give them a fair trial. If they don't fit you or your lifestyle, they do absolutely no good sitting on a shelf. Better to start with small steps - perhaps eliminating some toxic stress, food or household products. Or, add in regular exercise, not an expensive gym membership you don't use. (there's a reason gyms have NY specials - they know many will resolve to do better, but very few will stay the course.)

I think this book's strength is in illuminating that there are survivors of severe cancer diagnoses. And it's very helpful to have a checklist of things to consider. But, it would be a mistake to think we all must follow others' paths to achieve our own remission and good health.

It's possible to heal into death, to do well at the end of life by applying these same approaches and more to one's journey.

Thanks for the reminder, Dr. Turner!

Thanks for listening, friends, Stephanie

Anonymous

Steph- I am sure all the things you did in your earlier life certainly ended up helping the longevity of your disease.

I was not a healthy eater (compared to what I know and understand now) Too much pasta period, proteins full of antibiotics etc, diet soda (have not had that in 3 years) or any soda except club. Organic? What was that? My weight always fluctuated (anywhere from a size 8 recently to a 16-18 back in the late 90's- but the last 10 years it's fluctuated some but I usually get the 10+ pounds off -- Exercicse? Nope not much... did some kickboxing back in 2002- but only walking now if I force myself. I have never tried yoga ever but I have my first class soon. Had two Riki sessions- And there is a class on meditation that is in my future . Now that will take the cake.. But I want to learn to do it.

I feel wonderful since I was diagnosed stage4- ( I had an 18 year remission who thought about breast cancer anymore?) I love eating healthy and enjoy food shopping as it can be a challenge. I am fortunate that I am able to be cared for at Dana Farber by a very young MO that I could just hug over and over again.

You write so beautiful Stephanie, I can tell it is a wonderful therapy for you and the therapy for me is reading as much as I can where ever you post.

Love, Carol

abigail48

yoga is wonderful, I bet you;ll enjoyit a lot. like all of this stuff difficult to get into it, but so worthwhile. probably won;t be able to do all the asanas: no blame

txmom

My husband bought me a smart TV for the bedroom and I can access youtube videos.  Sometimes, I look up yoga videos and do them.  It's really nice.  Just a thought.

solfeo

I don't think there is a perfect breast cancer diet but there are a lot of healthy and unhealthy choices one can make when you have had breast cancer. Gets under my skin a little when someone says (often in response to someone else sharing their healthy dietary changes), "My doctor said I could eat anything I want." Really? That doesn't make sense even for someone who has never had cancer.

__asher__

I just purchased a hard copy after seeing a recommendation here and from a friend who is also going through BC. I'm really excited to read it and discuss with you all

Longtermsurvivor

I'll make two posts on RR this morning - this first is about the common "looking to authorities and wanting to get it right" dilemma.

The second post will be a pondering about causation and correlation.

As women (most of us are), we're conditioned to try to control our bodies' most basic appetites - our needs for love and touch, rest, intuitive action, physical appearance, physical and emotional hunger and what we do and say. We use any means available to literally straight-jacket ourselves and one another in a very precarious attempt to meet unachievable standards. Much of the self-help industry is about personal control and change based on external authorities' definitions of getting it right. Rather than learning to enjoy our lives and our bodies as-is, we're constantly trying to change them "for the better".

One of our culture's outstanding features is confusion and mixed messages about diet, food, eating and health. This manifests in many women, men and children as eating disorders. It manifests on a societal level as obsessions with appearance, obesity and overweight, looks and fitness.

Anyone who's been diagnosed with cancer or another serious illness knows that control is an illusion, but rather than loosening our grasp, we hold on harder, struggling for order in the whirlwind of cancer chaos.

I'm a tough judge of health advice books and resources that don't acknowledge these basic facts of life, but add more fuel to the raging fires.

Here are two resources that directly address the topics. If the quotes grab you, please follow the links and read more.

xxx

Quotes from Making Peace with your Body, Once & For All

Katie Vessel

Jun 26, 2016

http://www.elephantjournal.com/2016/06/making-peace-with-your-body-once-for-all/

I know that I am not alone when I say that I have spent decades struggling with my body.

I was fighting a battle I could never win.

Our bodies are our vessel, pure and simple, and we have the opportunity to form a give-and-take relationship between our minds and our physical selves that can be truly amazing.

It is a relationship—an intimate relationship.

This is where we reclaim our power—by learning to discern for ourselves.

Anything works, as long as it feels right and our intentions are toward that of balance.

From here, we just continue to listen and we continue to learn.

We can have grace for ourselves and a healthy love, appreciation and gratitude for both our minds and our bodies.

xxx

And quotes about Orthorexia Nervosa from http://www.orthorexia.com

Proposed Diagnostic Criteria for Orthorexia Nervosa includes, but isn't limited to these:

Obsessive focus on "healthy" eating, as defined by a dietary theory or set of beliefs whose specific details may vary; marked by exaggerated emotional distress in relationship to food choices perceived as unhealthy; weight loss may ensue, but this is conceptualized as an aspect of ideal health rather than as the primary goal.

…Positive body image, self-worth, identity and/or satisfaction excessively dependent on compliance with self-defined "healthy" eating behavior.

xxx

In my suspicious moments, I wonder if RR is a better researched, better worded, more flexible self-help book that we too easily make into an authority for getting cancer right. The stakes of getting it wrong are so incredibly high that we'll do anything possible to fight and win what shouldn't be a battle - life!

Stephanie

Longtermsurvivor

This book group has led me to reconsider RR and the other self-help books I've read on cancer, healing, death and dying.

I can't help but wonder about the statistical maxim of correlation and causation.*

Of course, Dr. Turner tells us right away that though her research reviewed more than 1000 cases of RR using primarily anecdotal reports (aka stories). She didn't set-up a randomized, double-blind, placebo controlled study to determine the effects of different interventions and their synergistic effects. Given that we all live complex lives with multiple choices affecting outcomes, that type of study would be near impossible to do.

Most cancer clinical trial studies use very blunt instruments (aka treatments and statistics/what can be measured) to determine what might work, what does work and how the new treatments compare to prior treatments. The focus is on disease control/response with only the negative and very negative unwanted measurable side effects noted in the study results. Additionally, the use of surrogate end-points like disease response or progression-free survival (stability) eclipses or ignores important data like overall survival or treatment tolerability.

So, on one hand, we have the mainstream medical clinical trial model that measures only the crudest indicators of quality of life...because they can be statistically quantified…and almost completely overlooks quality of life.

On the other hand, there's a study like Dr. Turner's that focuses on quality of life measures that improved survival in those she chose to profile.

I personally part ways with her, when she moves from asking questions to providing answers.

So, a radical change in diet correlated with radical remission. That seems like a common-sense no-brainer. Of course!

But!

What conditions were necessary for that radical change to occur?

* Basic knowledge of nutrition, healthy diets and good choices;

* A willingness to learn, refine knowledge and apply it;

* Access to high quality food - too many live in urban or rural food deserts, lack the money and resources to buy and grow fresh, nutritious food;

* An ability to prepare nourishing food;

* The physical health and well being to take on a new project while ill;

* The time to learn and prepare the radically different diet;

* The cooperation of others who share food/meals (children, spouses, aged parents, other family members, roommates, etc);

* Heck, our caregivers' support through shopping, preparing and sharing meals goes a long way;

* Developing a taste for and commitment to this new way of eating;

* Letting go of unhealthy food and food habits - highly processed and fast foods are staples in most people's lives.

Maybe one of the primary causes of RR isn't what we choose, but that we are able to overcome the current momentum of our lives, habits, culture and conditioning.

This might be a case of correlation not implying causation.

Maybe well-resourced, self-motivated, well-guided individuals are better able to care for themselves than those with less resources of money, time, access and knowledge.

Maybe the whole book is about what people can do when all the forces are aligned to support and guide us toward greater health and well-being.

Maybe that is what cures cancer - not the individual factors or their synergy, but the underlying conditions that allow us to make these choices.

Something to ponder!

Best wishes all, Stephanie

* "Correlation does not imply causation" is a phrase used in statistics to emphasize that a correlation between two variables does not imply that one causes the other.

https://en.wikipedia.org/wiki/Correlation_does_not_imply_causation

Longtermsurvivor

I remembered a relevant medical journal article that explores self-regulation and my cancer treatment of 20 years, Iscador.

Here's a bit on self-regulation:

Psychosomatic Self-regulation

Quality of life was assessed in these studies as the degree of psychosomatic 'self-regulation'. This term applies to intrinsic activities of a human being through which he or she achieves well-being, inner equilibrium, appropriate stimulation, a feeling of competence and a sense of being able to control stressful situations. Self-regulation is assessed by a self-administered questionnaire and measured on a scale from 1 (low) to 6 (high). Self- regulation influences the incidence and course of cancer. Studies covering a 27-year period and involving 35814 participants showed a higher incidence of cancer in those with poor self-regulation, revealing detrimental synergies between low self-regulation and other cancer risk factors. In patients with manifest cancer, higher self-regulation correlated with longer survival.*

Maybe self-regulation, the ability to follow chosen regimens - whether self-chosen or conventional - is an important factor in both survival and radical remission...stick-to-itivenness.

~ Stephanie

* Individual Patient Data Meta-Analysis of Survival and Psychosomatic Self-Regulation from Published Prospective Controlled Cohort Studies for Long-Term Therapy of Breast Cancer Patients with a Mistletoe Preparation (Iscador)

R. Ziegler and Ronald Grossarth-Maticek

Evidence-Based Complementary and Alternative Medicine

Volume 7 (2010), Issue 2, Pages 157-166

Free full text available

http://www.hindawi.com/journals/ecam/2010/989161/a...

ClarkBlue

Stephanie, I read a book last year that really changed my perspective of dieting and getting healthy. It reminded me to take it one step at a time. We all inherantly know that we need to eat better, but with daily stress and living can make a complete diet overhaul a daunting task... So in the book she suggests to start with one or two things that you know you need to change and do them. Mine was to drink water instead of anything else beyond my morning coffee. Next was to cut back on sugar and processed carbs. Water was easy carbs was not, but I slowly made healthier choices like buying whole grain spaghetti noodles on spaghetti night... That type of stuff. I found some delicious veggie muffins to squelch my sweet tooth cravings and found that it became easier over time and once I had those changes ingrained I moved on to other things like taking vitamins and using less vegetable oils and eating more organic than lastly cutting out meat and dairy. This process took about a year and a half but most of those habits have stuck! I too worry about obsessiveness over dieting and am purposely not doing that. I'll eat chicken and beef if offered and for Father's Day weekend I had 3 pieces of cake!! Lol

It's called Eat, Nourish, Glow by Amelia Freer if you are interested in another book to add to your recommendations or one that you wouldn't recommend lol. Either way would love to hear your thoughts if you end up picking it up.

-Keely

labelle

I read RR quite some time ago, but for me the take-away message was more one of wonder and hope, rather than any prescriptive advice since all the people featured utilized fairly different ways to heal.

Servan-Schreiber's Anti Cancer A New Way of Life with its detailed diet and exercise guidelines (pretty good ones I thought) is definitely a self-help, prescriptive book, whereas RR was more awe inspiring IMO.

Self-regulation is an interesting subject, but when self-regulation leads to extra stress and excessive rigidity I'm not sure how beneficial it is. This from someone who did the Paleo Whole30 for 6 months, rather than 30 days. LOL. I might not eat quite as healthily now, but I'm less uptight about what goes in my mouth and probably more pleasant to be around!

I think we all know some things are better for us in terms of diet and lifestyle than other things, but we also have to do what we are comfortable with to some degree. Never cheating on the diet (not even for special events or holidays) or never taking a day off from your exercise program (not even when on vacation) is bound to cause stress for most of us and allowing ourselves to become too preoccupied with these things does not enhance our quality of life. That said, at this point I cannot imagine ever going back to a SAD (Standard American Diet) or not exercising regularly but lately I've been more focused on balance, than following my own diet/exercise routines to a "T."