Looking for Diet and Lifestyle Advice from Long Term Survivors
I am relatively new to the site and am currently undergoing chemo for IDC. I have been searching the web trying to find diet and lifestyle information from long term survivors ten years or more. I was trying to find any tips that may have been published by Ann Jillian who is a 25 year survivor. I am Er/Pr+ Her2- . I have been given general guidelines on what to avoid but feel the long term survivors could give us some valuable information on preventing recurrence. Please feel free to share anything you have learned. I'm looking forward to sharing with everyone
Comments
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Hi Warrior, I am not very long in the survival game, but just passed the 2-yr mark from my BMX. I have waded through a lot of food info, and my own, completely personal and unscientific, conclusions are:
1. Nobody seems to know very much for sure.
2. Dairy and meat are not of the devil, but there is evidence that high-fat dairy like cheese and cream may be correlated to relapse, so I limit those things. I also limit meat (and eggs), but more because I had a hyster and am on femara, which can raise cholesterol.
3. Personally I am not convinced that going vegan or vegetarian makes any danged difference in terms of cancer, and I also suspect that it is not smart to go very low on protein. So I eat quite a lot of fish.
4. Staying thin may well be advantageous, ditto for keeping blood sugar low and stable. The easiest way for me to do this is to eat a LOT of veggies, go very easy on carbs and getting adequate protein. For the carbs I tend to stick to whole grains and beans. I avoid all processed, white carbs as well as sweets, sugar, honey etc.
5. Most of the fat in my diet is from olive oil, nuts and fish.
6. Exercise is important for physical and mental health. Whereas there is no really clear evidence for one or another dietary approach, there is a lot of evidence that exercise may very well help ward off recurrence. I aim for a minimum of 10 hours of exercise a week. This may sound like a lot, but I am not out there running marathons. I walk the dog 2X a day and in addition I either go to the gym for an hour or take a long walk at a decent clip. -
I am from same time frame. I was 2 yrs out from chemo. went to texas for scans. he found early bone mets. not a death sentence btw
i followed the life over cancer regime since last dec. its a vegan diet that allows deep water fish, ate mostly organic, lot of kale. ate very healthy diet. I tried to exercise a lot , but frankly reconstruction sx slowed me down. then there was additional septoplasty sx for bone spur. I took a lot of supplements. all recommended by Dr Block,
my advice is focus on exercise, eat healthy and get routine scans. It is my belief that mets are easier to treat if caught early. just my opinion. this opinion is not shared by most oncologists
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Hi There,
I just passed my 22 year mark, so I'm thinking I fit into your "search" category . Although my sx and tx was back in what I call the "dark ages" of bc tx, I lucked out with a very forward thinking family doc. She advised me years ago to live a balanced life, which to her meant eat healthy, stay active and don't beat yourself up and think you're going to die if you have an ice cream cone or a bowl of potato chips. Just don't have those kind of things on a regular basis. She did strongly advise me to stay away from soy products, which were the "new, best thing" back in the "all things tofu days", as my tumor was ER+. I was on the "thin side of average", and she did not want that to change. They were just starting to seriously look at things like fat consumption and activity in the "big picture" of recurrence. She also felt that there was no "magic" diet that would make any difference in my outcome, but strongly urged a healthy, balanced diet. I have always had a very active metabolism that burns through food quickly, and struggle with low iron if I'm not careful.
So....I am very active both with "intentional exercise" like working out, and with lifestyle things like yoga, hiking, skiing, long walks, etc. I eat lean protein which includes meat, (yes, even red meat), fish and low fat dairy. I eat lots of veggies, not necessarily organic, but as fresh as possible, given where I live, so sometimes that means frozen veggies. I eat carbs like pasta, and whole grain bread, but try to stay away from as much refined carbs as possible. I've never really had a sweet tooth, so the carb thing isn't too hard for me, but I do allow myself a small amount of sugar in my coffee. I have used evaporated cane sugar for that for a number of years. I eat fruit too, again as fresh as possible, which gets pretty boring or expensive in the winter. Fast food, processed, or packaged food is pretty much "rare to never".
I'm old enough to have seen just about everything we eat go through the cycle of "good for you, bad for you, back to good for you - but in different ways". If you google long enough, you'll find the same thing for any diet or lifestyle advice, in my opinion.
So....long story short....I'm now 63 and a 22 year "veteran" of BC with no recurrences. I am on absolutely no prescription meds for the normal "age related things" like high cholesterol, BP, osteo, etc. I had a long history of failed implant recon, so this past April I had a free flap recon, and a few months later was back to hiking the mountains with my usual backpack. I'm 5'6" and weight varies between 125 and 130, depending on how many hikes/skis etc. I've recently been on.
I wish you nothing but health and happiness. -
Nihahi, thanks so much for posting and best wishes for continued good health. -
Thanks Momine....I wish the same for you.....
I just came back as I forgot about the "supplements" that I do take, but none are prescription things. I take Vit D, Calcium, Iron, and also a glucosamine powder. Just wanted to share that also. -
warriorchick ~ A couple of books I found helpful were, Anti-Cancer, A New Way Of Life, by David Servan-Schreiber, MD, PhD, and Beating Cancer With Nutrition by Patrick Quillin, PhD, RD, CNS. You can look them both up for more info, but both have lots of excellent information that I found really helpful in sorting out what to do going forward. (((Hugs))) Deanna -
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YAY! I love nuts!
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I am 4 years out and I follow Anti-Cancer also. I re-read it several times a year. I am vegan, occasionally drink a beer and skip exercise class if I feel like it. I do lots of hot yoga, play lots of tennis and I bought a small infra-red sauna. I keep a happy balance.
It's so nice to see so many thrivers! -
Hi Ladies
This is great information; thank you so much and congratulations on your ongoing success!!!! Your survival has given me a great deal of hope, wow nihahi 22 years that's wonderful! Fredntan I'm sorry you have to deal with early bone mets but I'm happy to hear it's not the end all. I have heard wonderful things about Block, he appears to have a great deal of passion towards finding a cure. I appreciate the information on the books dlb823. I just finished "Waking the Warrior Goddess" and will definitely get these titles next. Momine and Nehahi, I appear to share similar lifestyles with both of you with a few exceptions. I am very active and love different types of exercise as well as being outdoors. Nehahi I have never gone hiking or skiing so I may venture that next. I was also wondering why glucosamine and iron? I heard about the others but had not heard of the benefits on those. I want to get my doctors approval for as much as possible, I'm still not sure where she stands on supplements. I also believe the studies regarding diet are minimal so our doctors have difficulty guiding us our best resources come from successful people like all of you, hopefully I will be fortunate to follow the same path. I am now eating mostly chicken with some shellfish. I am restricting meat greatly. I have a hard time restricting cheese and carbs, how do you ladies do it? I live for good cheese, the bread basket and certain candies and cutting back has been really tough. At home I use only whole grains but dining out is challenging. That is another area I need help with, I dine out often and I'm not sure how to navigate menus safely.
I really have some difficulties dealing with diet simply because I am allergic to nuts, flax seeds and regular fish (not shellfish) so my diet will be very limited, it's sad because it sounds like most of these are great cancer fighters.
I am trying to implement my lifestyle changes now since I only have six weeks of taxol left then I'm on to radiation. My doctor said stay away from soy and it's everywhere but I am desperately trying to avoid it and adjust to my diagnosis. The doctor says Er+ is a good thing but as you said nihahi soy is the "new best thing" and it appears to be in everything except veggies. I noticed many of you mentioned exercise, I am also am very active. I walk my dogs two miles a day and try to walk 7-10 miles a day on the weekends. I am getting into yoga and strength training again but I need to be cautious because of some swelling in my arm from additional lymph nodes removed so I am starting strength training slowly.
Please forgive me if my post rambles on. I had chemo today and unfortunately my brain is usually challenged a bit afterwards. I look forward to sharing thoughts and ideas with all of you and hope together we will find the road to long, healthy, happy, futures -
Hi warrior....The current theory on soy/ER+, is to avoid the modified soy products, but the natural soy, as in things like edamame is ok....I still just try to avoid it as much as possible, on my own decision.
The supplements I take are based on "non-cancer" reasons. I was found to be anemic, post recon surgery, so was put on iron supplements. They significantly helped my fatigue, during recovery, but hopefully will not be a long term thing. The glucosamine is joint related. I have a therapy background, and a few creaky joints from age and previous injuries. One of the top joint replacement orthopedic surgeons in my area highly recommends the type of glucosamine I take, and I have found I have less joint "complaints" after intense activity.
My goal at this point in life to be as "overall healthy" as I can, so I can enjoy life as much as possible. I no longer find myself making most of my nutritional/lifestyle choices based on cancer, but on general health and wellness. That is one of the "gifts" of being this far out from dx.
I think discussing your diet/choices with your doc is a good thing. Maybe also getting some guidance from a reputable nutritionist, especially given your food sensitivities. I will never claim that making the food/exercises choices I made years ago are the reason I have done so well, but I firmly believe it could not have hurt at all, and has allowed me to fully enjoy being NED for so long.
I hope everyone gets the opportunity to truly enjoy the life we each have fought to "reclaim", for many, many, many years. -
Hi Ladies
This is great information; thank you so much and congratulations on your ongoing success!!!! Your survival has given me a great deal of hope, wow nihahi 22 years that's wonderful! Fredntan I'm sorry you have to deal with early bone mets but I'm happy to hear it's not the end all. I have heard wonderful things about Block, he appears to have a great deal of passion towards finding a cure. I appreciate the information on the books dlb823. I just finished "Waking the Warrior Goddess" and will definitely get these titles next. Momine and Nehahi, I appear to share similar lifestyles with both of you with a few exceptions. I am very active and love different types of exercise as well as being outdoors. Nehahi I have never gone hiking or skiing so I may venture that next. I was also wondering why glucosamine and iron? I heard about the others but had not heard of the benefits on those. I want to get my doctors approval for as much as possible, I'm still not sure where she stands on supplements. I also believe the studies regarding diet are minimal so our doctors have difficulty guiding us our best resources come from successful people like all of you, hopefully I will be fortunate to follow the same path. I am now eating mostly chicken with some shellfish. I am restricting meat greatly. I have a hard time restricting cheese and carbs, how do you ladies do it? I live for good cheese, the bread basket and certain candies and cutting back has been really tough. At home I use only whole grains but dining out is challenging. That is another area I need help with, I dine out often and I'm not sure how to navigate menus safely.
I really have some difficulties dealing with diet simply because I am allergic to nuts, flax seeds and regular fish (not shellfish) so my diet will be very limited, it's sad because it sounds like most of these are great cancer fighters.
I am trying to implement my lifestyle changes now since I only have six weeks of taxol left then I'm on to radiation. My doctor said stay away from soy and it's everywhere but I am desperately trying to avoid it and adjust to my diagnosis. The doctor says Er+ is a good thing but as you said nihahi soy is the "new best thing" and it appears to be in everything except veggies. I noticed many of you mentioned exercise, I am also am very active. I walk my dogs two miles a day and try to walk 7-10 miles a day on the weekends. I am getting into yoga and strength training again but I need to be cautious because of some swelling in my arm from additional lymph nodes removed so I am starting strength training slowly.
Please forgive me if my post rambles on. I had chemo today and unfortunately my brain is usually challenged a bit afterwards. I look forward to sharing thoughts and ideas with all of you and hope together we will find the road to long, healthy, happy, futures -
Hi Nihahi,
I totally agree. We definitely have fought the fight to "reclaim" a life we can enjoy. I think the choices you made early on really made a difference in you being NED for so long, I plan on doing the same because as you said it certainly doesn't hurt.
I am struggling with the soy information for example, I love Asian food overall and wonder if any of it is acceptable. I went to the nutritionist at MD Anderson and she recommended some terrible items that actually had soy so I will probably need to look outside their facility but that was really frightening.
I am focusing on the soy restriction the same as I do my allergies, it's something I need to really try to eliminate from my diet. I am also looking at an overall healthy diet as my plan which is why I reached out on the discussion board. I honestly don't believe we can survive NED long term without a healthy diet and I also feel we need to indulge occasionally even if it requires me to take one bite and throw away the rest of something then I will do that.
I had forgotten about glucosamine. I took it for 2 years when trying to heal a knee injury and it really worked, I may need to look at taking it again. I am also anemic but it's thallasimia which ironically stores iron and doesn't allow my body to dispose of it so I actually need to watch my iron intake.
I really appreciated all of the information you provided. If you think of anything else that you feel has helped you along the way please keep us posted, we can all learn from you.
I wish you continued good health! -
Warrior, "terrible" in what way? -
I"m not a long term survivor but everything in research points to keeping your weight down for the long term. BMI between 19.5 and 25 is ideal, according to my oncologist.
Claire -
Momine , she suggested I use products like Ensure which has soy and is high in calories, that's just one example. I was really shocked because she had my diagnosis and I am ER/PR + 92%. I was also surprised that they recommended products with artificial sweeteners. I guess I was looking for something personalized. I'm allergic to all nuts, any fish except shellfish, flax seeds and sesame seeds, so I expected her to be able to give me replacement sources of the nutrients that are necessary to keep cancer away. For example Omega 3 is essential but I can't eat fish so I was hoping she would provide alternative sources for the essential nutrients. I guess I was hoping to walk away with meal planning guidelines, I really wasn't sure what to expect but that was a lot less than I anticipated. -
Warriorchick, what I and many healthy-minded survivors have figured out is that the nutritionists and integrative specialists -- even those at the most leading-edge institutions -- may not be as forward-thinking as some natural health docs, so may not have all the answers we're after. I was tx'd @ UCLA and got some excellent info' post-tx from their integrative specialist. It was very reassuring at the time, but I eventually found a naturopathic doctor with a specialty in oncology who was exactly what I needed. Here's the organization she suggests others can use to find an ND with similar interests: http://www.oncanp.org/
And here's an interesting article from another integrative oncology group re. a recent study on supplements and breast cancer: http://www.integrativeoncology-essentials.com/2013/11/cocktail-of-6-plant-extracts-kills-cancer-cells/
Also, from my own experience, I think fine tuning our diets is a process. My diet was clean and extremely healthy prior to bc -- no fast food, no junk food or sweets, etc. But I am much more committed to buying organic and non-GMO now, as well as having eliminated (over time) 95% of dairy. I do eat some organic soy, but avoid soy protein isolate (the highly concentrated form of soy), as advised by UCLA. Deanna -
Hi Claire, Thanks for the input. My BMI is 26 so I have some work to do because I would rather be at the 19.5 mark since they say the thinner the better. I am now back on track with working out daily and hope to reach my goal. Considering the items I have eliminated from my diet I should breeze through the holidays -
Just to note, the British doctor who developed the BMI, was very specific it was for GROUPS only, and not ever to be used as an "individual" measurement.
David Servan-Schreiber's Anti Cancer: A New Way of Life is an excellent book. -
Warrior, thanks! Yes, I have gotten some pretty funny nutritional advice too from various doctors who ought to know better. Was she recommending the ensure for use during chemo though? -
Meant to say, Dana Farber Cancer Institute in Boston MA has a good website, with a special section on Nutrition. -
gosh this is an interesting, non-judgemental thread! Wonderful!!!
One of the long term benefits for me, from yoga, was really learning how to listen to my body. Every health/fitness "tool/philosophy" is in reality based on a range of measurement, as sunflower noted. Instead of aiming for a numerical target of grams of intake or bmi calculation, I believe it is more important to really learn what healthy for us (as an individual) really "feels like". This is a very, very different awareness from what "normal" feels like. At my bmi....I feel well, can do the level of activity I enjoy, and seem to avoid many of the colds, etc. that others get. If I lose weight, I am less healthy (aka....I get every cold virus circulating in the northern hemisphere) and have less energy, even if I'm still within a "healthy bmi index". The same with gaining weight, I feel more lethargic, my knee is more uncomfortable, I just don't "feel" healthy, even if technically, I'm still fine, bmi-wise. Sometimes, it is impossible to recognize those subtle differences, until we have maintained changes for a period of time. Not sure if I'm explaining myself well enough....just thought I'd add my thoughts to the conversation. -
nihahi, knee uncomfortable? I managed to get thru 5 years of Arimidex, and just about NO knee pain now ( fat, old, osteoarthritis, lazy) from ACUPUNCTURE. My oncologists who were fabulous, sympathetic to the joint pain I was experiencing, suggested Acupuncture - lived too far from the hospital to see the acupuncturist there, so I started to see someone who lives near me.
I swear by it, and massage - I call the two women "the bookends of my well-being" - can't wrap my brain around why acupuncture makes such a difference for me, but know it does help reduce inflammation, and my arthritic knees LOVE it. The effect is cumulative, and I go every 3 weeks. Just in case you haven't thought of it, or haven't yet tried it. -
Hi Sunflower....my knee pain is a result of a bit of osteoarthritis, and some spectacular falls in my younger days while skiing and skating. Apparently, even in my younger days, I never "bounced" well.
I have found that if I REALLY pay attention to my gait, I can also minimize it a fair bit. It is purely "mechanical" and wear and tear.... I don't believe there is a component of "consequences of drug treatment" of my bc. I hike, ski, etc. with a couple of fellow OT's and Physios....It's quite funny actually to listen to us as we go along....we're always correcting each others posture, gait, etc. Seems to be the norm more often these days, as we all age. "pull your shoulders back.....lift your head up.....why are you leaning to one side.....turn your foot in...etc.." We sound like a physical intervention group session!!!
I have found acupuncture to be very helpful in the past for RSI shoulder issues, as well as massage. I carry stress in my back and shoulders, and without my monthly massage, my shoulders would likely be permanently attached to my ear lobes! Thanks for the suggestion, though!!! -
nihahi - about 52 years ago, while sledding, I fell, twisted my right knee, and the sled with several people on it ran over moiadd to that now, 5 yrs Arimidex, and osteoarthritis, or what my grandmother's generation called "housemaid's knee" - and the acupuncture, is now the answer for me. I look like I've got a porcupine on each knee during treatment - but the result - TRY IT! Good luck.
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Deanna, just wanted to say thanks for the link for finding a naturopathic oncologist. That's just what I've been looking for! I am eating pretty much vegan (with the addition of wild salmon) and take lots of supplements (curcumin, vit. D, calc. d-glucarate, maitake mushrooms, baby aspirin, flaxseed, DIM, grapeseed ext.) and guzzle green tea, but would like more guidance. -
I'm so happy with the information everyone is sharing here.
Momine - I was very surprised that they do not offer a clear list of foods to avoid for specific cancers. In this day of technology they should be able to pull it from a database. I visited the nutritionist after my initial diagnosis which did not warrant chemo. They initially said it was a .5 cm tumor which was simple to remove and later found that it spread to the lymph nodes and there was a second tumor as well that was 2cm. I had visited the nutritionist trying to be proactive, fortunately I was able to research further. It's scary to hear that you also got some misguided information because there are probably many people that took that advise and are living by it.
Deanna - Thanks for the link! I just found a naturopathic oncologist that's about an hour away from me but will be worth the trip based on the reviews I'm reading about him. I always wanted to try acupuncture but I worry about finding someone that's qualified. My diet was healthy prior to all of this as well so I was very surprised when this occurred. I never ate fast food or junk food. Whole grains and vegetables were part of my daily diet and now they are the bulk of my diet especially now seeing how they manage to get soy into everything else. Do you eat miso soup or sushi at all. I love Asian food and miss it so much.
Fallleaves - Welcome! I also guzzle green tea. The doctor has me on vit D and baby aspirin right now but I am curious about your other supplements. I have read about mitake mushrooms but haven't heard about the others, can you tell me a little more about them. I am a strong believer in supplements.My mom is 89 and lived with no medications, only supplements up until last year so I believe they really can change our lives. -
warriorchick - I saw the nutritionist at MD Anderson and was disappointed also. She didn't suggest ensure and told me only "whole" soy foods, but it was pretty much ,"go by the choose my plate guidelines"
Then I read Anticancer which I really liked and cut back on meat, only grass feed and hormone free and only low fat organic dairy, then I read Life Over Cancer and I liked him because he us actually an oncologist, but it is much more restrictive. The only meat is fish, no dairy, and it takes a lot of beans to get enough protein. I'm just not sure I can do that for the rest of my life especially not knowing if it will really make a difference. Then you hear from the people that say beans aren't really good for you so what so you believe? It's hard to figure out the right thing to do. I am still struggling right now. -
WArrior50, I just checked the material my nutritionist gave me and MyPlate is very prominently featured. I'd think that is chosen as a good starting place for a consult as it helps some of us identify areas where we are way, way out of sync. That said, the question is how well the standard plate meets the needs of us ER +, or possibly ER- breast cancer patients. I'm looking at that plate right now, and the icon has no section for fats. And no garbage bowl for estrogen-rich foods or suspicious additives. Before BC, my idea of protein was a nice fatty steak, or chicken thighs with the skin on. Now I'm looking at fish and white meat skinless chicken for protein. I've replaced nice, yummy, globs of butter or mayonnaise with avacado and teeny, tiny measly bits of "real" fat, and lost 25 pounds.
Now, my onc stresses that there are two things that can make a significant difference in avoiding or delaying recurence: Losing weight (sigh), and walking 30 minutes/day. I've read all the "Eat Healthy, Live Healthy" stuff for years and years, and hope it delayed my breast cancer, and maybe prevented some other kind, but, search as I might, I can't find any concrete support for specific foods. Yes, there are lists, many lists, and I'm right out there trying some of them, and reading here in hopes of finding more solutions.
A good part of the reason, by the way, that I've been focusing on losing weight and reducing bad fats in my diet, is that when I look at what I've done "bad" in the past, that might possibly have particularly nourished my cancer, it's bad fats that stand out as not being part of a "good" anti-cancer diet, or a healthy diet in general. When I look at the articles in myplate.gov, the helpful tips do stress low fat choices.
Now, that's all the mainstream stuff. Here's something I'm kind of tossing around in my own head, and kind of trying out. I encourage feedback, ladies: Do any of you think keeping protein intake kind of on the low side helps keep cancer from growing?
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No, I think just the opposite personally. The boom in obesity took place when very low fat diets really boomed in the 80's. though it is not politically correct, study after study shows better reduction of metabolic syndrome with low carb (high protein) diets. The thing is, I think it is whatever works for you. However you can reduce your body fat and keep it off to lower your estrogen level is the "right" diet. If a diet is unsustainable for you it doesn't help. I am also not going to endlessly worry about phytoestrogens in every thing I eat, beyond dropping my daily breakfast bar that has hydrolized soy protein. Small amounts of natural soy are fine.
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