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Anyone who has always eaten right and still got Stage IV?

KMBL_ profile image
37 Replies

Hi, all!

I am going to start out right off the bat saying I'm a skeptic about a lot of things. I take advice from others with a grain of salt. I was just pointed to a series that's called "Radical Remission," a docuseries that is starting in March. I really want to know who here has always eaten healthy but still ended up with Stage IV cancer. Is anyone thinking of watching this series? I don't mind watching it and hearing what they have to say, but I will make up my own mind about it. I know we can't go into remission, per se, but we can have no evidence of active disease. I don't think they're one and the same. Thoughts? There is so much conflicting information out there, you don't know who to believe or trust.

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37 Replies
illini9 profile image
illini9

I actually read a book called "Radical Remission" by Kelly A. Turner - wonder if it's based on that. It was a fascinating read and exceptional stories of people. I too take it with a grain of salt because you don't know is that why the remission or were they exceptional responders to something else. I think it's great to read/watch lots of perspectives and then make your own plan. I often write down lots of questions for my doctor after reading articles. I was denovo - didn't have an unhealthy lifestyle but certainly wasn't a health nut.

Thanks for the info on the series - I'm going to check it out.

KMBL_ profile image
KMBL_ in reply to illini9

Yes, that is the docuseries. Thank you for your reply.

4thTimesTheCharm profile image
4thTimesTheCharm

Yes- always eaten meat sparingly, LOTS of veggies, no alcohol; pregnancies early in life, only distant relatives w C, and I show no carrier genes. Yet I’ve had 3 types of BC since 2001, and MBC since 2018. Go figure.

I don’t use the term “remission” ever, as many misconstrue it to mean that the cancer has been turned over or handed off to some unseen recipient that results in abolishment from my body. Rather I explain it terms of asthma or diabetes, always there and under control...for now.

Didn’t know about the series you mention. Where is / will it play?

KMBL_ profile image
KMBL_ in reply to 4thTimesTheCharm

Girlsptz placed a link above. Thank you, Girlsptz.

Hi,

I led a fairly healthy lifestyle before my diagnosis and took active steps to improve my health, ward off disease, and trying to avoid serious health conditions as much as possible. I never missed diagnostic checks (cervical smear tests, vaccinations, that sort of thing). Other than three bouts of chickenpox (unusual, I know!) I have always enjoyed good health. Despite all that I was diagnosed de novo with metastatic breast cancer in my 30s. I have tried to work out what may have started it all off. I think it was a combination of factors, and that the birth control pill may have contributed to my diagnosis. But I can't prove it.

Having said that, I have taken steps to improve my health since my diagnosis. I have cut back on sweets and exercise more, take supplements and try to get plenty of rest.

Sophie

SunshineBoss profile image
SunshineBoss in reply to

I believe my mbc is from being on birth control pills for almost 30 years. Women should be made more aware of this - I definitely would not have been on it had I known.

in reply to SunshineBoss

I feel the same way. I was on the pill and also depo provera for 16 years total. It's interesting that as soon as I was diagnosed I was told to immediately come off the pill before I could start treatment. I don't think it is a coincidence that my disease is ER/PR+ and the pill contained oestrogen and progesterone, the very hormones that fuel my cancer. Like you, I would not have chosen to use these forms of birth control had I known about the risks.

Sophie

SunshineBoss profile image
SunshineBoss in reply to

Agreed. I have six sisters. I’m the only one that used birth control pills and I’m the only one that got breast cancer.

KMBL_ profile image
KMBL_ in reply to SunshineBoss

I used them, but my sister did also. She doesn’t have breast cancer. She’s older than me. I wouldn’t doubt they can probably cause issues.

Kiera49 profile image
Kiera49

I didnt eat very well, but did plenty of exercise so was fit, I have since changed my diet to include food from all groups and less sugar and avoiding aspartame. But my mum said our cancer was due to faulty gene, I dont know if eating plays a role but I guess my healthy eating didnt help, have never smoked or been a heavy drinker though.

KMBL_ profile image
KMBL_

I had exercised since my early 30s. My eating is not the best because I’m so picky, but I wasn’t overweight. I don’t gain weight at all at this point. I lost quite a bit without even trying, which is what led to my finding it in my stomach. My husband asks me every day what I weigh. Thankfully, I’m holding steady now. I think he would probably panic if I started to lose again. I really appreciate your replies.

Red71 profile image
Red71

I’ve always been a healthy eater, my mom insisted on it, so it’s always been a habit. I think healthy eating can make you feel better but it will never keep anyone from getting cancer or other chronic diseases. I’m pretty fatalistic...if you are going to get it you will. Elaine

Hi KMBL_ ,

You bring up a really good question. I do the same...sift through the information, look into different theories/hypotheses and then dig into scientific research, e.g. NIH, NCBI, JAMA, reputable universities, etc. You'd be surprised at what has been studied (generally only loosely directional results outside of studies done by Pharma). The stuff is hard to read, at least for me, but like a new language you kind of catch on and the Abstract/Conclusions give you most of what you need. I've found good info on infr-red therapy and fasting, e.g.

Re: diet, supplements, etc., there are a lot of theories floating around, many supported "simply" by anecdotes, and I put "simply" in quotes to indicate that it's not that they matter. I think the two big books out there are The China Study (an actual large study - only partly re: cancer) and Radical Remission. I scanned the first and own, but have not yet red, the second. I'm much more inclined to make changes to my diet because that's no big deal. And what most of them recommend is a really healthy diet anyway, so why not feel better along the way. But we all need to weigh our happiness with a heavy finger on that scale.

At the end of the day, I think these things are almost certainly at the margins of what helps, e.g. I don't think they're anything close to the meds. But I've always been a big believer in the power of the increment. When I worked, and a test program was not making money (yet!!!), I'd say "Yeah, but look...If we can increase exposures by just 10%, click-thru's by 0.2%, and average sale by $10, we're making money!! So let's tweak to see what happens. Sometimes it worked! I'd always tell my kids the same thing....if you read those notes one more time, you might get 5 more points on the test, which might turn a B to an A!

So my long-winded point is: You never know what might tip the scales. If it's not too much trouble or sacrifice, why not? :)

p.s. I think genetics and the environment are the biggest causes. That, plus (bad) luck.

Re: genetics, you mention having no family history...nor do I...but both my sister and I (only females in our sibling set) got BC before 50...they say it's almost certainly something genetic, just not a gene they've figured out yet.

Re: environment, there are so many carcinogens in what we're exposed to. Pesticides, carpeting/fabrics, plastics, cooking utensils, and - my god- the air! The US is much more lax than Europe in allowing these things and, yes, in isolation, any one chemical might not give you cancer, but the cumulative effect probably does. (Let's vote thoughtfully).

Re: luck, we are each one of billions of humans, quadrillions (or more) of organisms. We are almost programmed to get cancer after a certain amount of time, i.e. it takes two mutations in a cell/gene/something to trigger cancer. Amost everyone has that first mutation after a certain age. Some of us get them faster.

Not sure that helps at all...but I think we all develop our own hypotheses re: why this happened to us. I prefer to believe that what I've done/not done has very little to do with it! :)

Take care, and please keep us posted on what you learn/come to think...It's always interesting to hear different POV's on this..

Lynn

KMBL_ profile image
KMBL_ in reply to

Thank you, LynnFish. All great points. I really appreciate it.

Mindysooty profile image
Mindysooty

I've lead a reasonably healthy lifestyle - never smoked, do drink but only socially an not a lot, diet historically has been okish but I do have too much of a sweet tooth.

I've read the book Radical Remission. Truthfully - I did get some useful information from it and the stories were amazing but for me there was a little too much emphasis on not pursuing conventional medicine and in reality, how many of us can trip off to the Himalayas for months on end. I'm sure for those people who can, that's great but my reality is quite different. I would watch the series if it comes on in UK. Thanks.

KMBL_ profile image
KMBL_ in reply to Mindysooty

Thank you.

Stage4Gir profile image
Stage4Gir

I have read radical remissions too and they don’t just focus on food. I’ve noticed no one has mentioned stress which I feel is a huge part of lowering our immune system and giving cancer a chance to take hold. Yes everyone has stress but it’s how you respond to it. I think good plays a part not in how you get cancer but in how it makes you feel overall. I use food for energy and vitality (neither of which I have right now due to chemo haha) but hoping to build myself back up soon. Anyone have extreme stress before diagnosis? Or chronic stress? Also having a purpose helps. I was first diagnosed with Stage 3B back in 1996. Given 5 years tops but my kids were younger and I was opening a business which gave me great drive. I also said I’m not going to die because I have to much to do and I believed it! Obviously I didn’t die but I did get it back in 2006 and again in 2016 (every ten years) and then finally Stage 4 in 2018. In addition I got a very rare and aggressive (less than 1%) ovarian cancer in 2019. So her I am trying to change my life in order to extend it. I eat fairly healthy but most of the change I’m trying to effect is emotional and stress related in addition to finding more of what gives me joy as sometimes it just feels as if I exist rather than live. Sorry for the long post but I see so many searching for the “diet” that will help and I think it needs to be a more holistic approach to healing. Ok long opinion post over. Have a good day ladies I’m off to try to work.

KMBL_ profile image
KMBL_ in reply to Stage4Gir

I'm so sorry about all the years you've had to deal with this. I was diagnosed out of the gate Stage IV de novo, and I don't know whether to be happy I didn't have to struggle with the different stages in between. I've had a stressful personality my whole life, but I've always felt it made me do better. I do very well under pressure. The only thing I felt was so stressful I might die because of it was because I was having to travel to and from work 24 miles each way every day, and the stress from the traffic was going to kill me. I changed that in 2014 and came home to work. Best decision ever.

I wish you well on continuing to fight.

Mindysooty profile image
Mindysooty in reply to Stage4Gir

100% agree that stress is very likely a factor - definitely in my case. My life pre and post cancer has been very stressful, everything about it from me being a child brought up in quite a tough area and my dad being the local bobby (police officer for my American friends~) - fight or flight - had to do both many a time. Then when I was 12, we lost my sister who was then 14. When I got older and had kids, my middle child was diagnosed with severe autism just before she was two then later on with epilepsy on top. Years of sleep deprivation, fighting for Amy's rights, inevitable divorce culminating in 2010 initial DX , 2019 MBC dx. But don't get your violins out yet - I have a lot to be thankful for, not least my first grandchild due TODAY - EEK - I'm just pointing out that in my case, I really do feel that the stress throughout my life has been a contributory factor in all this. I started looking into and have reiki because I agree, a more holistic approach is what will work best - for me anyway.

I also hear what you're saying about having a purpose and not ready to die because you have too much to do. I genuinely think having that sort of positive outlook can have a bearing - it certainly seems to have for you, you've been through so much since 1996 and here you are, still going - maybe not as strong - but still going none the less. You say sometimes you feel like you exist rather than live, I think maybe we all feel a bit like that sometimes with all the regimes we have to follow but, you may not realise this, you are an inspiration because you're defied the odds for so long - long may it continue for you.

Best wishes. Josie xx

KMBL_ profile image
KMBL_ in reply to Mindysooty

I just had my first grandchild a bit over six months ago. I babysit him one to two times a week. Can I say it's the best job I've never been paid for. I absolutely love it. He is the happiest baby in the universe and, in turn, makes me happy. I had no idea I'd love it so much. I think the reason is when I'm with him, I think about nothing else but him. I don't have to think about housework, working, or anything else. Congratulations on becoming a grandma. I hope you love it as much as I do. It definitely came at the right time for me. My husband is so awesome too. He wants me to spend as much time as I want with the baby.

Mindysooty profile image
Mindysooty in reply to KMBL_

ah thankyou and that's lovely to hear. I'm so pleased for you. I'm very excited, I can't wait. Her midwife has said she'd be very surprised if she's not had it by Saturday so we're all on high alert. She wants me there at the birth so I'm busy juggling my work diary in readiness. Happy times :).

KMBL_ profile image
KMBL_ in reply to Mindysooty

Yes, so exciting. Please come back and let me know how it went. I was there also. My daughter ended up having him via an emergency C-section two weeks early.

SunshineBoss profile image
SunshineBoss in reply to Stage4Gir

I agree stress has a part in it and exercising is a great stress reliever. ❤️

worldtravel75 profile image
worldtravel75

my friend died of stage 4 lung cancer after being a vegetarian and then a strict vegan for years - no junk ever went into her mouth. Other than drinking wine with dinner my diet is pretty damn good and I have stage 4 cancer - My friends sister just died of cancer - vegetarian and long-time yoga instructor. Live your life and stop being afraid of food

KMBL_ profile image
KMBL_ in reply to worldtravel75

Hi, worldtravel75. Thank you for letting me know. I don't buy into the fact that food makes a huge difference, that's why I asked. I had become vegetarian at one point, way before my diagnosis, but I couldn't take the food. I'm so picky. Some of the advice I've had is to stay away from sugar. I love my chocolate, and I'm not giving it up. I'm sorry the people in your life have passed. If I enjoyed eating vegetarian, I would have done it but not because I didn't want to get cancer. I am definitely a skeptic with all of the info. I also don't take supplements for the fact that I don't know the efficacy of them either. The last thing I want to do is cut down on the strength of my medication unknowingly.

worldtravel75 profile image
worldtravel75 in reply to KMBL_

I think you should just eat a healthy diet - and yes - sugar is not good for anyone - but a little isn't going to hurt - you just need to bet sensible and eat a good diet with local organic foods - just know where your food is coming from - obviously processed food is not good for anyone. So many people I know are now afraid of food and have taken al the joy out of their lives

SunshineBoss profile image
SunshineBoss in reply to worldtravel75

❤️

The very first thing I was told when given the diagnosis was Don't feel guilty. I was bewildered and said why would you say that? She said bc when I tell women, they have breast cancer many of them fall apart.

They say I don't eat meat, I am a vegan, I run marathons, I go to the gym, I never use sugar, I don't smoke or drink alcohol. What did I do?

The doctor told me how healthy you are has NOTHING to do with getting cancer. It is random (I already knew that and did not feel guilty and was not a health nut for sure.) She said many women blame themselves thinking it was something they did or did not do.

I read an article (and yep, I know we can find any article to back up what we want to believe), but I just came across it and an onco said women with stage IV are NEVER in remission and he does not like when oncos tell their patients that bc it is not true. He said it may sleep for while, but it will come back bc it is incurable and still in your body. So he felt it was never proper to tell a stage iv that they are in remission. They may go a while without any symptoms, but it is just a matter of time before it flares up again and that they need to be sure to explain that to their patients.

I don't read any of the thousands of cancer books out there about no sugar, or eating just this or juicing. We have cancer and it is not going away although for some it may make them feel better to be doing something that they believe in.

My new mantra with this is "It is what it is." So I have not changed my way of living much in eating or not exercising. I think if I tried to put healthy food into my body, it would react violently. It is not used to it:)

My friend's father was the sweetest man ever. Born in Italy and when he came to USA, he had a low level job at the NY Stock market. In 30 years, he never missed one day of work or called in sick (the old school). Never drank or smoke. Got lung cancer anyway and died soon thereafter. Meanwhile his daughter and I (I lived in an apt. upstairs in their home) both smoked (never in the house) and neither one of us got lung cancer.

diamags profile image
diamags in reply to

My onc told me the same as yours. He added that there's no science that says eating crazy healthy will help or hurt with cancer. His advice was to make sure I was getting enough nutrition to nurish myself and give my body a chance, but never to be afraid of a glass of wine or dessert.

KMBL_ profile image
KMBL_ in reply to

You and I think a lot alike. My mother-in-law didn’t smoke either and also died of lung cancer. Thank you for your reply.

SunshineBoss profile image
SunshineBoss

I’m not saying that’s the only way of getting it I’m saying I believe that’s why I got it.

It would seem to me that no evidence of active disease is the same as remission. Please correct me if wrong.

KMBL_ profile image
KMBL_ in reply to Lilykristymichael

I had no evidence of disease in my October 2019 CT scan. I have a suspicious spot now from my latest CT in February 2020. Stage IV never goes into remission as far as I know.

Lilykristymichael profile image
Lilykristymichael in reply to KMBL_

Thank you.

Geulah profile image
Geulah

I was one of those who felt really guilty, tried to watch my health , diet exercise etc. Avoided extremes. I thought, failure, tried and here I am with such a diagnosis.

I'm better , try to look at everything with faith. I avoid all kinds of sugar because why should I make it any better or easier for this, whatever it is in my body. No matter what condition a person is in we all still have a responsibility to do our best to take care of ourselves, physically ,mentally , spiritually and emotionally. I think diet can be helpful to feel better...but not to the point of feeling I'm denying myself etc. or any extreme thinking that brings you down , not up.

Biggest challenge for me is staying happy. We all have so much to be thankful for.

We all have heard of Adele Davis, big advocate of pure eating who died ,as what I remember this disease. When as a life coach I hear smokers say smoking is not healthy, but really remember their Uncle who spoke two packs a day and lived to be 90. May you all be blessed with well being , appropriate successful treatment and yes, recovery.

mariootsi profile image
mariootsi

There is so much contradictory info out there. It is confusing and we have to understand that each of us is so individual in our cancer.

KMBL_ profile image
KMBL_ in reply to mariootsi

Yes. I feel good and plan to not stress about food. There are so many variables. Just going to be happy and live. Thank you, mariootsi.

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