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For 5 or more years Survivors: Did you make any lifestyle changes?

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Looking to learn what do survivors do to avoid recurrence? Any lifestyle changes you made? Like not eating sugar, followed any specific diet or did any changes that you think helped avoid recurrence? Thank you!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,933
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    This will be a disappointment for those looking for tips. I am stage IV, and am about to hit the 12 year mark, progression free.
    I was not overweight and in good general health at time of dx. I eat whatever I want but do look toward moderation with respect to sugar but if a cookie makes me happy, I eat a cookie! I eat little red meat but that’s more a matter of taste. Lots of water, walking but nothing compulsive or restrictive.
    If following diets, regimens, and protocols feels good and makes you feel proactive then it’s a good thing. A diet that allows all things in moderation also works very well for many. Regardless, everyone’s health can benefit from good nutrition and overall health habits but there is no proven way to avoid recurrence through nutrition. Do what makes you feel good. Take care

  • maggie15
    maggie15 Member Posts: 989
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    There are studies that show a healthy diet, regular exercise and avoiding alcohol statistically lowers the risk of recurrence anywhere from 40% - 55%. Of course, this is not a magic prescription guaranteed to work but it is good general advice for maintaining your health. My endocrinologist has a sign up in her office which says, "If you can't find the time to exercise now how will you find the time to be sick?" so doing this can benefit anyone.

    Exbrnxgrl is right when she says to do this in moderation. The occasional cookie, glass of wine or day at home when the weather is awful does not nullify all the healthy things you do most of the time. Right now I'm having difficulty returning to my prediagnosis fitness level but I continue to follow this advice since it keeps things stable.

  • mavericksmom
    mavericksmom Member Posts: 1,193
    edited May 2023
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    My comments will likely be disappointing as well. I had breast cancer three times within 20 years. Each was a new cancer, not a recurrence. My last Dx was Aug. 2022 and I am absolutely NOT making lifestyle changes.

    I am obese and I have tried my entire life to lose weight. After each of four major health issues, first two times with cancer, and having both shoulders totally replaced, I kept my mindset into full health mode. Nothing crazy, just eating healthy and exercise.

    In 2021 I was really making progress. I was sure I was finally on my way to a new, healthier me! I lost about 35 pounds between the summer of 2021 and the summer of 2022. I was exercising and feeling good. I made changes to my diet, limited wheat products to around once a week, limited processed foods, and watched portion sizes. Simple, easy to follow, what I thought would be life changes.

    Then cancer hit again. Another mastectomy last fall followed by exchange surgery this spring. My attitude has changed. I don't feel well, I'm bloated most of the time, low energy, etc. I feel like every time I try hard to improve my health, it gets worse! I still try to make healthy food choices, but it isn't something I am focused on now.

    Frankly I am tired of all the emphasis on lifestyle changes! Most people are fully aware of the recommendations for a healthy diet and exercise, especially those of us who have spent a lifetime trying to lose weight. I am who I am, I am sick and tired of the fact that my obesity is always being emphasized by doctors! When I needed help with diet, the medical community let me down. My orthopedic doctor recommended a wonderful nutritionist, but she called me prior to my visit to inform me that my insurance wouldn't pay for my visits because I am not diabetic! I couldn't afford her fees. My PCP told me I could see a nutritionist at a local grocery store. I don't "shop" for a nutritionist at a store! Now I am no longer interested in seeing a nutritionist, that ship has sailed.

    My breasts were the only parts of my body that I ever felt good about, now they are both gone. I have lymphedema in my left arm and have about as low a self esteem as anyone can have. I just can't fight how I look anymore, so no, I will not be doing any lifestyle changes!

    I am sorry to sound so bitter.

    *edited because I didn't feel comfortable with some things I shared.,

  • mountainmia
    mountainmia Member Posts: 857
    edited May 2023
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    From a study published in 2022: "In conclusion, obesity and overweight, low rates of physical activity, and hormone receptor-status are associated with poorer BC-treatment outcomes. To date, there is a lack of evidence to suggest which dietary pattern is the best approach for weight management in BCS."

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8839871/

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8839871/

    (Edited to add, this doesn't seem to be an active link. I thought it would be but with the new platform, I have NO F'ING IDEA how to make it active. Really frustrating. Things that should be easy are not. SO. You can copy the URL into your browser to look this up, if it doesn't show as active for you. Same for the second one. @moderators )

    From a 2017 study: "A recent review of the effect of lifestyle factors on breast cancer mortality concluded that physical activity has the most robust effect of all lifestyle factors on reducing breast cancer recurrence.22" and "Patients should be encouraged to engage in at least 30 minutes of moderate-intensity physical activity at least five days of the week, or 75 minutes of more vigorous exercise, along with two to three weekly strength training sessions, including exercises for major muscle groups." You really should read at least the introductory material here.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5318212/

    The study linked above includes links to many others. Basically excess weight is a big risk factor, but physical activity is also key. Get plenty of exercise. Even (most) women who are overweight can do this, even if movement needs to be modified because of overall fitness or specific issues like arthritic knees.

    So if you make no other lifestyle changes, make the effort toward getting plenty of exercise. Work with a physical therapist if needed so you can get the benefits of it. But also if you are overweight, for sure put in the effort to not gain, and if you can reduce toward a healthier weight over time, do that.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,933
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    I do want to be clear that I am not encouraging an unhealthy lifestyle but I truly believe in moderation when it comes to diet and no compulsive diets, protocols, etc. I am very clearly on board with maintaining a healthy weight and exercising. Doing this benefits your health overall and not just with respect to breast cancer.
    I have some personal trauma connected to believing that changing lifestyle habits will keep one disease free. My younger sister passed away a bit over 10 years ago. She led a “clean” lifestyle before that was even a thing. At age 50 she was diagnosed with a uterine sarcoma and passed away about 6 months later. She was very bitter at one point because she had done everything “right”. A healthy lifestyle is important but it should never become a compulsion nor is it a guarantee of good health. So for many reasons, including this highly personal one, I find moderation most comfortable.

  • mountainmia
    mountainmia Member Posts: 857
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    I understand, exbrnxgrl. My personal reasoning is basically that, if trying to stay active doesn't keep me from a recurrence, it will probably help me endure a recurrence more easily. But I mostly do what I do because I enjoy it, not from a health compulsion, so that is another difference I have with a lot of other people.

  • mavericksmom
    mavericksmom Member Posts: 1,193
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    I agree with exbrnXgrl 100% Nothing I did kept me from having new breast cancers three times!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,933
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    mavericksmom,

    Please understand that I am NOT suggesting that folks don’t try to exercise, manage weight, get enough sleep, and eat a balanced nutritious diet. What I am trying to get across is that diet/lifestyle can help keep one in better health but it is not a guarantee of no further disease. Besides my sister, we have had more than a few members who were upset by a dx, new or recurring, because they felt they had “done everything right”. Some were in shock, as was my sister. A healthy lifestyle benefits most of us but carries no guarantees. I hope that those looking to improve their diet/exercise regimen do so but understand that while you may improve your chances against recurrence, recurrence can and will happen to even those living the cleanest lifestyles.

  • hn
    hn Member Posts: 31
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    Thank you all for sharing your experiences and thoughts. Really appreciate. 🙏

    I am 41, have led a relatively healthy lifestyle. Never smoked and drank rarely, socially. I have healthy weight so it shocked me when I had this diagnosis and just trying to make sense of what I can do to avoid a recurrence and also what I could have done wrong.

    I do agree with you all though. Wish you all good health. Take care. 😇

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,933
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    hn,

    You have done nothing wrong nor have you done anything that likely caused your breast cancer. Repeat as often as needed until you can fully accept how random this disease can be. Yes, you can do things to lower your risk according to large research studies, but lowering risk is not eliminating it nor is it a guarantee of anything. Your greatest risk factor? You’re a woman and not much you can do to change that . Yes, it stinks . Do what works for you knowing there are not guarantees.

    Again, with respect to diet/lifestyle, do what feels comfortable to you as long as compulsive adherence to a particular regimen is not causing you stress. Yes, that happens. My very brief foray into compulsively clean eating did not work out well 🤷🏻‍♀️.

  • harley07
    harley07 Member Posts: 302
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    @hn - my advice is everything in moderation for an overall healthy life. It’s important to enjoy life and unfortunately, there are no guarantees. I do feel for you given your young age, however, as others have advised, you did nothing wrong. Breast cancer is an equal opportunity disease regardless of age, weight and overall health.


    @mm - I hear you. I understand your bitterness. I feel as I’m older, the healthcare system as been very dismissive and at times downright rude. I completely disillusioned.

  • mountainmia
    mountainmia Member Posts: 857
    edited May 2023
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    Pardon me while I try again to link this research article. I am testing the process. Mods tell me it should work and OF COURSE IT SHOULD.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8839871/

    and yet it does not.

  • maggie15
    maggie15 Member Posts: 989
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    @mountainmia, The link icon worked for me before the changeover but I am also having trouble with it now. I copy and paste the address of the article which does work. Also, I opened your linked article with copy and paste into a search window,

    @harley07, How true an observation about the healthcare system being dismissive of older people. Recently I called out my PCP whose comment was "Well, what do you expect at your age?" when I mentioned increased fatigue. She was taken aback when I asked if I was too old to bother ordering a blood test to see if her reduction in my iron meds to reduce GI issues was causing this problem (it was.) Yes, I have more GI SEs now but it's my choice as to which is the lesser of the two evils since I have to live with it.