Preventing Reoccurrance - what are you doing post treatment?

phoenix54

Preventing Reoccurrance - what are you doing post treatment?

phoenix54

Hi Everyone

I am 2 years post treatment and am concerned about a reoccurrance but trying not to obsess either and get on and live my life (in between more ongoing tests and checking in with the onc). I feel like i have to do everything in my power to prevent a reoccurance and and wondering what else i can do. I have made some major changes, the main one being back to school and changing to a more fullfilling and much less stressful job. I am trying to exercise more and know that i need to lose 30 lbs as losing excess weight seems to be a factor in preventing a reoccurrance. i am wondering about vitamins and diet and wine and what the best course of action is. it is easy to fall back in old eating patterns.



I would appreciate hearing what everyone is doing to in this regards - vitamin regime?, exercise?, food/diet changes?, meditation?, stress changes?, job changes?, laughing more, spending time with family or not or just living like you did before....





hugs to all

Barb

Anonymous

Nice to see you again, Barb! You and I were dx'd and tx'd around the same time. Since then, I've incorporated some changes and kept doing the good things I was doing before. I've increased and diversified my exercise, began a supplementation program, and have been working towards a diet of primarily whole, fresh, organic foods, staying away from sugar and most fats. I eat almost no meat and am trying to eradicate all processed foods. I get alot more sleep and keep it on schedule. But mainly, the biggest change has been in my attitude. Most of the time, I'm can really live in the moment and find much joy in everyday life. My main goal now is to cultivate compassion, towards myself and others......and I think I'm getting there.

Good question, Barb.

~Marin

iodine

Everything in moderation.  And if you read news reports about bc, avoid believing anything they say for a couple of years, they change their minds too often.

Keep in mind that many, many vegans, track stars, other atheletes and healthy eaters also got bc.  Fat or skinny, young or old, meat or wine, or not.

Take care, be vigilent , and don't beat yourself up about it.

ravdeb

I second Dottie's advice.

caroline21

me too!

paige-allyson

Barb-

Great question. I am looking forward to reading this thread as it develops. I am "newer" to bc than you (or rather newer to dx). Being diagnosed in May was a huge turning point for me. Moderation may be good for some people but it doesn't cut it for me. What I do probably isn't for everyone but I need to feel like I am doing everything I can on my end to stay well. So...

A. I second you on the job changes Barb! I quit my regular high stress hospital job and an occasionally work there per diem. This job involved an hour commute as well. Neither was good for me. I've started working independently 15 minutes from home and am loving it. My commute is beautiful backroads instead of highway. My wardrobe can be more casual. No more politics.

B. Like Marin I have worked on changing my attitude. I realized after being diagnosed that I'd been in a pattern of sacrificing the present for some future goal and really suffering in the process. Now that I am faced with the uncertainties that go with this dx I am not willing to do that. I find that I am more compassionate toward myself and others. I've actively chosen to let go of some  resentments I'd collected over the years. These were over real injuries but I've realized that it's more beneficial to focus on all the kindnesses I've received over the years instead. I am paying more attention to relationships and to nurturing them.

C.Diet and exercise:

1) I stopped drinking alcohol completely on the day I received my full pathology report and learned that my bc was er/pr+. This was a big deal for me to do. I've always been fond of the wine but I'm fonder of my life.

2) I determined that I was not going to gain weight during chemo. I walked every day during my treatment and began making dietary changes (increasing plant foods, cutting fat and sugar, only using olive, canola, and fish oils). I did not gain weight during chemo and currently have lost 15 pounds since being diagnosed. My goal is to reach the low end of my healthy weight range by losing another 8-13.

3) I follow many of the diet recommendations made by Diana Dyer- 3x cancer survivor and dietician. However, I avoid soy and flax, and also have started limiting dairy (except for that organic lf milk in my morning coffee that I just can't seem to do without).

4) I eat fish a couple of times a week and an occasional egg (we have our own chickens so these are pretty healthy eggs!). Eat beans/legumes 1-2 x daily. I avoid other meat/poultry.

5) I eat extra fiber- All-bran or wheat bran added to my oatmeal.

6) supplements: vitamin D3 1000, calcium, maitake/reishi mushroom, fish oil.

7) Every day I aim to eat at least one serving each of: dark leafy greens, citrus, berries, broccoli or other cruciferous, dark orange, tomatoes. I also eat 2 Brazil nuts daily for the selenium. I try to have 2-5 cups of green tea daily. I avoid garlic as it can interact negatively with Femara.

8) recently I've started juicing and drinking a carrot, kale, broccoli, apple combo every day. It might sound nasty but you'd be surprised how good it tastes-sweet and fresh- and it's a really dazzling shade of green.

9) Exercise- At a minimum I walk half an hour a day. Now that I am strarting to recover from treatment I am starting to do more- going to the gym a couple of times a week and doing elliptical or bike. I am going to start a program to rebuild the upper body strength that I've lost since my surgery. I'm jogging a little. I am not new to exercise (was a runner up until a few years ago when I had a series of injuries) so this is fairly easy for me.

Seems I've written you a little book here. Hope it's not TMI! My advice is to make a habit of reading all the great info that's out there on bc, diet, and exercise, and to make the changes that seem important and doable for you. Make little changes and build on them if that's easier for you. My own self-care plan continues to be a work in progress. I stick with well supported, evidence based advice. There are lots of irresponsible people out there who want us to believe that they have the "magic bullet" that will cure us. I like to use multiple sources in my decision making. I also know that even in doing all these things there are no guarantees that I will stay on the NED side of things, but I do believe that doing these things has the power to make my life in the present better and longer. I actually enjoy reading up and find the changes I've made not only liveable but enjoyable. I love to cook so this helps. Be well! Allyson

Member_of_the_Club

I exercise a lot and I watch my diet but I don't go to extremes. I still drink. if I really want to eat something that's bad for me, i will, just not much of it. I feel like surviving cancer makes me want to enjoy life, and not deprive myself. Within moderation.

AlaskaDeb

Great question and interesting answers.  Like everything in this journey, it seems our "after care" is also going to be very different...

When I was first diagnosed I was convinced that if I just looked hard enough I would find my own personal cure for cancer....maybe it would be a combo of the right foods and supplements...maybe I needed to start yoga and hourly prayer....maybe I needed to do more chemo (yes, for 2 crazy weeks I was begging my Onc to give me a third course of a different chemo after I had finished my 6 months....)  I guess I just went a titch crazy... feeling like I need to find a way to FIX THIS!

With time much of that mania is gone.  I still get too wrapped up in researching new thoughts and ideas for "cures", but for the most part I have a sensible plan that makes me feel like I am "doing something" instead of waiting for the other shoe too fall.

I am taking a handful of vitamins and supplements:

CoQ10

Turmeric

Good multi vitamin

C

B-100

Calcium w/D

Selenium

Hmmmm I know there are a couple more, but can't remember right now...

I have quite a bit of leftover pain from my chemo.  Since I need to be on some type of pain killer I chose Celebrex.  I have gotten quite a bit of information on the "possibility" that it reduced the number of reoccurrences of breast, colon and prostate cancer. It is in the same family of drugs a Vioxx which was in stage 3 testing for reduction of cancer reoccurrence when it was taken off the market.  I know about the slight risk of heart problems with celebrex, but my doc is keeping an eye on it.  For me, the possible gain is worth the risk.

I am making lots of other changes in my life in reaction to my cancer, more because I figure that since it appears I am going to live through this, I would like to get healthier to enjoy my life.  I am starting to exercise (something totally new for me) and have made changes in my eating habits.  Do I think it will keep me from getting cancer again or from getting mets?....who knows.  I just want to feel good and have the energy to do the things I love. 

I am also taking more time to DO the things I love.  My paints are out again.  I am reorganizing my stained glass studio.  I am living more for today....

I am interested in what other people have to say

Deb C

abbadoodles

I don't do a damn thing differently and hope for the best.

Tina

Anonymous

There's so many women who ate healthy and exercised and got bc anyway I don't think the disease is at all selective. I think it's a crap shoot and if it's coming back then it's coming back. I take the tamoxifen the dr prescribed and try my hardest to just "live". I'm finding that to be the most difficult, just letting go of the fear. I'm also 2 years out and I'm just trying to keep my head above water and not drown in my own self pity.

BethNY

I do NOTHING different.  Well, that's not all true.

I live a very FULL life to honor the sisters here that didn't get that chance.

I do everything to the extreme, and I will never change.

I never smoked, hardly drank, ate fish and veggies and had no history of cancer, and still at age 26 I got it.

Here I am now at 30, and I'm a better person for my cancer experience, but there's no way in hell I'm giving up sharing a good bottle of wine with friends, or eating an amazing dinner of comfy foods with my family.  I'm not about to stop stressing the small stuff.  That's what makes me who I am.  I have high expectations, and I work well under pressure and tight deadlines.

I don't think I did any one thing to bring cancer on, and I swear if I died tomorrow, I'd be so much happier knowing that I didn't give up carbs, that I didn't deny myself all the fun and crazy things that I still love to do.

I think when I was first getting out of treatment, I was totally anti fast food and trans fats, and soy products, and eating less refined sugar, and drinking less... but never for a minute did I allow myself to get caught up with the fact that there was something I could do to control not getting cancer again.

Taking care of yourself shouldn't have anything to do with fear of recurrence, you should just do it to b/c you deserve it.

just my two cents.

twink

Abbadoodles / Tina... tell us what you really think, please.  Hehehehe... you crack me up.

I am reducing my fat intake.  Not being very successful at this point but I plan to ramp it up once I'm out of treatment.  I have added several daily supplements (curcumin, multi-vitamin, folic acid, flax oil, fish oil, D3, etc.) I want to lose a few pounds despite everybody telling me I'm obsessing over nothing.  I'm going back to the gym on a regular basis too.  Finally, I have curbed my alcohol intake although you wouldn't know it these last few weeks.

t

Fitztwins

I Agree with BethNY.  I just want to enjoy life. If my cancer comes back tomorrow...I will have known that I had a hell of a good time these past 2 years!!

If I knew that there was a silver bullet with lifestyle I would do it in a heartbeat.

Janis

Anonymous

Well Im trying to lose weight.  I read that obesity is a high risk factor for reoccurance.  The percentage per pound was incredible.  Ive gained 30 pounds since my original diagnosis.  So wt. loss is my goal.

Also just not to let things bother me anymore.  Lifes too short to get upset over the little things.  Enjoy life everyday, try to be kind and good to everyone. 

Manage my stress levels by learning to just relax.

Nicki

mkl48

HI,

What did you base your mushroom use decision on? What is it exactly that you take? Beth 

JapanLynn

Weight loss is my goal, too. 

I, too, am trying to get healthier...I've needed to do it for awhile, and bc was the catalyst for getting a move on.  I'm trying to eat more whole grains, fruits, veggies, and fish, and less red meat and processed foods.  More exercise...nothing extreme, just walking, elliptical trainer, and a little weight training...just getting off my butt more often.  I'm better with the supplements...taking them daily rather than hit or miss.

I don't want to live in fear...just trying to live more consciously, if that makes any sense.  I do agree with whoever said that this disease is a crapshoot for the most part...we shouldn't blame ourselves for what we've done or haven't done.  Waste of time and energy.

Lynn

phoenix54

Wow! lots of different responses and attitudes towards post treatment lifestyle. i guess it all comes down to trying to control something (reoccurrance) that may be beyond our control. But i guess we can do some things to keep an overall healthy lifestyle and hope for the best.



Living in fear each day is no way to live. And generally i don't. i try to keep moving forward with my life plan each and every day. Love my family, go to school, continue with learning in new career focus, plan for the future as retirement is around the corner, play lots of golf, visit friends and find things to laugh about. don't stress over small stuff, traffic and speak out when i am not happy with what is going on, don't hold things back.



But i am finding these ongoing tests and waiting for results hard to manage. i have been posting my issues on the hormone treatment section as i have some decisions coming up to make. i think i am trying to find a way to control things that i don't have a lot of control over. But i do have control over losing this excess weight (30 lbs) and think this is where i should focus my efforts along with increasing my fitness (and i will play better golf - great side effect!!)



hugs to you all as we continue in this post cancer journey



B~~

LisaSDCA

Before my diagnosis I hadn't eaten red meat for 20 years, ate wild-caught fish, BST-free dairy, organic vegetables, used natural cleansers, gardened organically, exercised regularly (both aerobically and strength training), had practiced yoga for 20 yrs, never smoked, drank rarely and in moderation, you get the idea.

However, I seem to have this leetle genetic isssue, you see. . . So I keep on doing what I've been doing (well, I'm a bit challenged with the strength part, having had a bilat mast. and recon., but I will find a way to pick up 220 lbs. of iron again). I try to believe I will continue to outlive my genetic history, love my loved ones and keep chasing my bliss.

Lisa

p.s. - thank you, Allyson for giving me a reason to be grateful for being triple neg. - I would be hard-pressed to give up garlic for Femara!

LuAnnH

I didn't fully read all the answers but as a person with mets I would suggest the one thing to do is get on with living your life!  You can do everything right and still end up with the darn cancer back.  By living your life and not giving in to the cancer and the fear you are winning the battle.  Life is precious, to precious to waste it worrying about all the "what ifs" that are out there.

Bliz

That's why I am still extra po'd about getting cancer  I did all, and I mean all, the right things short of living in the remote and pristine wilderness and eating from the land.  I even started living more for the here and now several years ago. 

In some ways it makes the BC harder to accept, realizing you were already doing everything possible not to get.  "Life's a bitch and then you die".  Hah!!!

paige-allyson

Barb- thanks again for starting this discussion. It's been interesting reading all these different perspectives.

I could not agree more with the advice from people about living one's life and not living in fear of recurrence. I also know that some of us have gone through periods where all we could do was exactly that, despite a very much wanting to enjoy the moment. This is particularly true for women with stage III breast cancer like myself, who are at high risk for recurrence and are much more likely to experience depression and anxiety related to their diagnosis. For me it was a huge turning point to get treated for depression. Doing so freed me from feeling like I was in purgatory or possibly even hell. I waent for several months of desparately wanting to enjoy every day and being so sad and scared that I just couldn't and then beating myself up for not being able to, blah, blah, blah, etc. I even felt at times that it might not be worth living if it was going to be nothing but fear and sadness followed by death from breast cancer. I finally became willing to try an antidepressant and was lucky enough to have the first one  tried work like magic. I am sharing this very personal aspect of my experience because I am sure there are other women out there suffering right now and beating themselves up because they want to "live in the moment" but can't. My experience is that it doesn't need to be this way. If this post helps one woman then for me putting this very personal aspect of my experience out there in this way was 100% worth it.

 I am so grateful that for the last 2-3 months I have truly been able to have a life worth living that's not dominated by the fears that can come with the very real uncertainties this disease can bring, especially for us stage III women. I am still committed to making lifestyle changes that I believe will maximize my chances of long term survival. It may be hard for those who are not similarly inclined to understand, but taking care of myself in this way has become an integral part of how I express love for myself, my family, and the larger community. It's not a form of self deprivation or sacrifice- on the contrary. I also recognize that decisions regarding the paths that we chose to follow in caring for ourselves after being diagnosed with breast cancer are very personal- what's right for me may be totally wrong for the next woman.

Re: someone's question about maitake/reishi mushrooms- how I decided. There's some info on the American Cancer Society (ACS) site, you can also google it- there's a fair amount of support- currently a clinical trial going on. Allyson

phoenix54

Allyson

Thanks for sharing your struggles with depression. And i am so glad to hear you found the right anti depressant on the first try. I have struggled with depression and agree really medication really does help and make a difference. my advice would be not to go off the meds too soon even when you are feeling better. just enjoy that return to good health. i went off the meds too soon and had a relapse - i am doing quite well now!



finding a good counsellor also helped. turns out i had lots of issues to vent and deal with and finding an empathetic counsellor who listened was wonderful. felt so validated and could make some plans to move on and heal.



i think this approach to "taking care of myself" is a good one and ditches the feelings of deprivation. also the endorphins from exercise really help. i am finding that jan and feb to be very blue months with the snow and lack of sunshine on the west coast. off to take my vitamin D



take care and hugs

Barb

wakebrat7

The only thing that I am doing watching is my weight.  Since my cancer was ER+ 80%, my doc told me the less weight you have on you, the less estrogen that will flow.  I also am watching the meat intake as well.

bluewillow

Hi!

What a great conversation!! I hope this bumps it up for some other ladies to learn from...  I just posted a big whine on the February rads board about my weight gain and lack of willpower to do anything about it...  You all have inspired me and made me feel more at ease, all at the same time!

Thanks again, Barb, for a great post!

Hugs to all,

Mary Jo 

otter

Thanks, Mary Jo, for bumping this thread.  I never would have noticed it otherwise.  And thanks to all of you for the sensible suggestions--things I could actually do, and believe in.

I'm not at the point of looking back, yet--I'm still just halfway through my chemo regimen and will start on an AI after that.  Recurrence is the shadow outside the door, though (plus the threat of a second primary of course).  These suggestions all make sense.  I doubt any one of them, or all of them, would have changed the course of my BC experience; but I hope they'll make life better anyway ... if I can adopt some of them.

otter 

S3K5

This is an interesting and very useful thread - after the treatments, 'ghost of recurrence' is always lurking. There seems to be no right or wrong way to live - just what is comfortable for you! I have always watched my weight - vegetarian, lots of fruits,vegetables, whole grains; excercised every day, took supplements, etc. After my diagnosis I felt that there is only so much you can do - there are other factors beyond our control (environmental, stress, lifestyle in the fast paced world) that affect our overall health.

I am really at a loss to know what to do to avoid recurrence! I wish there was a magic pill!

bluewillow

Otter, you're welcome.  The ideas are great, and at least maybe we could feel empowered if we feel like we are doing something to prevent a recurrence.  I wish you the best with your chemo-- I finished mine Jan. 28, finished rads Apr. 17, and am only doing Herceptin until Nov. '08, and I feel absolutely great-- like my old self again, so there is life after chemo indeed!

Desi, it sounds like you have done all the right things-- the things I wish I had done more of, like eating better and more exercise (though it's never too late to start).  I agree there are a lot of factors beyond our control and yes, that magic pill would be wonderful! 

I have decided to refuse to worry or obsess about recurrence. I obviously wasn't too worried about it in the 9 years I failed to get regular mammos!  I feel very lucky having mine caught early, and I refuse to let it rule my life any more than necessary!

Good luck and the best to everyone!

Mary Jo 

nosurrender

I recently wrote an article about this topic. It was funny when they assigned it to me because I was sitting in their office in my wig in the middle of chemo for  my second round with cancer.

I interviewed the top researchers out there now and they told me the following:

Diet-  make sure you lose the chemo weight and get to as close to a normal weight as you can. Cutting fats and processed foods and going a more whole-foods route is best. Cutting fat is especially important for triplenegs.

Exercise- this was the biggie- studies have shown that 30 minutes  of exercise 5 days a week can reduce your chance of recurrence by up to 50% and it can be just walking- not Ironman competition

Bone Strengthening Drugs- this is on the cutting edge- there are studies that show that women who take bisphosphonates like Zometa prophylactically are reducing the risk of bone mets. More will be coming out in June about this

Staying on your AI- that was the most confounding to docs. Since the s/e's are so tough on some women they stop and that can leave you vulnerable to recurrence. So if you are having trouble, work with your doc.

One thing that they found that helps counteract the AI side effects is Vitamin D. Most of us are deficient and that causes joint and muscle pain. If you get your blood level up to over 45 you not only decrease your pain but you also REDUCE your chances of recurrence.

If anyone wants the pdf I will be happy to send it to you.

Take care,

g 

althea

I started walking soon after I finished radiation.  That was 2+ years ago, and during the winter I slack off a bit, but I'm persistent with it overall.  It doesn't get any weight off me, but I'm more concerned about my heart health, with all the damage chemo and rads can do. 

In spring and fall, most of my activity is from mowing the lawn, pruning and taming the garden.  The concern over LE weighed heavily on my mind at first, and I started a routine I learned from a Deepak Chopra book called abhyanga.  Basically, you rub yourself from head to toe with sesame oil before taking a bath (or a shower, but I've been partial to baths for a while).  It's my hope that it will reduce my risk of LE.  It takes away the discomfort I feel in my scar tissue from surgery (I got some hefty keloids).  But best of all, it feels really really good.  I consider it my cadillac in the self care department.  

More recently, dusted off my juicer last December.  By that time I was 2 years post radiation and still suffering fatigue deluxe and recurring bouts of nausea that never did competely cease after chemo.  I thought maybe carrot juice would be the final straw in my battle with fatigue.  Not. 

Then my thyroid test showed a 6.4, indicating hypothyroid.  Long story short, I didn't get help from my doctors and I took a leap of faith into some natural healing products, including 'superfood.'  From the very first day of taking superfood, my nausea stopped and hasn't returned in the two months I've been using it.  My energy is improved also, but still has a ways to go to be what it once was.  I just feel so much better nowadays.  I'm even toying with the idea of going vegan, and believe me, I'm a die hard cookie monster.  I've been visiting the forums at my.crazysexylife.com where people are avidly pursuing healthy food.  I realize nothing is bulletproof against cancer, but that's definitely the direction I'm heading.