My choice--refusing treatment
Comments
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forgive me if this is ignorant but I am curious about something: my cousin has stage 1 bc that is ER+ PR- HER2- and no lymph nodes involved. She did rads but refuses to take tamoxifen: would her risk be the same as if she is triple negative because she refuses anti hormone treatment?
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April, this is a complicated disease so there is no ignorance! I think it depends on the strength/ weakness of hormone receptors. She may be strongly ER positive or so weak that shes almost ER negative. If shes closer to the weak side on the ER and neg on the PR I can relate to her possibly declining. Maybe she feels the benefits dont out weigh potential side effects? As we know from other threads there are other options out there that she may prefer even if shes strongly ER positive.
My ER is not very high and I'm PR neg. I'd be a little more "excited" about taking arimidex if I was strongly positive. We all have individual struggles with our choices and once we have all the info we choose a plan that we feel is best. For me that's taking the little pill unless I have intolerable side effects. So far so good. I will re evaluate should it affect my quality of life.
I hope you and your cousin are doing well!!
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thank you DebAL!
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First, let me say that I admire the courage and decision making of all of you caught in this dilemma.
A bit about my story: 60 yrs old, two tumors same breast. Original biopsies showed both were highly ER/PR positive (over 95%), one was her2 neg, the other was Her2 equivocal.
Simple mastectomy done, 1st tumor came back with oncotype 9 (low risk, no chemo necessary) 2nd tumor still her2 unknown. Two oncologists recommended chemo. I pushed and pushed, changed insurance companies and doctors (thank god for the ACA) and got the Mammaprint (assessing risk) and Blue print (assessing tumor type) done on both.The good news was that the pesky tumor 2 came back Her2 negative (finally) and low risk. No chemo necessary.
The bad news was that tumor 1 was now rated LuminalB, just over the cutoff for high risk. Some benefit from chemo predicted.
So how with all these conflicting results should someone decide?
For me, the risks of chemo (since I am wildly sensitive to medications, call me the poster child for every rare and awful side effect possible) outweigh the risk of recurrence.
And that also makes endocrine therapy dubious, although my oncologist has okayed starting with an off-label half dose to start.
And here's the thing about endocrine therapy - you get the same dose whether you weigh 100 pounds, or 300 pounds, and we KNOW that fat cells produce estrogen. Why aren't their studies titrating the amount of AI necessary by individual?
Apparently, for my practitioners, it's not "standard of care" to test estrogen levels, so if I want that done, I"m on my own. So I have already had a baseline test done by a caring integrative physician (and out of my own pocket).
In the meantime, I've read research that moderate exercise (150 minutes) per week will cut your risk of recurrence of hormonal driven cancer by up to 40% and time-restricted eating (no eating between 7 pm and 8am) will cut your risk by 30% (phase I trial). So that's my treatment plan. Oh, and weight loss, have lost 20 pounds since my diagnosis 4 months ago. (And now people worry that I'm getting too skinny... not even close!).
Do your research. Push for more testing. Then do what you think is best in your own case. In the end, it's just playing the odds, while being informed by your own body. And go forward confident in that choice.
Thanks for "listening" to my rant. Whew.0 -
Karuuna, Interesting comment on reducing recurrence risk of hormone driven cancer.
For many years I exercised (walked the dogs 6 miles a week, ran 12 miles on the treadmill each week) and didn't eat between 7pm and 8am (I take my thryoid meds at 10pm and that's why I don't eat after 7pm).
My BC was hormone negative. Perhaps my lifestyle prevented my BC from being hormone positive? LOL.
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Karunna - My PCP was talking to me today about how they are increasingly finding that many tumors are mosaic, so carry different kids of cancer cells within a single tumor. So I guess it's hard to get a clear bead on exactly what your cancer is like. Very frustrating. I asked about why the tamoxifen dose was the same regardless of weight and it's simply because that's the dose used in the research. Although I did chemo and am now on tamoxifen, I'm focusing my energies of lifestyle changes. I'm also trying to increase my exercise and working on dietary changes. I don't need to lose weight, but I feel like it will be to my benefit to change how I eat. So I'm going with a mostly plant-based diet (I've become a vegetable-eating machine) and also doing the restricted feeding (16 hours fasting when I can, so usually 7p to 11 a). I'm scheduled with an integrative care doc next month and am really looking forward to brainstorming with him.
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I know I've said this before, but my grandmother survive breast cancer twice without chemo. I thought about it but ultimately chose to have it. They are saying my primary tumor had a pathologic complete response, which I guess is pretty rare. It had it's own blood supply so I don't see how cells wouldn't have spread and I just hope the chemotherapy got them as well.
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WC3, That's fantastic!
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Bellasmom- LOL. It sounds like you are doing well, even with your Her2 subtype. Unfortunately, all those health measures don't seem to give you any advantage over that type. While it may not have helped prevent it, I can't help but believe stronger bodies do better.
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Wanderweg -that's the same answer I got "That's the dose they used in the research." That's why I think it's important to get monitoring on your estrogen levels. It's frustrating that there isn't that kind of research happening. The only thing they are researching is if you should take it for ten years instead of 5. (Just me, but that feels like it's being driven by the pharmaceutical companies.)
I spoke to the Agendia doctor (makers of Mammaprint/Blueprint) and she said the same thing - that tumors have all those characteristics, and their Blueprint testing identifies the dominant track. For mine, Her2 and basal were negative, while luminal was a very high positive. She said that doesn't mean I don't have Her2 characteristics, just that they are minor compared to the luminal proliferation.
I've been working with an integrative doc too, and have a host of supplements he recommended. One of the things he advocated was broccoli and similar cruciferous vegetables, that they contain sulforaphane which has been shown to prevent breast cancer as well, and some new studies show that it prevents metastasis. I take a supplement with sulforaphane and eat either broccoli or cabbage every day, or both. You might ask your integrative doc about it. Wish I had known about it sooner, but I was one of those folks who was supposedly "low risk." Aw well... we can only move forward.0 -
Karunna - Although I’ve not seen the integrative guy yet, people I know who have seen him say he pushes cruciferous vegetables. So I’ve become a cruciferous eating machine! I eat at least two different kinds each day, especially broccoli, cabbage, kale and Brussels sprouts. And I’d never even had turnips before all this started, but I eat them now. At the moment, I’m trying to sprout broccoli seeds.
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wanderweg and Karuuna, I hope cruciferous veg will help you. I can only speak for me and tell you I ate broccoli and cauliflower and Brussels sprouts at least four times a week, usually more, my whole adult life, say 40 years. Raw and cooked. Love them. Nevertheless developed MBC, diagnosed de novo.
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Muddling - Well, you'll notice I did a BMX, chemo AND endocrine therapy! I had a healthy diet and exercised before, too. But all I can do is try. I have no illusions that it's a magic answer. And I'm very, very sorry you were stage IV right out of the gate.
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I'm so sorry MuddlingThrough! That must have been quite a shock!
FWIW, I think the amount of sulforaphane used in the studies is more than you can eat, sadly. It's also killed by cooking the veggies. The estimate I saw if you wanted to try to eat enough was 1 cup of broccoli sprouts per day (because the sprouts are higher in sulforaphane content).That's why I take a supplement, rather than relying on just eating them. The fresh ones are just a supplement to the supplement.
How are you doing? Are the treatments helping?
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I had diagnosis and lumpectomy but don’t want chemo, hormone therapy and possibly no radiation. How are you doing as I see post was 201
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wanderweg and Karuuna, I hope for all good results for you no matter what :-). It's great that you're researching and making the changes that feel right for you!
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muddling - And I for you. I hope the ibrance does its job and holds you steady for a long, long time.
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When first diagnosed and for some long timers, we research all the preventive measures for recurrence. Some of us need to devote our lives to these measures to help us feel in control of our future. I did too. But we know that eating bushels of brussel sprouts will not be enough. But I do love brussel sprouts! But staying healthy will help us face future health challenges or prevent others. Like heart disease. And supplements have been proven over and over again NOT to replicate the benefits of original food sources. And some supplements are so over the top that they do harm. I think eat as healthy as possible. If we cannot get all the nutrients we need through eating, and instead require supplements, then the balance of survival is gone. Our bodies need true nutrients. And cruciferous veggies are very, very good for us and delicious. But diet alone won't do it. Low BMI, exercise and healthy lifestyle helps. We need to be realistic and as healthy as possible while accepting that there is no magic to this. No one fix works for all. Make certain that pleasure and happiness is in your plan. We might not be able to control our futures, but we can try to enjoy and appreciate our present.
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TB90 - I actually agree with everything you said. I had a pretty healthy lifestyle prior to my diagnosis. Very healthy diet, I exercised, I’m thin, I never smoked. I got cancer anyway, but maybe that level of health helped me get through chemo. And that’s my goal now - sure, I’d like to lower my recurrence risk but I can’t do anything about the aggressive nature of my cancer so I want to be as healthy as I can for when/if it returns. And I’ve a,so rrad the research on supplements, so I’m just focusing on eating as Whole Foods a diet as I can. Which, as you note, also happens o be delicious.
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The Integrative Oncologist I had a consult with recommends several validated ways to lower recurrence rates: Low animal fat diet, hence low dairy, and a colorful veggie heavy diet. (Basically vegan/pescatarian with occasional other organic animal products). 30+ mins exercise per day. 3-6 hours a week is the sweet spot in terms of lowest recurrence. Metfomin lowers recurrence. Melatonin as well. My consult was specific to TNBC so YMMV. With TNBC a ketogenic diet is also helpful (not animal laden Keto, more of a vegan keto-- that advice came from a different oncologist.) He recommended quite a few supplements on the argument that our soil is increasingly depleted, and the assaults on our system from pollution, etc, have increased, so that the nutrient levels in our food are too low. He said there is a "dirty dozen" most-sprayed crops that must always be organic if you eat them... I recall corn, potatoes, wheat.... the list is online. (Dr Keith Block, The Block Center, Chicago; his book is "Life Over Cancer.")
One really great solution to get a ton of cruciferous veggies in is to juice them. You can juice a huge salad bowl's worth of veggies and wind up with an 8 oz glass of juice, and you can include all the stuff that's helpful.... garlic, ginger, tumeric. Also, there are food based supplements like "super greens" which is made from dessicated juiced organic veggies, in powder form. Mushrooms have a lot of value as well.
Omega 3, D3, and Curcumin seem like three really important ones, though I take about 10 others too. You can get good, food-based supplements that are much more absorbable than CVS supplements. One of the things that I noticed when I began this regime was how much better I felt physically. I am 57 and there was a achy hip and an achy knee that I had attributed to aging -- both are gone.
Last, fasting. Read about Valter Longo/USC and his fasting studies. A brief fast once every month or two can do a lot to re-charge your immune system. The rebuild is important so after the fast you want to eat nutrient dense foods, and for me I break keto with lentils, sweet potatoes, etc in my rebuild to make sure my immune system is getting what it needs.
I feel better than I have in years on this plan, and am now at my age 40 weight. That alone is worth it!
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great post santabarbian!, thank you. I'm so glad you are feeling well!! My understanding that there is a specific MET level range we must obtain to potentially ward off recurrence. Of course any amount of exercise is beneficial. We can only do what we can do depending where we are in treatment etc. Please post a link if you have one. I did at one time. I'm awful about hanging on to those links.
JoeB, no thanks
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hi
I am new to all this and following along with great interest. Can you tell me what w MET level range is? Thanks so much
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Wanderweg: Please share more about your fasting schedule. That is almost my natural eating pattern. I have been repeatedly scolded by dietitians and nurses alike for skipping breakfast. They claim it puts me at risk for diabetes even though I have no risk factors. Gosh it would be awesome to not only stop feeling guilty about my eating patterns, but to actually believe I may be doing something beneficial.
I always worry about "best practices " as they can change instantly and dramatically. New research comes out that completely negates everything we formerly believed. Sometimes feel a little bit like an experiment hoping for a good outcome.
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samnjb, I will send you a private message later. I probably should have asked my question on the exercise thread. I was just feeding off the good energy of santabarbarians post! Lol I dont mean to take this thread off topic. Sorry!
TB90, I'm a nurse and I work along dieticians and exercise physiologists. No scolding here! Like you, I did not find fasting that difficult as it was my natural eating pattern also. I dont really skip breakfast, I just eat it later. Most recommend a minimum of 13 hrs. So my absolute latest to eat is 6pm, breakfast at 9. I still drink water and have my coffee with a splash of skim milk. I buy into to the suggestion that we are sending our bodies mixed messages if we eat then go to bed. We are asking our bodies to digest when our gut should be resting like the rest of our body systems. First to admit I fall off this pattern usually one night on the weekend ( ok. Sometimes 2). I'm consistent Sunday through Thursday. And you are spot on about best practices changing. There are fasting threads here that you could check out too. No more guilt!
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*Nothing* prevents metastasis 100%, not chemo, not endocrine therapy, whatever - nothing.
So, all you can do is look at the research, and make your own decisions.
There is credible, controlled RCT research on diet and exercise and beginning research on supplements. There is credible, controlled RCT research on time restricted eating (phase I). In the same way endocrine therapy or chemotherapy has been shown to reduce risk of recurrence, so have these methods.
So, if you are relying on *science*, the evidence is there.
Again, the goal is *reducing* risk of recurrence, not preventing recurrence, because we still just don't know enough about cancer to guarantee it won't come back.
So, you pick your poison (sotospeak). Take the chemo, or the hormone pills, or do the diet, or the exercise, or the supplements - or do them all or some array that makes sense to you.
For me, the diet, TRE, exercise, and supplements make the most sense. I will likely try the endocrine therapy and hope to be pleasantly surprised, but I will stop it if it reduces my quality of life. I know some who take it without any issue at all, and some who are debilitated by it, and everything in between.
FWIW, for those who are asking in the Phase I trial on TRE (time restricted eating), there was a 30% + reduce in recurrence and a 20%+ reduction in mortality for those who followed the plan. Success in following the plan was considered an 80% adherence rate of not eating for 13 hours (7 pm to 8 am), and the reduction in risk was not correlated with weight loss.
For exercise, as noted above, 150 minutes of moderate exercise (at least 3miles per hour if walking) reduced risk from 40-50%.
Reducing your BMI, again, another drop in risk of recurrence.
The endocrine therapy drops the risk by about 50%.
So, if I can do both TRE and exercise, plus lose weight, I feel confident that will drop my *risk* at least as much the endocrine therapy.
We're all at risk. Even if we never had breast cancer, we are still at risk. You have a 12% chance of breast cancer even if you've never had it.
All you can do is find the path that makes the most sense to you, and then hike it determinedly.
I look forward to hiking along with all of you, whatever your path looks like!
I like the idea that to make sure your path contains joy and happiness too!0 -
I was originally doing a 16-hour fast but since the research I've seen divides between women who fast more than 13 hours and women who fast less, I set 14 as my minimum. I work too late to stop eating as early as I like, but almost always am able to be done eating by 7pm. That would put me eating again at 9 am or later (generally more like 10 or so because of my work schedule). I drink black coffee in the mornings prior to that. And I also don't "skip" breakfast so much as push it back. I saw an interesting study with mice and time-restricted feeding and they found the same health effects even if they allowed the mice to eat whenever they wanted to on the weekends. Who knows if that translates to humans, but it does make me feel a little better if I end up eating late once in a while. And the pattern feels good to me - I don't feel hungry early in the morning. And I'm exercising! I'm slowly building up since nerve damage and ankle surgery put me out of commission for several months. I am doing as whole-food, plant-based (plus seafood) diet as possible. All this may or may not help with lowering my recurrence risk but I do believe it will keep me healthier in general. And of course, I went the allopathic route of surgery/chemo/endocrine therapy - fortunately, I don't have much of a reaction to tamoxifen. And beyond that? Well, I'm trying to live NOW and enjoy it. Planning trips, spending time with people I love, having fun.
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I am loving this thread. It is not at all what it originally set out to be (I think). When first diagnosed, I was so freaked out. Took a long time to get my DCIS dx, but with complicating factors. I researched everything and became so overwhelmed with what to do or not to do that I stopped eating, almost, out is stress. I lost 50 lbs. probable 20 more than I should have. But I was paralyzed. I have regained 25 lbs over two years but continue to be physically active. I walked 10 km in the snow with heavy clothing on today. What helped me regain my perspective, as clearly I lost it, I made a list of my guidelines. Guidelines only as I hate to be controlled. Lol. First of all, ny meat, fish , eggs, etc. had to be humanely raised. Then came organic when I could and locally grown. And minimal amount of ingredients. Once I created my list, I felt better. The new Canada Food Guide almost eliminates dairy, and encourages plant based protein. But I have incorporated back my wine. Don't want to be too perfect
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TB -The thread kind of veered off course, but in an interesting direction. I looked up th Canada Food Guide - they’ve done a better job, I think, than the USDA food guide.
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Wanderweg - I saw my integrative doc today... still holding steady with my plan for several supplements. Wondering if you saw yours?
Also, something I found interesting - I asked him about estrogen tests, and he said with several of the newer AIs they don't help, because they don't actually decrease estrogen, they just take up the estrogen receptors so it can't bind, technically your circulating estrogen amounts would go up, rather than down. Tamoxifen, on the other hand, actually does reduce estrogen amounts. Because I'm post-menopausal, I wouldn't be prescribed tamoxifen because my estrogen is already fairly low.
We'll be looking at other, more natural methods to reduce estrogen, if I turn down the Arimidex.0 -
Karuuna - this is from BCO on Aromatase Inhibitors, there is nothing about taking up estrogen receptors.
Aromatase inhibitors stop the production of estrogen in postmenopausal women. Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.
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