Pinned Thread About How to Lower Recurrence after Chemo
Comments
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I think we triple negatives need a thread that stays at the very top that lists everything we can do to lower recurrance risk after we finish chemo and rads. I worry that I and others will tune out after finishing chemo and then some new treatment will come up and we won't hear about it. I check in here now and then but there is so much to read, I could easily miss something.
I just learned that taking 800 units of D3 daily is recommended. We need a single thread that is continually updated with any new study recommendations for after treatment. So we can stop in once a month and not miss anything.
I do NOT trust my new oncologist (not at Stanford) at all to update me.
Can someone create such a thread that is pinned to the top of the Triple Negatives section?
Here's my mini list. It would be good to include links to the reports but I don't know how to do that.
1) 800 units of D3 per day
2) Keeping your fat intake to only 20% of your daily caloric intake AND losing some weight in the process lowered triple negatives recurrence rates by 45%. THAT ROCKS!!!! That means no substitution to"better" fats, they are all bad for us. Grill lean meat and throw on the seasoning sisters.
3) I just learned that simple exercise of 3.8 hours per week lowered recurrance rates dramatically. (even walking) This was a study result about Triple Negatives specifically. The best result came from doing more than 5 hours per week of strenuous exercise like running. (I put in language about the study way down in this tread)
The expert theorized that both cutting out fat and exercise effected insulin and that that could be what lowered recurrence. Reading that I am going to lower my suger intake was well just in case.
4) They are testing a vaccine especially for triple negatives in Ireland.
Please someone create a thread that stays at the top. This is really so important. And lets all add to this list and add links to studies.
I don't want to miss the silver bullet.
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meggy
Why your signature says you are stage IIIa? If your tumor was 2 cm, it would be stage II.
Did you have positive nodes?
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Yes, I had many possitive nodes but not sure how many because I did chemo before my surgery. They biopsied the obvious one and saw others on ultrasound. I had one left as possitive after chemo, upon surgery (I did not get pathological complete response) so I did more chemo after that. My tumor was actually 2.7 cm but the invasive had spread to a large area of my breast. My oncologist said with over 3 positive nodes they consider it stage III.
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meggy
what does it mean the invasive spread to a large area of breast? did it spread before chemo or post chemo?
Did you have vascular invasion?
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It spread in my breast before chemo..to a large area under the nipple...like a big wedge of cheese. There were signs of vascular invasion on the original pathology report. After chemo there was no more invasive cancer in my breast at all but I remained with one possitive node of just 1 mm. They did also find 2.5 cm of DCIS which they said not to worry about. It never showed up on any scan at all. Glad I did a mastectomy. Sure hope they're right that its nothing to worry about.
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Xexercise: The full report does talk about 3 hours per week exercise being good, but in explains things in further detail. What it comes down to is that i, for example, fyou start doing the 10,000 steps per day regime (you'll need a pedometer) that will go into a very positive way of life for you, and it doesn't matter what your hormonal status is - this is good for all of us. Speaking for myself, I want to get back to weight training in the gym asap but the report says that won't make an extra difference for recurrence purposes.
So the good news is, doing sensible daily exercise in what we all need to do. 3 Hours is the bare minimum girls!
you could look at: www.survivorstraining.org for some stats.
This site has info which gives the full picture:
breastcancer.org/risk/new_research/20050727a
If you haven't done the 10k steps thing, it is quite easy to build up to and not as far as it sounds. You could split into 2 or 3 exercise period per day. If you have usually been sedentary, this is a very do-able way of mocing to a more healthy exercise regime.
For those that want to get into fitness in general, the threads on here that cover that are very good.
Good lucvk all -
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Meggy
If you had only 3 positive nodes and 2.7 cm invasive tumor prior to chemo, it would still be stage IIb. Not stage III. Unless your invasive tumor was bigger, i.e. around 5 or 6 cm.
Post chemo, you had 1mm positive node, that is micromet and your original invasive tumor was completely gone, so that would mean more or less you had complete path response. Right?
By the way, did they test the receptors for your DCIS as well? Usually they consider DCIS being the pre-cursor of invasive. Was your DCIS close to the invasive or in a different area?
My DCIS was ER+ and invasive tumor was 1cm TN incased within the DCIS.
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Hi Meggy, My sister was also stage3 with 2 pos nodes...Her tumor was 2.8 or 2.9 cm (can't remember which) but I do know hers was half the size of her breast (she is a tiny lady) so the docs did surgery first and hten chemo.......
Newalex, of course they will find DCIS with IDC...DCIS is the precursor to IDC and if you do not have DCIS you can be pretty sure you don't have IDC.....At least that is the way it was explained to me....As for the stage 3 according to my onc if your tumor is bigger than 2 cm and you have 2 or more nodes involved but do not have mets then you are stage 3......I don't know where you are gettign your information but I trust my oncologist over things I read on the net.......If the tumor is 5 or 6 cm then some oncologists call this stage 3C...Close to 4 but not by much........Some even consider a tumor that size as stage 4 becaseu usually by the time a tumor is that big then it has surely spread...5 or 6 cm is about the size of a golf ball.......1 cm is the size of a pea........ -
hollyann
Most women dx with invasive do not have DCIS at the same time. Either in that case the DCIS became Invasive very quickly or started with invasive directly. Don't know for sure.
I read once that if finding DCIS and invasive at the same time in the same place, it has better prognosis than pure invasive. Let other ladies to add here what they think.
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Hollyann, that was the way it was described to me also..I had dcis and idc..
Deb
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Actually newalex, yes they do..DCIS is how IDC starts out...Ask your onc.......
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I agree with Hollyann, and that's how my disease unfolded. DCIS then IDC.
very best wishes for everything -
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Yes lets keep this thread on top to get up to date treatment information.
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I agree we need to keep up on new and better ways to stop recurrence. The vaccine trial you referred to is actually going to be done at The Ireland Cancer Center in Ohio. The protocols for the study are not completed yet. I was told by an RN back in April, that it's a lot of red tape and micro-managing wording because it's a trial. She also said participant selection could begin at any time so I should check back weekly.
http://www.eurekalert.org/pub_releases/2008-12/uhoc-icc121208.php
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Thanks meylerjr3 for that link! Is the contact listed, Alicia Reale, the RN that with whom you spoke?
Meggy-great idea for a thread! Thanks for the info ladies. Let's continue to update regularly.
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Meggy,
I so agree. We need to be updated with all the latest and greatest.
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Hi Newalex, I probably had a minimum of 5 positive nodes based on ultrasound (I was told more than 3 nodes is stage III) but it could have been many more. Chemo worked so well that I'll never know the exact count....that's probably for the better.
Does anyone know if there is a specific member who has the power to keep a thread at the top? It doesn't have to be this one, we could start another one but I really think one is needed. I think we all research like crazy when we are doing treatment but after treatment, at some point I just stop reading as much...I think I need to be able to step away for a while yet check back in and not miss something important.
By the way, does anyone know if the vaccine study is taking American girls?
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Meggy,
I am wanting to know about that vaccine study also. I think there is one that is taking american girls here in the US. I am not sure....I will update if I find out something.
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London-Virginia, thank you so much for your comments about exercise. You have inspired me to do better. I realized that by power-walking my kids to school and back in the moring, I've walked 15 minutes, I enter the house, blast my favorite country music and now I will run another 15 minutes. I really haven't even interrupted my day at all and I've already got 1/2 hour done. I repeat the same in the afternoon when I pick the kids up and now I'm power-walking an hour a day. Wow....so little effort with so little interruption of my day. (Plus my butt and thighs are looking great LOL) After reading the information I put in the next entry, I am going to try to get up to running 5 hours a week.
The summary I read before was by the UCSF oncologist that was involved in the low-fat study. He had mentioned that even 3 hours reduced recurrence significantly. I think his point was that every single one of us should be able to squeeze in at least 3 hours a week. London-Virginia, thank you!!! You inspired me to turn that into 5 and soon it will be 6 hours per week with very little effort.
PLEASE someone make this thread stay at the top!
I couldn't find the page with the exercise stats...the link said the page wasn't there. I'm also a bit of a computer idiot..can you help me to read the actual studies.
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Here's some more important info on the low fat and exercise studies. Aparently both are related to triple negative specifically!!!!!!!! Yipee!!!!!!!! If doing this cuts our risk of recurrance to almost half than isn't it like half of us get our own version of Temoxifin or Herceptin that actually works for us? That's amazing. Just eating low fat and exercising can be a cure for half of us that would have had recurrances?
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"The Studies:
Bernstein and her colleagues studied more than 100,000 women over a ten-year span as part of the California Teachers Study . The longer and more strenuously a woman exercised, the bigger the reduction in hormone-negative breast cancer risk, with moderate activity such as brisk walking at least 3.8 hours a week showing significant benefit. The greatest benefit came with more than five hours weekly of strenuous activity such as running.
Roughly 40 percent of the the WINS 2,500 participants followed a diet that kept fat at about 20 percent of their daily calories, an average of 33 grams; 60 percent followed a normal diet, with an average of 51 grams of fat. Cutting dietary fat reduced the risk of recurrence of hormone-receptor-negative by 42 percent after five years. The women, who were all postmenopausal, did not change their activity level; most lost weight"_______
Now, I'm trying to do more running (not just walking) and at least 5 hours a week. That combined with a low fat diet, I feel like my body is becoming inhosbitable to any left over cancer.
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bump
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Meggy,
Sounds good girl....Did you do all this during treatment aslo....I feel so week. Would love to have strength to do this. I do the treadmill sometimes. I was pretty active prior to this whold breast cancer thing....
May God Bless Us
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Angelsabove, I just started exercising a few weeks ago. I started this thread because I had no idea that D3 helped until a few weeks ago and thought "maybe some women don't know about the low fat thing" and since reading the resonses to this thread learned what an impact exercise could make on recurrance. I wish I had known a year ago. Better late than never. I even ate normal fat during chemo...not sure I would have made it through otherwise.
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Another thing to be aware of is that if you are BRCA +, which I am, it doesn't seem to matter what I do as prevention. My genetics decide when they want to express themselves. I was thin before diagnosis, gained 30 pounds during chemo and have since lost it. All I can do is believe I will live a long, healthy life and try to stay this way...
Linda
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Meggy,
Thanks for the response. Yes I need to get busy with that whole exercising issue. Do you know how long after treatment that u start to feel more like you again. You know with energy and everything? Did u take D3 during treatment? I have heard do this and dont do this during treatment. Just curious.
May God Bless Us All
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Angelsabove, during chemo, I didn't really do anything right. I didn't know anything about anything...just chemo. I heard not to take anti-oxidants during chemo because you want the "poison" of chemo to do its thing. I don't know about D3 during chemo...I'd ask your oncologist before taking anything. I remember showing my oncologist a basic women's multivitamin and she said it was OK. They usually contain 400 units of D but maybe not D3 which they said is absorbed more easily.
Also, I read some discussion that natural sunlight is the most effective way to get your D levels up (unless you have a special risk for skin cancer). They were saying that lean, women who jogged had less recurrances...then theorized that perhaps one reason was that such women also had more sun exposure (vitamin D) because of their outdoor lifestyles. So...I've been soaking up a little more sun here and there. They said, eat breakfast or lunch outside to get some sun for vitamin D.
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My oncologist recommended a minimum of 1000 D3 per day in addition to the regular intake from calcium and mulitvitamins. After checking my blood levels of D3 I am on an extra 2000 per day. I have heard of others who are on as much as 4000 per day due to blood levels. I am sticking with the 2000 plus some in my calcium and in my multi vitamin. Get docs to check your D3 level in your blood.
It is harder to make myself take it while going through chemo again, but I am getting much more reliable on it now.
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Aug 30, 2009 09:20 pm positiveaboutnegative wrote:
Meggy:
Thanks for adding the link to my blog. The WINS study on the influence of a low-fat diet on TNBC, I think, does offer great hope to women with this disease--and other forms of hormone-negative. The first link below is to the full study on the low fat diet. The second link is to the National Cancer Institute's article on the study.
http://www.cancer.gov/newscenter/pressreleases/WINSBreastStudy
http://jnci.oxfordjournals.org/cgi/content/full/98/24/1767
The comment about insulin came from an interview I had with Rowan Chlebowsk, the lead researcher in the study. It was something he thought was a factor, but it was not a formal part of the study. Other researchers have mentioned the insulin connection to estrogen-negative cancers as well. I am intrigued by the connection, but so far there is no research out there on it.
Fat, however, is associated with insulin resistance, which is a precursor of diabetes. Processed carbs--like sugar--are also implicated in the incidence of triple negative. Here's what I say about that on my blog:
A diet heavy in simple carbohydrates—sugar, white bread, cakes and cookies—can put a woman at risk of hormone-receptor-negative breast cancer, according to research in the American Journal of Nutrition’s May 2008 issue. French researchers studied the diets of 62,739 postmenopausal women from 1993 to 2002; 1812 of these women eventually were diagnosed with breast cancer. The researchers note that, because simple carbs are rapidly absorbed by the body, they elevate insulin levels, which can be the link to hormone-receptor-negative breast cancer. According the Centers for Disease Control, complex carbohydrates—whole grains, seeds, vegetables and most fruits—are more slowly digested and less likely to increase insulin levels.
I hope all this makes sense.
Pat
www.hormonenegative.blogspot.com
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Mimsi, thank you for that D3 info. Time to get mine checked!
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My Onc said: low fat diet, < alcohol intake, > calcium & Vit. D, excercise may help prevent cancer from returning. After I finished all my treatment I entered a clinical trial that involves bisphosphonates (bone strengthen drugs- Zoledronate, clodronate, or ibandronate) The hope is by strengthening bones it will help the cancer from distal recurrence in the bones.
We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot.
-Eleanor Roosevelt
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