natural girls
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Aren't these theoretical "stray cells" microscopic?
Oncs talk about stray cells as if they are there for the finding. They use the "stray cells" theory to persuade us unto overtreating.
I was at a community meeting with an onc yesterday and he was making stuff up as he went along. Why can't they say, "we just don't know" how to locate cancerous cells. And we don't know what the best thing to do with them."
I can understand that we are all desperate for solutions, but oncs exaggerate the size of the enemy and exaggerate the benefit of the treatment.
Tho, to his credit, one surgeon told me your odds are 50/50 no matter what you do.
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I planned my surgery,chemo, wanted the most agresive treatment, I did not have a lump,no high risk,some pain inside my breast ,all tests negative,During my radical masectomy they found a second and larger.
I am 17 years survivor,I work now in one of the best Cancer Center in the USA, and please DO NOT take or do anything "natural" without telling your onco.
I have seen too many that they take for example soy or gingseng and are positive Hormonal and they should not.
R.B.C. Stage 1 invasive carcinoma,tubular[second one]positive hormones,no family history,12 nodes removed all clean.
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How long has the oncotype test been around? I just did a quick read on it, and learned that candidates for the test are early stage er/pr+ node negative. That was me once upon a time but I was never offered an onctype test. They signed me up for chemo immediately, and I had the kind of doctors that 'informed' me of what my treatment would be. There was no discussion of options.
dreaming, some of us have onc nurses who don't bother to write down our list of supplements if it's more than 2 or 3 items. Some us of have doctors that instill no faith in their abilities. Only 6% of medical doctors take any courses in nutritional medicine. It's truly up to us to be our own advocates in this matter.
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Dreaming, you said "I am 17 years survivor,I work now in one of the best Cancer Center in the USA, and please DO NOT take or do anything "natural" without telling your onco."
It's not about whether or not the supplements are natural, it is important for each of your doctors to know about everything you take to avoid duplication or potential interactions. Tylenol can be a very important tool, but if you take a couple for muscle pain, and there is some in your headache medication, and more in your cold pill, and since you aren't feeling well, you sip a glass of wine before bed, you can find yourself waking up in the hospital in liver failure.
I always bring a printout of all my current medications and supplements to my onc appointments, and always have that information including dosages in the ICE listing on my cell phone so paramedics and emergency room personnel would have that information in an emergency. Not a bad idea for anybody who takes anything other than food, not just natural supplements.
Your pharmacy should also have that information.
It is not just the natural supplements that can cause interactions, but it seems like the doctors are less familiar with them, so you may need to do the legwork on potential interactions for them.
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Dreaming,
Our oncs know nothing about supplements or we wouldn't have this group.
I wish people would stop writing to this thread and telling us to check with the onc police!
And dreaming, there is no published evidence on ginseng and humun breast cancer growth so you might take back to your oncs and tell them they need to spend a little more time reading about the so-called phytoestrogens.
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Hey ladies! Has anyone heard anything about Essiac? It is usually tea but it also comes in pill form.
God Bless Us All
Patty
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Grace,
I think my brain is going to explode. I looked at the onco test site you posted. To do the test, it will cost $3,400+. How much does chemo cost? Ok, the pet scan is out. Yet that's a pretty good diagnostic tool for therapy decisions. It does have its drawbacks. That still would be better than having to pay for chemo that isn't needed. And people pay in a lot of ways. You're right, if chemo does the entire body, then why do rads? Oh please, what they must think of us. We're dumb.
I will take that test, my husband had a meeting to go to and when he returns I'll have him fix the screen.
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Rads has no survival benefit. It only prevents a small percentage of local recurrence within the same breast over five years. It also damages your cardiovascular system so you may die earlier of a heart attack. I think they may stop recommending it to women over 70 since they are at higher risk for cardio stuff. That came out at a conference.
Nobody dies of local recurrence, they die of mets. So if you are thinking about preventing mets, you might want to skip rads.
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Dreaming and Pat's Mom, I no longer see any onc's. I gave up on them when they refused to help me when I refused to take drugs. And since I am not taking any drugs for them to monitor me about, I see no reason to see them. Waste of time and money in my opinion. They need to see you to worry about drug interactions so if one is not taking any drugs, what is the purpose?
I think I read somewhere , when I was doing oncotype research that it's results are overrated. I think the premise was that it is not all that reliable and is just a big money maker for the tester.
Grace-love the quotes and your cute little graphics! Very cheery!
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Courage is not the absence of fear, but rather the judgment that something else is more important than fear.
- Ambrose Redmoon
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Patty,
No one knows the true formula that Caisse invented when she was using her tea on people. As the story goes, she wouldn't give the formula to the research hospitals to test on subjects (mice). If no one knows the exact formula, then how can they be selling the tea today and saying it benefits anyone?
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Grace,
I took the test:
Classification and Stage
T1cN0(pNX)M0
Stage: I
Cancer Death Rate
15-year Kaplan-Meier Cancer Death Rate: 12%
Impact on Life Expectancy- A group of women of this age who did not have breast cancer would have an average life expectancy of 25.7 years.
- In the absence of adjuvant therapy, cancer would cause that average life expectancy to be shortened by 3.9 years.
• The adjuvant therapy selected may be expected to extend that expectancy by 1.2 years, or 449 days.
I put in chemo and I'd get to live another 200 days. That's if I survived it in the first place.
I did put in an AI, so you'll have to put in tamox to see if our numbers are close.
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Thanks Rosemary, good to know. The websites sound like they had her exact recipe
.Patty
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Grace, I think your surgeon was giving you absolute statistics (the correct way), but your onc was giving you relative stats, there is such a huge difference, I get really p.o'd in the way "they" deliver the stats. One of my clients works for Novartis, she is a Doctor, I was asking her about Zometa, as they are spouting 50% risk reduction for recurrance etc etc, so I asked her point blank, is that absolute or relative statistics, her face was a picture! She smiled and said, relative, the absolute risk reduction was actually 5%, are you flippin kidding me!! So when we are offered numbers like 50 and 60% its ridiculous and not correct. She is a very cool lady, and seemed a little embarassed herself that the numbers out there are very misleading.
Anom, I burst out laughing at your post, I am still laughing "making stuff up as he went along"!! LOL!!!
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Hi Everyone,
~Fairy~ I think my surgeon was giving me a heads up. She is a pretty straight shooter amd umless she is trying to win a Golden Globe, she seems to genuinely care
~Rosemary~ Yep, the oncotype is pricey but my insurance will pay for it. I was outraged when the Onc said she did not want to use resources if I was not going to do chemo. I wonder how many of those resources she would use if she had bc?
Ok, here are mine also.
Breast Cancer Treatment Outcome Calculator
Factors affecting non-cancer lethality
Age: 48
Factors affecting cancer lethality
Tumor Diameter (cm): 1.5
# of Positive Nodes: 0
ER Status:+PR Status:+
HER2 Status:-
Histological Type: Grade: 2
Therapy options
Hormonal therapy: Tamoxifen
Chemo-therapy: CMF-Like
Reduction in death: 0.524:Mine - Classification and Stage
T1cN0(pNX)M0
Stage: IYours - Classification and Stage
T1cN0(pNX)M0
Stage: I
Mine - Cancer Death Rate
15-year Kaplan-Meier Cancer Death Rate: 11%Yours - Cancer Death Rate
15-year Kaplan-Meier Cancer Death Rate: 12%
Impact on Life ExpectancyMine - A group of women of this age who did not have breast cancer would have an average life expectancy of 34.6 years.
Yours - A group of women of this age who did not have breast cancer would have an average life expectancy of 25.7 years.
Mine - In the absence of adjuvant therapy, cancer would cause that average life expectancy to be shortened by 4.8 years.
Yours - In the absence of adjuvant therapy, cancer would cause that average life expectancy to be shortened by 3.9 years.
Mine - The adjuvant therapy selected may be expected to extend that expectancy by 2.5 years, or 924 days.
Yours - The adjuvant therapy selected may be expected to extend that expectancy by 1.2 years, or 449 days.
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fairy,
Great example how the medical industry uses numbers number to sell by building fear. Research the facts behind the brac test. Until we test large amounts of the general population how do we know who carries this and why?
Flalady
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What do we do when we cannot see our onc? He will not even talk to me, because I do not want to take the Fermara or the A"s Someone needs to monitor us. I did read that by drinking a glass of Welchs concord grape juice will lower are estrogen by 50%. I checked into a natural doctor, and cannot afford it. The only Doc, I have left is my surgeon, and he blank told me that diet and exercise will not help. He also thinks that I'm nuts not to take the hormone pills. They are the ones that got me in this mess,Help"I get so tired of all the worry about it coming back, I can hardly function, I'm moody, get depressed, sometimes I cannot stand myself. So I decided to go back to work, do all I can to forget this dread bc. There must be life after this. Sorry to vent girls, I'm just in a not so good mood. Sounds like you all have a plan, that is wonderful. God Bless you all
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Grace, my apologies, I meant the Onc with the stats not the surgeon, my error
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Oh Fairy...I knew what you meant...My Surgeon is wonderful, the Onc is a bully.
Thanks for caring..
As always,Grace
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Well Grace,
The difference is the age. I agree, if it was your Dr. having to go through this, she would use every available testing out there. You need a new Dr. She could have worked with you about the test you want done. What skin is off her nose if your insurance is willing to pay for it?
Smallworld,
You might have your hormone meds mixed up a bit there. It was an HRT that brought you into this mess, but the AI or tamoxifen will keep you from either making or it will block estrogen. The grape juice will help but there's an entire list of foods to eat, plus vitamins. There just isn't enough time in the day to eat all this stuff. Sometimes It's easier to just take the AI.
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Hi all!
You girls have covered so much valuable info, I smiled the whole time I read about your delimma Grace. I had the same cancer just age 43 at dx. I remeber going to adjuvant and plugging in my info too. and I had slighly higher percents due to age as well. but as far as the oncotype is concerned you have every right to get it done. My surgeon told me last year when I was diagnosed that it was of great value and he had to work with the oncologist at first to encourage them to have the test done. My surgeon did the BRAC test, because if positive he would have encouraged mastectomy. but he couldn't do the Oncotype DX, because it was just to help decide about chemo which was the onc. 's area of expertise. but my insurance started covering the cost a couple of months after I was diagnosed....BCBS. YOur insurance company would want you to avoid chemo if it didn't benefit you....and your onc is just absurd....sounds like a money benefit to that onc....chemo has many side effects and extrememly costly.....
Smallworld, i was afraid my onc wouldn't follow me too, but he told me he would se me every 6 months and the surgeon will see me every 6 months...so I'm being monitored every 3 months....but the onc did tell me he wasn't sure if checking would catch another cancer early....but I found the the first lump....and we girls know our bodies best. self breast exam is our number one help in catching this disease....so there are oncologist and surgeons who will see and monitor you.....and trully should....refusing to do so is uncaring and unprofessional. maybe you can get a new onc....
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Fairy, that is a great story about asking the doctor about relative risk. I'm impressed that she actually knew there was a distinction.
It is quite shocking that they always give these 50% 0r 40% "benefit" numbers. You're right! As soon as you hear a number that is larger than the single digits, we know it's relative risk and it a total MISREPRESENTATION of the benefit.
My husband read a book on statistics. It raises the question, why do they even measure relative risk?
Apparently, it is only used to persuade people to do something.
Doesn't this seem unethical to you? A big organization such as National Breast Cancer Coalition should be able to whistle-blow on this.
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Grace, thank you, you are so gracious! and I LOVED the hug!!
Anom, I think its a crime that the bogus benefit numbers are out there, and before this whole BC thing, I wouldn't have questioned it either. I am a little terrified to be quite honest, the general population believes the hype of so called "wonder drugs", only to find out years later how friggin dangerous they are and its like oops! sorry! Case in point, this morning the FDA announced they are urging a ban on vidodin and something else, and limiting dosages on tylenol...really?? its taken this long!!
I think I have posted this before, but this is a great explanation of relative and absolute stats, I wish everyone in the world could read this,
Which drug would you rather take? One that reduces your risk of cancer by 50 percent, or another drug that only eliminates cancer in one out of 100 people? Most people would choose the drug that reduces their risk of cancer by 50 percent, but the fact is, both of these numbers refer to the same drug. They're just two different ways of looking at the same statistic. One way is called relative risk; the other way is absolute risk.
Here's how it works: Let's say that in a trial involving 100 people, two people would normally get breast cancer during the trial duration, but when all 100 people are put on the drug, only one person gets breast cancer, meaning the reduction of breast cancer is one person out of 100. Yet the pharmaceutical industry will exclaim that the relative risk reduction is 50 percent because one is 50 percent of two. In other words, the risk is cut in half from a relative point of view.
The headlines promoting this drug, therefore, will always talk about the relative risk -- "A whopping 50 percent reduction in risk!" -- and these headlines will be parroted by the mainstream press, medical journals, the FDA, doctors and drug marketing reps who are always pushing and exaggerating the supposed benefits of their drugs while minimizing their risks. Because, you see, even though this drug may help one out of 100 people, its side effects create increased risks to all 100 people. Everyone suffers some harm from the potential side effects of the drug, even if that harm is not immediately evident. Yet only one out of 100 people was actually helped by the drug.
When you look at drug claims, especially new miracle-sounding claims on drugs like Herceptin, be aware that these statistics are routinely given as relative statistics, not absolute. The numbers are distorted to make the drugs look more effective than they really are. Herceptin, for example, produced only a 0.6% absolute reduction in breast cancer risk, yet the medical hucksters pushing this drug are wildly screaming about it being a "breast cancer cure!" and demanding that practically all breast cancer patients be immediately put on it. Yet it's not even effective on one person out of a hundred. See my Herceptin Hype article for more details.
Reverse the perspective for natural treatments
At the same time, when conventional medicine promoters want to discredit a natural substance, an herbal remedy or the effects of nutrition on health, they always talk about absolute risk. If taking green tea supplements reduce the risk of cancer by that same 50 percent, eliminating cancer in one out of 100 patients, the news about that supplement would be something like this: "Green tea doesn't work. Only helps one out of 100 patients."
In fact, a study comparing some anti-cancer drug with green tea might report: "New breakthrough drug reduces cancer risk by 50 percent! Green tea only helps one out of 100."
It's the old joke about an Olympic race between the United States and the old Soviet Union. In the race, there were only two participants. The Soviet runner came in first, the U.S. runner came in second, but the U.S. newspapers reported, "U.S. Wins Silver Medal, Soviet Union Comes In Next to Last."
Now you know how drug companies, the FDA, the popular press and many doctors lie with this numerical shell game. It's a clever way to promote the minuscule benefits of pharmaceuticals while discrediting the enormous healing effects of natural remedies.
Now, do you want to hear some real statistics on cancer? I'll share a few. Out of every 100 women who might get breast cancer, 50 of them can avoid breast cancer by simply getting adequate levels of vitamin D in their body, and that's available free of charge through sensible exposure to natural sunlight, which produces vitamin D. This vitamin, all by itself, reduces relative cancer risk by 50 percent, which is better than any prescription drug that has ever been invented by any drug company in the world.
Combine that with green tea, and your prevention of breast cancer gets even stronger. Even the World Health Organization says that 70 percent of all cancers are preventable, and in my view, that number is conservative, because if you combine sunlight therapy and green tea with anti-cancer herbs, anti-cancer foods such as garlic, onions, raw broccoli and raw sprouts, plus some rainforest herbs that are well-known for inhibiting the growth of cancer cells, then you can boost your cancer prevention success to well over 90 percent.
There's nothing in the world of pharmaceutical medicine that even comes close. Yet the only thing you'll ever hear from the drug company-controlled mainstream media, medical journals, the FDA and most old-school doctors is that natural remedies are useless, but prescription drugs have all been scientifically proven. Sure they have, if you fall for the relative risk gimmick and can't do basic math.
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Hey Fairy-Loved that summary! I want to use it on my new site. Do you have a link to it? We are working on it now. I am so excited to finally get it going!
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Vivre, here you go!! Let me know when you are up, I can't wait!!
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Fairy - you are amazing... thank you for the explanation of relative vs. absolute risk. I am so confused about the benefit of Tamoxifen. I stopped for a while. But after my onc appt, I went back on it. Of course, it wasn't just him that convinced me... he found another lump that day and I'm scared. Going through the rounds of mammo, ultrasound, etc right now.
Rosemary, Grace, Spring - you all make me laugh... you are so knowledgeable, and I love that you stand up to your docs. I was afraid to stand up to mine, so I just did my thing with the supplements and the eating plan and never told him. The funny thing is that he was amazed at how well the chemo worked and how easily I sailed through it. (There was no question about whether I would do chemo - my tumor was visibly getting larger from week to week and a PET showed cancer in the lymph nodes). By the time I had surgery, the nodes were completely clean and the tumor, mostly gone - the doctors were amazed. I have to say though, that my onc was pretty reasonable about listening to what I wanted (except when it came to his admonitions NOT to take any supplements) - he (and my surgeon followed my wishes to do a sentinal node biopsy instead of the full disection that normally would have been done in a case like mine where I definitely had node involvement. I really feel that my nutritional regimen worked hand-in-hand WITH the chemo, not against it.
I tried to use that Adjuvent calculator webpage, but don't know which of those things was my chemo regimen - I just guessed. It was confusing.
By the way girls, does anyone know what the absolute risk is with and without Tamoxifen? I am so torn - I hate the stuff. My onc says that I may like Arimidex better, but I absolutely refuse to take that.
I'll know by next week whether I need another biopsy. (sigh)
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sh.t munchy, I am so sorry you have to go through all of this again........I guess you didn't have an oncotype DX test done because of the nodes right? What did the onc say your risk of recurrance was with tamox and without tamox?
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there are several reasons why some people are not candidates for the oncotype test. i wasn't able to take it because i'm triple negative.
<<There are too many breast cancer tumor markers to review here, which is why the ASCO has developed a patient guide, which is available in a PDF format online. But there is one new type of test that the ASCO has now included in their guidelines as being officially recommended in certain situations. The test is called Oncotype DX and it is made by a company called Genomic Health. The test is only appropriate for women whose cancers are stage I or II, are ER-positive, do not have positive lymph nodes (no cancer spread to lymph glands), and they are scheduled to be treated with tamoxifen (other types of breast cancer are being studied). The reason that the test is important is that it helps determine the chance that the cancer will come back, recur, after the initial treatment. These cancers are at an early stage and the issue is whether these women need to be treated with chemotherapy or not. If there was a high likelihood your cancer would recur, enduring chemotherapy to prevent that recurrence would probably be a good idea. If there was a low likelihood that your cancer would recur, there would be no need to suffer through the chemotherapy because, in your case, it would be of no value.<<
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Following on DDLATT, I wasn't a candidate for Octype test either, even though I had clear nodes, I had a large lump. It seems like it's for ER+ and very small lumps, no nodes.
Munchy, sorry! Friggin C is such a beast...
Lorraine, drinking green tea at the moment!!! LOL. I wonder how much I am reducing my risk... : )
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