natural girls
Comments
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Sharon, that new rads treatment sounds like a real step in the right direction. Let us know how it goes.
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I definitely agree--it's not easy although really once you've been eating well for a while--you really don't crave the junk and realize how yummy good food is! (And dark chocolate counts, thankfully!) And yes I fall off the wagon occasionally but it really is a little just here and there. I read somewhere that a dr said he had stopped recommending better diet and exercise to patients b/c he knew no one would do it. Isn't that sad? And we are supposed to be "intelligent" life forms!
I was reading about some other disease (diverticulitis I think) and laughed b/c the prevention of it was less processed foods, more veggies and fruits, less meat and more exercise. Doesn't that sound familiar?? It seems that we could conquer or avoid 80-90% of the known diseases if we all stuck to that regime... of course some people still have genetic disposition to certain illness so it's not all preventable.
Maybe that is why they are having trouble getting good studies showing tamox/AIs vs diet and exercise--b/c they have to rely on the participants actually following the regime...
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It is SO true. So many diseases that plague us can be attributed to the "SAD" (standard American diet). I saw a DVD, I think it was called "Raw for 30 days". It was a documentary that followed the story of 5 or 6 people with diabetes. These people were taken out of their environments and brought to The Tree of Life rejuvanation center in Arizona (I think that is where it is). They were put on a strict raw food diet for 30 days. Most of them had a hard time with it, one even left, until they started seeing the results. Most were off of medication within the first week. All lost weight and never felt better. By the end of the 30 days. They all had profound results and most of them were cured of diabetes. Amazing! It makes perfect sense. We know that a horse eats hay. If we fed the horse ice cream, it would get sick and develop disease, maybe die. Any Vet would identify diet as the problem immediately. WHY DON'T DR'S identify diet as a potential problem for us??!!
By the way, there are some great "Raw" cookbooks out there with recipes for amazing desserts. You can make "raw" ice cream that does not include dairy or sugar. All natural fresh ingredients and delicious. You can make "cheesecakes" and other desserts without the guilt. There are really some amazingly creative chefs out there who have made it possible to eat some of our favorite things.
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Deni, that is fascinating, and I totally believe it.!!!!!
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I am definitely NOT soliciting. This is just FYI is you are interested in watching a trailer for the film. It really a testiment to what a profound difference eating mostly raw can make on one's health.
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RE tamoxifen and five years, I remember reading that tamox used to be prescribed indefinitely until they realized after five years the rate of uterine cancer was rising. To my mind, if it's causing uterine cancer after five years, it's not waiting until year five to start causing trouble. Amongst all the reading I've done, there's one point that everyone seems to agree upon -- that cancer takes a loongg time to reach the point of being a tumor. It boggles my mind that anyone could think tamoxifen waits until year five to start being a factor in uterine cancer.
deni, I saw that video you mention. I live in a city with an astronomically high rate of diabetes. It blows my mind that people are willing to sacrifice their health, their limbs, their life to sugar, white flour and fried foods. Dr Cousens has shown with consistency how people can reverse their diabetes, and yet even people I know personally choose unhealthy habits.
As I begin to feel better and better, I contemplate what my next occupation will be. Opening a juice bar is on my mind every day, but I just don't know if it would fly. I don't know if there's enough people in my community to support a business like that. They sure line up for the sno-cones.
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I even wonder if disease is really genetic or is it diet. When we see disease running in families, could it be that they all eat at the same table? For instance, native Americans had no diabetes until they were put on reservations and adopted a European diet. Now it is rampant. They no longer hunt and fish, a natural "work out". In Jane Plant's book, she researched breast cancer and Chinese women. She found their rates of cancer to be very low in China, but equal to others when they lived in Western counties. I use to believe that I was destined to be overweight because all of my grandmothers were. I did not worry, because they all lived well into their 80's. Then I started eating healthy and the weight disappeared. I still have my grandmother, but at 95 she has no memory. It is terrible to see her in such a state, and she is so depressed. I do not want to be like that at 95. I think my diet will also keep my mind alert, as well as balancing those hormones. That is why I am so against all the drugs that inhibit estrogen. Estrogen is essential for a healthy mind. What kind of life would it be to not get breast cancer, but to not even be able to recognize your grandchildren?
I find myself being so judgemental and I feel really guilty. For instance, this weekend I was at a market for several hours and did a lot of people watching. There are just way to many obese people in this country. That is why our health costs are so high. I do not think insurance companies should punish people who are overweight or the government should tax sugar as they are wont to do, but if they would give us discounts for our diligence, maybe more people would have an incentive. Look at how many companies have gotten people to stop smoking with incentives. That is what we need. For me, the incentive is that it prevents recurrance of bc, just as much as any drug-and I feel great to boot!
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Althea-I think a juice bar would be a great idea. What it needs is clever marketing. There is always a line at JambaJuice, although a lot of what they sell is glorified ice cream. If you could market the alternative to Starbucks it would work. We need to convince people that life is not just about stuffing our face. That is what I hope to do with my website too. I have already convinced several friends of mine to change, after they saw what a difference I have made in my life. Imagine if we can all spread the word. Maybe the doctors will even start to believe us.
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One of the medical oncologists I saw told me that actually genetics is a very small portion of your likeliness of getting cancer (around 3% I think he said). He said that what IS genetic is a families way of life and lifestyle. If the whole family eats and lives the same way, they are more likely to get the disease, which makes it appear to be genetic.
When I told my surgeon recently that I was not going to do chemo or radiation and have completely changed my diet and lifestyle, she looked at me like, "you poor thing - you really think that is going to work?" They took an oncotype test to see what my rate of recurrence would be (even though I am ER/PR-). She told me that maybe when the results come back it will convince me that I should do chemo. Not that I would change my approach, but I have been trying to get the results from her office for weeks. I am told that they will send them out in the mail and then I don't receive them. Now I am incredibly curious and being the traditional oncologist cynic that I have become, think that they are hiding the results from me. Wouldn't it be incredible if after pushing chemo on me it turns out that my likelihood of recurrence is low afterall. I cannot wait to find out. And, would that not be the most incredibly unethical behavior from a well-respected major cancer center? I am not accusing them yet because I haven't seen the results. But it just raises an eyebrow as to why is it such a problem for me to see them???
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This is such an interesting conversation, and I totally agree with everyone. What I think is really sad is when you see obese parents buying soft drinks and candy bars and other junk food for their seriously obese children. While you probably can't penalize adults for what they do to their own bodies, I think creating seriously obese 6 year olds should be considered child abuse, and those parents should be required to attend a class on nutrition. It is criminal that they are ruining their childrens' health and limiting many of their future choices.
One good thing I've noticed recently is all the major restaurants now publishing the nutritional content of their meals. Hopefully, that will wake up more people to what they're actually consuming when they go out to eat. It kind of makes me ill just thinking about it.
And deni, that is strange that you haven't gotten the results of your Oncotype-DX if it's in. Do you know for sure if they've received it? Maybe you should call and tell them you'll stop by and pick up a copy? Deanna
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Yes, Deni, I agree with Deanna - call your onc's office again to see if they received it - usually only takes 2 weeks or so. If not, call Genomic directly - their customer service line is (866) ONCOTYPE (866-662-6897). If they cannot give you the results, they can at least confirm they've recieved, tested and reported back to your doctor.
Michele
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Deanna, they have received the results. When I was in to see the surgeon, she told me that she would call me to discuss the results when they came in. According to Genomics, the company that performs that test, they sent the results over to the doctor on July 29. I have spoken to folks in the doctors office twice and was told they would send the results out. I have yet to hear from the surgeon and I have not received the results. It may be completely innocent on their part, I can't say for sure at this point. It is just odd that I have always gotten very quick call backs and test results until now.
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Deni ~ Yes, probably innocent, but it does make you wonder, especially if they've always responded quickly. Do you think maybe your onc wanted to take your results to a tumor board before discussing them to you? Is there any reason why a PA or NP or someone like that couldn't read the results to you over the phone if you got a bit insistent with them since it sounds like they've had them long enough to have gotten them out to you? Deanna
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Deanna-I don't know if they took the results anywhere to discuss them. It is just odd behavior on their part, which I don't understand. We are definitely going to keep pestering them until they give us the results. And, if I for some reason can't get them from the doctor, I will insist that Genomics send a copy since we are, afterall, paying a substantial co-pay for the test. UGH. Very frustrating!
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If worst comes to worst I will!
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Deni, By now I would have arrived in the onc's waiting room and made a fuss. But another approach might be to see if you can get your internist or any other doctor to call your onc and ask to have the results. Alot of doctors give special care when another doctor calls. My internist has been amazingly helpful to me in breaking through the cancer maze. Just a thought.
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It's a good thought. My doctor is in NYC and I am in northern NJ so it is really not all that convenient to take a ride over to the office. But, if I need to do it, I will. The results themselves are not that important to me. I don't think I would change my path regardless of what the results show. What I really want to find out is if they are intentionally being evasive because the results show that maybe the chemo is not likely to help - even though they were pushing it on me because that is their "standard" protocol.
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July 29th is when your onc received them? They should have mailed you a copy that same day. I had my results in less than 2 weeks in my hands.
good luck
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Just read a great article I wanted to share with you:
http://www.jonbarron.org/baseline-health-program/2009-08-17.php
Although not specifically about bc or bc meds, I think the gist of what Jon is saying totally reinforces what many of us feel about the FDA, drug studies, and the long-range implications of some of the drugs that are being prescribed for us. Deanna
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Call Genomics directly. Your Dr may have ordered the test, but they didnt pay for it. You and or your insurance did and you have the rights to the results. I had similar situation with my Gynos office who ordered the core biopsy. no one from their office would call me so i called the radiology office directly who did the test and their radiologist called me right back. Well weeks later after i had already been in for an MRI and my lumpectomy, my gyno calls me to give me my path report from the orig core biopsy. I was like "thank goodness i didnt wait for your call to start treatment." anyways i wish you all lots of luck and an easy week!
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I actually finally received the test today in the mail. I had a feeling if I started talking about it, it would show up - and alas! My husband and I are really not happy about them having done the test to begin with since I have ER- bc. It clearly states on the test "Oncotype DX RT-PCR analysis of ER indicates this specimen is ER-Negative. This clinical experience is for female patients with Stage I/II, N-ER+ breast cancer; it is unknown whether the clinical experience is applicable to this patient." Plus it states on a graph the average rate of distant recurrence at 10 years after 5 years of tamoxifen treatment. There is an ER score on the test that clearly shows that I would have no benefit from tamoxifen. The test shows that my oncotype score is 57. But, that score is useless based on the disclaimers on the test for my type of cancer.
When I had questioned my surgeon about why they wanted the test (considering we will have a large co-payment to pay), at first she was as confused as we were as her nurse ordered the test for the "medical oncologist". When I told her that I was not going to do chemo, she said that maybe having the test done is a good thing as it might persuade me to do chemo when I see the results. But seeing the results does no such thing! The results clearly state that they are inconclusive.
Has anyone gone through something like this before? Does anyone know why they really would have ordered this test? Of course, my cynical mind tells me they wanted to show me high numbers to ensure that I go through with chemo, not taking into account that I might actually question the validity of the numbers. The more I deal with oncologists, the less I trust them!
My husband has access to oncologists where he works and is going to talk to a few people he knows to see what their unbiased opinion about this is. Anyone have any ideas?
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deni ~ That had sort of jumped out at me this a.m. when you had mentioned being ER-. Are you also PR-? How about Her2? And can you share with us or remind us what tx you've had and what type of bc, tumor size, etc?
I can't imagine why your onc would order an invalid test, unless, as you said, she was hoping the high numbers would alarm you and change your thinking. If I was in your position, I think I would want to find a new oncologist -- just for input from one I like and respect, even if I still decided to pursue a natural route.
It's sad that they don't have a test or any comparison data for women who choose alternative tx. Even the Oncotype compares traditional tx vs. no tx, so it's hard to make sense of it you're actively getting holistic tx. Deanna
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Deanna, thanks for that link. It was a very interesting site. I found this in it too, and liked how he said that you need to do everything to prevent cancer because it is mulifaceted:
http://www.jonbarron.org/baseline-health-program/11-20-2006.php
Deni-I read somewhere that the oncotype test itself may be unreliable and too much emphasis is being placed on it to recommend treatment. Wish I could remember where I read that. Maybe you could ask DH to ask the oncs about the reliablility of the test. I refused the onc test because I was dead set against chemo for my low grade tumor, and I was not about to let a test give me one more thing to argue with my doctors about.
I do not doubt the sincerity of oncs. They truly want to save lives. However, litigation threats make it next to impossible for them to not prescribe threatments that are the "standard of care", and going natural is not one of them. That is why some women have reported that they really did not get a lot of flack from their oncs when they refused to use the drugs or chemo. The docs have to tell you to do it, whether they themselves would or not. It is sad that they cannot be more honest because they fear they will be sued.
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Hi Deanna, In addition to the ER-, I am very slightly PR+ (3%) and HER2+ (3+). On the oncotype test, it shows up negative that I would benefit at all from tamox or herceptin, which actually may answer my own question as to why they were a bit evasive in getting the results to me after pushing herceptin on me). My tumor was less than 1 cm x 1.4 cm - no lymph involvement. I have had no treatment other than a lumpectomy and 2 re-excisions - the last one with pathology showing no sign of cancer in the sample taken.
I had asked my surgeon if she thought that I would automatically show higher numbers on the oncotype test because of my type of cancer. She said that it wouldn't, but I wasn't really convinced by her response that she knew this to be true.
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deni ~ In addition to a new onc, if I was in your situation, I think I'd get a second pathology opinion, just to be absolutely sure you know what you're dealing with. Do you know what Grade your bc is? And do you know if your Her2 status was determined by FISH?
As far as the validity or usefulness of the results you got, can you possibly call Genomics and speak with someone there about that? I think they would be in a better position to explain how accurate the test is or isn't for someone with your hormone status. Deanna
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HI Deanna-I've actually had more than one pathology opinion and they all concur. It is Grade 3 and yes, the Her2 was determined by FISH.
My husband works for a large medical company and has access to very experienced oncologists. He is going to bring my results to them to see what their opinion is about the situation. It may be a good idea to call genomics too.
We just watched a documentary called "Crazy Sexy Cancer" which follows a woman diagnosed with Stage IV liver and lung cancer through her journey with cancer. She had 24 tumors in her liver and lungs. There was no treatment option available to her and the doctor told her if the tumors grow at all, they can try chemo but he wouldn't do it otherwise because the benefit would be very small and the damage to her quality of life would be great. She searched for months to try to find some way of helping herself. Nothing was successful. She then went to the Hippocrates center in FL and learned how to eat mostly raw. On her next scan the doctor was thrilled to see that the tumors had not grown and that she was doing very well. It was a very encouraging story. I recommend it. Netflix has it if anyone belongs.
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deni, you might be interested in Kris Carr's blog from February. Well, any month of the year her blog is outstanding, but in February she did a 21-day fast and vitamin C treatments that might be of particular interest to you. I read her first book and loved it. I don't have cable or a dvd player, so haven't seen the documentary, but I've heard it's great. She has an awesome posse of guest bloggers. I've gathered some great information about raw food diet and recipes too at crazysexylife.com.
I found Natalia Rose through her site and I have her book Raw Food Detox Diet. I started drinking watermelon juice in june. I would've started sooner, but she said to juice it rind and all, and I had reservations about how good it would taste. It's absolutely delish. Now I'm using my own rendition of her green lemonade recipe, and it's divine. Believe me, I tried finding my own way to a green juice I like last year and suffered through a lot of combinations that made me grimace. Rose's book says raw food in the title, but it's not completely raw. It's raw for beginners. She's a guest blogger too at crazysezylife. I'll stop now. You'll find plenty of reading to do there.
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Thanks Althea I will definitely check it out!
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I have finally made my way into the Alternatives realm [thanks to Fairy49] but I see a lot of my other buds from Exchange City here as well. I have been reading posts and digesting info for the past six hours...have a question about DIM and/or Myomin....I just want to confirm it is appropriate to be taking one or the other along with Tamoxifen. [BTW: I am post-menopausal - I just chose Tam over an AI] .
Thank you for your wealth of information in this regard!!
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Hi Whippet,
Sorry, I don't know the answer to that question. Welcome. I just came by to post a product I found for people who don't like berry seeds and can still have their berries too:
http://www.brownwoodacres.com/liquid_mixedberry.php
Supposedly the anthocyanins reduces cholesterol at a dose of 360 mgs a day in divided doses, and I'm willing to be the in-house test subject beginning this fall. Too hot here for food deliveries now.
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