natural girls
Comments
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Firni,
We are not brave at all.
We are informed.
We would be brave if we took the conventional path we were offered without researching it.
Do people really believe the conventional road provides more guarantees? The conventional route is theoretical, not actual.
xx
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Hi Rosemary44,
I really don't know why the doctor recommended tamoxifen for me. When I asked her, she said, "well, it will probably have little to no affect, but we may want to explore it anyway." I couldn't believe what I heard! Am I that much of a cash cow that toxic treatments are recommended just for the heck of it! Needless to say, I will not be seeing this doctor again. She also recommended an oncotype test for me too. From what I have read, this test is only for ER/PR+ cancers as well. Does anyone know why this test might be requested for ER/PR-?
Thanks!
Deni63
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Hi Smallworld,
So many doctors are jerks and make us feel belittled. When, the fact is, if we do our research, quite often we can become the most important advocate for our own treatment. The oncologist I saw had no idea about nutrition or diet and was very dismissive of how I want to handle my treatment. I am seeing a good naturopath who is guiding me in my treatments. And, believe it or not, my insurance covers 70% of my treatments. Have you looked into whether or not you may be covered? I was going to go this route no matter what and worry about paying later (somehow, someway!) - my health is the most important factor here and if I don't have it, I really don't have anything else! So, it was a pleasant and very welcomed surprise to find that insurance does cover a large part of this.
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Hi Firni,
Isn't it awful how doctors are so desensitized and treat us as though we are all the same? And, treat us as though telling us we have cancer is the same as telling us we have a hang nail. I am not seeing the gyno who so elaquently delivered to me the message that changed my life. She was cold and uncaring. Who needs that??!! My diet was not horrible before, but did need a lot of changing! And, I needed to eliminate a lot. I honestly don't think I could have made the changes I needed to if it were not for my diagnosis. It was the shot in the arm that I needed. It makes it so easy for me to stay on course. When I look at dairy or sugar or refined foods now, they don't look the same to me. They look like the poison that will end my life if I don't take charge. If I am going to do things this way, I have to stay on track or I may as well be doing nothing at all.
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Anomdenet,
That is a great point. The conventional route is certainly not a guarantee that you will be cured. When the oncologist gave me stats on recurrence rates, she said that I will improve my chances of not having a recurrence by 50% if I have chemo. I asked her 50% of what?? She said, that it was 50% of the 30% who actually had no recurrence. So the reality is - the chemo would give me a 15% assurance that I would not have a recurrence! That is far off from 50%! You have to be so informed and so careful about reading statistics. They are very misleading - often purposefully - to make things look better than they really are. I can cut my chance of recurrance by 31% by changing my diet (religiously) - aren't those better odds??
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Anomdenet,
That is a great point. The conventional route is certainly not a guarantee that you will be cured. When the oncologist gave me stats on recurrance rates. She said that I will improve my chances of not having a recurrance by 50% if I have chemo. I asked her 50% of what?? She said, that it was 50% of the 30% who actually had no recurrance. So the reality is - the chemo would give me a 15% guarantee that I would not have a recurrance! You have to be so informed and so careful about reading statistics. They are very misleading - often purposefully - to make things look better than they really are. I can cut my chance of recurrance by 31% by changing my diet (religiously) - aren't those better odds??
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I have to throw in my two cents, Deni, just to give you a different perspective. First off, I am so sorry your drs are jerks. I had (am having) a good experience with mine--supportive and answer all questions honestly. However the good news is that there is so much info (from reputable sources) on the internet--also there are easy ways to find drs in your area. Second and third opinions are so important especially when you are getting a good feeling of cooperation with your first dr.
I applaud your commitment to trying a natural route. However I would urge you to do a lot of research on both standards of care and alternative options. You can also choose to do complimentary treatments which combine aspects of both conventional and alternative treatments. Someone said 'the conventional route is theoretical not actual' --I don't find that to be true. There have been enormous amounts of studies on treatments like chemo, radiation and tamoxifen over long periods of time. To say that they haven't been proven to reduce risk of recurrence in many people (not everyone) is just not accurate. And no dr is going to tell you that any treatment is a guarantee. Now if you want to not take conventional medication or treatments, that is of course everyone's option. I would just urge you to research before making a decision. Cancer is nothing to mess around with.
I do find that the dr prescribing tamoxifen for an ER- tumor is very odd (i.e., crazy).
Good luck! By the way, I think changing to a healthy diet is always a good option!
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Hi Allie,
Please don't get me wrong. No one treatment is right for everyone. That is exactly one of the problems with conventional treatments. They are cookie cutter for huge groups of people. Not individualized. I have done lots of research and continue to research my situation and it's implications and risks. I have gotten several opinions from several oncologists. For me, this path is without question the right one. It is certainly not for everyone. I would encourage everyone who is given a diagnosis of cancer to research your treatment options as much as possible. There are options! No one else is going to take care of you the way that you can. And, most importantly, you have to follow your heart and your gut. You need to be dedicated and certain of the path you want to take.
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Hi, deni ~ As you've said, we each have to make our own decisions about treatment options, but I'm always concerned when women with stats that indicate a more aggressive bc (Her+, Grade 3, for example) opt to go totally non-traditional. I hated doing chemo. I've never taken any meds other than homeopaethic, so chemo was totally against everything I've ever believed about my body's ability to heal itself. It took me weeks and multiple oncs to come around to deciding it was best for me due to my type of bc, grade and 1 pos. node, and even then, it wasn't until I found myself at a large university medical center where they have a whole complementary medicine department and practice an integrative approach, that I felt comfortable enough to follow their recommendation, because I knew they understood and valued the complementary modalities as well.
As a natural girl, I'm not trying to cast doubt on your decision in any way. We each have to do what is right for us, and I truly admire your decisiveness. In my case, I remember thinking that if a world-class athlete like Lance Amstrong, who has to be totally in touch with his body, could decide he needed chemo, I should at least try to keep an open mind about it.
On the other hand, I was having a real heart-to-heart discussion with my PCP a few days ago about not being on an A/I or Tamox, which has her very concerned. And, in that case, I was able to get her to admit that she doesn't know if her approach is any better than my natural one. So, because I don't believe it is, I am totally committed to a natural approach from here on out.
I guess all I'm saying is, I hope that you thoroughly understand your particular bc, and especially how herceptin (which I believe you're also ruling out by not having chemo) may or may not benefit you. Deanna
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Hi Deanna,
Thanks for your kind words. You know it is such an agonizing decision we all have to make. I went through weeks of hell trying to sort it all out and become as informed as possible about what would work for me. And still, there is no guarantee. I do know that when I finally made my decision to follow my particular path, I felt a great deal of peace. I don't know if this will work. I don't know if anything will. None of us do. As of today, as of my progress to date, this path seems to be working. Am I ruling out the possibility that if things take an unexpected turn that I will shun other options available - absolutely not! But for now, as of today, I am committed to the path I have chosen, 100%. That is all that I can do at this point. I just want to be at peace and feel good about my decision. I wish we didn't have to deal with any of this and could just go on living in the peaceful bliss I had no idea I was living until I was diagnosed. But there is no way to go back to that place. In a way, this whole experience has made me stronger and made me realize how much fight I have in my soul. How much I will not give up! Let's hope we all heal and go on to live long, healthy, fulfilling lives. I know that I appreciate every day more than I ever did. Maybe that, in a funny way, is a gift.
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dlb,
Lance Armstong had testicular cancer which is one of the easiest cancers to treat and has a great success rate with chemo. Breast cancer is completely different. It has a very poor track record with chemo. Any reputable doc will tell you the survival advantage is less than 5%.
Deni, you are a smart one! To know he was giving you relative risk stats with the 50%. Also, the 15% isn't accurate either. The doc still isn't factoring in absolute survival stats, meaning your chances of chemo related death (e.g., heart attack) was deleted from the calculations.
No chemo gives 15% survival for "all cause mortality." If somebody tells you that, they are flat-out lying.
Oops, slipped off the soapmbox.
xx
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Amondenet,
Another question I have is why is ER/PR-, HER2+ considered to be "more aggressive"? From what my drs. have told me and from what I have read, the major difference is that there are less treatment options available to this type of cancer, making it seem more aggressive, when in fact, it isn't really. Now with Herceptin, this may have changed the playing field. But no treatment is without serious risks and side effects. If I can avoid them, I will! To me, those treatments are a last resort. Try natural first, if that doesn't work, weigh the other options for their benefit/risk factors and then decide. Would you have any idea why my doctor wants to oncotype me? From what I have read, oncotyping is only for ER/PR+ cancer.
Thanks, Deni
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Ivorymom! You made me laugh out loud!
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Hello Everyone,
I need some advice from you natural ladies.
I am 65 and was diagnosed by BC on May 1st 2009.Started as a DCIS and after 1st surgery turned out that they found a 3mm IDC in the mix.Second lumpectomy followed with SNB biopsy and got clear margins and negative nodes.
I am Stage Ia, negative nodes,ER+( 90%+) PR+(90% +) and Her2- NEGATIVE
My ONCOTYPE Dx is PENDING...will have it by tuesday I was told my Genomics( they were very kind to me)
I am being treated at Memorial Sloane in NYC and I know people say they the best...who knows who is best.. I think the BEST is not to have the disease.
I was told that I need to see a medical oncologist and will see her on tuesday.I was also told that radiation and arimidex most likely to follow.I am in good health otherwise normal weight and walk 1 hour daily (fast) I never had any surgeries and have annual check ups- cholesterol,gyno,colonoscopy every 3 years..stress test 2 years,bone density 2 years,chest x ray every year or 2 years depending the dr's recommendation ad of course mammogram every year that is how my BC was found.
I am concerned by all the radiation side effects and wonder if I could avoid it and arimidex has side effect as well..thinking of checking with another onco as well no matter what she says on tuesday.
I wonder if anyone went with no radiation???with similar diagnosis?
Thank you,
Warm regards to all natural girls...
Lizzy
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Hi Lizzy,
You should ALWAYS get a second opinion, no matter what. I went to Sloane in NYC as well. I can tell you what my surgeon told me - Sloane recommends radiation and a follow up treatment (a chemo drug) 100% of the time. There are other options available. You should definitely do your research and get a second or even third opinion. You have to feel comfortable with whatever treatment you choose. I live near you in NJ. If you need a recommendation for a naturopath or an integrative oncologist, please let me know.
Best of luck! Deni
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I few pages back, some posters were asking about sparkling water, seltzer, and club soda. I, too, have switched from sodas to seltzer and thought I was drinking healthy. But, when I was at my onc a few weeks back, one of the nurses said I wasn't hydrated enough and I told him that I just had lunch with a big glass of seltzer. He said that it was just as bad as soda and not good for hydration. I thought that seltzer was made the old fashioned way, by forcing compressed air into water. But, when I looked at the labels, it does say "carbonated water" which is made with sodium bicarbinate. So, now I'm trying to wean myself off the seltzer and just stick to filtered water.
Anyone know about this?
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Lizzy, I went to a Dr. at the U. of Arkansas and had Radio Frequency Ablation at the tumor site instead of having radiation. It is a surgical procedure as was the lumpectomy but it is a one-day, one-time procedure that can avoid radiation.
It is a clinical study...you have to be over 50, a non-lobular tumor, hormone-receptor positive, and less than a grade 3 tumor.
I traveled to Arkansas from the East Coast two years ago to have the procedure.
Insurance may not cover it if it isnt done during the lumpectomy, but the charges are really not that exorbitant. PM me if you want more info.
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anomdenet ~ I thought it was obvious that I was not comparing testicular and breast cancer when I mentioned Lance Amstrong, but more trying to make the point that even world class athletes who have an extreme need to keep their bodies functioning at a high level can and do get through chemo just fine, when it's advisable. Also, we now have a new, third generation of chemo drugs for bc, which hopefully will prove to be more effective and less dangerous than previous chemo regimens (specifically Adriamycin), upon which the existing stats are based. And, personally, I think 5% is significant, especially when one's bc dx includes some of the higher reoccurence risk factors.
And Deni, when you say "try natural first, and if that doesn't work...," I'm not sure what you mean. How will you measure or decide if it's working?
I hope I don't sound argumentive. That really isn't my intention. Deni -- please just think of it as someone who is as pro-natural health as you are playing devil's advocate, just to be sure you've covered all your bases. Deanna
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LIzzy, sorry, I just read that your tumor was a gr 3...so that might disqualify you from the RFA clinical trial.
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Hi Deanna,
I appreciate your concern and thank you for playing Devil's Advocate. What I mean when I say that for me, trying natural first is the way to go is that I am being treated with alternative treatments (vitamin c drips, IV B17, nutrition and supplements). I am monitoring my condition very closely with various blood and urine tests. So far, things are moving in the right direction. If this changes and my condition does not continue to improve or worsens, I will certainly re-evaluate my approach. I just don't want to expose myself to the harsh toxic chemicals and radiation if it is not necessary to do so. Does that make sense?
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Deni-
I totally agree with you, 100%. I am on the exact same path as you...except that I didn't learn about nutrition until after I had had a double mastectomy. I listened to the doctors and it was the worst mistake I ever made in my life. I sooo wish that I had tried the diet change first. I just was so scared and I didn't take time to educate myself first. The doctors told me to stay off the internet. I figured that the doctors knew best. What a fool I was!! Now I will never know if the diet would have cured me. I live with the regret and doubt everyday and it is so emotionally painful. I never felt (in my gut) that the mastectomy was the right decision.
My friend and I were talking about cheese today. She said that she didn't think she could ever give it up. I told her that (in my mind) it is poison to me.
Good luck to you. Please keep us posted about your success with diet.
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I think some of you gals have been reading my mind. I guess it is reasuring that we are not alone. Baywatcher, my doctors kept telling me to stop reading too. The more they chastised, the more I read. LOL They were so adament I started thinking, what are they hiding? I think they knew I was going to continue to question and they did not want to be bothered with the answering. I also think they have big egos. I had so much remorse about doing rads. To this day I wish I had not because I fear the toxic effects, but I have finally come to terms with it, and let go of the anger. However, if I had let them talk me into chemo, when I was stage 1 with clear margins, I would have probably sued! The truth is, we all need to follow our instincts. No matter what path we take, we need to believe it is the right choice. There is a placebo effect. I felt that arimidex would kill me. I feel that diet and nutrition make me healthier. For me, this is the best choice. Believing in our choice is essential. There is a mind and body connection.
As for the cheese. I still have a little now and then, I just try to get the hormone/antibiotic free stuff, which is fortunately becoming easier to find as more farmers go organic.
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Hi Deni,
You asked if people have tried alt. routes to way in. I just joined this site last week and mentioned IPT. I want to elaborate on 2 things now. I am formulating an email to all the women in my life especially my two sisters on point #1 and that is the connection I made when I started reading the threads on this site. 3 years ago I had a physical and the doc. found a lump on my thyroid which was prob. an enlarged thyroid. I went to endo. for needle biop. and it was neg. for cancer A but inconclusive for cancer B. Had to have surgery, remove one lobe and it turned out to be negative. Now i realize the strong connection between hypothyroidism and BC. It would have been great if the endo. had said, "Gee we should check your iodine levels" I have been on cynthroid ever since but feel this is a plausible connection to my bc. I now want all women I know to ask their docs during a physical to request to be tested for iodine levels and Vitamin D levels.
#2 I did research 6 years ago on Insulin Potentiation Therapy when my mom had colon cancer. I was able to brush up fast when I got my diag. in Dec. I met with two conven. onc's locally in Richmond and with Natural Horizons in Fairfax,VA to compare. After some soul searching I opted to go with IPT. I also had 4 vials of blood drawn at the center and sent to a lab in Greece following my mastectomy but prior to starting chemo. They isolated my cancer cells, grew them and tested about 20 chemo drugs and 20 supplements on my cells. As a result, the report came back with 3 effective chemo drugs(one typically used and 2 not usually used) and 4 effective supplements on my cancer. One onc. said, without reading my report that that research was going on in this country but they did not agree yet if they were effectively isolating your cancer cells. I had faith in those results and received all 3 drugs, once a week for 10 weeks @ 20% of normal strength. My bloodwork was excellent all 10 weeks, I did not devastate my immune system and I did not lose my hair. The reason you can receive so low a dose is because they lower your blood sugar level quite low and then "push" in the chemo with glucose so it is a targeted approach because cancer cells love sugar and your cells temporarily use other sources of energy for that short period that your blood sugar was lowered. The IPT method is used for some other diseases besides cancer and was discovered/invented in Mexico over 60 years ago. Every state has only one or 2 docs that offer it and I can offer a poss. explanation for why that is but most of you are aware already of $/power struggles. I did have a petscan 3 weeks after my chemo. which was my only one so far and all was good. I sit down with two Naturopaths this week on Mon and Tues. to discuss alt. options other than Tamoxifen. One caveat about my chemo though is that it was "out of network" with my insurance and I paid for it out of pocket and am very slowly being reimbursed maybe around 70% if I am lucky. I wish docs. would be required to have more nutrition in med. school because I want to scream at the TV everytime something healthy/herbal is offered but you should discuss it with your doctor!!!! Why? They don't have a clue.! Homeopathy was the way of the world before the AMA came into existence and refused licensing to any medical school that still offered to teach it!!! Gee why has it made such a comeback? hmmmmm
Good Luck Deni and everyone
Deni I grew up in Bergen County and was just there in Ramsey this weekend visitig family.
Danette
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Hi Baywatcher,
I hope that you can come to terms with your decision for going ahead with having the mastectomy. This is a terrifying diagnosis that we receive. I was terrified when I learned my diagnosis and wondered how the heck this could be happening to me. I don't have a family history, I breastfed my children, etc., etc. - it didn't fit. It had just never occurred to me that I would have need to worry about getting cancer. I wish I could pinpoint where it came from. It would be so much easier to treat! Anyway, I don't think you should regret any decision that you have made. You cannot change it now. It is what it is. As long as you feel good about your decisions moving forward you will be fine. Did you ever read the book "The China Study"? It was written by T. Colin Campbell who spent 40 years researching nutrition and it's effects on health. It is a fascinating book and links most disease in our society to nutrition. He talks about casein (dairy protein) and how it promotes cancer on mice in laboratory testing. Very interesting. Also, there is a great documentary online at Foodmatters.tv about nutrition. The film is how I learned about alternatives initially. They too talk about how nutrition effects our health. They talk a lot about cancer and vitamin c intravenous therapy. I would recommend anyone with or without cancer watch it. Take care of yourself!
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Vivre, Isn't it amazing that docs do not learn about nutrition in medical school. This should be the most important topic taught. It makes perfect sense that our health relates directly to what we put into our bodies. Think about it, when you feed a horse, you feed it hay and oats - that is a horse's diet. The horse will thrive. If you start feeding it sugarcubes and other nutritionless foods and feed only a small amount of hay and oats, the horse will get sick and over the long term die because it has not gotten the nutrition it needs to thrive. No one would think about feeding a horse anything other than hay and oats. Veterinarians would make that connection, why don't doctors? Too many are so dismissive that nutrition has any effect. It just doesn't make sense.
Dani, I'm glad that things are going well! Another testiment to other woman that we must do our research! It is true there is so much $$$ involved in allopathic medicine and the drug companies. The profits cloud the benefit! It is really scary. But we all need to keep ourselves informed and educated for our own good! I live right next to Ramsey in Mahwah! We could have passed one another on the street over the weekend and not known! Such a small world.
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Danette, The IPT is very interesting. I can't imagine that my onc would have even considered isolating anything and testing to see what worked. In fact, some one asked how any one knows if the natural approach is working, how do we know conventional methods are working? My onc does no scans, no blood work, no tumor marker testing, nothing after chemo was done. He's just assuming that unless I feel a lump or have weird pain, I'm A-ok. He also told me to stay off the internet. When I asked him about some supplements, he told me he didn't want me "eating an herbal salad of crap". My PCP has actually been a much better support lately and has ordered any blood work I want done. I bring him articles on the supplements I take and he thanks me for them. Anyway, I wish I had known more a year ago.
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Hey all you beautiful free thinking women-it is so great to see so many new "sisters" chiming in here. You are all so right, nutrition is the key to our survival and it is maddening that doctors do not take it more seriously. Look at all the news stories we hear about certain foods causing cancer, yet they are ignored by the public because their doctors tell them to just take a pill. I am so passionate about spreading the word that I am working on a website that is all about prevention through nutrition, exercise, and supplementation. I hope that we can have a site to send our healthy friends to, where they can find all of the information we have been digging up through our own journies, so that we can help others learn how to prevent getting cancer in the first place, and what we can do to keep from getting a recurrance. Yes, there are the naysayers who believe it is all a crap shoot and we can't control anything. Well, I think those of us here are proof that there is a lot we can do, and for those environmental factors we cannot control, we need to advocate that the government starts to protect us more. So I hope that all of you will be taking part in this new forum. If you want to email me, I will send you a link as soon as we get it going. I am still having trouble finding help with all the technical stuff but hope it will finally get going soon. I truly believe that if we can spread the word, we can save others from the anguish we have all been through.
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I meant to post this site here. It's the latest in nutrition and vitamin research.
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Deni-
I read "The China Study" right after my mastectomy. It was a wake up call to me, so much so that I went to a lecture by Dr. Campbell and talked to him. I am on his email group and get updates from his foundation. I also met Dr. Neil Barnard. He has written numerous books about nutrition and is president of the Physicians Council for Responsible Medicine. He was instrumental in getting the milk ads (which stated that you could lose weight with 3 servings a day) pulled from the airwaves.
Virve- I read this thread daily but I don't chime in much. I pretty much thought my views on a vegan diet were not shared by too many others. Nutrition is the only thing that makes perfect sense to me. I am interested in your new web site when you get it up and running.
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Hi Everyone. Something caught my eye and I started reading here. Very interesting.
Is there anyone here taking Iodoral? I am just wondering what you thought. I have been on it for about a year. Thanks in advance .
Patty
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