Alternative Treatment
Has anyone used alternative treatments such as Lorriane Day, Chris Beat Cancer, The Hallelujah Diet and skipped the cookie cutter 6 weeks of radiation and five years of Tamoifen? I am so confused , even the 2011 cancer book that the radaition department gave me in my red folder states that radiation can cause a second cancer, that they are working on improving these satatics. I read the whole book cover to cover and was just blown away by what they are admitting of these chemicals. Anyway, would like to know if anyone else is swinging on this bridge? Thanks
Comments
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Absolutely! There are many gals here who have refused chemo and rads. I have been one of them on several occasions and would highly recommend you avoid those baddies for as long as absolutely possible. There "may" come a time where it would be unavoidable (as it did for me when they wanted to put me in hospice care a few months ago), and you have to take desperate measures in order to get back in control of things.
But that day may never come for you. Assuming it won't, I would definitely start with the alternative therapies cuz chemo and radiation will still be waiting in the wings in you change your mind.
There are many valuable websites in this regard and I think the most comprehensive one is http://www.cancertutor.com/ There, you can find alternative protocols for every stage of cancer.
So sorry you have to be swinging from this bridge, but congratulations on taking charge of your OWN health and not just leaving it to someone else.
xxoo
Melissa
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".......Assuming it won't, I would definitely start with the alternative therapies cuz chemo and radiation will still be waiting in the wings in you change your mind.
"Wise words from Melissa, here. That's exactly what I have been trying to convey on this web site for years. I just was never able to put this way. To take every substance that exists from the get-go might preclude using them later on if need be.
And thank you for the link as well, Melissa.
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No doubt there is much overkill in bc tx, especially for some very early stage cases. OTOH, please be very sure that you learn everything you can about your very individual dx, and not follow what anyone else did, because there could be aspects of your disease that are very different from theirs. Your life is the one at stake -- not someone you don't know giving you advice on the internet, either here or on an alternative website -- and I say that with complete respect for the previous posters. My point is that your situations may not be alike at all.
The best advice I can give you is to talk with multiple medical professionals -- whether that's conventional bc specialists, naturopathic docs, or integrative docs -- about each decision. And be sure they have a lot of experience with breast cancer (not just cancer as a broad condition) and understand what makes your bc unique (Oncotype-Dx results, margins, etc.). Only then, IMO, can you make an intelligent, informed decision about what's best for you.
Personally, I'd lived very naturally, never taken any meds, and done a lot of holistic stuff prior to bc. So when dx'd, after much research and soul searching, I decided more of that stuff may not be enough, although I did refuse Tamox or an A/I and am back to using only alternative stuff now. But I had a much different pathology than you do, and mention my decision only to share that being open minded to some conventional med as a first line of defense, so that hopefully I will never have to deal with it again in the future, turned out to be the right (albeit surprising, if you knew me) decision for me.
Good luck with your search for answers! Deanna
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Dougbrimor
so sorry you have to face this terrible disease. You may get more answers to your questions if you post this in the Alternatives Forum. The one listed just below this one. I know it's difficult when new to this site, as you are, to figure all this out. But there is now an Alternatives Forum specifically to deal with the questions you're asking.
I hope you find the answers you need to live a long and healthy life.
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Thank you all for responding, I am just in a fog and on overload with all that I have read, and feel that I would not have cancer if my immune system was not surpressed, and then to add to that these chemical drugs with known effects, stating in the American Cancer booklet that they gave me, that second cancers do occur from radiation and Tamoxifen. What I have read on Tamoxifen has scared me to death. I met with the radiation doctor at Copper Hospital last week, and he said you look like a deer in the headlights. If you are that uncomfortable with radiation you could choose a masectonmy, I thought that I would fall off the table. We are not mere diseases but human beings and his insensitivity was as cold as a winters night and he has a cookie cutter matter of dealing with patients.
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The saving it for later approach is controversial. Your most effective effort against breast cancer is the initial one, so I never understood this. Two things about tamoxifen: (1) Most women do just fine on it. I took it for the full 5 years, no problem. (2) Its something you can try and if you have bad side effects, stop.
Your cancer was caught early so you have choices. You probably should do something, however. If you don't want adjuvant treatment like radiation or tamoxifen, a mastectomy is an alternative. To me, the radiation and tamoxifen would be a much simpler approach (Personally, I think people understate the long-term consequences of more involved surgery and overstate the long term consequences of radiation and hormonals).
You sound overwhelmed and panicky. Many of us dealt with those early days by talking with a professional. Most cancer centers have oncology social workers whom you can consult with for little to no charge. They can help with both your fears and your decision making.
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Hi. Just want to say I think this thread was moved from the complimentary section, no? I don't usually post about mainstream treatments in the alt section, so don't flame me.
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Yes, there is a difference between absolute and relative benefit. The more advanced your cancer, the more advanced your risk, the greater your benefit from any treatment. The point is that tamoxifen saves lives. Will it save yours? Well, if you have DCIS or a very early stage bc, probably not. Maybe. But unlikely. You are going to survive anyway. If you were node positive as I was, teh cahcnes that it will save your life is much higher.
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This is the source of the post above. I'd prefer to get my information from BCO than that site.
Thanks again, MOTC for clarifying the information.
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Susan,
Thank you for the article on Tamoxifen. Those are the exact figures posted by the manufacturer of Tamoxifen in terms of absolute and relative risk. I could find the Tamoxifen manufacturer's website and product results if anyone is interested.
MOC, I don't see any references for your theory.
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Thank you for your time, research and information, I so appreciate it. I will admitt that this is like swimming in a sea with no idea how to swim. I spoke to a naturalpath last night and she said that she would do chemo but never radiation, and that she would take tamoxifen just because she wouldn't want to kick herself for not taking it. However, I keep coming back to the same question, why would you take something that is going to cause further damage to your immune system, when your immune system isn't working as it should to begin with. I have known for the past two years that my immune system was suppressed and tried to explain that to the bs, however, she said that didn't make a difference. However, I am super low on B12, been taking shots past year, low on Vitamin D taking supplements past two years, under extreme stress five years and not sleeping, and suffered past year and 1/2 with infection sinus and teeth until I had the teeth extracted 3 months ago, and now the BC diagnosis. I realize that the docs are more educated, I realize that the woman on this post have a greater knowledge than I do at this point, but I do have common sense, and 6 weeks of radiation, 5 days a week, and tamoixfen for five years, is not allowing me any rest or peace. I meet with the onocologist Monday, and just wanted to have as much studied as is possible. I want to be able to have a conversation and not be railroaded as I was with the radiation doctor, who left me unable to think or feel after his comment. Again I want to thank you.
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Deanna,
I will get my pathlogy report, I do know that it was both progesterone and estrogen [postive, ER negative, was less than 1 cm, removed with a large needle biopsy, and last Friday I had the lumpectonmy, without the sentenial node removal, wrestled with that for three nights and decided that I did not want that done, the margins were all clear. She did say that they did find precancerous cells also. I meet with the onocologist on Monday and will I am hoping have a better understanding of the diagnosis. Thank you Susan
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Hi,
Be sure to ask your radiation oncologist if the treatment offers any "overall survival benefit."
That means, if you radiate the breast and gain a 10% benefit for recurrence in the breast, does that mean you will live longer (not just from breast cancer) when factoring in the complication rate of radiation on the heart and lungs.
PM me if I can be more specific.
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Susan, I'm not disagreeing with you. The benefits of any of these treatments depend on your prognosis to begin with. For many women the benefit is small. For others it is substantial. It is very important for everyone to discuss with their oncologist what the benefit is for them. The pointof the tamoxifen study is that for women who do benefit, the benefit lasts. Thats all.
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Thank you all for the timely information on Tamoxifen. I see my onc next week for my semi-annual checkup and I was going to discuss the benefits of taking Tamox. I've been on it since May 2010 and my aches and pains have not subsided, even with exercise. I walk just about every day or do some other form of exercise. I thought it gave me a 40% chance of the cancer not recurring. You really have to be careful with statistics. We have a high rate of cancer in my family, so I may end up staying on it, but I really want to have a heart to heart with my onc and my primary care doctor. I'm tired of feeling like I'm an 81 year old woman with arthritis instead of a 51 year old woman without arthritis.
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SusanK8, I'm reposting my response from another thread. The blog you are are cutting and pasting has some serious errors in it:
The blogger has missed one rather important little phrase from the data: "per woman-year." The tiny percentages s/he is reporting are actually PER YEAR, (not covering the entire 4 or 5 year time period as s/he interprets them to be.)
Unfortunately, they add up fast! One only needs to glance at (just glance, not parse) the actual study to see that many, many, many more women then that have recurrences. For the very group that SusanK8, and the "accidental amazon" refer to...
"the women with ER+ cancers, with and without PR+ receptivity, including 44% who had node positive breast cancer, 56% who did not, and 51% who received chemotherapy."
46 percent of those who did NOT take tamoxifen had a recurrence of breast cancer within 15 years, compared with 33 percent who DID take tamoxifen. In that same group, 33 percent of those who did NOT take tamoxifen died of breast cancer within 15 years, compared to 24 percent who DID take tamoxifen.
So there is the absolute benefit of the drug, for that particular group. Out of every 100 women, 9 lives were saved (or 9 percent.)
I only wish that 90 percent of ER+ breast cancer patients would never have a recurrence even without tamoxifen (actually I wish 100 percent of all people with cancer never would.) The reality is not so pretty.
But, please, don't believe me. Go take a look at the study yourself.
accidentalamazon.com/LongtermTamoxifen_Lancet7-11
Just take a look at the charts in this study. Those are the absolute risk reductions...or as I like to think of them, the actual lives saved.
Even among the "good prognosis" group of node-negative, ER positive women...35 percent (35 percent!) had a recurrence of breast cancer within 15 years of diagnosis if they didn't take tamoxifen. If they did take it, only 19 percent had a recurrence (and true, some of those are locoregional or in the contralateral breast, but some are distant metastases).
Anyway, when it comes to tamoxifen, it is NOT small numbers we are talking about, or splitting hairs. The drug is really a literal lifesaver for many women with ER+ breast cancer (who are willing and able to take it.)
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Beeb75,
Are you talking about risk of recurrence benefit or overall survival benefit?
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I am not sure how one seperates and divides all this information, howe4ver, I am sure that I need God to clarify what I am to do, the more that I read the more confused I get. I just checked out a web site called beat cancer.org and it is something that I am going to follow up with, because after listening to Dr. Silverstein, I think that she may shed some light on the radiation and tamoxifen dilemia that I find myself in. Also this was sent to me by a friend and I thought that I would share it.
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Mollyann,
Whether you look at recurrence rate, breast-cancer specific survival, or overall survival, the trends are the same. Outcomes are much better in the groups that take tamoxifen, compared to those that don't.
Since I think you are more interested in overall survival, the study (see Figure 6) showed that in a population of 2614 ER+ women under 45 (44 percent node positive, 79 percent had chemotherapy) 38 percent (38 out of 100 women) of those who did NOT take tamoxifen were dead 15 years later. It was 27 percent among those who did take tamoxifen. So 11 lives saved out of 100 tamoxifen takers. (62 didn't need saving, 27 were unsaveable with currently available treatments.)
For 4373 older ER+ women (55-69 years, 27 percent node-positive, 24 percent had chemotherapy); 46 percent (46 out of 100) of those who did NOT take tamoxifen were dead after 15 years. 37 percent who did take tamoxifen were dead after 15 years (keep in mind because they are older, there were more competing causes of death.) Once again, 9 lives saved out of 100 tamoxifen takers.
It's also interesting to note that only about 80 percent of women in the "tamoxifen" group actually stuck to the treatment. The beneficial effects from tamoxifen would likely have been more pronounced had *everyone* been compliant.
Hope that helps!
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Would like to suggest these web sites as they have been super helpful in helping me have a clearer understanding, what some alternative methods mights be open, and have aided me in making my choices clearer.
beatcancer.org Dr. Silverstein is amazing
www.the truth aboutbreastcancer.com
wwww.knowbreastcancer.net
goodnews website
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Hi:
I've read several of these posts and it pains me. I also have known others who took
Tamoxafin for the 5 years and in less than a year later, there was cancer showing up on the other side. This tells me that lowering estrogen isn't solving the problem. Especially with post-menopausal women. Does it make any sense that one would develop +estrogen +progesterone cancer when one's estrogen is already low? No!!! I had Stage ll, infiltrated lobular cancer. It was not early stage because the beloved mammogram didn't pick it up and the ultra sound didn't do it's job either. I had to have an MRI, and only then, did they see the cancer with all the arms and pathways coming from a main core. The mass was close to 4 centimeters. I had to have 4 fusions of chemo to shrink the cancer and that shrunk it to 2 centimeters. Then I had a double masectomy because I was NOT going to take any chances of this happening again. Mammograms do NOT pick up all cancers, especially when one is dense. Which I am.
My margins were clear after surgery, so I escaped radiation. I followed my oncologist suggestion to go on Arimadex. I stayed on it only one month. I decided I wasn't going to ruin my body for 5 years, joint problems, osteoporosis, arthritis, etc. I read so many women who are living in agony while on these "oral chemo" drugs??? who are so scared to go off the drugs because of cancer coming back. I did a search on "alternatives to Arimadex" and found a lot of research on D.I.M. (Diindolylmethane). This is a cruciferous supplement that is an extract of broccoli, cabbage, cabbage, spinach). This product "metabolizes estrogen". I found so much research on it I was amazed!! Why is this product so quiet? Check out Dr. Michael Zeligs. He has a patented product and he's done research on this for over 20 years as well as many other physicians. There are trials and studies out there that have positive results!. When I approached my oncologist, he knew nothing about this, of course! I decided to see an alternative doctor, and sure! They suggest this product to many women. Go figure!!! I am taking D.I.M. Plus, Dr. Michael Zeligs patented product and I get it at my local Herbarium Store. How simple is that. The I URGE women to research this product, read about it, learn it, search Dr. Michael Zeligs and see an alternative doctor and you will be amazed. I never knew we had "good" and "bad" estrogens and that they need to be metabolized or we are at risk of cancer. Hormones, chemicals, environment, stress can throw off metabolizm. When that happens, it's called "estrogen dominance". Estrogen dominance can cause auto-immune disorders. I've had more than one auto-immune disorder. I strongly believe that our estrogens need to be metabolized to stay risk free breast cancer. And I am amazed that regular medical doctor's or the pharmaceuticals do not even go there. I'm sure there are many money reasons why they don't. But medical doctor's hands are tied and they can't go there, they need to prescribe the drugs. So I do strongly advise women who've had breast cancer to seek out alternative/holistic doctors and have a talk with them. Good luck to all.
Kathleen -
Doughbrimor, Sorry you are having to deal with this beast. I too have swung from that bridge but was eventually able to pull myself up and am now crossing it to get to the other side. My head spins too when I read those studies and everyone's interpretation of them. The best advice that I received and I can give is to get educated to both sides of the coin. Know what your choices are. Don't let anyone push you into doing something that you dont feel good about. Your bc didn't form overnight. You have time to step back from the fear and get educated. (Fear disables rational thought, IMO.) Once you have done so, you will be able to make the right decision for YOU. Beyond lumpectomy, I chose the alternative route based on my situation. Had my bc been more advanced, who knows, I may have made a different choice. Desperate times call for desperate measures so they say. I have no regrets and am at peace with my choice. I wish that for you. Best of luck in your journey.
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Kathleenla, Thank you so much for sharing all this, thank you for talking to me, thank you for letting me know that you chose alternative and you are doing well. People have said what do you want to die, because if you don't do the treatment you will. I feel like the majority of people have been so brian washed, they have forgotten to think and get thinking and research. I would love to knwo what the alternative doc has told you and what about your diet. That is if you wish to share, it was so good, the reports are intimidating that have come down this thread and I sat and read and re read it and thought, I must be on overload because I am not understanding this as others di. Again thank you
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KathleenLA,
How much DIM are you taking? I am taking an Indole blend (includes DIM) of 400 mgs per day. I am also taking Tamox, though, - DIM is supposed to help it. I have been on it about 5 weeks. My SE's are: 2 mild hot flashes per day, somewhat dry eyes, and a bit of vaginal discharge (sorry about the TMI.) Other than that, it is no big deal. I'm relieved!
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kathleenla, if DIM is an extract of brassicas, has the vitamin K element been extracted from the tabs too?..i have been reading about the benefits of brassicas, and to incorporate them into our daily diet, but there were warnings about too much consumption of brassicas/vitamin K daily, and potential clotting issues etc....i imagine a concentrated supplement would be easier to tolerate than loads of broccoli etc, but wonder if anyone can help me re the K? if we are on tamox, which increases risk for blood clots etc.
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I found this Q and A online, but it was from a vitamin company:
Q "i have just started on coumadin for a DVT. Does broccoli extract contain vitamin K?
A "..Not that im aware of, we have not seen any studies that indicate vit K is present in broccoli extract"
Also this: It is extremely difficult to get too much vitamin K from a normal diet, but an overdose is possible if too much of the compound vitamin K3 is taken. An overdose can cause jaundice, anemia, flushing, and sweating.
apart from that, i couldnt find much on the question.
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I just ceased taking tamoxifen after 4 months, but will probably go back on it after my doc appmt next week. I still have some questions about my personal risks.
What is amazing to me is how every natural agent that may help cancer is broken down to minute ingredients and what they do to help, but with tamox, the info is unavailable. Just a generalization to ease our minds. Not enough info for me. And i question the mixed accuracy and agenda on these drug studies.
I have to add though, that my first margins were too close to consider safe and the surgeon did a second margin which also had cancer in it. So cancer can be in more than one area of a circle, which was why i chose chemo, radiation and tamoxifen. Most reocurrances are because there is a stray cancer hidden from detection, and that was my final answer to the daunting decisions i made. -
hi my name is julia, i am a cancer survivor i was diagnosed with breast cancer last year and they put me on Tamox. i was taking it, about a moth ago i stopped taking it because it really scared me about it's side affects one of them was where if you took it it would give you cancer in your other breast. so far my doctor dosnt know that i stopped taking it. ive been taking natual stuff to kill cancer cells i havent seen a doctor that is a specialist and alternative medicen i have been searching on the web but i cant find one that really is a specialist in breast cancer. i have been really strict with my diet i eat vegtables evrey day nothing that contains sugar, no white flour, no soy, no dairy, no gluten, and i chech my PH every day to make sure i am alkaline because like you know cancer likes to grow in an acidic body. i have been reading a couple books about cure cancer with alternative medicin
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any form of cancer can also be treated with the use of these what we called alternative medicines since there are lots of alternative meds. available in the market which is sometimes less economical and much affordable than branded medicines, provided that you first consulted your doctor before trying out any of those meds you were planning to take to make sure that you'll get the same benefit as you were getting while using branded drugs.
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I have just been diagnosed with cancer again after 5 years since a lumpectomy the first time (IDC both times, 2nd is very near where the 1st was). Following surgery I had chemo & radiation & have been on Tamoxifen for about 4 1/2 years. I'm considering alternative meds this time depending on the fianal diagnosis (awaiting an MRI & PET). I'm currently thinking mastectomy of 1 or maybe both. I'm thinking about quitting the Tamox, since I feel it hasn't worked, but my bs said that maybe it did work in that it kept things at bay for 5 yrs. My se's are hot flashes, depression & an inability to lose weight regardless of working out (lots of belly fat). All in all, not bad, but for what? I get to do it all again? Seriously looking for alternatives this time.
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