Early Stage Natural Girls!
Comments
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Dunesleeper - you were saying there doesn't seem to be any follow up - I was just showing you that some is obviously done.
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I did not see anything wrong with what susieq posted.
Why would you think she was not supporting you with that information?
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She was only telling me how slim my chances are.
I'm done with you people.
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OK, did I miss something here? "you people." What did we do?
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Statistics are a dicey topic in the cancer game.
Frex, there is a disturbing tendency for doctors to tell a BC patient she will DIE if she doesn't use the standard corporate protocol (surgery, rads, drugs, possibly chemo). If the patient refuses all or part of this protocol and uses herbs instread, then the the cure is a MIRACLE.
As if the herbs had nothing to do with it.
I love scientific method, but in my observation statistics have become suspect in the for-profit medicial world. Anyone can buy statistics to say ANYTHING nowadays.
Plenty unemployed scientists out there who are willing to "play ball" b/c they have college loans to pay-off or mortgages or a kid on the way ...
Sort-of off-topic but a reality for those of us following 100% natural course and facing the incredible pressure to march in lock-step with the corporate medical plan for our lives.
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I go see my onco doc this week because my doctor is "concerned" that I stopped the meds and plan on going au natural. On the plus side, I found a very good clinic that may accept my insurance for nutritional needs. It's a little over an hour away and I may have to pay for the out of area services, but I can handle that.
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Same here Mini! He wouldn't talk to me on the phone. Said I need to make an appt. so we can "discuss" other options. I really don't want to. My internist can "follow me" why pay for add'l doctors?. Yes, I have insurance, but have to pay 20 percent. I don't think I need an onc unless there's a problem again.
My surgeon said he didn't need to see me unless I get another lump. So he is out of the picture.
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I think they want to see us because it's taking us out of our comfort zone (home or work) and putting us into theirs; a head game. My onco doc is nice and took good care of my husband when he had his cancer, and I don't mind being followed by him; he's actually much closer to me than my own doctor - 4 miles vs 35 miles one way, so it would be easier for me to go to him. But he may not keep me as a patient if I don't play follow the leader. I guess I'll find out in a few days.
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Yes, let us know what he says.
A while back my cardiologist prescribed a drug for my atrial fibrillation. I googled it and was shocked at all the SEs so told him I didn't want to take it. He was totally ok with my decision and gave me another drug.
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I have a list of things I will not take. Period. Drs. often prescribe what is given to them free by pharm reps and often receive "incentives" for prescribing one drug over another. Patients are also often just as guilty. I've read and been told by doctors that I know or have worked for that a patient will often demand the drug de jour over an older, cheaper, and often more effective drug because they've seen it on recommended on TV. It irks me to no end that pharmacueticals can be advertised on TV. They make it sound like the Rx is a wonder drug, while a seductive voice, or worse, itty bitty white writing that you have no time to read even if you could see it tells you the side effects are an increased risk blood clots, stroke, cancer, liver damge, etc., and a few years later there is a class action lawsuit. I especially despise the one for a drug for either bi-polar or schizaphrenia (sp?), I don't remember which it is. Marketing to the mentally ill. Really? These people have no shame.
I'm all for making ALL the information available to the public so we can be fully informed, but showing happy people skipping through the daisies, or laughing and dancing, and that type of advertising should be banned and advertising drugs limited to print media and medical journals. Every problem cannot be solved by popping a pill as much as I would like it to be.
Ok, rant over, I'm going out for a walk before it gets too hot.
HAPPY MONDAY ALL!
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Well said Mimi! I agree completely.
It is funny how some people think doctors can do no wrong. My friend said "Oh, the doctor will get mad if you don't take that drug, he may drop you." I told her if he did that would be too bad.
Another friend told me her doc said "You MUST take Tamoxafin" she was scared not to. But luckily she did okay on it for the 5 years. She told me she wouldn't dream of not doing what he said though.
I want to research everything for all the above reasons you stated. A few years ago a friend gave me a pill for my backache. I asked the doc if it was ok to take. He said it was and gave me an RX for it.
A few WEEKS later it was on the news that the drug had been recalled! I contacted the drug company and get a check for the $60 I had paid and then mailed the bottle back in the envelope they provided. Whew - luckily I had only taken 1 or 2 pills.
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Hi Ladies - this is my first time here... I am in a connudrum... I have my mother's 2 sisters that had the same type of breast cancer as I had, they both refused treatment, both had a recurrance within 5 years... After trying the AI's and not doing well my MO gave me a total of 9 months reprieve.. I go see him tomorrow - The last conversation we had was to just heal don't think about meds but we might try tamoxifen when I see you next... I am confused on what my alternatives are... and he gets cranky when things don't go his way... I just need to have other opinions on the subject..
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To the newer of the alts - SusieQ was referring to her own thread on the
Forum: Clinical Trials, Research, News, and Study Results
which the day before she provided and entitled:::::
Alternative/CAM Treatment Research - poor outcomes observed
http://community.breastcancer.org/forum/73/topic/792173?page=1#post_3165958
where she posted these links
http://www.ncbi.nlm.nih.gov/pubmed/22863642
the pubmed study on 2,385 women w bc who received conventional systemic tx then went alternative and 177 who did not receive ssytemic conv tx and always chose alternative. The study does not give us a single detail on which systemic convt tx was used on anyone, or worse what the women chose in the alt and complementary option and how well they focused on their wellness and life choices, not a clue. Like we are idiots? to believe this research. I wantt o see the links to the real research, all the details, each and every one and I want to hone this study down to what can be chosen, what did give results and what possibly gave the cause for reoccurence and/or mets.
and this link from an oncology surgery group that did give some detail over 61 women who either had surgery but waited 8 wks or more to do so, or did not have surgery at all. Part of the women had surgery right after finding mass (before 7 wks 6 days?). All the women refused rads, conventional chemo, endocrine drugs. WARNING WARNING WARNING - this link contains an image of a woman who once had a 2 cm mass and refused surgery, it had progressed to the point of no return long before the picture was taken. The extreme in fear tactics, imho, and I for one would hope we do not ever allow progression as we work toward our survival, we must work with the the best medical pros either allopathic or naturopathic, even homeopathic added in there, and we must be self-diligent in our assessments of our choices.
http://www.springerlink.com/content/r5k8v2873363x331/fulltext.html
About this research of 61 women, actually 57......
My first question, how long was each mass there before they went to the surgeon? How long was it there before they even found it through self-exam or otherwise or through an annual mammogram or thermogram or ultrasound or PET CT?
Next question, what did the women choose in alternative tx for life threathening breast cancer?
My comment being, most women and men who realze they are dealing with breast cancer think this is not a big deal, perhaps, until or unless they know others who have dealt with it, and my point is they do not hone a protocol and are not stident enough in that protocol and do not realize that it must be a protocol that is all-encompassing to what cancer is, which is a phleomorphic shape-shifting little thing that can kill us if we are not healed from the inside out and outside in and the cells are not addressed in all states of being. Which is why life-threatening chemothereapy and radiation are often so effective right off then the cancer turns back on the patient. Whether choosing conventional or alternative, the entire list of needs for the patient must be checked, checked and checked again then continue life-long for the best chance of survival without reoccurence or mets.
People who say forget it have heard it all before, however innocently it is presented, believe me, and have been slammed on other threads, one where an alt woman is being slammed now for her choices, where we all get slammed one way or another. Tired is tired, but I am more tired and sad from my alt buddies leaving because of the controversy of our choices instead of all of us being able to ban and just share our info, experiences and what is either not going so well for us or what worked and got us through yet another year of high QOL or even a decade.
SusieQ - these two negligible studies are not enough, if you know wherethey are in that forum you refeerred us to, then please do send the actual links for more open information on the beefy studies on women and men choosing alternatives. We need to assess each side of the decision, especially early stage breast cancer where women think they will go natural. I could not find more on the forum. But I did find a multitude of discussion between real people utilizing their versions of alternative therapies, again even these groups online are lacking to me, I want more, yes, more real studies. What is the FDA and / or AMA afraid of? read the books, there are tx that have worked and still work to this day. But then, they all come down to statistics and I am never going to buy into being a statistic. My choices are individualized, cannot be replicated in any way, as it must be for our survival in the alternative world.
Early stagers have their work cut out for them, this is not the easier softer way, in many ways. But neither is conventional by any means. This is breast cancer and it is real.
Diane (Essa)
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Since this is the critical early stage natural girls thread, I have to say that
if it were me
in hindsight of where I have been with breast cancer so far
this is what I would never do again......
- NEVER I would NEVER allow a biopsy of the mass, I would use the thermogram and the PET CT scan and /or have surgery to just take it out to decide if it is cancer.
- NEVER allow a surgeon to operate on me without the PET CT and thermogram and updated ultrasound and mammos even, never allow it.
- NEVER use a general surgeon no matter how respected. I would use an oncology surgeon who is specialized in breast and lymph node cancer, I say both because he must know the lymph node oncology more than the breast oncology surgery in my opinion, the lymph is what is more important and for me was treated as a secondary issue, not even getting all the nodes.
- NEVER allow surgery until it has been assessed through proper and thorough testing that I am multifocal or not. Know where the surgeon is projecting the margins are, not just guessing and waiting on the path report and planning to do a re-excision. I know now that re-excision may well be necessary but I also know now that proper testing prior to surgery and that being pretty much right before (two weeks even) will give that surgeon much more information and could save that second and third surgery. They will try to tell you the insurance is not going to pay for more mammos, but there are other tests anyway and it is our life at stake.
- Before going in for cancer surgery, I would always realize I am not a breast, as being treated like I am, I am a person w systemic cancer in my body and it could be anywhere else, so treat me like that, check me out first.
- Never allow a surgeon to touch me if they have not given me complete information on lymphodema LE and my risks and what we are going to do from this point forward to alleviate the risk factors, including drains, no IVs or blood draws from the affected side, that I not sleep on that side, that I do not actively exercise that side to keep the LE down, that there are ways to work with LE - see the threads on BCO for LE, so much info you must know.
and this is what I do not know if I would or would not........
I don't know if I would even have surgery, but that is me, and one must realize the intensity of the memory issues I had prior to finding the mass and after I first found it, memory was so off I FORGOT I found the mass perhaps three times, so it was growing all spring and summer and face it, years before that because cancer is like pennies multiplied. The beginning, you have 2 cents then 4 cents then 8 cents and what the heck, not so much for a little 'mass' of cells, right, then it takes fire as it duplicates and the more aggressive the quicker the mass forms th more widespread the systemic possibilities that come with all masses. If I had been able to go the alt route at the very beginning, I don't know what I would do. Because of my memory issues, I have no hindsight on that, but I also was not equipped to learn anything then, and I did not know what I know now about things like Laetrile and ellagic acid and all the rest that support he immune system to the point of healing. So do not go by me at all.
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Dogsand jogs - my mom was a surgical nurse and thus had a great deal of respect for doctors for the most part. When it came time for another surgery for her, I tried to get her to go to another surgeon but she thought it would hurt his feelings since they had worked together for so long and he'd done her previous surgeries. Long story short, he messed up and although I called in another surgeon (my current surgeon ironically) it was too late. Her concern over his hurt feelings cost her her life.
GMaFoley - Going natural is a very personal decision. I think if polled we'd find numerous reasons why we are making that choice. My mother had breast cancer and had a mastectomy. She never had any hormonal treatment because of other health issues. She was 12 years past her Dx when she died from the surgery I mentioned above. That, in part, has influenced me, as has the fact that I have researched the drugs involved and tried 2 with horrible SE's. Also, the early catch on my tumor and the lack of need for chemo affected it as well. I will not say that I will never take a drug for my BC, but I don't believe, for me anyway, that a drug that is listed on the American Cancer Society's own website as a known carcingen should be my first course of treatment. Is it taking a risk? Maybe. But so is taking the drug. The side effects are substantial. Is there a higher risk? If you believe the statistics, yes. But if you reverse your look at the stats, more women survive than not. Why? We don't know for sure because no one studies that. No money to be made by not taking drugs.
Also, no CONVENTIONAL treatment does not mean doing nothing. Supplements, changing eating habits, exercise regimes, etc., all are positive actions. Dismissed by most of the traditional medical establishment, yes, but actions nonetheless. There are several threads here where people have posted studies and other information. I think this is a good place to start. Research DIM. Go see a naturopath if you have one available to you. Read. Pray. Talk to your Dr. openly when you go see your doctor. Many here say their doctors are willing to work with them on a natural path, but be aware that they will likely steer you to traditional meds. Take a friend or significant other with yuo for support. Ultimately, we have to be our own advocates. Either way you go there are threads here that will offer you support. Good luck on your journey.
MadBluebird - I totally agree. We see many stats on the women that die but none on the ones that live, even though they far outnumber those that don't. Also, where is the consideration for lifestyle in those stats? Not to mention the usual domographic used for testing 65-90. No offense but if you're ninety, your pretty much living on borrowed time regardless if you have cancer or not. Also, many studies do not seperate non-cancer related deaths from cancer-related deaths. If you are in those studies and you get hit by a bus before the magical 5 year mark, you're listed as a death even though it had nothing to do with BC. Conversely, if you die 5.5 years after Dx, you're listed as a survivor and added to the "lives saved" by the drug you were taking. Additionally, women that have poor dietary habits, drink or do drugs, don't exercise, smoke, etc., are lumped in with the women that do none of these even though it is proven that these behaviors have serious health repucssions. And as you mention above, I hesitate to tell people that I am not taking the drugs because they act as though I have a death wish or think I'm in denial. It is soooo frustrating.
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Sherry
how was it graded ?
I was recently told my ER was 8 and PR a 7.Thx for any help with this !
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Also found this in the
Forum: Clinical Trials, Research, News, and Study Results
Topic: Chemotherapy can backfire and boost cancer growth
discussion on bco here..........
http://community.breastcancer.org/forum/73/topic/791602?page=1#post_3147351
actual link to the information here and note the journal had this info since April 2011 before accepting then publishing. And this is the original that was finally published. Who else had this info and would not allow the publiic to know but had to publish after the Nature.com knowledge is made?
http://www.nature.com/nm/journal/vaop/ncurrent/full/nm.2890.html
For early stage - this is inmortant because there are tests prior to deciding on chemo or not and which chemo and how much. One test is called Rational Therapeudics. There are choices in chemo amounts, and there is Poly-MVA w chemo, IPT chemo therapy, etc.
To chemo or not to chemo is always a first question.
The discussion on bco is an intelligent one between complementary, alternative and conventional choosers plus the mods add info links to consider.
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Essa - I just want to let you know that peer-reviewed journals like Nature always publish the date the manuscript was first submitted (" date received") and then the date when the review was complete and the paper was finally accepted. In between, a bunch of steps happen - the manuscript is sent by the journal to experts in the field (who must be independent of the authors) for peer review. Then these reviewers send their comments and recommendations back to the editors, who send them back to the authors. It is rare for a manuscript to be accepted for publication on the first review. The reviewers may recommend acceptance if minor revisions are made -- or they may not " accept" but allow resubmission after major revisions, often asking for mor experiments or analyses to be performed. In the case of major revisions like this, there is often a third version requested with final revisions. Often, the delay between versions is due to the authors' needing more time. It's just not the case that Nature suppressed this information for a year.
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Mini, I am so sorry about your Mom---
I have a nurse friend who although she likes certain doctors does not admire most of them. She said nurses are put in the middle when there is a problem and if you catch the doctor in an error you have to diplomatically say " Dr. are you sure you want to prescribe this drug?" because they can't admit they are wrong. The patients' relatives also give nurses a hard time (probably because they are afraid to complain to the doctor)
She eventually took an early retirement because she got so fed up.
But you know this is a common problem in any business. If you are in "middle" management you get it from the employees under you and from the bosses above you. I once pointed out an error and my boss said "Forget it, nobody likes to be told they made a mistake" he didn't want me to report it and I didn't have the guts to go over his head. Luckily this was nothing life-threatening LOL
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I always ask a nurse, preferably a surgical one, when I want a referral. My mother gave me a list of doctors that were never to touch her if she was unconcious or able to choose her own. Unfortunately, her surgeon was not on her list. He had been a good doctor and was a nice man, but as I found out later he was ill and keeping it a secret. He never should have been in that OR. on
I was in "middle management" for years and you get it from both sides. Half think you're after their job so you can continue your ladder climb and most of the rest resent you for having authority over them. I finally had enough and resigned. I will be happy to be a flunky somewhere. Manager is just a fancy way to say you're going to work longer and harder than everyone else and without the benefit of OT since you're salaried. I'll make less money but will save on stress, travel, medical issues caused by stress, etc. And in return I will get to spend more time with my family, be able to volunteer more, and not have an eye tic every time the phone rings with another fire for me to put out. All in all, not a bad trade off.
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Very well said Mimi! And so true--
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http://curezone.com/forums/am.asp?i=1386221
Found this link about phytoestrogens
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Purple on the oncotypedx they score it. My ER was 6.7 and if I remember correctly 6.5 is the cutoff for ER-. I don't remember by PR score was it was much higher on the positive side.
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GmaFoley:
There is a perception that anyone who refuses corporate medicine is "doing nothing". Personally, I am doing A LOT.
Changes to diet
Treatment with respected Ayurvedic doctor
PLanning treatment with respected naturopaths at Mederi Clinic.When I said I would NEVER get a breast amputation (mastectomy) I had friends ask me, "is it worth DYING to keep your breast???"
I answer. "that is a false choice. MANY people do natural treatments and recover from cancer. It happens all the time. One reason the corporates spend so much money trying to discredit the competition. Who says I will die? I intend to live well - both during and after the cancer."I know one woman who just "gave up". I think she was so overwhelmed by the horrific corporate treatments she wanted no part of it, but she wasn't aware of the natural treatments so didn't pursue them.
The book "You Did What? Saying No to Conventional Cancer Treatment" has a very inspiring and TRUE breast cancer success story. Worth a read if you are considering natural methods. Also very educating to give a realistic picture of the process of chosing natural vs. corporate.
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NatKat - I couldn't agree more. They are quick to throw out the number of women that don't take the meds that die, but never mention that the overwhelming majority that don't take them live. They don't do studies on the women that don't take them BUT do change their lifestyles, nor do they tell you other heath conditions, both pre and post BC, of those involved in the studies, besides using a demographic that generally ranges in the 65-90 range. In otherwords, those more likely to have other non-BC related issues at the time of their diagnosis or after that would medigate the effacy of various treatments. Instead of only studying the dying, they need large comprhensive studies of the living to find the common denominator amongst them. Then maybe we can make more strides in BC prevention and a cure
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Interesting, sherry! Thank you
Has anyone else had this type of scoring? Anybody ????
Somebody did tell me I was a 7 and an 8.
BUT I most definitely did not have oncotype .,.,this score was post biopsy. -
AnnNYC - I appreciatethe explanation on publishing processes, it's just that once again I belive the information that could save lives was not brought forth in a timely manner, some things are just more important than others, I think if it had come across my desk, I would grab and slam it into circulation, especially with the Internet as a line to informational content.
Purple - I did have an all those tests, meaningless to me for what I want to do for my health challenges. Some of those results can really mess up the hope.
NatKat - I'm in complete understanding that you are doing a lot. From the first moment I found the mass, I was doing something, many things, wrapping my confused brain around how to go about this and find a protocol to work for me. I realize that to transition as quickly as this cancer and to bring the cells back to a mode of stop multiplying and their natural death as I go, that is my goal. Alternative choosers cannot ever put their head in the sand or do a little of this or that. The protocol has to be some serious work and it continues and changes from now until death, whether that is a year or fifty years from now for some other reason than cancer related.
LAETRILE - back on page 26 there was a discussion on Vitamin B17. I just came across the best online information I have ever read, so bringing that link here and placing it back there in an edit. Take what you can use and leave the rest. The Vitamin B17 is part of my experience, strength and hope so sharing as I learn and use it.
http://www.dreambandclub.com/health_free_articles_B17.htm
What to expect in reading....... """"""25) Q. If vitamin B-17 kills cancer-using cyanide, is it possible for the cyanide to kill normal cells?
Answer: Absolutely Not. Research shows that the normal cells in our organism contain an enzyme called Rodhanese which "neutralises" the Amygdalin. This enzyme does not allow the Amygdalin to release the cyanide. In this way, Amygdalin only serves as glucose to healthy cells providing energy. Malignant cells do not contain this enzyme. In the absence of Rodhanese, the Amygdalin is activated liberating the cyanide radical only inside the malignant cell causing its destruction (for more information see Laetrile and Cyanide)""""
LOVEEssa
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I just found this thread after reading a rousing, inspiring statement by vivre from Jun 1 2009 about how she does not take any Rx and never will. Yes! I have been tormenting myself ever since seeing the Med Onc 3 days ago. Ten times a day I would shout I won't do it, then start to doubt, doubt, doubt. But the only time the fear and depression has lifted has been when I know this is not for me. This is not for me. AI is not for me.
I will reduce my fr****n estrogen and I will not need Hormone therapy to do it! And if I die trying, well it is my life. My death will not diminsh any other women's choice to take AIs. Go for what makes you feel you are doing the best you can do for yourself. Going natural is going to be my path.
Reducing IGF-1 growth factor can greatly slow cell growth. Diet & and exercise are no problem. I am already trim and fit.
Thank you to everyone who has repsonded to me over the last couple days, on the other thread, but the vivre is right, I have to trust my gut instinct and find my own path.
Hap
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hap-k I surely know what you are saying. In fact, I saw my Onc a couple of days ago and was nearly convinced to give Femara a try too. It was all that "50% chance of recurrence without it" stuff. She even asked me if anyone would be upset if I had a recurrence and died, basically. Scare tactics can be very effective.
My estrogen is low, well below the 10 score that Oncos like. I'm doing everything I can to naturally keep it that way. My diet is excellent, my blood sugar is lower than it's been in years, it's good. (That's the IGF-1 factor, right?) I feel pretty good and pain free, though lymphedema is getting me down. Doing what I can about that, too.
The Grade 3 was news, and does give you pause. But that tumor is gone and I still feel that keeping my cel phone on my purse strap (by my boobs) is what made it go crazy. I'm certainly not doing that anymore!
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