Survivors who have used only alternative treatments
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sheila,
here is the kicker, not only that we hope she did not go for surgery, but we also refused Tamoxifen (endocrine theraphy), she threw her 5 months supply of Tamoxifen..
instead she is taking I3C/DIM to balance her 2OH and 16OH ratio-- we are friendly to our enemies ..
you are probably appalled, but yes, thats what we do..
and sometimes I wonder why do I have to be in this thread so that you can just tell me that I am absolutely wrong, for what I feel is absolutely right for us.
why do I even bother? could this also be the reason why you cannot see so many ALT BC Women out there?
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I also pray and hope sheila that all the conventional medicine you are getting works for you and that you would not get the mets that we all fear of.
Good night and have a good rest,
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Nonay, it's when the tumour can't be cut out, such as pancreatic and oesophageal cancer that the patients goes down hill fast and dies. Surgery often cures BC and otherwise gives us time before a recurrence.
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Hi Nanay,
I've hesitated to post here, as I certainly don't want you to feel attacked or "ganged up on." I've been following this thread and I don't see where anyone has attacked, sneered, or ganged up on you or anyone else, and I'm sorry if you've felt that way.
The truth is, when you post on a public board, you're inviting response. On this particular board, there are a lot of very knowledgeable and experienced women who honestly and sincerely care. Out of this care and compassion, we look for facts and point out inaccuracies and misinformation in an attempt to help.
The original post here from WOM was addressed, and she later confirmed that her mind was already made up about her treatment path, and we sincerely wish her the best of luck, despite the fact that some of us don't agree with her choices. We still support her and wish her the best.
In your case, Nanay,as the others have expressed, your dedication and love for your mother is admirable. My concern is that you're basing your mothers life-or-death decisions on flawed reasoning and misinformation. I'm not attacking you at all - it's just that it's clear to us that some of your conclusions and theories are not based on sound research. I hope you can look deeper and find that we're offering our thoughts here because we do care. If I were in your situation, I'd really try to look at both "sides" to see if I may,in fact, be missing some key information. I know you keep saying you don't advise anyone else to follow your decisions, but you keep blindly repeating the misinformation, implying that it's true and fact-based when it isn't. This concerns me, as LtotheK so aptly said, "This thread is virtually impossible to follow at this point without substative study information, and that concerns me for future readers as what we are doing is creating a library for them."
We support your advocacy for your mother. We sincerely wish her the best. It's not "attacking" to ask you to let down the defensiveness and the preconceived notions for a bit and look for credible research-based information to see if the choices you're making are really in her best interest. If you and your mother decide so, then I personally support you completely. My concern is that you have credible, accurate, and complete information to use when weighing your mom's unique risks versus benefits.
Best of luck to your family during this difficult struggle!
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Even I reacted in the same way when she said, "I think I should have not gone for surgery, I think I dont like chemo". at first, I thought she was giving up and does not care for how I feel, because I so badly wanted her to survive.. but she said, I have to support her through this, and we both have to find a way to meet in the middle..and we did.
thanks for all your concern, but I also feel the same way about you,, it seems you are also not basing your judgements on factual information and not letting your defenses down.
At this stage, we could probably say good luck to us all. and let us leave this to be a peaceful coexistence.
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I suspect that endochrine therapy can be replaced with foods and supplements and work as well. Grape seed extract and mushrooms are being studied now to see if they will work as well. I don't know enough about IC3 though I took it before I was put on an AI as an insurance. But there is nothing that can replace herceptin that I have read about.
OK. Sleep time.
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Sheila,
I know you mean well. but surgery being a cure for BC is a lie. its a complete lie. you believe that that there are circulating cancer cells right? and it becomes detectable only if attaches itself to a tisue..
having cancer cells still circulate, even without a tumuor is still CANCER. There is no cure.
probably just borrowing time. just like I said, Cancer is like RAIN, you can buy the best possible umbrella, but it does not stop the rain, it just keeps you from getting wet.
When the RAIN gets so hard, coupled with strong winds, you can run for a shelter, but still the rain will not stop.
there is no cure at least not yet.
sorry to dash all hopes but that is the reality. SURGERY does not cure BC. nor should always be the first line of defense... you can go ahead and ask your team of doctors.
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What a gigantic decision. I know how you feel. If I have a recurrence, I may go alternative as well. For all the good chemo does, it's scary- all the bad things it does to your body....most of which they down-play. If chemo was more individualized, it would be so much better. But we are years away from those discoveries, I think.
I wish you peace with whatever decision you choose.
Lisa
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its fine to be suspicious ive been suspicious too..anyway, there are really things that we cannot possibly explain due to lack of clinical studies in cases such as my mother's case
if I did not see my mother getting well even better prior to being diagnosed, I would have been skeptical, but she really had remarkably improved well being.. she can sleep well now, her liver spots are gone, skin more supple, arthritis gone, her mood swings gone (oh really good for me-- coz I am her favorite target for her mood swings)..
I am glad I did not make the decision for her.. she did,, I just supported it.. and at nights when just like you I cannot make terms with that decision, I probed deeper and asked and probed some more.. until I have thought this is enough... and probably a coincidence ive seen that remarkable improvement in her well being...
then I stopped all the crazy late night research finding everythign to support her decision.. for whatever its worth, we have had the best year so far, the best year in all of my 36 years on earth
we dont have to deal with nausea, hair fall and other SE of chemo & rads. and now am convinced we could have prevented her ordeal during and after surgery.
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Nice blog sdstarfish!
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At the risk of saying what everyone here knows already--surgery to remove a primary tumor reduces the tumor load and allows therapy to be more successful. (Neo-adjuvant chemo is being used more for large masses, to quickly attack the rapidly dividing cancer cells before removing a then smaller tumor.)
It sounds to me like your Mom had some gross misconceptions about the surgical process, nanajay. Bilateral mastectomies with lymph node dissections are nowhere comparable to having a tooth pulled. Did you and the surgeon not explain in depth to your Mom what this surgery entailed, the length of time in the OR under general anesthesia, the drains, and the discomfort? If not, that was a terrible disservice to her. And we ALL feel invaded and man-handled and a sense of loss of who we are after our breasts are removed. What she went through was normal.
We all have cancer cells in our body at any given time. It's when some mechanism goes awry and they gain the strength to form conglomerations/tumors that trouble begins. When the body has lost the "switch" to kill those cells, or allows them to group together, we develop what WE come to know as "cancer." Perhaps there's something in "alternative" medicine that keeps that switch from failing--that's my best guess. But once the tumors have formed, "alternative" may not be enough to keep one healthy.
Just my thoughts.
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Hi all,
I've been reading the flurry of new posts and a few things came to mind.
First, Nanay, surgery removes the primary tumor, which is where those circulating tumor cells come from. If you don't remove it, it may continue to send out such cells which can then become a distant metastasis (if that hasn't already happened). So, surgery is done first, in most cases, then additional treatments are offered to try to kill any remaining cancer cells in the body.
Apparently, there are some breast cancers that will never metastasize, so, for them, surgery is the cure. And it is still necessary, because even though it will not metastasize, it will most likely continue to grow in the breast. Eventually, it will grow so large it will ulcerate through the skin, and can cause a fatal infection. That's how many women used to die of breast cancer in the past.
Beyond that, what I really do not understand is why people think that certain alternative therapies will work against breast cancer, when there is no data to prove it. (If there is data, please show me...I've asked many, many times.) Meanwhile, we DO have data to show that certain "conventional" treatments work for at least some breast cancer patients, yet doubters refuse to take them, or demand more evidence from their doctors about how or why they work.
Try the treatment for which there is no data, and refuse the treatment for which there is hopeful data.....How does this approach make any sense?
Nanay, you suggest we demand that our doctors tell us how/why conventional treatments work. The truth is, our doctors typically don't really know how our medications work. They may have hypotheses, but the truth is, medications work inside our bodies at a cellular level. There is no way to truly observe this process directly. So, they rely instead on outcomes. If a groups of 100 women with this type of breast cancer take these treatments, X will not have a recurrence...or will not die of breast cancer. If the outcomes are better than what they would be without treatment, or with different types of treatment, they recommend the best-outcome treatments to us.
I also object to the characterization of chemotherapy as "poison" or "toxins." I think the saying goes something like: "The difference between medicine and poison is the dose." ANY medicine (actually almost anything, including water) can kill you if you ingest too much of it. We're prescribed just enough chemotherapy, or Herceptin, or anti-hormonal medication to try to kill our cancer cells, without killing us.
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Nanay, I just have to jump in and say that most women who do alternative medicine communicate by pm. They end up taking to much flack on the boards and I truly do understand why you're wondering why you bother. I support anyone's decision to give alternative a try. As a matter of fact, I can guarantee that's what kept me alive this long. For someone to think that cutting of a breast and doing traditional therapy is going to prevent mets, is quite frankly, delusional. If it were that easy, then the word "cure" could be used. It is after all, just a game of hit and miss and statistics. Best not to get into arguments about it. With a subject as sensitive and life-threatening as cancer, there isn't going to be a winner one way or another. When push comes to shove, all we can do is what we think is best. What I find truly sad is that when it comes to mets, many rely only on traditional therapy. That's heartbreaking to me. The treatments available don't have a very good track record. I don't call living an extra couple/few months successful treatment, but that's just me. Everyone is going to defend their choices to the death....it's the only way to rationalize. Who could ever get over it if they thought they made the wrong one? I truly wish the best for your mom (and wornoutmom). You are far from alone in thinking traditional treatments suck.
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hi annew,
thanks for giving some roomf or alternative in your thoughts,. truly appreciate that.
back to the subject of tumour load.. this I agree surgery reducest the tumuor load. but what I am saying is it is also possible to work on the tumuor to make it dormant and then attack it later.. then possibly surgically remove it later.
there is no question about surgery helping to reduce the tumuor load.
my argument here is the sequence of treatments and collaborative efforts of the surgeon, oncologist and radiologist -- always does not happen.
look its just us talking about sequencing of treatments.. aside from the Cochrane database is there any other study that talks about sequencing of treatment? as well as also HONESTLY studying alternative theraphy (with or without conventional theraphies)?
who knows this could be the missing link in conventional medicine?
it gives me real hope that am beginning to see that there are some studies on enzyme theraphies as well as I3C/DIM..
until then agressive treatments is not for us..
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Hi Gracie,
I'm going to go out on a limb here and say that probably everyone thinks traditional breast cancer treatments suck. It does suck! Majorly! No question about that.
What I find truly sad is that when it comes to breast cancer, some forego conventional treatment that has supporting data showing that it does work (of course not 100% of the time), to pursue instead all manner of unproven, disproven, and sometimes downright harmful "treatments," based on advice from some underground clique of private-messaging people who often "just happen" to have commercial websites or otherwise are financially vested in a particular supplement, trampoline, juicing system, alternative clinic, book series, or whatever.
Why not discuss it here, out in the open? If one has firm, solid beliefs in a particular treatment, I'd think they'd have the courage and the data and the compassion to share it here, in public, where we could all learn and benefit. We don't have to agree or change anyone's mind. Most of us are mature enough to read your "side" and present their "side," hopefully with data to back it up, discuss it back and forth, and take from the discussion a better understanding and make their own decisions without all the bully/meanie/troll/attacker accusations. The "arguments" are generally about the facts, not about the person, so we need to remember not to take things so personally. JMHO
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beeb75,
as I said before , data vs no data, prior to my mother's DX , I would easily go for "data" specially those that have properly gone through the process
hypothesis, rounds of testing (clinical trials) with mice, then tested on women in developing countries (who would not complain about being on a trial medicine), then the controlled realse of these meds to a randomized group.
but as I said, this is me versus my mother's decision-- I am glad that she stood by it and I found the sense to support her.. and also try to back it up with data
but in my frustration, there is really no data to support alternative, and even if there is some data to support it, it will be drowned by the millions of data that supports conv medicine..
who do you think backs up the clinical trials for Herceptin? of course it is the manufacturers themselves..
where is truthfulness, honesty and unbiased opinion in that scenario.. ?
and even now am telling you that my mother is ER+/PR- Her2+++ with BRCA 2 gene mutation, whilst you agree that it is an agressive cancer,, you are trying to prove that we have made the wrogn decision, when I have been telling you success for us is seeing her happy for at least one year... that her well being has improved..
and still you will not let up in promoting conv medicine even if it meant making my mother grossly unhappy.
dont you see the point? everybody including me, is only defending what we felt is right for us.. and I am not going to make you follow our regimen just for me to feel great.. I would want you to be happy with your decision and I want to see you live and surpass your life span... in the same way I wanted it for my mother too...
she is risking quantily of life for the quality of life she is experiencing now.. but what the heck.. I think I can learn to deal with that.. its so hard for me too.. I wish she will live longer..
but then seeing her happy with the best quality of life these alternative treatments is giving her.. I think I can deal with that...
and maybe maybe after 5 years, I can say she is CURED (at least by the 5 year standard)..
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thenewme, your post says everything I wanted to say, but better, so I've deleted mine.
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I second that, thenewme:
"Why not discuss it here, out in the open?"
I've never understood why so many in this thread have claimed that those who believe in alternative treatments only communicate by PM, or on secret message boards elsewhere, because they will be "attacked" here. This is an internet forum...no one is going to jump through your computer screen and sink their teeth into your neck. Everyone should be able to present their arguments and read others.
Only with all the information available will we be able to sift through it and see what info is good and what is bad.
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gracie
I believe its about time all ALT women come up in the open. I agree with thenewme, if we honestly believe that this can work for us, that this is success for us, without setting false expectations and sellign trampolines, books, supplements to anyone..
then why not? if there are millions of conv medicine girls here that are reading it, it is possible that people who are genuinely interested in alt medicine -- then let us take the risk..
for all the conventional medicine girls,
if you can promise not to be threatining or not laugh, insult or sneer to our posts, we will stay here.. please remove all the misconceptions and imagine at least for a day that there would be no trolls selling you all different products..and hope at least for a day that these are genuine well meaning compassionate natural girls who just would like to share their thoughts..
and please be prepared that in our attempt to explain our side, we could possibly offend you too, because you are doing exactly what we are trying to avoid to do.. in so many reasons that I have already explained here.. and that you are trying to say us baseless, hopeless, unintelligent, less or more of this or that thing..
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Absolutely agree. I personally can't live with the fact that traditional medicine for cancer treatment is the best we've got......it's just unacceptable to me, so I look for alternatives. As a metster, I may have a different perspective. Our choices are few and far between.
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alright if you really wanted data regarding alt med, I will give you the best that I have so far.. take it as if my mother is a clinical trial
her 2OH and 16OH ratio is 0.55 way below the ideal range of 2.0
she did her diagnostic tests last March 2010 and has been on alternative theraphy since then,
she just took the same diagnostic test last week (one year after) and the results will be released in 2 weeks time.. lets see if the alternative theraphy worked to bring it back to the ideal range..
add to this the general improvement of her well being which may be hard to measure..
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The five year standard does not apply to breast cancer, though if your mother makes it to five years that will be a great thing. I hope she does.
As for the whole cure thing, I know it is common wisdom here to say there is no cure and I just disagree with that. For some women, there is no cure. But most women with breast cancer go on to live their lives without recurrence and die of something else. I think they've been cured. And if that isn't a cure, well I hope I have such a not-cured.
And I also disagree with a common theme that since women go through mainstream treatments and still die, the mainstream treatments aren't worth anything. One thing we know is that the behavior and characteristics of breast cancer differ from woman to woman. Treatment is a battle between the cancer cells and the medicines. For most women with breast cancer, the treatments are stronger than the cancer cells and they live out their lives without a recurrence. For some women, the cancer cells are ultimately stronger than the treatments, but they extend their lives with treatment (I know a woman who has lived with metastatic breast cancer, never NED, for approaching 25 years. She has been receiving various treatments throughout.). And for a very small number of women, the treatments do pretty much nothing and the cancer cells are just too overpowering (I knew a woman like this and she died quickly, a highly unusual case.) For women in the first two categories, the treatments have done a tremendous amount of good. The fact that too many women still die of breast cancer doesn't negate what the treatment has done for these women.
Of course, it isn't good enough. It isn't good enough for any of us. We need better.
And nanay, you are backtracking again about the whole surgery thing. First it was your mom should have been offered an AI instead, and now it is that its the sequence and not the surgery itself that is the problem. This is the sort of thing I was referring to.
I understand that this has been your mother's decision and you are supporting her as best you can. This puts you in a difficult position and you are doing your best with it. I am reading between the lines that she hasn't always been easy to live with and perhaps she has had depression. I am glad she is feeling better.
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its almost 12 midnight,, very well past my bedtime, hohumm
goodnight everyone! 0 -
This is not necessarily a disagreement between those who pursue mainstream and those who go alt. Many women do both. And many cancer centers have complimentary medicine centers within them (I know mine does).
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Member of the club, that's what I find heartbreaking......ONE woman you know who has gone on to live 25 years with mets.....one. The rest likely fit into that 2-5 year statistic.
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Gracie,
Back at ya! You said, "I personally can't live with the fact that traditional medicine for cancer treatment is the best we've got......it's just unacceptable to me, so I look for alternatives. "
I SO agree with that!!!! Even the researchers, doctors, and other experts agree that the current options are disappointing and fall wayyyy short of hopes.
My cancer is very agressive triple negative, and I've done the whole shebang of conventional treatments. Unfortunately, that's all conventional medicine has for me. TN doesn't have a targeted treatment like the other BC types, so that's precisely why I come to this forum - looking for useful tidbits that can help me improve my odds for no recurrence.
PS - Beeb - I have to disagree with you about chemo being a poison/toxin. I think it IS a very toxic and strong poison - and that's exactly what I wanted to give that damn tumor that was trying to kill me! I welcomed the poison, despite it's difficult side effects.
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MOC,
you are the one that is backtracking to my post about AI, TAmoxifen which are all classifed as endocrine theraphies,
my mother was never prescrived with AI, she was prescribed Tamoxifen,, I just used the cochrane studies on different endocrine theraphies (all sort of possible combinations and permutations),, as a case study,, just for us to discuss on the same page..
to prove one thing, that doctors does not exert collaborative efforst to talk to each other.. because that could be the missing link
you see I have not truly given up on conv medicine..
am supporting alt medicine but not truly giving up on conv medicine.. I will repeat this to you again and again...
the study about Tamox with surgery and Tamox without surgery.. as I said, almost hit home, but it was too late.. because my mother has already been operated anyway..
the studies I have posted here are just CASE STUDIES for our discussion for me to prove that not all doctors are quite sure of what they are doing..
and you also agree with that right? there are no absolutes, no doctors have answers to all the questions..
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thenewme, don' t feel bad. The targeted treatments aren't all their cracked up to be.
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if each doctor does not have answer to all the questions, then it makes sense that they all collaborate and use their combined knowledge to find the answer...(maybe this is also what we needed to do--- don't you think)
I guess those who are in clinical studies do that.. but the doctors who actually see us--the radiologists, the surgeons, the oncologists.. when you first come to the Cancer Center
do you see them talk in a conference room in front of you-- to decide on your future? more likely not...
this is what I am driving at... and for me, while this conscious collaborative effort does not exist yet..
I will go for non-aggressive defensive alternative treatments and not agressive traditional treatments..thats my point.
specially now that am seeing these improvements in my mom's well being..there was a time when I was as skeptical as you are, but it is not because my mother over dominated me like she usually do, but instead she won me by the improvements ive seen in her.. she has become easier to live with is probably the best term..
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haaaa! am really sleepyam getting addicted to this thread!
good night really!
love you all gals! goodnight!
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