Survivors who have used only alternative treatments
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Nanay,
I am not at all attacking your mother's decisions. Truth is, if I were her age when I was diagnosed, I certainly would have made different treatment decisions (like having a lumpectomy instead of a bilateral mastectomy, and perhaps taking a chemo regimen with less-dangerous potential side effects.) I think you are absolutely correct that what's most important is that a person is comfortable with the decisions she makes... however, it's almost as important that she is fully aware of the potential benefits and potential risks of each decision. It is here -- with the potential benefits and risks -- that I personally become unsure about alternative therapies, particularly in comparison to conventional ones.
Getting a diagnosis of breast cancer is like being in a building that is on fire. You have to decide what to do, and your chances of surviving depend very much on how bad the fire is (ex/ how far it's spread and what kind it is). Let's use wornoutmom's stats as an example. Someone like her can:
* Hope the fire doesn't kill her (aka, do nothing.) Chance of surviving = 37 percent
* Jump out of the building (do conventional treatments) even though she will surely suffer some short-term side effects, and could possibly suffer long-term side effects. Chance of surviving = 73 percent; Chance of dying from the jump = less than 1 percent
* Try an alternative escape (alternative, "natural" treatments.) Chance of surviving = unknown; potential harm = unknown.
This is pretty much all the information currently available regarding breast cancer treatment success and side effects. (Edited to add: Actually, this doesn't include info on Her2 cancers and Herceptin, which would likely make the no-treatment outcomes worse, and the with-treatment outcomes better. The data above is from Adjuvant Online.)
If a person's goal is to live as long as possible, without breast cancer, the science-based decision seems obvious, doesn't it?
I recognize that some will prioritize feeling good now, over being alive later. And that some will "feel" that they are the lucky 37 percent who will survive without treatment. And some believe that alternative treatments will confer some, or even greater, benefit to them. I respect each and every woman's decision.
P.S. to thenewme...chemo may poison your cancer cells, but if that saves your life, how can you characterize it as anything but a life-saving medication?
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nanay I don't understand the HER2+ results. I had the FISH test. Anything greater than 2.2 on the FISH test is considered HER2+ postive. ( I was 15). The IHC test anything above/between 2-3 is HER2+. Which test did your mom have? I don't really understand the results you posted.0
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When you hear or see statistics like: "Herceptin *does* raise your chances of non-recurrence by 50%", the first question to ask is 50% of what? The second is if the actual 5 or 6% (at best) improvement in recurrence rate comes with a 1 or 2% risk of a potentially fatal and certainly debilitating side effect, is the risk of that side effect on top of everything else that comes with the Herceptin and chemo worth the possible benefits to you?
For some women, it will be. For others, it won't. We each need to make the choice that is right for us without recriminations from others who may have a different risk tolerance, or a different set of risk factors.
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Nanay: I thought you were going to bed? haha This thread has been so busy.
I think cultural differences come into play here. I remember hearing a woman from India who lived here in the U.S. say her mother discouraged her from doing chemo, because a lot of women in India were against it. Like you said, you have friends who could not afford surgery and live many years with their cancer. In societies where most people do not have access to modern healthcare, they learn to embrace alternative ideas that are readily available. They then fear more modern treatment that they know nothing about.
Nanay, you have a difficult job of supporting your mom and trying to help her while she is making her own decisions, it sounds like. I wonder if you were in her shoes, which way would you go. Many daughters find it hard to stand up to their mothers and disagree with them.
I hope you will stay on the board. I feel like the women here know more about breast cancer than anyone in the world. Some of them have seen the best doctors in the world, at some of the best cancer hospitals, like MD Anderson, and they will share everything they learned with you. And I agree with Member, the good news is many women go on to live long, healthy lives after being treated for cancer. That is pretty much a cure for them. But until we get to the point where everyone can get that outcome, we need to keep searching for the cure.
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Just want to share my oncologist's opinion on surgery: she believed I was cancer free and in the clear the day of my surgery (removal, clean nodes, wide margins). The rest, as they call it, is "insurance".
A lot of doctors believe surgery cures cancer in some patients.
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Nanay,
IMO, what your words are saying on this thread are clouded with such defense it's difficult to see the effectiveness. Although I admire your tenacity, passion and love for your mother, all of us with BC struggle with the same questions we may never have the answers to. We can research, question and make the best decisions to treat or not to treat. There are no wrong moves in that process as each of us are as individual as our cancers are. To out right say or suggest someone COULD be making a wrong move in any direction based on what you perceived as truth is simply ludicrous.
Also, many cancer victims considered themselves "survivors" because of the physical and mental toll the cancer and/or it's treatment has inflicted upon them. Not to be confused with a lie because there is no known cure yet. Personally, I'd rather refer myself to a "pioneer" as opposed to "survivor" because I was lucky to make it into the first group of early stage Her-2 positive BC who received Herceptin in an adjavant setting. And BTW: This group is being studied and they are talking CURE! Wishing you and your mom the best.
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Gracie, i totally agree with you. The woman i know who has had mets for 25 years is an outlier, most women with mets fall within the 2 to 5 year range. However, the number of women living longer than that, sometimes much longer than that, with mets is growing. But I also agree with you that it is NOT acceptable. NOT good enough.
(I do have the perspective of caring for my mother when she had brain cancer and I can tell you how much I wished for even that kind of prognosis for her).
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Nanay - I have to disagree with your assumptions ( since that is what they are) yet again.
Firstly - many women in the past have had surgery ONLY (typically a mastectomy), since many years ago there was no further treatment option....and they have survived many, many years.Just look at the thread about long-time survivors and you will see.Surgery is still considered to be the first-line treatment for breast cancer.
Secondly, there is indeed collaboration between surgeons, oncologists and radiotherapists - it is called the tumor board in the States.They discuss their patients' situation and future treatment options, but obviously not in front of the patient.
Where have you been getting your ideas from? I don't know why you decide these things to be the case when you really don't know.
I am not attacking you personally, but continuing in a discussion which should be rational, and not just based on opinions.
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I think the word survivor should be sparingly used and does not belong in the early-stage cancer vocabulary. It is true that treatments can be barely survivable (and my case is proof of that - literally) but I am not a cancer survivor.
ANY BLOODY IDIOT survives a Stage IIB cancer tumor in their breast. More people die of a cold. I was never going to die of this tumor as it stood. I could have died if I had suffered a heart attack or been in a plane crash. Had I had either experience and lived, then truly I would have been a survivor.
I wouldn't mind this little bit of make believe if it didn't strike me as part of the greater fiction of the breast cancer world in which organizations sue to retain "ownership" of the word "cure" the color is baby pink and patients are described as warriors while others say it is all about "the boobs" when it is really about the vital organs - the liver, the lungs, the bone and the brain - not the stupid "boobs." This kind of window dressing adds to the misperception in the general public that there already is a cure or that we are very, very close to it. It also keeps pressure off of policymakers, pharma, research, science, the medical field and advocacy groups to stop multiplying and making money off a sickness and start looking for ways to become irrelevant by searching for a cure. So many people stand to benefit from a cure - so many stand to lose!
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Veering back to wornout mom's original post...right now, there's a similar thread on the boards at Young Survivor's Coalition (for breast cancer patients under 40ish.) A woman has posted that her sister has been diagnosed with breast cancer that has spread to the lymph nodes and wants to do alternative-only treatments. I thought these two replies in the thread were particularly poignant, so I am putting them here. If these don't say it all....
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PLEASE PLEASE PLEASE have your sister do some form of traditional therapy - I lost my younger sister nearly one year ago because she was so hell bent on alternative treatment - she left behind her three precious young children and lost her life - from go to wo it was nearly exactly one year that she survived - her cancer had also spread to her lymph nodes.
There is a place for alternative therapy but it should not be the ONLY therapy - surgery removes the cancer and chemo kills the other little bits that are floating in your system.
By the time my sister got to the hospital the cancer had spead to her brain, lungs and liver she had no chance - she was 35. She was scared of surgery and chemo but she did not think she would die....................CANCER is not the flu - please talk to your sister and show her my post.
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My sister also refused traditional treatment after her mastectomy. She chose diet, juicing, and supplements instead of chemo and radiation. Not even two years later she is now in the hospital with mets all over and liver failure. I wish I could turn back the clock and somehow make her go. I couldn't convince her two years ago to get chemo and radiation and now I feel like I should have somehow pushed it on her more. When she finally went to the doctor a month ago, the doctor said it's too late there is nothing he can do. She is suffering now and says she was stupid for doing what she did. She has three kids, she's 37. I am due in June and deep down I know she will not make it till June to see my baby unless there is a miracle. I don't belive that there is a diet that can cure cancer, it all depends how aggressive the cancer is. My sister's is ER+ and Her+ grade 3.
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Read the whole thread at:
http://my.youngsurvival.org/discussions/newbies2/2011/03/23/alternative-treatment
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You know Beeb, as horrible as those two stories are, who's to say they wouldn't have been in that position regardless. So many women have gone from treatment to mets in a year or two that it's hard to say. Again, a crap shoot. I was lucky, I went 10 years without being diagnosed with mets (I actually think it's more like 6 or 7 but no one would listen), but I know many women who didn't even get 2 years....and I'm not talking extremely advanced cases either...Stage 1 or 2. No wonder a person can drive themselves crazy. There are way too many variables, of which no doctor, or layperson can be remotely sure of. I can totally understand those who have lost faith in traditional treatment. It seems by some of these posts, that we make the assumption that surgery removes the source, and chemo/radiation remove the rest......sure, sometimes, but not always. Chemo is not fool-proof; sometimes it works, sometimes it doesn't.
Edited to add: back in the day (1996), a Stage IIIb prognosis (which I was) was horrible. I had 20 cancerous nodes. I didn't follow through with conventional treatment (did some, not all) and managed to still be here, well outlasting my oncologists initial prognosis. There are no rational explanations for this stuff. Sometimes you just get lucky, or unlucky as the case may be.
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Beeb75: You are right those threads say it all. I have seen a couple of other postings that are similar--So sad. I think another name for "alternative" treatments should be "experimental" because there really isn't much evidence that they work.
Gracie: You are right, we never know whether a treatment is going to work. Then you get into the quality vs. quantity of life issue. You may do chemotherapy and become very sick and then go onto progression. If you are triple negative and go to stage 4, you may only have a few months. But I would rather take the chance that the treatment works.
1Athena1: If I am reading your sentiment right--If we suddenly got a cure, then a lot of surgeons, drug companies, etc. would have no business. It's like a friend of mine who had breast cancer 15 years ago said, when I said I was surprised there was no cure yet. She said "why would there be? Breast cancer is big business." I know it is a cynical viewpoint, I want to believe there are many in the medical field truly searching for the cure, or something close to it.
I believe there is a lot more money spent on AIDS, which is a completely preventable disease.
Nanay is sleeping now but looks like she will have a lot to read in the morning.
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Gracie, the point is: no one is offering ANY guarantee against relapse. No one. I have NEVER seen a woman on these boards (maybe a troll, but they don't count) offer either Western or complimentary/alt medicine as such. Do I breathe easily now that my active treatment is over because I threw the Western sink at it? Trust me, I don't. and I'm a gal who blended Western with complimentary.
Our point is: if you exercise all recommended tx options, at least one will know she did EVERYTHING she could.
That is the point. Rock on, Beebe. The tragic story you tell is sadly common, although many women refuse to believe that.
As far as chemo/rads/hormonals being awful - is it worse than cancer? seriously.
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Gracie, you're absolutely right, the treatments don't work for everyone. But the women who don't try them don't even get the "better odds" that come with the treatments. They put themselves in a pool where, say, 50 out of a hundred women will be alive in 10 years, as opposed to 85 out of 100. So 35 out of a hundred women who refuse treatment will pay with their lives. These are real women, like those sisters we read about above.
Athena, I think your post is a little misleading. You say "ANY BLOODY IDIOT survives a Stage IIB cancer tumor in their breast"
While it's true that the cancer is not immediately life-threatening at Stage IIB, without treatment, about 50 percent of patients with this stage of cancer would die of breast cancer within 10 years. So surviving that long or beyond is still a good feat!
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People get mets weeks after finishing dose-dense chemo and then rads. It happens all the time. BCO is full of stage IV sisters who got a met dx a year or two or three after completion of treatment for early stage disease. There have been Angels who went so quickly that you have to suspect it was the treatment that killed them. These are not rare cases.
Going on anecdotal evidence is a shell game, though, and you cannot even try to win or lose a conventional vs. alt argument on that. There are cases of death either way and cases of disease-free survival either way. When there is no known cure, a disease does what it likes and so just about every outcome is possible - assuming the visible invasive cancer is surgically excised first* - otherwise an invasive cancer has a 100 percent death rate (the outliers being the exceptions that confirm the rule). I thank God for surgery, as IMO, it is the closest thing we have to a cure for some BC - we just don't have the knowledge to know which cases have been cured that way.
*DCIS may be different. Some DCIS need not be excised but this is only known in retrospect.
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Lynn, that's what bothers me the most. Dying of AIDS is almost unheard of now. No time or money was wasted making sure nobody died of that anymore. Political correctness maybe? Why is it o.k. to die of cancer, but not AIDS?
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Beebe - I made certain to say in their breastto clarify that I refer to the cancer as it is at dx - not as what it could be. If you die, you don't die of Stage IIB - you die of Stage IV, and you don't die because of a tumor in your breast, but because of a tumor in one or several of your vital organs. By contrast, if you don't die when the plane you are in crashes into the water, you are truly a survivor. Big difference. In fact, I am surprised that more people who have truly survived experiences that could have killed them don't get more offended by this cancer lingo.0
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and while I'm perched on the soapbox: breast cancer is a beast, no doubt about it. but let's remember that thousands of human beings across the world face diseases without any public knowledge or even funding for a cure. My uncle has angiosarcoma - cancer of the blood vessels in the face. How many docs work with that? About eleven: in the whole nation. His doctor readily admits little is known, so they alternate disfiguring operations that essentially carve away his face with drugs that eventually stop working.
ALS. MS. Scleroderma. hell, even glioblastoma: brain cancer with a usual survival rate of 24 months - and that's for 80percent of those patients.
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.....and Athena, I agree. I can't speak to DCIS, but similiarly, my godson had a testicular, encapsulated tumor surgically removed. Great prognosis.....even told him he was cured. He passed away three years later when it metastized to his brain.
Edited to add: elmcity, I couldn't agree more. To me cancer is cancer. I don't care where it is. It's everyone's worst nightmare.
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gracie1: I agree. I would bet many more women here is US die of breast cancer than die of AIDS. And I just heard something about 1 billion being allocated to AIDS by congress? It made me try to want how much is being dedicated to breast cancer. I don't get it.
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Gracie, I cannot believe your ignorance. AIDS is TRANSMISSABLE through human contact - sex, sharing needles, transfusions. It is not some internal Jack the Ripper that starts in your cellular structure. Education went a long way - exponentially, one can argue-- about declining rate.
As for political correctness: read the history of how the gay community was decimated with this awful disease. Watch "Philadelphia". Have some respect.People of any illness are in this together, on this human journey.
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Gracie:
It might be tempting to answer your question by saying "because so many people would stand to lose billions" (and sometimes I want to say that) but that cynical argument doesn't hold. The truth is, medicine seems to have made much more progress in the fight against infectious disease than in cancer. AIDS just had an etiology whose characteristics and treatment were better understood. I really think it comes down to that. Cancer, on the other hand, is unique. It is its own branch.
It's also more frightening when you are dealing with an illness that has a 100 percent death rate, as AIDS did. You can't even say that of breast cancer, untreated, since so much of it is non-invasive and may possibly not grow and become necrotic.
Edited to note: I think a few of us crossposted - awful story about the testicular cancer.
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Whoa! elmcity, I'm not being ignorant or insensitive or homophobic or whatever. I'm saying that if people with cancer rallied as much as those who had AIDS did, we'd be further along. I meant no disrespect...sorry if it came across that way. You do know that people with AIDS survive many many years now, right? Look at Magic Johnson.
ETA: yes, I'm not stupid enough to think these two diseases have anything in common other than taking (Past tense for AIDS) way to many lives, but I can't help but think the squeaky wheel gets the grease.
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elmcity69: I believe AIDS is preventable. If you used a condom when you have sex, you won't get it. If you don't share needles, you won't get it. A person can do a whole lot to eliminate their chances of getting AIDS. What could we have done to prevent ourselves from getting breast cancer?
I don't think anyone was being disrespectful of people who have AIDS. I have seen the movie "Philadelphia". I just wonder why the government does not allocate as much resources towards curing breast cancer.
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I wonder too....for all cancers.
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1Athena1: Triple Negative metastatic disease pretty much has a 100 percent death rate. And you probably have a lot less time than someone with AIDS would have.
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'Any bloody fool could survive Stage II breast cancer'....I am offended by that statement.
I think I know what you are getting at, but that was not very sensitively put.
Actually, if you leave a tumor in the breast, with no other treatment,it frequently becomes 'fungating', which means it breaks through the skin and becomes ulcerated and stinking.And the infection therein can kill you.
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Just another thing I find interesting. At least twice a week, canvassers come to the door for the Kidney Foundation, MS, Lou Gehrig's, Liver Foundation, etc. Never ever for cancer. That disturbs me in two ways. One, that they don't bother anymore (perhaps because nobody donates) and two that nobody donates. It's almost like they've given up. It never used to be like that. I'd get calls and canvassers all the time for cancer....not anymore. It's only speculation on my part though, but as a former cancer canvasser, I definately got the vibe that people got sick of donating to something that never seemed to come to fruition.
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Lynn18 - I know that. I was talking about breast cancer in its totality.
Gracie: My speculation: Cancer is no longer grass roots-y because the organizations have become too rich and also too pompous. They have lost touch with the constituency, IMO.
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One thing I think urgent to add. There IS some logic to this stuff. Yes, we are all individuals, but there are long-term studies and statistics. In fact, we are sitting on one of the most amazing research initiatives in cancer history: the Tailor X trial. It will show which of the ER+ patients does well with and without chemo based on the Oncotype test, which has been a revolution in cancer care. It took what looked like a really bad situation in my case and showed that I have a swinging chance at being cancer free in 10 years. Is is 100%? Of course not. But it is a massive, aggregated database of profiled women, and I happen to look like some genetically and therefore I was able to be diagnosed differently than I would have been 15 years ago.
Doctors operate on statistics because they are, to some degree, reliable. They may not be what we want them to be--higher percentage difference in outcome with endocrine therapy, for instance, but they ARE measured. This is, from the logic standpoint, just not the same as saying "you get it or you don't". Cancermath and Adjuvant may be faulty, but they are not made from nothing. Many will argue them, but the are the foundation for every one of our oncologist's approach to our treatment.
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