Why I chose conventional treatment

caralex

Is there a paper you could link to, on that Sloan Kettering study, Voraciousreader?

caralex

Is there a paper you could link to, on that Sloan Kettering study, Voraciousreader?

voraciousreader

http://www.ncbi.nlm.nih.gov/pubmed/24634376

Cara...this study is a "glimpse" of what I refer to. There are more studies underway....but this study specifically speaks to the "communication."

caralex

Thank you, Voraciousreader. I'll take a look!

C.

edwards750

For your information Steve Jobs came to St. Jude for treatment. I live in Collierville which is a township outside Memphis where St. Jude is located. I have several friends who are nurses at St. Jude one of who was involved in his treatment. I don't read the National Enquirer. His condition and treatment was practically public knowledge here because he was moved to the front of the line. So you may not know about his condition but that doesn't mean I don't. Don't appreciate your comment.

Diane

edwards750

Of course he didn't have breast cancer. Alternative treatments don't just apply to breast cancer. There's no need for these sarcastic remarks. Everyone has a right to their opinion.

Diane

wrenn

Diane, I think the point about Steve Jobs was that he was one person and so an entire form of treatment (or non treatment) should not be judged by what happened with one person. One of the complaints made about alternative treatments is that results are simply anecdotes. An anecdote regarding conventional treatments should be judged by the same standards.

I didn't see anyone being sarcastic but simply pointing this out. And really it wouldn't even count as an anecdote since you yourself were not privy to his chart. And hopefully your nursing friends did not breach patient protocol by sharing what they seemed to know.

Lily55

VR thank you, very interesting, maybe there will be genuine integrative protocols as standard treatment in decades to come .........circulating tumour cell tests look for the factors that trigger mets or switch on the process of metastasizing, so some of this info is available and in use now, albeit not mainstream treatmen

voraciousreader

Another interesting thing that our researchers at Sloan Kettering found...is....they located a marker in the blood that they believe shows a metastatic progression before it becomes symptomatic or shows up on imaging. While there are blood markers today, most are unreliable. Once they can duplicate their finding, hopefully, a protocol can be changed more quickly.

I do not wish to speculate about Steven Jobs' cancer treatment. That said, it is a common held belief that his life was cut short because of the treatment decisions that he made.

Read Paul Offit, MD's book, Do You Believe in Magic which is a very interesting book that debunks many alternative treatments. He, just as the US Senate, is widely critical of Dr. Oz. I go bonkers when I hear my 90 year old mom swearing by something she has watched on his show. Again, knowing how complex cell anatomy is, I am very gun shy about testimonials. I tell her, "Give me numbers...not words!"

Lily55

Who is Dr Oz, i thought he was in a soap opera? Anyone considering non mainstream options should research them thoroughly first as some are snake oil, but equally others are effective.......its a lotof work at an emotionally fragile and vulnerable time of cours

voraciousreader

BTW...I strongly recommend watching the films Lorenzo's Oil and Extraordinary Measures. Those films give movie goers an understanding of how complex cell anatomy is. The DH's endocrinologist's patients are featured in Extraordinary Measures and the Harrison Ford character is a composite of our doctor. They sat next to one another at the premiere.....

voraciousreader

Lily....the problem is that there is little research to study! The DH's doctors often complain about the lack of research dollars...AND....here is the biggest drawback in researching alternatives....The way studies are designed, you must first offer standard of care and then add something to it. So...if you want funding for a clinical trial, it must first and foremost be ethical AND then it must be conservative enough so that you can field enough people to join the study so when they get the results it will be statistically significant. So...that is one of the reasons why there are so few alternative studies.

With orphan illnesses, it is a little easier to get orphan treatments. They come under the FDA's "Compassionate Use" category. But make no mistake, even "Compassionate Use" treatments are strictly researched and documented. The DH is a rock star in medical literature!

labelle

I'm still trying to sort out conventional from alternative therapies. Seems to me almost everyone on these forums has or will have surgery. That is definitely conventional treatment. Almost none of us will or have foregone surgery, choosing instead to rub a herbal concoction on our breasts to "draw out" the cancer. Seriously, I downloaded a free sample of a book on my Kindle by a woman who claims to have cured her breast cancer by doing just that. No, I didn't buy the full book. Not going there. LOL. But that is truly alternative therapy!

But what about diet, vitamins and exercise? Meditation, positive feedback? Are these alternative therapies? Should we pass on them and rely solely on true conventional therapy. I think not. They won't hurt anything after all and they might even help.

To me the bigger and harder issue is how much conventional therapy? I don't think choosing minimal therapy is alternative therapy. In the 1950s when the only treatment option was surgery, 60% of breast cancer patients were cured. Surgery works! I like the idea that at least 60% of us were cured by our surgeries alone-probably more because we detect and act on the detection of breast cancer much sooner today. For those 60%+ everything else we do is either extra insurance or a waste of time, energy and exposure to toxins for nothing depending on how you look at it. Of course the real problem with this is that we have NO way of knowing whether we can safely skip the chemo, radiation, hormones therapies, all of which have their own not so pleasant side effects and problems. Some women even die not of the breast cancer, but of the treatments. Damn. In any case, I'm personally trying to work out all the pros and cons of various treatment options.

I can't just blindly say give it all to me. I want everything you've got, chemo, radiation and hormone therapy, even now that my SNB showed one positive node out of twelve. My personal familial experience with breast cancer, tells me we need to look carefully at out treatment options before signing up for everything. My mother died of breast cancer 8 years ago. She did everything. She suffered thru chemo (and she did suffer), got every bad side effect imaginable with radiation, had all her lymph node removed/dissected, developed painful lymphodema, developed many infections, was constantly plagued with mouth sores and fungal infections, all as a result of her treatments, not her cancer. She had reactions to Tamoxifen, then used AI plus something to help strengthen her bones and she suffered more, with pains that made it impossible for her to even get out of bed many days. Long story made shorter: she died within 4 years of her diagnosis.

And when she realized her cancer was going to kill her, even though she'd done everything, she TOLD me and she wished she'd spent her last 3 years doing something else other than being sick and incapacitated due to waging non-stop war in her body. So conventional therapy won't work for some of us (and that sucks) beyond surgery, conventional therapies like radiation/chemo/ hormone aren't even needed for many of us-surgery cured us-but we don't know which of us- oh, to have a really good crystal ball! That's the really sucky part IMO. So I'm leaning toward doing some of the conventional things but probably not all of them, minimal conventional treatment as opposed to throwing everything at it, but not blindly like my mother did, doing whatever her medical teams suggested at every stage. Still, I don't think choosing minimal treatment makes me foolish or is akin to playing Russian Roulette or even really very non-conventional (I didn't buy the cancer sucking boob balm,I had surgery instead, LOL.)

While it is horribly sad to read of someone whose cancer had returned or spread because they don't think they pursued an aggressive enough treatment plan, it is also pretty damned sad to have spent the last years of your life totally miserable with no quality of life, not due to cancer, but due to the treatment. It's pretty sad to watch too and those people, like my mother, aren't here to write, " I wish I'd done less, that I'd not been too sick from treatments to do anything I enjoyed."

I think we need to respect everyone's choices. I understand the desire to try EVERYTHING but I also understand the need to sometimes step back and say, the potential payoff for some things isn't worth it. I don't think we can say someone should have or should not have done this, that of the other thing in regards to treatment. It can go either way no matter what we do. There is no right answer for this disease, but I don't think putting down or second guessing others' choices is the way to go here-and at times this thread seemed to me to be doing that. I'm just trying to do nothing I'll regret. Sorry if this is a bit of rant, my own diagnosis has triggered a lot of emotional crap, stuff I thought I'd gotten over with my mother's death. I think if I'd not witnessed what she went through, I might be in the do everything no matter what camp, but I was there, I witnessed it and I know there can be a big downside to the do everything plan.

SelenaWolf

And there's too many people willing to exploit vulnerable, sick people.

Take the recent judgment in Ontario where a court ruled that a hospital could not ask Children's Aid to intervene with an aboriginal family who wanted to pursue traditional native medicine for their 11-year-old daughter who is suffering from leukemia. With proper treatment, the girl has a 95% chance of survival. Without it she will die. The court ruled the family has the right to pursue native treatment.

There are so many problems with this in a legal sense:

1) the family is NOT pursuing traditional treatment; instead they have enrolled her at a clinic in Florida, run by a quack who is treating her with IV Vitamin C and massage therapy. Not only are these NOT traditional native treatments and they will not help with her cancer, which will continue to progress.

2) the Charter of Rights protects religion and spirituals beliefs, as well as choice. However, as a parent, do you have the right to choose for your child, when your choice will likely result in the child's death? Is your child your property, which you can deal with as you see fit or someone with rights of their own that must be protected until they are of an age or mindset to accept- and understand the ramifications of what is being decided for them?

3) the native community has turned this into a political situation and interpreting the decision as "victory" against the government and a judgment against a history of governmental abuse. How so? Many people - native friends of mine included - see it as a huge step backward for the native community in a legal sense, i.e., just because the girl is a native, she's not worth protecting? We've already treated the native community shamefully throughout history; now we are backing away from a girl in need of help just because she's native? How does this help?

4) this isn't a "right-to-try" situation. The family pulled out of treatment after the second round of chemotherapy, not because they had already exhausted all options. There wasn't any time to determine whether- or not the treatment was going to be successful. And because they pulled her out of treatment, the girl runs a very high risk that her cancer will become resistant to further conventional treatment.

In the end, this child will probably die - and die painfully - unless her body spontaneously goes into remission and stays there. That is a very, very slim possibility that I am praying heartily for. Cross your fingers.

Don't get me wrong. I feel for the family. I feel for the girl. It's a tough question and who wants to see their child suffer the side effects of chemotherapy? However, I'd like to crucify the quack in Florida taking advantage of them and lambast the legal system for racism against our native population because that's what this is at it's core: because the family is native, the law will not protect them. My only consolation is this legal judgment will not stand. The child has a right-to-life and proper care. Period.

wrenn

labelle, that was a really well thought out response that I wish I had come up with. I think it is hard to be rational given a life threatening diagnosis but we really need to think clearly and for ourselves regarding the way we want to live our lives.

exbrnxgrl

labelle,

Thanks for your post. Another great illustration of how very complex bc is. While I respect everyone's choices, for me, science based medicine offers documentation of both the good and bad with respect to outcomes and possible se's. The other things you mention, diet, exercise etc. are great complementary things but don't provide enough evidence to be science based stand alone treatments.

As to the salve, it sounds like black salve. This is a potentially dangerous substance. We had a member here who tried it after only using alt therapies, not even surgery. By the time she saw a conventional onc, they could only offer palliative chemo (surgery would have been too dangerous at that point). Yes, it was her choice, but she expressed regrets in the end. Some supported her, even gleefully going on about how she should document her black salve experience to prove how very wrong doctors were. I simply could not cheer her on at that point. It's very complicated but I'll I'll take a track record, even an imperfect one, over anecdotes and internet stories.

wrenn

exbrnxgrl, the story you told of the woman with the black salve outcome was anecdotal and an internet story. I think we need to keep that side as clean as the other don't we? :-)

exbrnxgrl

wrenn,

No, she was real and I was personally in touch with her. I was in contact with her husband when she passed away. Carol may have been an anecdote and an internet story to others, but not to me, unless you're implying that all of us online are no more than internet stories. Certainly, that may be true of some but I have established personal relationships with quite a few women I have met on bco. Carol was one of them.

Caryn

WinningSoFar

I chose conventional treatment for a couple of mundane reasons. First, conventional treatment is readily available. Second, conventional treatments have proven success (and failure) rates. Third, in my case, time was of the essence because I had IBC.

Within two infusions, I could see that the cancer was retreating from my lymph system on my breast. I knew that the chemo was working right in front of my eyes. What a relief. AT that point, I'm sure not going to abandon something that was working.

At this point, three years into this, I am NED and not on chemo. I don't doubt that the cancer will rear its ugly head again, but I've gotten 3 years and my quality of life is excellent. I have had no lasting side effects, and even the side effects during chemo are doable.

wrenn

Of course I don't doubt you exbrnxgrl. But she is one story and on alternative forums that would be called anecdotal. I did conventional tx so I am not arguing either side. I just think that judgments on alternative are often more harsh.

dlb823

I think something to keep in mind, although possibly not the situation with your friend, Caryn, is that so many times people seek out alternative txs when conventional medicine really has nothing left to offer them. Yet the annectodal tale becomes how alternatives failed them. So I think it's important to differentiate between early stage bc, for which conventional medicine has a proven track record, and more advanced cases -- or even different types of cancers for which even early stage chemo may be harsher and not as effective. It's also very important for newly dx'd women to realize that someone reporting here about doing well with alternative tx may have actually had a less aggressive form of DCIS, for example. I'm not minimizing that experience in any way, but skipping tx or using alternatives in that situation could produce a different outcome than they will experience with an invasive, grade 3 bc -- something newbies may not yet pick up on as they're perusing for support to do only alternatives, which is very different than using complementary txs, as labelle commented about, and which I personally think can be very helpful for immune system building, stress reduction, etc., but probably not curative.

I also wanted to add that in my case, I didn't simply agree to conventional tx. Even after deciding to head down that path, each step of the way, I analyzed and scrutinized what was recommended, always trying to find a way out of it. But in the end, they were each (mx, chemo, rads) necessary for my individual situation. I don't think many intelligent, thinking women go into conventional tx without seriously questioning the need for it.

Just a few random thoughts...

exbrnxgrl

If someone who knows me tells my story, it's not an anecdote. I knew Carol and I knew her story. From my mouth, it's not an anecdote. I still miss her

SelenaWolf

"I also wanted to add that in my case, I didn't simply agree to conventional tx. Even after deciding to head down that path, each step of the way, I analyzed and scrutinized what was recommended, always trying to find a way out of it. But in the end, they were each (mx, chemo, rads) necessary for my individual situation. I don't think many intelligent, thinking women go into conventional tx without seriously questioning the need for it."

Very well put. I'm so tired of being called a "sheep" and a "pharma-paid troll" because of my support for conventional treatment and my stance against alternatives (and quacks) that proclaim "cures" when there is really no proof just anecdote and testimonials. I chose what I chose after much soul-searching, a great deal of consultation, and an horrendous amount of research, hoping against hope that there was something proven- and effective out there that wasn't chemotherapy. Who on earth goes into this challenge thinking, "... yay! I get to have chemo! ..." I mean, seriously?

But until there is some solid, hard evidence that certain alternative therapies can, actually, control- or prevent cancer, then conventional it is. Because, as someone once said on this board (I forget who), I will be the first one in line to drink honey-badger pee if there is solid research behind it.

Lily55

Labelle thank you .....

I dont think its helpful to bring emotive cases on to a BC forum, there was a recent case of a british boy where the parents were arrested fir abducting their own son.....just because they wanted to give him a different radiotherapy treatment, one with a proven track record........in the end the boy had the treatment the parents wanted but only after a lot of unnecessary upset to them and the boy himself......in cases like this i don't judge from media info but think about being in their shoes.......those parents have to live with their decision...........

Having said that I agree there are far too many charlatans in the alternative field, and sadly they often over shadow treatments with good success data, albeit it not clinical trials.

edwards750

That's a matter of interpretation but it is still my opinion which I am entitled to. If course she didn't breach confidential information. Can't imagine suggesting such a thing. Steve Jobs had a press conference after he was admitted begging people not to go the route he chose. He reminded people he had a lot of money so that was never the reason.

Again he was upfront with his condition so that people would know what it cost him.

I made a reference and it has come to this? Unbelievable.

Diane

labelle

I'm not sure about the dlb823. My mother was an extremely intelligent, well read and educated woman, but when it came to questioning her doctors' advise and recommended treatments, not so much. I think a lot of people have problems standing up to or questioning the advise of their medical providers, especially perhaps women who are a bit older, like my mother, raised in a time when the "doctor" always knew best and I think it is also a big problem for younger women with less self-confidence and life experience. My daughters (21 and 26) have trouble negotiating dental procedures with the dentist. If a doctor told them to do x/y/z they'd just do it. When I was younger I was more inclined to just do what I was told by medical health providers too, and not say, "Hey, wait a minute. Explain that to me." Getting older does have some advantages. You get crankier and pushier or more proactive about things (if we want be nice about it).

dlb823

You are absolutely right, labelle. I totally get what you're saying. I guess I was thinking more about someone like me and others here who made the hard thought-out choice to go with conventional tx, and then, as Selena suggested, others don't realize the soul-searching and angst that went into that decision, especially if we choose to speak out against obvious quackery and in favor of conventional tx for newly-dx'd women. But, yes, many intelligent patients would never question their docs, and not doing so doesn't mean they're not smart people. It's just a difference in personalities and, as you said, life experiences. Deanna

Lily55

i think everyone making treatment decisions does so with hard thought out and well researched choices, whatever they choose in the end, I know I took several weeks to do so, hard to research and read survival info etc when just diagnosed of course and I opted for integrative, a combination of standard and complementary, i continue with both and no matter the outcome know its right for me. Yes it was a lot of angst......but like others you keep doing it until you reach a place of acceptance or peace with your decision. Unfortunately there seems to be a negative attitude from some members here towards those of us making our own decisions with medical advice from non quacks.........i dont attack or criticise those taking the conventional route yet I see a lot of negative judgement towards people like me. Which is pretty insulting to our intelligence and anti the bc org ethos of support

labelle

Selena you're right in objecting to being called a "sheep" and a "pharma-paid troll" but I really haven't seen much if any of that on here-I also haven't been reading on here for very long. On the other hand, it is going to take a lot (may be impossible) to get me to agree to chemo in my situation. It isn't going to happen (and maybe they won't push it) because I believe, that for me anyway, chemo will blunt the good effects of my diet, exercise and other regimens I am now following to promote a healthy immune system, creating an environment where cancer cannot thrive in my body. I don't think that's quackery. Chemo is a lot of things, but definitely not a promoter of good immune health.

On the other hand with a lumpectomy and nodal involvement, I'm not going to say no to radiation, despite its downsides and I know there are some. If they had not found a positive node, I may very well have passed on the radiation too, but not now.

Still on the fence about hormone therapies. In any case, I hope there is support on these boards for the kinds of choices I'm making. They are informed and well researched, but not what everyone in my shoes would choose. Similarly, I try to respect the choices others have made in regards to choices regarding both conventional and non-conventional therapies as well as minimal conventional treatment which is what I'm leaning toward. Weighing side effects real (usual not many with non-traditional, a wide range from merely annoying to deadly with conventional), and potential; with benefits real (better documented for conventional, mostly anecdotal with non-traditional) and potential for each therapy is a very difficult thing to do as I'm finding out more and more each day.

ruthbru

When diagnosed with breast cancer, my first thoughts (like that of most people) were: this can't be happening to me, I don't want to do the very scary treatments recommended, and how can I get out of this????? I researched and read all the conventional and alternative literature I could get my hands on (I especially did not want to do chemo), and finally took all the information to my trusted GP, who really knew and cared about ME. He looked through everything and said, "Ruth, you know you have to do what is medically recommended." And I did. Without chemo and 5 years of Arimidex, my odds were 50/50 of recurrence. So, there was a 50% chance that surgery (plus rads because I had a lumpectomy) alone would have taken care of things, but I am not a gambler (especially where my life is concerned!) so decided that I needed to give myself the best shot of being okay (which was still only 80%....which made me mad....WHAT, I am going to do all this and it still might come back .....but if it does, I will know that it is fate, not something I did or did not do....). Many thousands & thousands of women have bravely gone before us (and are still), volunteering for the clinical trials to give us and our teams the most up-to-date information to base our decisions on. Of course, that information changes and evolves over time as do the recommendations (which can drive one crazy, as we are pretty much stuck with the results of our original treatment decisions).

Do I believe in complementary medicine? Absolutely! Keeping a proper weight, eating a more natural diet, vigorous daily exercise, getting the vitamin D level up, a daily low dose aspirin, stress reduction.....I practice all those things and more; and I believe that they, added to my conventional treatments, lower my risk of recurrence even more. Obviously they don't prevent cancer, or I would never have gotten it in the first place; and since they don't prevent it, I don't believe they can cure it either. To have that chance, I needed medical science. (If anyone hasn't read The Emperor of All Maladies, the history of cancer throughout the ages, I would highly recommend it. It shows how far treatment has come, and how far we have to go.)