Survivors who have used only alternative treatments
Comments
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LtotheK I'm not saying cancermath is bad or even wrong but there are other tools out there that I think are more accurate when considering treatment… because this disease is complex. It doesn't ask about BRCA/family history for example which will play a huge part in making a decision. This is why we have oncs to interpret the results.0
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poptart: I think your post makes a lot of sense. Why would you forego the most promising treatments, instead saving them for "later" when your cancer had by then progressed? Wouldn't they work better when your cancer is early stage?
Also, I don't know how there can be a "standard of care" whenever there are many, many types of breast cancer. Even within the category of triple negative, there are "basal" and "non-basal" and they respond differently. Even with ER+, you can have grade 3. Breast cancer is many different diseases, and in the future I think they will categorize in even more different ways that we don't even know about yet.
Here is an article which discusses how HER2+ breast cancer, even in the earliest stage of <1cm, is 5 times more likely to recurr than ER+ breast cancer. So it makes sense to treat it a lot more aggressively:
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Nikola,
It bothers me that you said, "if the cancer does come back, she would still have several years to live". I have no illusions that without the treatments that I did, I would not be alive. And when the treatments stop working, time will be counted in weeks or maybe months, but definitely not years.
My grandmother was in her 30's, with two very young boys (7 & 5); and with no treatments available at that time other than surgery - she was gone within weeks. I am sure she wanted to live, I am sure she tried everything to live.
And I wonder also how influential the daughter's very strong personality has come to bear on her mothers decisions. My own daughters both told me 2 years ago to stop treatment and go for quality. Well, today I have quality and currently quanity.0 -
scuttlers: Many people don't understand how aggressive cancers like triple negative and HER2+ can be. I have met many women with breast cancer that did not even know about these sub-types.
I think you are a good example of how we need to make our own decisions. I am glad you are doing well!
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Also, I don't know how there can be a "standard of care" whenever there are many, many types of breast cancer.
When I used the term stzndard of care, I didn't mean a one-size fits all approach. I meant applying the treatments that were available and reasonable given a particular diagnosis. For example, standard of care for Her2+ is herceptin. For hormone+, it is anti-hormonals. You get what I mean. DCIS, no chemo .... and on and on ....
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poptart: I understand, but I think there are many out there that want to use a "standard of care" approach to all breast cancers.
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digger - lol !! But I think we have a very confused and strange poster on this thread.
nanay - thank you for your apologies via PM....but you still don't 'get' it....
MOTC - I also do not understand the so-called logic of saving treatments for 'later'. My onc, who is very well-respected, would not allow me to extend my endocrine therapy beyond 5 years, citing their 'usefulness' in secondary disease.Thank you, but I would rather have a useful therapy in early bc, not wait for it to be treatable, but not curable.
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I was 57 at diagnosis - according to Nanay I'm almost as old as her really old mother. Garbage!!! My onc said I was young which made me smile. I agree, don't wait until the bc comes back - treat it early. I'm lucky I was only stage 1 but both Nanay's mother and WOM are stage 3. The chance of them ending up Stage IV without treatment is very high.
WOM you have the chance to do something now - make the right choice for your children. As for Nanay's mother - the time is way past where chemo/herceptin would be of any benefit. I agree her very strong personality has probably influenced her mother's choices.
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I don't think nanay's mother was stage III, I think it was I or II. And I actually don't think nanay influenced her mother's choices, I think she is trying to embrace the choices her mother made. Perhaps she could have pushed her to change her mind, but as critical as I've been of Nanay's posts, I get that she has an independent, strong-willed Mom.
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Sorry - she is stage II but she did have positive nodes. I'm not under any illusion that with negative nodes that I am safe from mets.
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I only have like 5 mins so bare with me I have been very busy. I am trying to keep up but this post is moving fast. One thing that just utterly shocked me is the person whom condemened their mother for not doing enough in her BC treatment. I try not to personally respond but have this one as a parent is just jaw dropping. The years that this woman was alive is why it just shocked me. How do you condemn a woman without fully knowing what options were given to her. Our Aunt had lymph nodes out 15 years ago and wasn't told she didn't have to have chemo so I can only imagine the dicussion in the 70's. I also am shocked lump ectomy was used as I thought that was more recent. But to criticize your own mother without even being fully aware of what the doctors told her. Maybe they gave her a choice and not with the same data we give now? This is your mother and someone gave her a good job on the speech?? I guess you feel in is similar to mine ( not really as she didn't even mention alternatives) and you were going to prove a point to me but to do so by criizing your mother just really bothered me. People can prove points while still being kind and courtousy of others. If you have a valid point the point will prove itself you won't need the harsh words.
I am also tired of taking my beginning parts and breaking them in bits. Yes I pointed out I had 3 kids and this is why I went to the ND. I have refrained from going into all the chemo side effects that lead me to believe that chemo might be more harmful for me as I know many on here have had it. Personally I think that spending countless weeks/hours etc on my decisioin points out what kind of parent I am as makig an informed decision is best for my kids especailly since I get one choice but would not put down or question another persons parenting ablility if they decide to just blindly take the first ONC's rec. They have that right. I do respect the people who have tact in suppling me with data to help me make my decision to take into consideration rather than those who jump on their soap box and tell me this is what YOU need to do or you are going to die and this makes you a horrible person and mother. If you want people to listen you can say the same statements with tact and probably will make more gain.
Nanay I am so sorry for getting you in this
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Hi WOM- hope things are calming down for you - you are in my thoughts
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PP made it pretty clear that her mother declined treatment. Sorry, I would be pissed too. I know that I chose the most aggressive treatment possible because I owe it to my children. If my mother was elderly I might feel differently, but if my mother "left" me when she had an option to fight and stay, I would be pissed.
I think this is a valid perspective. We make decisions assuming we know whats best for our kids, but I think its valuable for one of these kids to express how she felt about her mother's decision. I'm not sure I understand why it upsets you so much. If you are comfortable with your decision, it shouldn't affect you.
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scuttlers,
I am sorry if my post offended you. I was just referring to nanay's mother and her situation. She is already one year without any Tx and I believe both of them are aware of consequencies if cancer does come back.
Everybody is different but I can assure you I would do the same thing as you did for myself. But, I think nanay and her mother would not and I just respect that.
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digger,
I am not dave! who is dave by the way? I am a real person, taking care of a 60 year old mother and my 5 year old daughter alone (single mom) while working in a corporate world.
I do not have the time to post 24 hours in this board-- I envy MOC and LtotheK for having that luxury of time.
elmcity,
go ahead and read all 30 pages-- I was called appaling, stupid, and was insulted for supporting my mother's decision 100%.
it is so wrong to assume that anyone taking another treatment approach -- and refusing conventional treatment is irrational and is "giving up".
we are fighting the same disease, only with different weapons. it is not because of the absence of options-- but because it was what we have chosen for ourselves.
if you are really comfortable with your treatment options, why are you in this thread? you are utterly disrespectful of our choices -- and you are begging me to respect your-- look at my first few posts here--- I started with reverence for all of you-- but when you started insulting me and WOM-- I thought this people have serious problems..
there are a few exceptions and I can see their stand now-- and beginning to understand us.. but what the hell it took 30 pages or so to get to that point..
if you think you are wasting your time on me.. then go back to your own world..
"hate speech"?? go agead and read the thread "OMG somebody has found a cure for stupid", it has so many hate speech against their "stupid aunt" and "stupid MIL" -- guised in jokes and humuour..
its the worst kind of speech and the moderators and posters in that board are tolerating it.
come on!
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WOM, I will see you around -- I would swtich to another forum -- evebarry's site.. I think we will get the support that we need there.. without "conventional" people shoving their own treatment plans to us and judgind us either as a bad daughter or a bad mother --
I think in this board-- that is the dumbest most stupid thing to say to any woman-- just because that woman has chosen a different path.
again, I am not dave, I do not sell trampolines or cancer treatments, or pretend that I am a medical worker.. I am just a woman who has supported her parent's choice-- and embranced my parents choice not because she is my parent-- but because I have seen good results.. I still keep myself abreast with the latest conventional treatment-- which is the reason why I am in this board..
it just happened that I saw WOM's post-- looking for like minded people.. in her search for like minded people-- we have found each other..
we are done with this..
if anyone is interested to know where to find us.. PM evebarry-- and ask for the link to her site.. we will be there.
bye everyone and thanks to those who are genuinely concerned.
for those of you who have a personal agenda in insulting alternative women, I hope you find the grace and peace.. to stop pushing your own agenda...
my mother has a very strong personality and she can eat me if she wants to-- she did not finish college.. I had a degree in engineering-- but still her intelligence just blows me..
do I have strong personality? maybe yes, maybe no.. I guess the "strong personality" that you saw only came out after a hurl of insults because of me supporting my mother's choice.. because of me being convinced that she had made the right decision for herself.
and as the saying goes-- mothers knows best-- perhaps I could be that kind of mother to my daughter too..
if not for my strong willed mother-- I would not have finished college.. she literally ekked a living puting me through college..
now I have all the means to put her through conventional theraphy and she refused it! she refused it not using her usual dominatine demeanor.. but with a soft approach which surprised me to the point I cried-- this is not the mother I used to know..
she is feisty and honest.. just like Shin! what happened to her!!?? and in my heart of hearts.. her decisions just cannot sycnrhonize with the logical parts of my brain..
but I love her.. and if following what she thinks is right for her and for us..why not? why do I have to bother to pick arguments with her? when she has already made that decision?
what is the point of bring up sob alternative quack stories? when she is living the life she has always wanted??
and yes - my mother is 60 years old-- but many thinks she is only 40...
at age 60-- I am still wishing she will see me through until my 5 year old daughter has started her own family.
my grandmother is now 80 years old-- still strong -- I want that for my mother too.. I want to see her old and grey at age 80 or 90..
all of you are soooo quick to judge but so slow in listening and understanding..
we are still keeping abreast with those kind of cancers you mentioned asuch as Her2+ and BRCA gene 2 mutation -- as well as all the possible side effects of chemo and rads till the end of life stage ( wherein some of you are implying that dying a painful death-- pleurisy is normal!!) . its normal to die from SE of chemo and rads?? how can you accept something like that as normal. we know that most DCIS patients does not need chemo.. we know that certain kind of cancers does not respond to chemo as well as other does.. we know that there are certain cancers that will work with hormonals..
we know that-- you can still "individualize" conventionl care.. in the same way that alternative care is "individualize"..
its not the abscene of options or money or knowledge -- that led us to this decision-- it is not ignorance or stupidity.. but it is the combination of knowledge and love... they say intelligence is all about things that are logical-- something that you learn in the academics.. without the heart.. it is just intelligence.. wisdom is a combination of the logical brain and the illogical heart.
if you prefer to use just your brain-- go ahead no one is going to sue you for that.. but maybe you also need to understand that intuition and all matters of the heart.. even the spiritual realm is beyond logic..
you can even study to the point of not sleeping at night-- but you will never never get to a point wherein you have really put all tables unturned..
and maybe for you-- your heart is telling you that conventional is good for you---even if you know that the cure is about a decade from now.. its your intuition telling you-- not really the logical part of your brain telling you this is right for you.
then go ahead and be at peace with it.. it is probably the reason why scuttlers have lived all those long years -- because she was at peace at that decision..
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I don't believe Nanay is actually leaving.
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Not many "Survivors" who have used ONLY alternative treatments on this thread. I've read and searched and would love to know about them. Perhaps they are few and far between. If we can get through all the defensive nonsense, I'd bump it.
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lynn, you wrote:
".....Why would you forego the most promising treatments, instead saving them for "later" when your cancer had by then progressed?...."
Don't get me wrong: I would even go back to taking that cobalt treatment they used to apply (many decades ago, I think?) as cancer treatment, if I were sure that would improve my chances of avoiding a recurrence.
What I am saying is that, obviously, adjuvant treatment has not been able to keep its promise, in the sense that it offers only a very little chance of helping reduce our recurrence risk.
How can I say that?
Well, for one, this title, from this year's SABC (doesn't get more conventional than SABC, does it?):
Another uninspiring year for Adjuvant Therapy of HER- Negative Tumors -- Issue 7, March 11 2011 [http://www.researchtopractice.com/5MJCSABCS2011/up/1]
Also: the standard of care is changing, right now, from automatically administering chemo to women presenting 1 or 2 lymph nodes to NOT automatically doing it (NB: I NEVER said that women with 1 or 2 lymph nodes will no longer be offered chemo).
Yes, indeed, I would do ANY type of adjuvant treatment if I knew the benefit was worth it. Unfortunately, such great benefit from adjuvant treatment is still elusive.
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Don't get me wrong: I would even go back to taking that cobalt treatment they used to apply (many decades ago, I think?) as cancer treatment, if I were sure that would improve my chances of avoiding a recurrence.
FYI: My grandfather (my mother's father) was treated with an overdose of that cobalt radiation for inoperable throat cancer in the 1950s. He was cured, lived until the mid-80s (died at age 89), and he never got cancer again. He used to describe to us when we were little how he was in his kitchen when his tumor broke loose - I always wondered where it went as he never had surgery! He thought he was going to die, he didn't (at least not then and not from cancer). I have a lot of cancer in my family (as I said before), so even on the anecdotal level I know that even our imperfect treatments really do work ... sometimes.
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boy.. i wonder about that cobalt treatment. That must have been something else.
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NANAY~~You have completely offended me with so many of your posts and your hippocracy! Even though you have been personally involved and affected by knowing and loving someone with breast cancer, YOU don't have it and I pray that you never will. So in many ways, I don't think you totally get it like those of us who live with breast cancer and the choices me make everyday. You can turn out statistics, stories, blogs, and hypotheses all you want and you can believe them and never question them. That's because they aren't affecting your life or death choices. Those of us living with this disease ,whether at stage 0 or stage IV, WE have to take the research we read about conventional, alternative, and everthything in between. WE have to digest and analyze and try not to become overwhelmed by unsubstantiated claims. WE have to do all this because it is OUR life or death for us, not just words on paper. So NO, I don't truly think you completely get it at all!
On pg 32... you say Poptart "hated us... and Beeb says great post. It's so funny to the point of being hilarious" "and then you will tell me I am being disrespectful because I am laughing at this situation" Well, personally, I find this odd coming from you Nanay, since you bashed the ladies on the thread "OMG THEY FOUND THE CURE FOR STUPID" ON PG 58. You after not even being part of that thread, you jump in out of the blue and post "One day, you will all find that the joke is on you and you will severely regret it. Am sorry but I think some body has to tell you that." Then you go on to accuse them of laughing at the expense of others who are losing their hair or going bald. These ladies on that thread are hilarious and have not made fun of anyone except maybe themselves. They are using humor to get through and laughter is amazing, especially when we can to it after everything else that WE are going through. but then again, since you don't have cancer, maybe you truly don't understand how important it is to find a little distraction or escape sometimes. These ladies posting on that thread are sweet, kind, funny, and extremely funny. I know that I have found it to be very positive and uplifting for me. So how can you tell BRITCHICK to go back to posting on another thread for being insulting (which she wasn't) if you can jump on this funny and creative thread and post something not only insulting but bordering on threatening?
Also on page 33 of this thread you reply to BRITCHICK again and your last words on that post to her was "Why don't you all go back to your conventional forums-- if you do not have any uninsulting remarks to make? excuse me, but weren't you making insulting remarks on the other thread?
Also, have you ever thought that maybe you have a chip on your shoulder and that you have guilt issues over Shins death? I am sorry that you lost your friend. I know personally how devastating that is. But did you also argue with her this much daily over her choice to use conventional treatment? Or were you supportive of her decision? Did you try to make her feel bad for her choice? Shin had breast cancer. She agreed to treatment that you didn't like. But it was her choice. The treatments didn't work for her. No treatment is 100% effective or guaranteed. No doctor can give you those odds of success. She knew this and yes she still agreed. And as for the chest tube, it was placed because of fluid in her lung caused by the breast cancer which had spread. If it had not been put in, she would have died a very agonizing and painful death. Placing the tube was done to diminish her symptoms so that she could breathe easier. This she also agreed to. Chest tubes do often have to be adjusted. Being a nurse, I have seen this done numerous times. Draining out 1000 cc of fluid is done especially if the lung has a large volume of fluid.. Draining out 500cc more than Shin thought normal would not have caused organs to shift and death in the way that you described. Also, you are quoting Shin's facts that came from her blog. They come from Shin's words, her opinion, her perspective and emotions. But have you personally read her medical records to know if it was 500cc over drained and how much was actually in her lings to begin with? Have you read in the medical record that her organs shifted? Have you read in her medical records that anything in her blog was 100% accurate? Sometimes, people, especially when they are scared or feeling overwhelmed with things, they don't correctly hear all the facts, or they only hear as much as they can take. So in her blog, she wrote it the way she emotionally thought that she heard it. Either way, the chest tube didn't kill her, her cancer killed her.
You seem to have a problem with anyone using the word "stupid" where you think it might be directed at you, but on several occassions, you have directed it and many other worse names towards others. I have seen you jump all over the ladies on the other forum even being two faced with them and then basically throwing them under the bus back on this thread. You have some guilt issues and you may need some counseling. I mean that in the most caring way. You talk about people not being able to push you off a thread and then you tell people to stop using a thread and go back to another thread. You randomly jump on to threads to cause disharmony. I think there are some deeper issues here with you.
I don't want to get into your issues with your mother. I believe you are both strong women and if she makes her choice after being educated to the risks, then it's her choice. It's personal. We all make decisions that we think are good for us at the time but then as time goes on, we see the folly of our choice. But then again, it's ours to make and we must all live with the consequences. I think you have used the OP WOM original post as a way to further your agenda and that's not fair. I think you have used parts of other threads "THE FINAL CHAPTER' to further your agenda. that wasn't fair of you to take something so personal and make it a statistic for your cause. I think before you post anything, you should realize that YOU don't have breast cancer!!!! You aren't dealing wtih it and all the internal sadness, fear, and worry that cmes along with it on a daily and nightly basis. Maybe that's why some of us don't sleep at night. It's not as you put it "the luxery" to stay up all hours, it's the fact that we sometimes can't sleep with so much on our minds. Another thing YOU won't understand because it's impossible for you to truly get it.
To everyone else that had to read this extra long post.... sorry, but I just had to throw this out there. Sorry if I have offended anyone of you gals. It was not my intention as I have found strength, knowledge, and support from all of you. And sorry that I prop won't be spell correcting this either. haha!! ...... KImala
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WOM and nanay, It amazes me the hostility we women can dish out...supposed bc sisters...ha! It's like I'm back in middle school when I read this thread. We've come to the "alternative" threads because we erroneously thought we would find support. For the most part, it's not to be found because so many here don't "get" that we are allowed choices in our treatment and therefore ignore the original topic of the thread but choose instead to resort to insults to try and get their agenda across.
Please join us on evebarry's site and let this thread die off because without opposition, there will be nothing to discuss. Some (not all...I do believe some are here to help) of these women will move on to another thread where they can continue to antagonize their bc "sisters" but I learned, not so quickly, that the back and forth drama is so not worth it.
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Yazmin - we are talking about HER2+ve tumours here - your article is not relevant. My onc said being triple positive was good because of the targeted therapies. A node negative HER2+ve patient is automatically offered chemo/herceptin if the tumour is >5mm and they are starting to offer it for smaller tumours.
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Nerida, in the book, "Anticancer: a new way of life", David Servan-Schreiber recommends obtaining organic turmeric powder, (ground turmeric root), and mixing 1/4 teaspoon with 1/2 teaspoon of olive oil and a generous pinch of black pepper. Black pepper increases the body's ability to absorb nutrients. I put black pepper on practically everything. Exercise does the same thing, as well as making you sweat. I'd be afraid of taking a lot of turmeric without the sweating part because high doses can affect the liver and may be counterindicated if you have liver disease, gallstones, ot taking meds that are hard on the liver. So talk to your onc first.
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I usually avoid posting in this forum because there is so much hostility or whatever.. the people who like to argue come.. which is unfortunate because there is so much wisdom in embracing natural methods and ways of living. WOM's original post struck me hard.. I too have 3 children and the thought of leaving them is so sad to me.. it's just not fair. I embrace many 'natural' practices and resent the hostility I find here.
alimik - thanks for your post..
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Impositive,
Can you please extend a personal invitation to Luis and Dave to join your super secret alternative forum?0 -
Is is just me or does anyone else not know who in the earth Luis and Dave is.
Digger that is just an outright mean and vengeful statment and really inappropriate.
I also question the whole story since lumpectomy wasn't done in the 70's in fact Radical masectomy where even the chest muscle was involved was done. I hope this is not the case. cncerlynxd.com/change.html Also note the part that says the most radical treatment possible was seen as the best method and that view is changing. A woman whom would have asked for a lumpectomy might have been viewed just like me in the times of cut if all off agressive treatment is best but again we never look at where we came from and realize the same can be true today.
I am thinking a few from the other side may have agendas as well since I am shocked at how often some can get on here.
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....'the other side'???? whoa - this is getting scary...
Luis and Dave are known (not personally) to me.
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i think i saw a post b y someone named Dave that looked like he was trying to sell something- not sure how that got brought up in here...he was obviously trying to gin up business...he had his own thread if it hasn't already been shutdown...everyone breathe deep- I don't think there are any conspiracies!
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