Estrogen

SelenaWolf

joellelee... every study will have conflicting statements and for each study saying that something is good, there will be another study that says it is bad.  All of them are biased in some way.  What we try to do (but sometimes don't succeed) on these forums is to try to cut through the bias and get to the heart of the matter.  And that means that you have to apply critical thinking, which involves weighing pro's against the con's.

If you want to get right down to brass tacks, nothing about cancer or cancer treatment is carved in stone.  What may promote uterine cancer in one woman, will save the lives of several other women.  What will cause a few nasty side effects in a few women, will be fairly minor in a few others.  What will kill one woman quickly will take several years to affect another woman.  It all comes down to... how many lives can be prolonged or saved vs. how many lives will be shortened?

Since nothing about cancer is definitive, it becomes difficult for most of us to make definitive statements.  Is tamoxifen carcinogenic?  Yes, it has that ability.  Does it save lives?  Yes, again.  When the two are compared, tamoxifen's ability to save lives far outweighs it's ability to promote cancer.  The danger is there.  It's well documented.  We, who take tamoxifen, acknowledge that, but we are willing to embrace it because we have a far greater chance of benefiting from it.

Your assumption that none of us have read the Product Monograph is rather insulting.  Of course, we know that the Production Monograph is written by the company that markets the drug!  We are not stupid and your inference that we are - or that we are indifferent - is, again, rather insulting.  I, personally, have read it through a number of times to ensure that I completely understand the risks.  And I do.  Could I develop uterine cancer?  Yes, the possibility is there.  Will I develop uterine cancer?  The chances are I probably won't.

Please refrain from such sweeping judgments about everyone else's level of comprehension and intelligence, simply because we have decided that - for us - something has more benefit than risk.

Husband11

joellelee, have you asked your oncologist to provide you with comparisons of treatment options from adjuvent online?

For some women, with low risk of recurrance, the benefit will only be 5% reduction in their actual risk.  If the treatment cuts the risk in half, and you only had a 10% risk of recurrance, then the benefit would only be 5%.  But, that depends on the initial risk.  You can't reduce by much the risk of an event that has a low likelihood.

Husband11

One has to also remember that many of these women on Tamoxifen are also changing their diets to all vegetarian and cutting out dairy which also stops estrogen!  How do we know if it is the Tamoxifen working or dietary changes?  Something to consider!  No studies for this...

That would be pure speculation, and not something I'd base treatment choices on.  If anything, I'd postulate that the women who avoided treatment, putting all their faith in an "all natural" approach, would be the one's to turn vegan, vegetarian or cut out dairy.  Now on top of that, you'd have to also show that such an approach impacts recurrance.  Do you have any studies to show such an effect or survival or recurrance rate?

SelenaWolf

And how many vegan-gluten-free-no-alcohol-no-smoking-no family history-slender-athletic women on these boards still developed breast cancer?  There are quite a few.

Breast cancer simply doesn't discriminate.  Period.  Every woman is at risk... and some men too.  If it's built into our genetic code that we are going to get breast cancer, we get it.  A few things may exacerbate that risk, but there isn't much we can do to prevent it.  Changing our diets will only help our overall health, but it won't prevent cancer or cancer recurrence.

jojo68

Wow!  Now who is attacking who????  Geeze!!!!

I am not dumb either and do realize nothing is written in stone.  I do believe many of the women here are staying away from estrogen naturally while taking Tamoxifen and they themselves wonder if it's the diet instead of the drug...do a search, there are discussions on this and to rule out the possiblity is being close minded and blind in my opinion....oh, right, forgot...I am not allowed to have an opinion here.  Good luck everyone...I am leaving, much to your happiness, I am sure!!!!

NattyOnFrostyLake

Tamoxifen 50% ???  Timothy, you are using  relative risk statistics which the National Cancer Institute says should not be used because they are misleading. Please use the more accurate absolute risk statistics.

No way, no how, does Tamoxifen confer 50% OVERALL SURVIVAL benefit. That's why some countries don't use it. Even the original manufacturer doesn't claim more than 2.5% OVERALL SURVIVAL for node negative women. Since the manufacturer's report, more studies have been done. The ATLAS trial found Tamoxifen had little if any OVERALL SURVIVAL benefit. Don't be mislead by recurrence stats. What counts is how long you walk the earth. Tamox make lessen your breast cancer recurrence but kill you off sooner with uterine cancer, fatal blood clots, etc.

jojo68

Gosh...I just realized this was MY original post!  I am leaving my post....haha...too funny.  I was just originally wondering why so many Tamoxifen takers were still getting mets...

jojo68

I agree, NattyGroves!

Momine

Joelle, I am not "defensive," I am annoyed. I fact check and research for a living. I am not great at it, but I do have some experience and I am fairly persistent.

My mother was diagnosed with advanced ovarian cancer 6 years ago. At the time, I had no idea that I was walking around with a good-sized cancer myself. Then my mom's sister was diagnosed with 3 separate primary cancers: lung, endometrium and breast a few years after my mother's DX. 

Then I got diagnosed and, subsequent to my DX, spent a good year so far reading and checking up on all kinds of info posted here.

In short, yes, I have researched all kinds of therapies.

I am also reasonably aware of how the drug companies operate, since my mother worked for two of them and I have friends who work at drug companies.

The information on cancer and its treatment is confusing and at times ambiguous. Making decisions about treatment can be excruciatingly difficult. Many of the treatments are scary, plain and simple. Cancer sucks.

jojo68

I agree, Momine! I don't understand why you are annoyed, though...I am not annoyed and I am the one on the chopping block!  LOL

If we are all happy with our choices, then nobody would be able to annoy us...unless we were unsure in some way.  reminds me of my fave Eleanor Roosevelt quote..."Nobody can make us feel inferior without our consent."....NOW, I am NOT saying you feel this way...I am just saying...let's all get along and respect each others opinion...I never said you were all wrong for your decisions...I said everyone has the right to make their own choices, I was just sharing my info.

Momine

I am annoyed because you fail to discriminate between proper info and hot air and then you consider yourself on the "chopping block," when people point out that it is hot air.

Thing is, it is very hard to sort the good from the bad, but I think we should at least try to do so.

jojo68

I am wondering why you are attacking my studies as hot air...who is attacking who now?  Some of my studies are very relevant.  google MD Anderson studies on ILC breast cancer...very reputable.  Wow...feeling bullied.  I feel like I am in either Kindergarten or the twilight zone....Yikes!

jojo68

And, momine...this is my original post I started!  If you didn't feel comfy here...why stay and respond?  Not like I am on YOUR original post bashing YOU!...and, I forget...did I see your credible sources?

Momine

I am perfectly comfortable and I am most certainly not bullying anyone.

jojo68

Comfortable?  I thought you just said you were annoyed?  Okay!  this is REALLY getting ridiculous!  Eventhough, this is my original post, I will not be posting here anymore...I really feel this has gotten childish!  I was just originally inquiring innocently about estrogen/mets...I was on the fence about Tamoxifen and just looking for some shared info...but, MY info is being bashed on MY post...so, I wish everyone the best....

Momine

http://www.ascopost.com/issues/february-15,-2013/for-lobular-carcinoma,-letrozole-works-better-than-tamoxifen.aspx

jojo68

Thanks for the link, but many women on this forum are having serious side effects from Letrazole.  I was considering just taking my ovaries out but that has serious side effects as well.  I do take DIM and iodine which controls hormones....was just interested in the mets with the Tamoxifen.  I appreciate the link, though.

SelenaWolf

For the record, I worked for several years in the research department of an international pharmaceutical firm.  I am well aware of the scope and the limits of clinical trials and statistics.  Like Momine, I am, also, annoyed because you fail to discriminate between solid information based on prospective studies and "hot air" as Momine put it.  Furthermore, you didn't "just" share your information with us; you professed yourself "shocked" that some of us would take tamoxifen based on your understanding of the information you googled... and we all know how accurate and up-to-date Dr. Google is.

Thing is... you made a pretty sweeping assumption based on questionable science from a source that is, rather notoriously, unreliable and, then, basically questioned the intelligence of anyone who makes the decision to take tamoxifen, completely ignoring their thought processes and the decision-making it took to get there.  Hence my annoyance.

jojo68

Once again...I am the original poster and if you are offended, then why stay?  I would love to have an adult convo and share info!  I don't see any credible studies from you either!  You don't put in your siggy what treatment you have done.  I have a few friends myself who worked for Big pharma and they have admitted to me how studies are skewed all over the place!  So, that comment really is without merit...and, where is the proof?  You ask me for proof in everything I state.

SelenaWolf

The comment that studies can be biased is not without merit, especially given your stance that "your" study is the one with true value.  You need to consider the possibility that the study that you are professing to be your "proof" that tamoxifen will kill you faster than breast cancer will is biased in it's own way, as well.  Look at the source, the researcher, the agencies funding the research, the type of study chosen (retrospective vs. prospective), the age of the data studied, the demographic of the patients, the inclusion/exclusion criteria... all these things are going to affect the conclusions drawn.

The results of one study is not conclusive evidence that something is true.  Neither are the results of two studies.  Study results need to be proven - over and over again - before they can be considered conclusive or practice-changing.  Tamoxifen was has thirty years of research and countless studies proving that it can- and does prolong survival for a significant number of women.  Is it perfect?  No.  Taking tamoxifen does not mean that you will never get metastasis.  Cancer makes that decision, but thirty years of science has proven that tamoxifen does help.

So, to answer the question you posed in your post, THAT's why we bother taking tamoxifen.  That's why we risk the side effects.  There is just too much scientific evidence that it DOES make a difference.

And what on earth has my decision to keep my treatment protocol private got to do with anything?

MelissaDallas

The first time a poster uses the disdainful, tin-foil hat code phrase "Big Pharma" I tune out anything else they have to say.

NattyOnFrostyLake

A lot of us tune out name-calling such as characterizing someone as "disdainful" or "tin hat."

jojo68

I never said my study was THE only study!  I would welcome any studies on Tamoxifen that are NOT funded by BIG PHARMA...yes!  I said it!!!  LOL Sorry...couldn't resist.  As I said before, I am 'on the fence' with Tamoxifen...staying open minded.  I would really want to see a non-FDA/Pharma funded study that is non-biased on Tamoxifen!  Just because Tamoxifen has been around and studied for 30 years doesn't make it safe.  Nutrasweet has been around for Lord knows how long...and, I don't think it's safe.  And, there are many biased FDA funded studies to say it is!  Gosh, never meant to have this topic go so astray....just wanted to discuss mets with Tamoxifen...sigh...double sigh.

jojo68

Okaaayyyy, soooo I just mosied on over to that there alternative thread, you know...the one I was asked to go to...the one where my opinions supposedly belong?  AND, LO and behold!  Some of you are over THERE doing the exact same thing you accused me of!...ie....voicing your opinions, poopooing the thread's ideas, quoting studies that have no merit! Why are some of you being so hypocritical?

Momine

Joelle, I did just post a large, credible study for you, which suggests strongly that letrozole would be a better choice for you than tamoxifen. I am on letrozole and I have side effects. The side effects are bearable and worth the protection I get from this stupid pill. The SE profile of letrozole is not as scary as tamox. Yes, there are potential dangers to an ooph, but that depends to a large extent on the general state of your health and your family history. In my case there was a history of ovarian cancer and zero history of heart disease. So it was pretty much a no-brainer.

suzieq60

Joellelee - what percentage risk of recurrence did your doctors give you if you did not have chemo and/or hormone drugs? I just put your stats into LifeMath and without hormone treatment or chemo you would have a 48% chance of surviving. With treatment that is improved to 84%. I don't know where your doctor got 3 - 5% - maybe you misunderstood and he was only talking about radiation.

Momine

Joelle, here is what I would consider a relatively balanced and thoughtful alternative approach to the tamox issue. My only note is that the flax recommendation is controversial as far as I know. The writer is also upfront about the fact that there is no real alternative replacement for tamox or an AI.

http://elynjacobs.wordpress.com/2012/01/15/natural-alternatives-to-tamoxifen/

fredntan

This whole thing makes my brain hurt.

I have no SE from tamox, but am post menopausal or in menopause now. I sometimes wonder if I am on right drug. I have asked all my oncologists they all say stay on tamox

jojo68

Momine..I have seen that article and delved even deeper.  If you do a search on this forum, many of the ILC women are now learning that newer studies are coming out saying Tamoxifen may not be as effective as previously thought....I am refraining from posting my own studies from now on due to being bashed needlessly yesterday.  If anyone would like to pm me they are more than welcome.  As far as flax oil treatment, the lady who invented it Johanne Budwig won the Nobel Peace Prize for it...so, I do feel it is widely respected.  Believe it or not, there are many effective alternatives to controlling hormones, you don't have to take a carcinogenic drug.  The iodine protocol has been around a long time, bio-identical hormones, flax protocol.  I do the iodine and DIM.  Dim is actually now being studied by The National Cancer Institute!  They feel it's quite promising.

Momine

Joelle, I am an ILC woman, and I am fully aware of the latest research on tamox vs letrozole for ILC. I am also aware of the budwig diet. Flax is controversial for ER+ cancers, in the sense that nobody can seem to decide if it is good or bad for us. There is a large study underway on the issue of lignans in breast cancer, but we probably won't have results for quite a while.