For those who refused Tamoxifen x-posted Hormone tx

Chiming in just to say that in the annals of requests regarding ways to argue/advise/recommend/support etc.. I would simply ask that people not minimize or question a side effect simply on the basis of it being "rare." 

Remember that most of us here are "rare." If you are:

--premenopausal AND

--have a history of breast cancer AND

--do not have the most common bc dx, which is DCIS

then you are a statistical anomaly. I am amazed at how people bow to statistics even when they have consistently been on the "losing side." I have learned my lesson, which is about time, as I am a statistical freak in just about every area of life. 

Nonadherence or non persistence with Tamoxifen for five years has indeed been clocked at up to half, as Jayne says; numbers for AIs may be higher. So either "rare" SEs came calling in a less "rare" way, or common SEs drove people to make a "rare" decision: which is to stop cancer treatment. Adherence is higher when subjects are in clinical trials and where SEs are reported more in detail. It is therefore possible that SEs perceived as rare through reports from randomized studies may actually be less rare in the community under a less stringent standard of care.

Statistics can also obscure more than they reveal. Let's take the statement that Tamoxifen has no overall survival benefit. This is both true and misleading - like much of cancer treatment. Overall survival benefit is calculated based on ALL causes of death - not just BC. BUT this doesn't mean a woman who takes it will not benefit. As we all know, statistics are crude numbers that speak of little nuance. What it means is that some women may indeed fight off bc recurrence with Tamoxifen, others will not, and others will die of other complications from Tamoxifen. Overall, experience will vary drastically; the medication will save some lives and take others and do nothing in others still.

It is this very variety of experiences that makes me feel queasy when I hear stories of people saying how x medication worked for them and wittingly or unwittingly use themselves as an argument in favor. It is an understandable attempt to be both helpful and informative, but any person who takes that advice may be in for a rude shock. The same goes for anyone taking the opposite stance ("don't take this, it will kill you" - not that anyone here has ever said that). But at least both are positions rooted in sincerity. Anyone using statistics to convince (as doctors do) should understand what they are doing and use an enormous disclaimer, because statistics:

--are NOT science. They are maths; 

---are useless for individual cases - they are only accurate as epidemiological data, and

---obscure the many variations between cases.

You might all want to visit the National Cancer Institute's web site, which has a breast cancer risk calculator. Here is an interesting and rather shocking exercise: enter your age one year before initial bc diagnosis and answer the questions as you would have at that time. I did this. The brilliant, brilliant, scientific calculator assessed my "risk" of getting any bc over the ensuing 5 years at 0.6 percent. I expected 10 or 15 percent; I will tolerate some bad luck. But 0.6 percent?

Now calculate the statistical probability of someone my age having both bc and my other illness. Oh, a true rarity, Dear Reader.

So when I hear the word "statistics," when used as a treatment recommendation I don't know whether to laugh or cry or spit. 

Statistics are bound to play a role in almost every decision we make. They should just not be the only factor or even the most important one. 

PS: I am going to have to log in using Windows Explorer to post the NCI link because the links I post don't light up if I use Google Chrome.  

Thanks for putting up with my rant everyone. :-) 

That's funny it gave me a 2,7% chance of getting BC.

hee, hee - it's NOT FAIR that our luck doesn't work with the lottery!

I don't think anyone has ever said that most women have no side effects from tamoxifen.  I don't know a single woman who has had no side effects.  I tolerated it very well, but I had side effects.  I would say most women do fine, meaning they tolerate the side effects they have.

Stats can never tell the whole story but they can be helpful.  This is not just to persuade women to seek this or that treatment but to avoid overtreatment.  If someone is only going to get a 1% benefit from chemo, they really shouldn't be doing chemo (unless the psychological effects of skipping it are too burdensome -- but thats the personal element of the decision-making, not stats).  Statistics help us make decisions.  I learned that there are no stats comparing the benefits of ovarian suppression versus ovarian removal for women who are premenopausal but want to take an AI, and that made my decision-making much more difficult.  Obviously, it was a deeply personal decision, but some data would have helped.

 As for 50% going off their tamoxifen, the study I remember reading is that these women were "noncompliant" (hate that word) meaning they didn't consistently take their tamoxifen.  This is different from someone saying "the side effects are too much, I'm going to stop" and we have to be careful about those numbers.  I know that, of course, some women stop because the side effects are difficult.  But remember that there are a lot of women who had DCIS who take tamoxifen and if they forget, or get lazy or say it just isn't worth it, thats not the same thing as saying I'm quitting because of side effects are intolerable.  I would love to see that 50% stat broken down by stage.  Because that is the most important element of decision-making here.  If I'm stage IV, you better believe I will take every single pill regardless of the side effects.  If I'm stage II or III I will be motivated to stay on the drug in spite of side effects, unless the side effects are really debilitating.  And if I have DCIS or stage I, I'm not going to put up with much, it just isn't worth it.

 So if we're going to be skeptical of statistics let's look more closely at that 50% number. 

Here is information I posted on another thread on this very topic. Googling didn't work (as it often doesn't) but I went to PubMed: 

I looked around for data of what they call "Tamoxifen persistence" (or Tamoxifen "adherence") - or the percentage of women who finish their five years with minimal interruptions. I couldn't find much because many studies involve a small number of people. I wish there were one good mega study.
The most often cited one has about half of the women NOT making it to 5 years; this is from a study published in British Journal of Cancer in 2008 that I am having trouble downloading. Just over 2000 people were followed. A study in the March 2007 issue of Cancer, which followed about 2,800 women in Dublin measured rates up to 3.5 years - 31 percent of those followed had discontinued Tamoxifen by then.

Cancer treatment isn't always worth it for everyone. And here is where statistics ARE telling: death from breast cancer has declined by just 5 percent since the 70s (death from all major cancer has declined by the same percentage between the pre-chemo year of 1950 and 2004).

Before anyone goes around telling you that breast cancer deaths are falling, ask if they are speaking in absolute or in relative terms. The percentage of people dying of breast cancer as a slice of the whole population is declining, but that is because people are falling ill with and dying of other causes. However, for those who get bc, the overall rate has barely budged. Epidemiological studies, where statistics DO provide us with a boatload of invaluable information, seem to dovetail with the results in breast cancer treatment today. A quarter of us will die, and it isn't because we are too lazy to take treatment, particularly since some of it actually may hasten death. That is very disappointing and most leading cancer researchers will say so. Being an unflagging booster of current treatment seems unrealistic, IMO.   

Some people don't get side effects. I have been on it for over year and I don't have a problem with it.

Jayne is just a troll and smart people will put her on ignore.  She is only here to incite and inflame, which is why she is name-calling.    She wouldn't know a fact if it hit her in the head, since she ignores all facts by the medical professional and clinical trials.

It's okay to question and make different decisions than the mainstream but it shouldn't be done based on somebody's personal agenda.

Tamoxifen has some harsh side effects for some people, but not everybody.  There is evidence if you delay too long you might lose your protection.  So, you may want to give it a try and see.  You can always stop.

On a personal note, I have recently made the very difficult decision to quit the Tamoxifen. Not happy about it at all, but the alternative is potential disaster for me and I do not use the term disaster lightly. It's a damned shame, though, because amidst all the uncertainty about cancer therapy, I wanted hormonals. I had pointed my finger and said "yes, I want that doggy in the window."

We all know what a long and difficult process it can be to make a treatment decision for our cancer. Remember those agonizing, sleepless nights everyone? When I finally arrived at my decision, I was happy and at peace. And now I have had to drop Tamoxifen with no substitute, so I am left hanging. 

Anyway I now have no choice but to wonder about DIM....speaking of studies. 

MHP70,

I know the subject of Progesterone has been highly debated on these forums and I don't want to change the dynamics of this thread, however, I'd be interested to know of the "new studies" that show Progesterone as an inflammatory and may cause bc.  Please do share the source of this new information.

In fairness, I was just over on another naturopathic post here, and a group said this study is bunk

Someone said the study was done with rodent guts in a blender.  How she got that info, I wish I knew! This is where my intelligence runs out.  It's Michigan State U, a reputable institution.  Rat guts in a blender doesn't sound reputable, and I feel like they must have to follow SOME modicum of standard.  But, if you have more info, please let me know.

I know bioidenticals are considered "better".  I haven't seen studies showing they don't cause cancers, would love to see them.  My doctors are all very skeptical of bioidenticals.  It wasn't there to begin with, and the jury seems to be out.

Goodness knows, I'd love any hormonal help I can get to help with Tamoxifen, chemo, and all the other castrating events of this cancer!

An a propos blog entry from Ralph Moss on Tamoxifen, SEs and acupuncture. He wants to get opinions from readers:

http://themossreports.wordpress.com/