Should I quit taking tamox? Help!!!

Reposted:

A checklist on how[ to promote alternative medicines

(Per the Skeptical Inquirer)

1) accuse the entire scientific community of being wrong

2) design poor quality experiments that are almost guaranteed to show your hypothesis is true whether it really is or not.

3) Keep using arguments that have been thoroughly discredited: (the intelligent design folks are still claiming the eye could not have evolved because it is irreducibly complex, homeopaths are still claiming homeopathy cured more patients than conventional medicine during 19^th century epidemics)

4) Write books for the general public to promote your thesis - as if public opinion could influence science.

5) Form an activist organization to promote your beliefs.

6) step outside the scientific paradigm and appeal to intuition and belief.

7) Mention the persecution of Galileo and compare yourself to him.

8) Invent a conspiracy theory (Big Pharma is suppressing the truth)

9) Claim to be a lone genius that knows more than all scientists put together.

10) Offer a treatment to the public after only the most preliminary studies have been conducted

11) Set up a website to sell products that are not backed by good evidence.

12) Refuse to admit when your hypothesis is proven wrong

I am in support of those who chose alternative and traditional treatment. I support my friends who chose conservative treatments and do nothing to change their life style.  Everyone must feel comfortable in their decision. 

What gets me is that many of those who chose conventional treatments only get upset with the fact we don't buy everything the medical establishment puts out there. We do our own research, and make our own decision to what is best for us. To add,  on non alternative threads, we don't promote our opinion or  put down people who chose conventional therapy only. It would be insensitive, and wrong.

I contribute the success of my clean mri this year to the alternative approach of supplements, vitamin D, Iodine and thyroid medication.

December 2007, I had a 2 C high grade como/n type dcis surgically removed with very large & clean margins. I chose surgery only. I didn't change my diet, or do anything differently. So, of course, the following year, Fall 2008, I had a b.c. recurrence. I was again dx with high grade dcis, como type/n ... but this time it was worse. My bc surgeon took out a quantrant of my breast, all 100% multifocal high grade/como type/n dcis.  Hmmm...bigger, 100%...margins narrow....taking a bigger risk of surgery only???

 In March, I went to a naturalpathic doctor. I discovered I was hypothyroid, my thyroid was way out of wack. I had almost no vitamin D, and I needed iodine. I added other supplements as well.

Since, my second bc dx was 100% multifocal, no treatment, high grade, I should have had another recurrence, but I didn't. 

There are risk factors and at this point, with what good information, I've read...I choose alternative only. BUT...if my dx was invasive, I might consider radiation or inhibitors ... not sure. For now, I'm going with what works for me.

I didn't "gamble" with my decision not to take AI's or Tamoxifen.  It also had nothing to do with alternative treatments (with the exception of avoiding anything with soy).  They made me sick.  I spent many, many months researching the risks and benefits, and in the end, decided quality of life was the best choice for me.  If I hadn't had the SE's, I probably would have stayed on either of the medications. 

A 50% reduction in recurrence rate only translated to 3-4% in my case. 

Edited to add:  My cancer was invasive (Stage I) and 100% ER/PR+. I had a total hysterectomy years before my cancer dx, but was on HRT until the date of my biopsy.

< 

     "First they ignore you, then they laugh at you, then they fight you, then you win."

                                                                                           --Mahatma Gandhi

<

I don't dismiss alternative medicine by any means.  I strongly believe it is the frontier of medicine, as is complementary therapies.  I believe more aggressive treatments like tamoxifen and aromatase inhibitors make more sense for women who have too high a risk of recurrance to pass up the benefit.  I absolutely disagree with the statement that tamoxifen has only a fixed 2% absolute benefit, as do those who write articles for breastcancer.org.  The absolute benefit varies depending on the risk of recurrance.  If you have an extremely low risk of recurrance, no drug, not even a cure, can offer a benefit in high numbers, it only makes sense when you do the math. You can't save many women, when few are at risk.  So when you look at that group, absolute benefit (ie actual numbers of women save) is low.  But for women at high risk of recurrance, the absolute benefit is much higher and in the double digits.  My wife has ER+ with 6/17 nodes positive.  They tell her, that her risk of recurrance over a 10 year period is around 40% by taking tamoxifen.  They also tell us that her risk would be over 20% higher if she didn't take the tamoxifen.  I leave it to my wife to decide, and she has chosen to take tamoxifen for at least 2 years, review the literature at that time, and decide what to do from there.  Fortunately she seems to be doing well on the drug in terms of not having any side effects yet.  We pray that continues.

In the meantime, she is also taking iodine, maitake d extract, vitamin d supplements, melatonin and tocotrienols.  We want every advantage she can gain, and the supplements offer hope without nasty side effects. Edit: forgot to mention the green tea!

Timothy, I know you are relentless in your research on alternatives, I have always applauded your sensible approach to all treatment options.

I really, really get concerned over misinformation like tamoxifen only provides single digit benefits (though if that were the case for me, with my young children to raise, I would take it!)  I had node-positive, stage IIb, breast cancer that was highly er/pr+.  I can't remember the numbers but my risk reduction was well into the double digits for tamoxifen.  For me, it is probably more important than chemo and I am so, so grateful I have this drug.

If I was told to take tamoxifen only to prevent breast cancer, I probably wouldn't do it.  And i agree that for women with very early stage cancers, it can be a tough call.  But we aren't all in the same situation.  We have to make our decisions based on accurate information.  Its one thing to say that the SEs of tamoxifen aren't worth it in your case.  Fine.  But to say it doesn't offer much help to anyone is just simply not true, and dangerous.  This is, for many of us, a lifesaving medication. 

I took tamoxifen for a year, I had some serious side effects so I switched to

Arimidex which had not been FDA approved for early breast cancer

at that point, 2002 and I took that for four years...I finished up in 2006

I can't believe it will be 2010 tomorrow night...

One of the main problems here is that oncs do not factor diet, supplements, etc. in your odds for survival.

 Another problem is that there is no across-the-board-percentage of effectiveness for Tamox. My CA onc said 5-10% more avoidance of recurrence. My FL onc says 20%. My GYN? 2-5%. WTH???

And hey - if anyone does not agree, that's their perrogative. But the nasty posts are totally inappropriate.  We're here to discuss and weigh stuff out - not to have playground arguments.

Member_of_the_Club - I ate a relatively good diet pre-dx as well. But, I did have some chronic issues that I didn't address and that made me uncomfortable. After dx, I had food allergy testing done and found out I was highly allergic to dairy and eggs. I was addicted to cheese! And, I also had chronic migraines, stomach discomfort, and nasal congestion. When I dropped the dairy, many of these issues resolved. I'm not saying that dairy caused my BC, but I do believe that a chronic condition that is ignored for years and years can lead to disease. If your body is constantly battling to keep well and is continually fighting an antagonist, it just makes sense that it could eventually cause a real problem. Just MHO.

Since the subject of the 5 year limit on tamox came up, I'm posting this so that readers can know the jury is still out on optimum length of time to take tamox.  Of course, as posted above, bottom line is an individual's risk.  For those with low risk, going on, or staying on tamox beyond 5 years is probably not worthwhile.  For those with high risk of recurrence, more than 5 years may be worthwhile.

Anom,

Your post seems to imply that I am suggesting that women shouldn't check to see if there is survival evidence.  I am not suggesting that.  I said "the jury is still out" also  "Longer appears to be better for preventing recurrence.  But its not clear yet if competing risks such as blood clots negate this benefit or not."

Re the subject of risk... for higher risk women such as those with many positive nodes, high grade cancer, IBC or Her2+, the greatest risk for death is from distant recurrence, not local recurrence, and not from potential side effects of treatment such as blood clots or uterine cancer.  Distant recurrence of some aggressive (high risk) cancer often means death within 5 years.  Also, for aggressive cancers, local recurrence is typically followed by distant recurrence, so it is not illogical for a woman with high risk cancer to want to minimize chance of both types of recurrences even if survival benefit has not been demonstrated yet.  For most anti-cancer drugs, reduction in recurrence is demonstrated first, and with time, as more and more BC deaths accumulate in the studies, a survival benefit is demonstrated.  Survival benefit is generally greatest for high risk BC. So for low risk women, it makes sense not to take additional risk from the treatment because as Timothy pointed out above, if you don't have much risk, you can't have much benefit.

Although the alternatives forum seems to get most of its traffic from low risk women, there are some higher risk women who come here as well.  I think its important that they understand that treatment choices that may make sense for a low risk woman may not make sense for a high risk woman.   

re: conventional pusher not citing studies - I have cited the ongoing ATLAS study and stated we still awaiting results.  I am only conventional pusher when it makes sense for a particular individual.  And when I say "makes sense", I mean this broadly - taking into account risk, risk tolerance, potential benefit of treatment, values, and individual health situations.

While you mention chemotherapy for ER+ women, have you looked at this recent "bulletin" from breastcancer.org that states long term survival is increased for hormone receptor positive women taking an anthracycline based regimine?

http://www.breastcancer.org/treatment/hormonal/new_research/20091212b.jsp
 

 Here's a snippet:

SAN ANTONIO (MedPage Today) -- After more than two decades of follow-up, anthracycline-based chemotherapy added to tamoxifen continues to offer a survival advantage for postmenopausal breast cancer, according to a study reported here at the San Antonio Breast Cancer Symposium and online.

Women treated with chemotherapy and then tamoxifen had a 24% improvement in disease-free survival compared with women treated with tamoxifen alone (P=0.002). Chemotherapy also led to a trend toward improved overall survival.

Timothy,

I believe Anomdenet does not understand statistics nor does she ever report any information on conventional therapy correctly. That is just her bottom line. When I asked her to please send me the report where she stated "40% of women who went thru a stem cell transplant, died from the therapy alone" she never presented it to me.Having undergone high dose chemo and a stem cell transplant 11 years ago and having read almost every study published I know anomdenet will be hard pressed to present that particular study, But it is O.K. for her to ask others to present detailed reports for what she believes are errors presented by different posters.

  But yet with no stats available for iodine she will literally "sell" iodine to anyone. interesting isn't it?

 Natada

Hopinfour, here's another explanation.

Lying with statistics: How conventional medicine confuses the public with absolute risk vs. relative risk

by Mike Adams, the Health Ranger, NaturalNews Editor

Which drug would you rather take? One that reduces your risk of cancer by 50 percent, or another drug that only eliminates cancer in one out of 100 people? Most people would choose the drug that reduces their risk of cancer by 50 percent, but the fact is, both of these numbers refer to the same drug. They're just two different ways of looking at the same statistic. One way is called relative risk; the other way is absolute risk.Here's how it works: Let's say that in a trial involving 100 people, two people would normally get breast cancer during the trial duration, but when all 100 people are put on the drug, only one person gets breast cancer, meaning the reduction of breast cancer is one person out of 100. Yet the pharmaceutical industry will exclaim that the relative risk reduction is 50 percent because one is 50 percent of two. In other words, the risk is cut in half from a relative point of view.The headlines promoting this drug, therefore, will always talk about the relative risk -- "A whopping 50 percent reduction in risk!" -- and these headlines will be parroted by the mainstream press, medical journals, the FDA, doctors and drug marketing reps who are always pushing and exaggerating the supposed benefits of their drugs while minimizing their risks. Because, you see, even though this drug may help one out of 100 people, its side effects create increased risks to all 100 people. Everyone suffers some harm from the potential side effects of the drug, even if that harm is not immediately evident. Yet only one out of 100 people was actually helped by the drug.When you look at drug claims, especially new miracle-sounding claims on drugs like Herceptin, be aware that these statistics are routinely given as relative statistics, not absolute. The numbers are distorted to make the drugs look more effective than they really are. Herceptin, for example, produced only a 0.6% absolute reduction in breast cancer risk, yet the medical hucksters pushing this drug are wildly screaming about it being a "breast cancer cure!" and demanding that practically all breast cancer patients be immediately put on it. Yet it's not even effective on one person out of a hundred. See my Herceptin Hype article for more details.Reverse the perspective for natural treatmentsAt the same time, when conventional medicine promoters want to discredit a natural substance, an herbal remedy or the effects of nutrition on health, they always talk about absolute risk. If taking green tea supplements reduce the risk of cancer by that same 50 percent, eliminating cancer in one out of 100 patients, the news about that supplement would be something like this: "Green tea doesn't work. Only helps one out of 100 patients."In fact, a study comparing some anti-cancer drug with green tea might report: "New breakthrough drug reduces cancer risk by 50 percent! Green tea only helps one out of 100."It's the old joke about an Olympic race between the United States and the old Soviet Union. In the race, there were only two participants. The Soviet runner came in first, the U.S. runner came in second, but the U.S. newspapers reported, "U.S. Wins Silver Medal, Soviet Union Comes In Next to Last."Now you know how drug companies, the FDA, the popular press and many doctors lie with this numerical shell game. It's a clever way to promote the minuscule benefits of pharmaceuticals while discrediting the enormous healing effects of natural remedies.Now, do you want to hear some real statistics on cancer? I'll share a few. Out of every 100 women who might get breast cancer, 50 of them can avoid breast cancer by simply getting adequate levels of vitamin D in their body, and that's available free of charge through sensible exposure to natural sunlight, which produces vitamin D. This vitamin, all by itself, reduces relative cancer risk by 50 percent, which is better than any prescription drug that has ever been invented by any drug company in the world.Combine that with green tea, and your prevention of breast cancer gets even stronger. Even the World Health Organization says that 70 percent of all cancers are preventable, and in my view, that number is conservative, because if you combine sunlight therapy and green tea with anti-cancer herbs, anti-cancer foods such as garlic, onions, raw broccoli and raw sprouts, plus some rainforest herbs that are well-known for inhibiting the growth of cancer cells, then you can boost your cancer prevention success to well over 90 percent.There's nothing in the world of pharmaceutical medicine that even comes close. Yet the only thing you'll ever hear from the drug company-controlled mainstream media, medical journals, the FDA and most old-school doctors is that natural remedies are useless, but prescription drugs have all been scientifically proven. Sure they have, if you fall for the relative risk gimmick and can't do basic math.

http://www.naturalnews.com/019368_cancer_brst_cancer_relative_risk.html