Should I quit taking tamox? Help!!!

Hi, kdholt - I can't help directly, other than to say that my doctor asked me if I wanted to take it (since I am strongly ER+), and I told him that in the past (while trying to have a baby), the ONLY thing that corrected my estrogen dominance was diet/lifestyle, not drugs. He nodded and said he was totally fine with my not taking it. There are quite a few women here who either refused it from the get-go or discontinued it, and many were surprised that their doctors didn't even seem surprised that they stopped it. A close friend of mine has also stopped it after 2 years, and I'm trying to talk her into not resuming it (with her doctor's blessing, of course).

BUT!!!!!!!!! I firmly believe that you MUST adopt an aggressively anti-cancer, hormone-balancing diet and lifestyle if you go thisroute. After all, doing what we did before is what brought us all here, right? DIM is a great start, as are I-3-C and calcium d-glucarate, all of which help the body rid itself of excess estrogen, but it's also a good idea to eat plenty of broccoli, cabbage, and other cruciferous veggies, as well as herbs/spices such as turmeric (a great reason to learn to love curry dishes!)... whole foods that naturally bring hormones into balance.

Have you read the thread on balancing hormones naturally, as well as the one on progesterone cream? Those two, among many others, are a wealth of information on helping your body remain cancer-free without tamoxifen. 

I took tamoxifen for 26 months.  Part of why I stopped taking it was due to lingering ill effects that I first thought were from chemo or rads, but 2 years later, I wondered if it couldn't be the tamoxifen.  My top complaints at the time were hot flashes, fatigue and nausea.  Hot flashes were the only side effect that disappeared from discontinuing the tamoxifen.  That was nearly 2 years ago and I finally began to realize that my primary care physician was not up to date on thyroid issues, and I'm not sure anyone in my community is.  I've been on a self help learning curve ever since.  I recommend you start learning about iodine.  There's an active iodine thread in this section and you'll find links to other information where you can learn more. 

I do know all about the rollercoaster of guessing whether you're doing the right thing. I also post on the YSC website, and I recently noticed that a very large number of the girls who took Tamox either had a recurrence, or actually died.

In Fall 2007 I took Tamox for a few weeks, scared to death because I have a family history of stroke...and I was not stoked about the possible cancer side effects. On top of that, the Tamox gave me anxiety attacks, which I have never had before in my life. And it wasn't worry over the Tamox - it was wierd-creepy- I'm-a-mental-patient feelings. I decided to stop taking it. I have gotten lectured, or at least firmly talked to, by 3 different oncologists, 2 gynocologists, and 2 surgeons about my choice. Meanwhile, I take Brevail and calcium d-glucarate, and of course I do the dietary stuff. HOWEVER>>>

I am currently going through a self-eval, after recent studies that suggest a lot of the dangerous side effects are due to the fact that the standard 20 mg dose is very unneccesarily high for a lot of women. Tests show that even when reducing the dose to 1 mg, the same level of chemoprotective activity took place. WTH??? Why do they give us all 20 mg?? The 'more is better' theory???

So now I'm once again weighing out the possibility of taking 1/4 of a pill every other day, as a BC friend of mine has chosen to do (she also eats healthy for the most part). She feels great - no yucky side effects. And the doctor mentioned that her 'good' breast is less fibrous now.

Hmmm....what to do???

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There is only a 2% absolute benefit for Tamox. Many people recur whether they take it or not so JenJo, don't draw the conclusion not taking Tamox made any difference.

^{http://jco.ascopubs.org/cgi/content/full/20/15/3328}

The absolute risk reduction in these trials was less than 2per 100 women given tamoxifen for 5 years. The absolute riskreduction anticipated in an individual woman depends on hercalculated breast cancer risk, with women at higher risk havinggreater potential benefit. For instance, the average 65-year-oldwoman with no family history has an anticipated risk reductionof 1 per 100, while a 50-year-old woman with two affected siblingsand two prior biopsies but no germline mutation has an anticipatedrisk reduction of approximately 2.5 per 100.

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I get very tired of seeing this misleading information about a 2% absolute reduction. YOUR ABSOLUTE REDUCTION DEPENDS ON YOUR RISK OF RECURRENCE. So yes, those of you with only about a 5% risk of recurrence after whatever other treatment you've had will only get an absolute reduction of 2%. BUT those who have a risk of recurrence of say 12% after surgery, radiation, and chemo, will get an ABSOLUTE RISK REDUCTION OF 6%. Besides which the study aromdent cited is about PREVENTION of bc not TREATMENT. And yes I am yelling, because aromdent goes around citing this misleading statistic on all sorts of threads about hormonal treatment and I would hate for people to believe her and use that information when making treatment decisions.

And the docs I know are absolutely telling patients to loose weight, eat right, and exercise. 

The OP may well be someone for whom tamoxifen will not offer a large benefit. But for other women the benefit has been shown through peer reviewed research over the past 20 some years to be well worth the risk. 

I feel the way that crunchy does-if we do everything we did before, we will probably recur because our bodies have the same reaction to a breakdown in our system somewhere. That is why I think it is so important to figure out your own disease. The more I studied, the more I realized my hormones were out of whack. I took tests that verified this, then worked to balance them. Then I looked at all the carcinogens in my environment, and got rid of all I could control. Then I looked at my diet, and changed it so that food was more about nutrition than comfort. Next I looked at my deficiencies, and found that my thyroid was underactive and my iodine and Vit D levels were low. I upped my exercise level because it helped me to destress, and I got control of my emotional health by learning to let go of a lot of crap. By taking control of my own health, I feel empowered and energized. No little pill could possible given me better odds than the changes I have made. Yes, this way does take more effort than popping a pill, but it is worth it to feel great after many many years of feeling lethargic. And it gives me total peace of mind that I made the right decision.

Until they do these studies on hormone blockers like tamox with a triple blind, including women who follow the kind of protocols that I now follow, I do not give them much credibility. Drug companies are getting rich on these drugs so of course they will not sponsor any study that would put their drugs in jeopardy of being pulled for more natural methods. In the meantime, feeling great is proof enough for me that I made the right choice.

It is an individual choice. Just make sure you make an educated one before you leap.

KD - I know how hard it is to say no to the standard of care, but I just recently chose to stop Tamoxifen as well. I took it for a year and a half, and I felt lucky that I didn't have any side effects, but it turns out that was because I am not an efficient metabolizer of tamoxifen because I lack a specific gene.  So, the tamoxifen really wasn't doing anything for me anyway.  I am premenopausal, so I couldn't do any of the other drug options for hormone blockers, but even if I could, I don't think I would choose them. 

However, my cancer was pretty advanced (stage III), so I decided that If I wasn't going to do the tamoxifen or AI drugs, I at least wanted a way to know I was taking the right doses of DIM and other supplements and being able to measure if it was working as it should. I have chosen to see a holistic doctor. He's an MD who is going to test where my hormone levels are and figure out a specific and measurable plan to ensure that what we are doing is effective for my unique body composition. Everybody is slightly different, so the dosage and supplements that work for one person, may not be the right thing for another person.  

Good luck and trust in yourself to make the decision that is right for you.

DeAnn 

DeAnn-Congrats on finding a doctor who is going to look at your own personal chemistry, see where you are deficient and go from there instead of the one size fits all approach. This is what we ALL need to find. We are not stats, we are humans and what may work for some of us may not work for others. We all need to also trust that inner voice that will help us make the right personal decision. When we make the right choice, we will feel the sense of  peace. When I tossed the arimidex, after months of agonizing over it, but only taking it a few days, I felt like a two ton weight had been lifted. That is how I know it was the right choice. I felt free of the albatross.

Nan: let me echo you on "What's wrong with Tamoxifen:

WEBMD, Aug. 25, 2009 -- A new study links long-term use of the breast cancer drug tamoxifen to a rare but aggressive form of breast cancer,............[Note from Yazmin: BUT, AS USUAL: Not to worry ]:   experts say the findings shouldn't stop breast cancer patients from taking tamoxifen.

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Tamoxifen: Risk of Rare Second Breast Cancer?

Treatment With Tamoxifen for Breast Cancer Patients Shouldn't Change, Researcher Says By Miranda Hitti
WebMD Health News Reviewed by Louise Chang, MD

Aug. 25, 2009 -- A new study links long-term use of the breast cancer drug tamoxifen to a rare but aggressive form of breast cancer, but experts say the findings shouldn't stop breast cancer patients from taking tamoxifen.

"We don't think that it overall changes the risk-benefit equation, in that women who are eligible to take this drug probably should still take it because of its proven benefit," researcher Christopher Li, MD, PhD, an associate member of the Fred Hutchinson Cancer Research Center in Seattle, tells WebMD.

"I think the worst thing that could happen, on a public health basis, with this paper is for patients and their doctors to look at this and say, 'Oh, this is a reason not to take tamoxifen.' Nothing could be further from the truth, for the reason that it obviously has enormous benefit," says Victor Vogel, MD, MHS, the American Cancer Society's national vice president for research.

Here's a look at the study Li and Vogel are talking about -- and why they stand by tamoxifen's use in breast cancer patients with "ER positive" breast cancer.

Most breast cancers are " ER positive," or estrogen receptor-positive. That means they grow when exposed to the hormone estrogen. Tamoxifen and other breast cancer hormone therapies thwart ER-positive breast cancer cells. 

"ER negative" breast cancers, on the other hand, are rarer, tend to be more aggressive, and are more difficult to treat. They're not treated by tamoxifen or another class of estrogen-related breast cancer drugs called aromatase inhibitors, because ER-negative breast tumors aren't sensitive to estrogen.

Tamoxifen Study

Li's team studied data on nearly 1,100 Seattle-area women aged 40-79 who were treated for ER-positive breast cancer between 1990 and 2005. The group included 367 women who developed breast cancer in their other breast at least six months after their first diagnosis.

Li and colleagues interviewed all of the women and checked their medical records, noting any use of tamoxifen or other hormone therapies to help prevent breast cancer's return, and how long those drugs were used.

Most of the women took tamoxifen -- aromatase inhibitors are newer drugs and weren't available during many of the years studied. And most of the women didn't have another cancer develop in their other breast.

Women who used tamoxifen or other breast cancer hormone therapies were 60% less likely to develop an ER-positive cancer in their other breast, compared to those who never took tamoxifen.

But women who used tamoxifen for five or more years were about four times more likely than women who never used breast cancer hormone therapies to develop an ER-negative tumor in their other breast.

Tamoxifen use for less than five years wasn't linked to ER-negative breast cancer risk. The study didn't include any women taking tamoxifen to try to prevent a first breast cancer.

And MORE on what's really wrong with Tamoxifen:

Yazmin wrote:

....And here is more on Tamoxifen. I know, I know: some people on this forum, feel that Breast Cancer Action is simply "anti hormonal treatments." The way I see it: this is an advocy group, with NOTHING to sell. Just as important: they are breast cancer victims, just like us:

http://bcaction.org/index.php?page=policy-on-pills (Policy on Pills for Prevention)

http://bcaction.org/uploads/PDF/SanAntonio3.pdf (Results of Approval of Tamoxifen for Risk-Reduction)

http://bcaction.org/index.php?page=990518-2 (Tamoxifen News at ASCO is Bad News for Women)

http://bcaction.org/index.php?page=newsletter-35a (Debunking a Wonder Drug)

AAAAAAAAnd for the people who would be content to be the 1 or 2 percent for whom Tamoxifen helps postpone whatever, I just hope and pray that it certainly does not end the same way it is now ending for one of my dearest aunts: after battling breast cancer, she is now battling Tamoxifen-induced uterine cancer.

Not a statistic. Just my very dear aunt.

I think if the anxiety about a recurrence is so intrusive that it is affecting your life, you should absolutely take tamoxifen.  It sounds like your side effects weren't nearly as bad as your anxiety.  Don't let the misinformation get to you -- tamoxifen has a proven track record.  I am alive five years after my diagnosis in part, i truly believe, because of tamoxifen.  After my five years on tamoxifen I will be switching to an AI because I have to live to raise my children.

And I feel good.  I run 5 to 7 miles a day, I weight less than when I started tamoxifen, and most of all, I am alive. 

Yaz, I PMed you.