Should I quit taking tamox? Help!!!

Please allow me to "add another log to the fire" of this discussion. About a year ago I had a conversation with a board member from another BC foundation. I stated that when a woman dies of bc, this is not what is recorded on the death certificate. It usually states another cause, such as heart failure, kidney failure, etc. So, the numbers as to deaths from bc are then skewed. Even though the dx of bc led to a woman's death, that will not ever be included in the statistics for bc. She agreed 100%!

There was a recent article which stated that the number of women dx with bc has risen to 210,000, up from 185,000. Again...puleeeze do not make me search for that article!

I really needed to read this thread. I was er and progest- positive (high grade) and after brief research on tamoxfin I decided not to take it. Because I chose surgery only, I was led to believe that I was at higher risk for a recurrence. After reading this thread, I now see that because I refused cancer treatments, I'm at less risk for a recurrence for b.c. Another reason I refused tamoxfin is I did not want to put myself at risk for strokes or other cancers. Since learning last Spring that I have a disabled thyroid which causes very high cholesterol, if I had taken tamoxifin I could had easily had a stroke. BC doctors do not often ask about your thyroid or other risk factors when prescribing the drug. I had to do my own research.

After my first recurrence, I went to a naturalpathic doctor to find out why my breast developed cancer. I discovered that I had almost no vit D, my thyroid was way out of wack, and I desperately needed iodine and thyroid med's. This is my cancer treatment. Getting my body healthy to fight the disease and to hopefully keep me from having another recurrence.

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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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The above study deals with using Tamoxifen as a chemopreventative agent for women who have never had breast cancer and not as an adjuvent for preventing recurrance of breast cancer.

Therefore the statement of 2% absolute benefit refers to the general population of women who have never had breast cancer, and that are considering taking tamoxifen as a preventative measure. Their lower risk, translates into a lower absolute reduction rate. The 2% statement does not apply to women like the original poster who may have a higher risk owing to a previous diagnosis of breast cancer.

Read the study linked to and see for yourself what they were writing about.

Whoa, this idea that you are more likely to have a recurrence if you pursue adjuvant therapy than if you don't is total garbage -- dangerous garbage.  Look, if early stage women want to make an informed choice to bypass these meds thats fine.  But spreading misinformation helps no one.  And the further advanced your cancer is, the greater the benefit.

 I run and work out, have been a vegetarian my entire adult life and in general pursue a healthy lifestyle.  But I was doing all those things before I got bc, so I will never believe it is sufficient. 

I'm sure the ten tamoxifen takers who died counted themselves as statistically significant.

http://www.preventcancer.com/patients/med_avoid/tamoxifen.htm

Wow...is this a lively topic and one I have been going back and forth about.  I got BC when I was 37.  It was 8mm with no node involvement. It was IDC with ER+ receptors.  I was treated with a lumpectomy and radiation treatment.  No chemo or tamoxifen.  Thought all was going well until this past October...13 years after 1st diagnosis I found another lump in same breast and area. It was 5mm and also IDC with ER+ and PR+ receptors.  Had a mastectomy of that breast and also reconstruction.  Oncologist said no chemo, but wanted me to take tamoxifen.  I just don't know if it will benefit me or not at this point.  I have always been healthy as far as diet and exercise and I have none of the "usual" risk factors. I did not take tamoxifen the 1st time around, but would it of prevented this new cancer if I had? I will never know, but it does go to show that the darn cancer can come back after being free of it for so long.  Onc says that it is a "new" cancer, not from original cuz there was so much time inbetween, but it was same kind, same breast and same area...just a coincidence?  So I have taken Tamoxifen for 2 days now, but am going to a Cancer Treatment Center of America for a second opinion becuz I would love to have a different option for naturally controlling my hormones rather than having to take Tamoxifen and worry about all the possible side effects on top of everything else!  I chose this place because they use conventional, alternative and nutritional means to treat cancer and really hope they can recommend something for me besides the tamoxifen.  My gut is telling me I don't want to take the tamoxifen...just hoping I get some backup from the CTCA...they are known for their indiviualized care...hoping they will help me make an educated decision on this.  I think it is a really tough decision and different for everyone.  I do know some friends who took tamoxifen and did well, but don't know if they would have done just as well without.

As usual, another ALT thread turns into a giant cluster**** of misinformation, misunderstanding, and confusion.

There is a difference between preventing cancer and preventing recurrence.

Do you know that a breast cancer survivor has a 20-40% chance of a new primary breast cancer? Do you think that this is the number for any woman? No, it is for someone who has already had breast cancer.

People think taking a Vit. D or iodine supplement is going to prevent a recurrence? Do you read news articles? They just decoded the genome of a couple of other types of cancer. There were tens of thousands of mutations in the cancer cells. This damage has occurred over a lifetime. Get it? Taking a supplement today does nothing, nothing to change the damage you have suffered over your lifetime.

Ay yi yi. This forum.

Timothy...I took oncotype test and had very low score of 7.  That is why I did not have to have chemo, but they still put me on tamoxifen.

It is my third day taking tamoxifen and I took one this morning...I have been nauseated since taking it and wondering if it is from that.  Guess I will know if I keep taking daily and feeling sick. Sure do not want to feel like this everyday for 5 years!!!

-Janer

Women with a very low risk of recurrance, such as those with less than 10% chance of recurance, will have only a few percent of improved outcome.  But women with a high risk for recurrance, say 60% chance of recurrance, will have significant benefit that will be in the double digits.  You need to look at the individual and their predicted outcome with and without it.  Its not a simple matter of saying it only improves outcome by 2%.  That would probably only apply to women having little risk to begin with (less than 10%).

Timothy, that website quotes Relative risk stats, not Absolute risk.

Those website stats are completely misleading. Look up the ASOLUTE risk stats.

Timothy, what would you consider low risk for recurrence or high risk? As far as I'm concerned all bc women are at higher risk for future cancers. This is why we are here. We are looking for ways to cut our risk for a recurrence. Some of us feel safer taking the alternative approach, and others both.

 Tamoxifin may help prevent breast cancer, but puts you at higher risk for a stroke, or other cancers. It's the other risk factors that come from taking tamoxifin that worry me. Knowing the side affects of tamoxifin, no way, I cannot take that risk.

oneworker, on this thread? If its so annoying to you? there are plenty of other threads where you opinion is agreed with.  Also, if you want to quote statistics, please post a link so we can all read where you are getting your numbers from.

Hi kdholt,

Knowledge is power however too much research can also do your head in.  There is so much information on both sides of the fence, good and bad on tamoxifen vs alternative therapies.  I am on tamoxifen (10 months) and have no problems at all.  My friend has just had a lumpectomy and she is going to go down the alternative therapy road.  We both support each other, we both don't try and defend our opinions and we agree that our way is the best way for us, not anyone else but us.  You need to get that courage of your conviction - how do you get that?  Well I had to take a step back from everything breast cancer for a while and try and move on.  Basically the odds are  0% or 100% - we will get a recurrence or we won't.  How we live our lives and how we can get the best quality of life as we move forward is the most important thing.

I hope you get some peace and feel confident in your decision, whatever that may be, soon.

big hugs

Helena