Tamoxifen absolute vs relative benefit--is it worth it?

Tamoxifen, or Als, are the best chance for survival among women with estrogen positive cancer. Many Stage IV women are kept alive for years with just these drugs (meaning no chemo). What study are you talking about regarding 40% women being resistant to Tamoxifen? LINK?

Interesting study... they definitely need to come up with something more definitive about the effectiveness of anti hormone therapy. For those of us that well on it it obviously isn't quite as important. However for those of us that suffer moderate to severe SEs that impact our QOL its more vital. Right now the only way to know is to see if there is a recurrence! Good luck to all navigating this disease.

I just want to add: are hot flashes worse than dying from breast cancer?

I'm a Stage IV patient who's only line of treatment (aside from surgery) has been the hormonals. I started on Tamoxifen and couldn't tolerate the SEs. After attempting to shut the ovaries down unsuccessfully with Lupron, I had a total hysterectomy and ovary removal last year. I started on Arimidex a few months later. I find the SEs on it to be much manageable than Tamoxifen. My onc has worked with me to find various supplements that help with SEs. My latest scans show I'm NED. I pray that these drugs provide me many more cancer-free years.

Hi - this was a very useful link- thank you. It was a good explanation about absolute vs relative risk.

Still unsure of whether or not to take tamoxifen....My main worry is weight gain (I'm already overweight) and have pre-diabetes and it is meant to not be good for the blood sugar.

A friend who is a naturopath has recommended DIIM but not sure about that either- so confused!!

Goodie, thanks for that explanation. There is no question that tamoxifen saves lives. Of course, there are no guarantees, but I'll take the odds and stick with tamoxifen, for another 5 years - completed my first 5 of Aromasin, then tam, last December.

I don't think I said anything negative about those who forego hormonals. It is obviously everybody's choice, but I think it's fair that they know the odds. Hope you do well also!

It is important that people do know their odds when making the decision to take or not to take Tamoxifen. And for those of us with early stage BC the odds are that we will never have a recurrence whether we take this drug or not, which makes the question about if it's worth it a valid one! I don't think anyone with early stage BC has been told their odds of a recurrence are more than 50% if they don't take Tamoxifen or an AI. Weighing the potential benefits of these drugs against their potential risks ought be part of the decision making process--BC risk reduction which varies from person to person, increased bone density with Tamoxifen for postmenopausal women are some potential benefits. Potential problems include no only really annoying and sometime debilitating SE like hot flashes, bone and muscle aches, but also an increased risk of endometrial cancer and blood clots for Tamoxifen users, weaker bones and possible heart problems for AI users.

In my case, tamoxifen changes my odds of a recurrence from something like 15-20% to 8-10%-not a huge difference, but definitely an improvement-enough that I've taken Tamoxifen for the last year-minus a vacation from it last July due to medical procedure and just recently for the month of March due to wanting to feel like a human being again-back on it for the last 5 days. I still wrestle with my decision all the time (obviously), especially since Tamoxifen related constipation has caused me to develop rectocel (not fun), an ovarian cyst, and to have to have one uterine biopsy so far (very, very not fun). On the plus side, I don't have a lot of hot flashes or muscle cramps and my recent DEXA scan (last one was done prior to starting Tamoxifen) shows some improvement in my osteopenia-still no chance of switching to an AI for me, my OC just doesn't think I need it or that I'd like it very much and with the osteopenia she won't prescribe it unless I'm willing to take bone building drugs (no thanks).

In any case, I do think it is important to ask this question (" Tamoxifen absolute vs relative benefit--is it worth it?")and look at your personal odds, risks/benefits profile. This is not a no brainer, as sometimes seems to be suggested on here, because most (definitely more than 50%) of those with early stage BC will be fine w/o taking these drugs (which means most of us taking them get no benefit from them) and because none of these drugs are without risks. For me, surgery was a no-brainer, radiation after my lumpectomy made lots of sense statistically, chemo was never on the table due to oncotype score, but the choice to take Tamoxifen was really difficult and staying on it hasn't been easy either.

One of the most helpful things my doctors told me throughout my treatment is that none of the choices (other than having a surgery or doing nothing) I needed to make--lumpectomy v mastectomy, rads v no rads, prone position? nodes? taking or not taking anti-hormonals either guaranteed I'd beat BC or that I'd be doomed by it. There are no right and wrong choices. It's all about playing the odds, weighing potential risks v potential benefits, your own risk tolerance, etc. but know the odds, if you have early stage BC, the stats say you will be fine with or without anti-hormonals and realize in many cases taking anti-hormonals only minimally improves our odds. Still, improving already good odds, is not something to be dismissed out of hand! I just think people should be told the truth, that refusing anti-hormonals is not like playing Russian roulette or something equally dangerous-if you have early stage BC the odds are good, no matter what you choose to do in terms of taking or not taking anti-hormonals. Refusing them is not going to doom you to a recurrence and taking them offers no guarantees of continued good health either .

There is no crystal ball. We can't see our future. We don't know what will happen to us. What can we do? We can do the best to prepare ourselves from recurrence and spread. Can we be proactive and take anti hormonals if we are hormone positive? Yes. Then, why are we having this discussion? Fear. Fear of the unknown. In order to begin treatment, it is good to examine why we are afraid to pick up a new prescription or open that bottle. I understand being scared. I understand fear. But, looking for percentages, or fighting about odds, begs the real culprit. How do we deal with fear of taking a new medication? Each one of us has do deal with the fear. Some fear dying (I do). Some fear side effects (that was me prior to taking Tamoxifen). I think we all fear the unknown. When I was diagnosed, I had paralyzing fear of dying. I hid out at my sister's house for 2 weeks. I did not want my kids to see me scared. I ended up working with my counselor from post-partum depression days and worked through my fears. It was hard work and I had to verbally face my fear of mortality. To go from routine mammogram on 8/1, to ultrasound and potential diagnosis on 8/2, to biopsy on 8/3, to definitive diagnosis on 8/8, really put me in a tailspin. Nothing like this had ever happened to me before and nothing can prepare you for the very raw feelings that this diagnosis brings. But, you know what? I am healthier today than I was a year ago. I feel great and have alot of energy, but I have to push myself everyday to have this health. It is work. Alot of work. But, I feel like I have climbed a mountain and am now looking down at the trail I have left behind, metaphorically. The challenge is that we have to keep working on ourselves, to get to the best version of ourselves. It is hard, it is scary and we can do this.

My MO says more like 60% don't complete based on SEs.

Hello! I am Er- Pr+ Her2+....Dr is recommending Tamoxifen.....anyone else out there Er- Pr+ taking it?

ksusan....wow that's even worse! Why is this ok? Why isn't there more research on better treatment options. There other issue that comes to mind is if 50-60 percent don't complete the 5 years then the stats about anti hormone treatment effectiveness are completely skewed. I'm not aware of any studies that follow those of who refuse it or take less than 5 years. IMO there is much improvement needed in this area. Good luck to all navigating this disease.