Is Tamoxifen Worth It?

Dustien...Hi. Sorry you have to be here but welcome. You are in the scariest part of this. Once you have all the details and a treatment plan in place you will feel better. IMO you cannot make an informed decision about Tamoxifen until you have your MRI and surgery to check your lymph nodes. Hopefully they will be negative. I also don't think you can assess your risk of recurrence until you have these facts. Once you have them you can then go ahead. Good luck and keep us posted. W are all here for you.

I have been on tamoxifen for nearly a year and my side effects are also bearable. Truly not awful and I have never once wished the pills away. I honestly don't remember what % survival the tamoxifen adds for me, but watching a close family member go through painful stage 4 recurrence makes it absolutely worth it to me. It comes down to what level of risk you are willing to take, and for me the couple % risk of blood clots, etc are better than the risk of this monster popping up in my bones. I also had one positive node which scares me. However my stage 4 family member had negative nodes many years ago. These cells just sit dormant until they decide to wake up. I'm slated to take tamoxifen for 9 more years. I honestly hope in 9 years they have something else I can take. I would not want to be without cancer prevention.

I've been on tamox since September. I haven't the hot flashes etc. I have had more issues with it drying my nasal passages and sinuses and giving me a fuzzy head. Completely doable if in the long run it may help to prevent recurrence. No issues with it otherwise. Honestly, you don't know until you try.

I guess forgot important info but are they giving tamixifen post menopausal. Chemo put me in menopause and I was told I couldntt take it that I had to take an Ai. Anyway I didnt always remember my arimidex and now I wish I would have paud better attention. It may not have changed anything but I always try to suggest taking the pills the mo suggest. Best of luck. Healing hugs and prayers sent.

Always remember that Tamoxifen and AIs are not the same class of drugs and do not have equivalent side effects, especially in premenopausal vs. menopausal women. I see lots of posts here where women are attributing purported potential side effects of aromatase inhibitors with tamoxifen and the drugs are completely different and are not equivalent. Tamoxifen leaves circulating estrogen intact and prevents that estrogen from binding to estrogen receptors in your breasts. Aromatase inhibitors prevent postmenopausal (or women who undergo ovarian suppression) from converting androgens to estrogen. That is a very simplified explanation, but the drugs do indeed work completely differently and have different side effects.

It's pretty easy to find horror stories on the net about Tamoxifen. Women who suffer with all sorts of side effects tend to be vocal about them, looking for help and support. (And rightly so!) 
What you don't really hear about are the women who do quite well on Tamoxifen......and there are a lot of us out there! 
Yes, Tamoxifen comes with a wide array of side effects, however that does NOT mean you will experience all of them or even some of them. I've been on Tamoxifen for 2 years in March. When I first started taking it, I did have night sweats and hot flashes. However, over time, they decreased. And that's pretty much it. 
Please don't dismiss Tamoxifen before you even try it! You may be one of the many women who do well on it.....but you won't know unless you give it a shot. And if you're not, well then you can always stop taking it. No one said you have to continue on it if the side effects decrease your quality of life.
As for how many people have a recurrence after taking Tamoxifen versus those who never took it......to be honest, I really believe cancer, (and the recurrence of cancer) is a total crap shoot. I know of women who took Tamoxifen and the cancer came back. I know of women who refused Tamoxifen and the cancer has not come back. I know of women who are on Tamoxifen with no recurrence. I also know that my mother was one of the women who refused Tamoxifen and is now dead from Metastatic Breast Cancer. So....if there is something out there that has been shown to reduce the risk of recurrence, shouldn't we at least try it?

Peregrinelady, you are so right!
I'm very sorry about your sister. 

Hey, Dustein, you get to be scared and worried, too! That's not somehow reserved for people with higher stages or more complex circumstances.

You might want to look up all of aspirin's potential side effects, or water, just to put Tamoxifen in perspective

All along the way you're going to have choices. If you come to BCO, you'll hear a range of opinions, and you'll get a lot of support. Dr. Google is likely to just frighten you and it's not interactive. Take it a step at a time, and do consider joining the threads where groups of people are doing the same general activity at the same time--you may be getting different surgeries, but everyone in the thread has overlapping questions and useful resources and support for others, for example.

I have taken Tamoxifen, which I lovingly call, "Tamox o fun," for over a year. I really am doing great and am thankful for the medication to reduce recurrence.

Not sure, but tamoxifen is a widely used generically available drug so it should be on the lowest tier of your plan if you have a tiered drug plan. If it's not, I do believe it's on the lower cost formularies at some of the retailers (I think I saw it as $9 on the Target formulary). I have a Cigna commercial plan (via employer) and my tamoxifen is actually free. It's considered preventative. That's pretty smart for them to do that. It costs them a lot less to pay for my tamoxifen than to pay for a stage 4 recurrence...

Dust, what silver plan do you have? I have found most generic meds are free on gold and silver through BCBS.

I am on the gold plan with bcbs and Tamoxifen is free. Yours will be either free or very cheap.

I have BC/BS and it cost $4.00. Can’t beat that.

Diane

I was on Tamox for a year and had no problems. Remember that most who post about any kind of anti-hormonal on this website and others will be looking for confirmation of negative side effects because they are worried. Those who do fine on the drug (the majority) won't be having problems, and won't be looking for relief or answers.

Careful with Dr. Google, too. He is oftentimes an alarmist with no real research experience

Claire in AZ

Dustie - It's completely normal to be "not thinking straight" at this point in time. Anxiety paired with a vast amount of info can do that to you. I think it's human nature to try to be prepared.

There's also a difference between someone being given a pain med for an injury or an antibiotic for an infection vs one of these drugs. People tend to not be concerned about something that they will only take for a few days. When you're told that you'll be on this for 5-10 years - well, that's a different story.

I tried Tamoxifen for 3 months and quit due to intolerable SE's. I worry about not being on something. It's possible that some of the problems I was having could be related to my other treatments (chemo or Herceptin) or recovery from them. I hope to try it again, perhaps at a lower dose.

I would always recommend that anyone at least try to take the medications being prescribed for them. It really is a matter of determining the actual benefit to you.