Anyone refused Tamoxifen?

Thanks for posting this. I'm a new to this website and joined just to ask this question! I've heard stories of women having a hard time with Tamoxifen (one woman said it was worse for her than chemo, and I know someone who had a serious problem with blood clots.) CancerMath thinks the benefits for me will be low (anyone know how reputable that website is?).  I'm 46, no chemo, finishing rads. I have a follow up with my MO in a couple of weeks so I'll discuss it then. It's possible that women who refuse Tamoxifen wouldn't be reading this discussion board, but maybe someone here knows other women who have passed on Tamoxifen? I've known women who stopped after a couple of years, so another question is whether this is benefit taking it just for the first year or two. thanks.

'Im now 56 and I refused tamoxifen over 7 years ago when I was 49...refused arimidex and radiation after lumpectomy too.  I've done just fine without any of it thus far. Recently got the results of my latest mammogram and it was once again clear. My tumor was small, DCIS combined with IDC and grade 1 though, and I was newly into menopause at the time of diagnosis. Refusing everything but the lumpectomy and SNB (just one node removed) was the best choice for me and I haven't had a moment of regret and still wouldn't even if I get a BC diagnosis again someday. 

Yep, I refused it too. The first time I met my oncologist after BMX I told him I needed a couple more weeks to think about it. I just needed more time to research. I am 43, premenopausal and have a history of Endometriosis. The more I learned about Tamoxifen the more sure I became not use it. It seems like I would be risking one cancer for another. But the thing that really sealed the deal for me was this: I was looking on a public notice website called Prop 65. In Ca. It is law that all known carcinogens are listed. Tamoxifen is on there twice. It is a known carcinogen to cause cancer.

Monday I went back to my Dr. He wasn't exactly agreeable with my decision until I mentioned Prop 65. Not another word about Tamoxifen. His reaction was interesting to say the least.

I am now seeing a Naturalpathic Dr. And starting a program with Indole 3 Carbinol ( DIM)

I am also having my hormones checked next week. I am estrogen dominate which most likely means my progesterone & other hormones are too low. Learn, learn, learn and make your decisions IDC Stage 1. 1 cm. ER+HER2 Neg. BRCA2 Neg. BRCA1 undetermined?

I have the bottle, not taken one yet. My Onco score was 15, I refused rads and only 2% benefit from chemo. I don't know if I want to start with the tamox. My M/O left it up to me. I said write the script, but I'm hesitating. I will look into Prop 65 although I don't have ovaries or uterus so no risk there. It's been around for a long time and studied alot. It's very inexpensive so I won't be thinking the pharma are making a killing. I don't know what to do.

Hi Rianne2580 

It's early in Ca & I am working on my 1st cup of coffee so the answer to this question might be completely obvious....but bear with me since I am not fully awake yet lol! If you don't have your ovaries or uterus why are they prescribing Tamox?

This is a  heavy hitting medication with many side effects. I weighed ' risk- benifit' and it just didn't make sense for my  type of cancer. I wanted to know exactly what is going on in my body to contribute to BC? Hormone levels, complete metabalic panel & genetic testing of suppressor genes as well, like P53 too. My estrogen dominated for good reason, everything else is all messed up!  working on balancing my  body & going from there whatever decision you make will be the right one!

Peace. 

I really struggled with starting tamoxifen and finally after months of delay I caved in to the pressure from my onc. I stopped taking it 8 months later due to joint and bone pain.  My benefit was a 5% decrease in recurrence and after a lot of research and soul searching my DH & I agreed that quality of life was more important then that 5%.  I was 38 at dx and felt like I was 90.   Not only was I suffering but my family as well.   I am at peace with my choice and looking to bring balance into my my life>  I will be meeting with a NP  soon to discuss DIM and other alternatives.

corian - Thank you!  It is nice to be validated.  I kept telling my onc that I just cannot reconcile depriving my body of all estrogen on the 'chance' that I have a stray cancer cells floating around somewhere in my body.  I kept saying that there must have been a wild unbalance in my system for the cancer to grow like it did and that bringing my system into balance seems wiser then throwing it into another major imbalance.  Just the fact that another cancer (thyroid) was found just over a year after my initial BC dx, solidified that thought process for me.   I cannot quote findings to support my decision and I do realize I am taking a risk but all I can do is follow my heart and pray for the best.  

Great thread. Thanks everyone for your comments. I reread my notes from my previous meeting w/ my MO ~8 weeks ago (before rads; when MO dis-recommended chemo). Anyway, she said that T, in general, reduces the relative risk of recurrence by 50%.  With my BC stats, she said I have 10-15% risk of recurrence (not sure how my rads fit in; will have to ask), so T would reduce it to 5-7% risk of recurrence.

lust4life, yeah CancerMath was interesting/encouraging (though I'd love to know what science they use on the backend). Later I realized they measure surivival and my MO talks in recurrence, so it's an apples-to-oranges comparision.

O2Bhealthy I'm with you, quality of life is so important. FWIW, when I was shopping for a surgeon, I met with my DH's primary care doc (diff than mine, in a diff. town and network). At the end when talking in broad terms about cancer treatment, he brought up quality of life.  I'm an engineer so I asked if it was bad to get hung up on these statistics. He said it's really all we have to go on, but then he said to consider quality of life, esp. if the diff. in outcome is small. So at least one person in the medical community agrees with you too!  

I have been studying for months about this. After my BLMX and my nodes were clear, I knew I had some time to research first before I did anything. I took a long look at my body and my health issues. I have had Endometriosis for 20 years. That is also a hormonal disease. My Adrenals have been wacky in the past. I have always had really low blood pressure too, especially when I am stressed. During my MX my blood pressure crashed. It took days in the hospital to get it back up. When I returned home, I just started asking myself why? And what is my body trying to tell me? So I started researching. Well when your Adrenals are fatigued they make Cortisol, if there is a problem with Cortisol production it steals from Progesterone. When there is a disturbance in Progesterone, Estrogen can begin to dominate. This hormone imbalance has set the ball rolling & created a recipe for disaster. I took Birth control pills for Endo treatment for 20 yrs. But never did any doctor ever test my hormone levels. So I took synthetic hormones that most likely added fuel to the fire.

So now I am starting over! Clearing my body of toxic chemicals, having a complete metabolic & hormone panel done. Testing my suppressor genes like P53 to see if they too are mutated?

And definitely NOT taking a known carcinogen like Tamoxifen to prevent a possible recurrence.

I refused tamoxifen and AI's- tried armidex and it knocked me to the ground- the SEs are just too great...i am trying my alternatives and will see next month after my latest round of bloodwork how that is working. I cannot knowingly hurt myself.

Just thought you should know that the FDA is currenlty looking at hearing loss related to tamoxifen use.

Good for you Diane! it is your body, your choice! I know that there a lot of good doctors out there but I just have to say- treating cancer is a multi billion dollar industry. 200 billion alone  in chemo last year.  Zeneca lobbied hard for Tamoxifen not to be put on the Prop 65 list. they lost but no one ever tells patients that it is a known carcinogen...research everything and make an informed decision, that's all we can do.

Tamoxifen is a drug with a long, established track record.  It has side effects, of course.  All cancer medications do.  And it should only be taken if the benefits outweigh the risks.  Most women do very well on it, and you should be careful about listening to an echo chamber of women who have not.  I took it for the full 5 years and did fine.  Most women do.

I am new to this website. I myself am considering not going on Tamoxifen. Was on Arimdex and begin having joint pain. I am also a person who has lupus, sjogrens and fibromyalgia. I stopped the arimdex and the joint pain has still not gone away it has gotten worse and no pain medication helps. I have been encouraged to try tamoxifen by my doctor. But I am very concerned that this will only increase my pain. I am frustrated by the pain and the weight gain. I am 58 years old had a masectomy and lymph glands removed and had chemo treatments no radiation. I have been exercising daily watch my intake of food and still am gaining weight. Anyone else having this problem? Also what interests me is the person who said that Tamoxfen can cause cancer.I will talk with my doctor about that. I want a quality of life not a quantity. At least that is my view.