Taking Tamoxifen

Hi Brenda,

I'm right there with you. I have 4 rad treatments to go-woohoo!-  and am scheduled to begin the tamoxifen July 12th.(Onc is giving me a two week break so I can enjoy a previously planned vacation )  I dont want to take it either. Afraid to start then quit if it doesnt agree with me, afraid to not take it, afraid , afraid , afraid. Just wanted you to know someone else feels like you. Take care. Nancy

brenda-----I had everything out (TAH/BSO) and still had to take tamoxifen as estrogen is still produced by the adrenal glands,skin and fat.

anne

Hello Brenda1919, 

Same as rgiuff. I don't understand why you would choose to have your ovaries removed over taking tamoxifen. As rgiuff said, it is a lot more drastic than tamoxifen, and in my book, a lot scarier! Can you explain why you think it is a better option for you?

I've been on tamoxifen for 6 months and the side effects come and go, and have subsided. Only a couple of hot flashes a day and some muscles/joint pain. I can function normally and live the same life as before.

A lot of women who do not like taking tamoxifen post on this website, but there are also a lot of us who are fine with taking Tamoxifen, we just don't post as much.  Remember that a lot of women just do fine on it.

Maybe you should try it before removing your ovaries ?

Brenda----as I said, I've done both (taken tamox for 5 years AND had ovaries out) and if I had had a choice in the matter, (didn't--they ruptured)---I would've chosen to keep my ovaries. My SEs from tamox were very minimal, hardly noticeable; that all changed after my surgery that put me into immediate surgical menopause. the first year was very rough, and I still have hot flashes, trouble sleeping, achy stiffness, and it has been more than 5 years.

Anne

I've been on tamoxifen for about 4 or 5 months now.  I really don't like it at all.  My legs swell and are painful and I've gained an awful lot of weight.  It's so uncomfortable.  I don't mind the hot flushes as having already gone through menopause, I was used to that.  No big deal...but the leg pain and weight gain is really bothersome for me.  I'm taking a water pill as well...but still the swelling and tightness.

I am going to see the oncologist next month and will discuss coming off of tamoxifen.  If he recommends I stay on it...I will.  But not with joy in my heart.

I've still got some swelling around my nipple area and have developed a very small grainy feeling rash just below my breast.  I'll discuss with the Dr as well...but it all just sucks sometimes don't you think?? 

Rachel, I'd have to disagree with you that the side effects of tamoxifen are much worse than removing ovaries. I'm on tamoxifen for over a year and a half now, and the hot flashes and libido problems are real, as well as some other minor ailments that come and go, but I know that I could stop taking this drug at any time and that most of these problems would probably resolve. Removing ovaries would scare me much more, because whatever side effects come with that procedure can't be reversed, and a lot of the side effects would probably be worse than what I have with the tamoxifen. Just imagine the side effects of a male having his testicles removed, it's pretty equivalent to that.

As far as severe side effects, the strokes, blood clots, and uterine problems are extremely rare side effects that happen to a tiny percentage of women on tamoxifen.

With ovary removal, recent studies are showing that life is shortened due to the loss of beneficial effects that they provide for us, even after menopause.

I think you are foolish to have a hysterectomy.  There is no reason to be fearful of the Tamox. Those severe side affects happen very rarely. You need your ovaries. You will be closely monitored with blood tests every six months or so.  I just had my bloodwork done and my doctors are thrilled with my health.  Everything is normal and I feel wonderful.   My side affects are minimal, but the good side of the Tamox is that my bone density increased and unlike others on this forum, I sleep much better. So I get a few leg cramps and some night sweats, big deal.  Its better than a hysterectomy.  I have never felt better and am certain I made the right decision for me.  When I thought of removing my ovaries and discussed it with all my doctors, they were all against it.  Think about it.  You can try the Tamox and can always go off it, but once you remove your ovaries, they are gone. Your skin, hair will suffer among other things.

Brenda,

Just wanted to drop in and add to the reassurance that Tamoxifen is "doable".  The first few months were hard, but now after a year if I wasn't taking a pill every morning I'd forget I was taking it.  The weight gain for me leveled off after 8 or 9 months. The mood swings leveled off after a few months.  Turns out I was hypothyroid so who knows how much I can really blame it on tamox. What was mentioned above is true, those of us who have no problems on it don't post.  I have a couple of exercise threads and my old chemo buddies I drop in on, but, otherwise am not checking on other threads very often.  When going through chemo everyone seems to chime in, but, after chemo and rads, a lot of people start drifting off unless they're having problems like LE, trouble on hormonal therapy etc. I was scared to start it too after reading about the problems some were having.  Obviously your Onc is a better judge of how much benefit you'll get from it with such a low oncotype score (congratulations on that), I won't try to tell you risk/benefit of tamox or oophorectomy.  Just wanted to reassure you that for many of us the Tamox is well tolerated if you stick with it.  

Good luck 

One of you pro-tamox people made the comment that I was deceiving myself and wantonly wasting pills.  I am not deceiving myself. Not only am I quite satisfied as I flush my pills, I am also fully aware that I am flushing my pills and thus not ingesting them.  And if you really know someone who wants to take tamoxifen but can't afford it I will gladly give them my pills for the next five years. The reason I don't tell my doctor is so he won't nag me and the reason I don't tell my family is so they don't worry. With regards to the ovary removal vs. tamoxifen:  I am not saying to anyone that they should remove their ovaries as an alternative to taking tamoxifen but if doing that makes someone feel better or safer because they refuse tamoxifen then let them.  The most significant side effects of ovary removal are the menopausal symptoms which all women will go through at some time anyway.  Not so with tamoxifen because once you have opened your door to this unwanted guest you have also opened your door to the parasites it brings along.  I came across this study which I have included in this post to support my belief that the side effects of tamoxifen are real and do happen.  As you will see here: yes, the incidence of invasive breast cancer was reduced but still there were quite a few cases involving women who were taking tamoxifen. I know that not all women experience side effects from tamoxifen; however, considering the severity of the side effects and the fairly high percentage of women who do (at least according to this study) experience them, I think the negative aspects of tamoxifen supplant the positive.      The Breast Cancer Prevention Trial (BCPT, NSABP P-1) was a double-blind, randomized, placebo-controlled trial with a primary objective to determine whether 5 years of Tamoxifen therapy (20 mg/day) would reduce the incidence of invasive breast cancer in women at high risk for the disease.  Secondary objectives included an evaluation of the incidence of the known side effects. In this trial, 13,388 women of at least 35 years of age were randomized to receive either Tamoxifen or placebo for five years. The median duration of treatment was 3.5 years.
incidence of invasive breast cancer was reduced by 44% among women assigned to Tamoxifen (86 cases-Tamoxifen 156 cases-placebo;)
A non-significant decrease in the incidence of ductal carcinoma in situ (DCIS) was seen (23 Tamoxifen, 35 placebo).
 No overall difference in mortality (53 deaths in Tamoxifen group vs. 65 deaths in placebo group) was present. No difference in breast cancer-related mortality was observed (4 deaths in Tamoxifen group vs. 5 deaths in placebo group).
 The risks of Tamoxifen therapy include endometrial cancer, stroke, cataract formation, and cataract surgery. In the NSABP P-1 trial, 33 cases of endometrial cancer were observed in the Tamoxifen group vs.14 in the placebo group. Deep-vein thrombosis was observed in 30 women receiving Tamoxifen vs. 19 in women receiving placebo. Eighteen cases of pulmonary embolism were observed in the Tamoxifen group vs. 6 in the placebo group.  There were 34 strokes on the Tamoxifen arm and 24 on the placebo arm. Cataract formation in women without cataracts at baseline was observed in 540 women taking Tamoxifen vs. 483 women receiving placebo. Cataract surgery (with or without cataracts at baseline) was performed in 201 women taking Tamoxifen vs. 129 women receiving placebo.  The number of myocardial infarctions, severe angina, or acute ischemic cardiac events between the two groups was insignificant (61 Tamoxifen, 59 placebo)
Tamoxifen was also associated with significant bone loss of the lumbar spine and hip in premenopausal women.

Yeah, ok, well....I won't put them in the toilet anymore.  I guess I'll just put them in a bag and go out and look for one of those trash bins that have that "hazardous waste material" logo on it and I'll put them in there.

ok already, I said I was not going to put them in the toilet anymore.  It's not like I flushed all 5 years worth of pills at one time; it was only 3 months of pills, one day at a time.  And from this day forward I will dispose of them in a far more conscientious manner.

Rachel, there is nothing conscientious about what you are doing.  First of all, you say you don't want five years of side effects but if you are truly stage IV, as you said in the stage IV section, you won't live five years without the tamoxifen.  I have trouble believing you really are stage IV.  If you were, you would be far more scared of your metastatic cancer than of the side effects of tamoxifen (which for many of us aren't bad at all).

Second, you are lying to your doctors.  So when you have progression, they will think that the tamoxifen has failed and will prescribe something stronger, like chemo.  Try flushing that down the toilet.  Not to mention that you are causing your doctors and nurses -- who, if typical of oncology, are caring, hard workers -- to treat a lie.  Nice.

And you are lying to your family.  Way to treat people who love you. 

Brenda,

 Not sure of your age and if that even makes a difference, but I am 40 and have been on tamox for 1.5 years now. I have no side effects at all. My period is a little weird, but I am 40 and at perimenopause age anyway. I haven't gained any weight, no hot flashes, not a one. Not saying you would be so lucky, but you never know. If I were you I would try tamox first. If the side effects are so terrible you can always stop taking it. Once the ovaries are out there is no getting them back. There is also the option of shutting down your ovaries and then taking an AI instead. Talk to your doctor about your concerns and have them go over all the options for you. And remember it is your body and ultimately your decision to do what you feel is best. But don't let a fear of potential side effects make you rule things out before you have all the info.

"A little inaccuracy saves a world of explanation" C.E. Ayers
 In some situations a "lie" may be required in order to bear with a difficult ordeal.  I am not a sociopath so I do feel bad about deceiving people but sometimes telling people what they want to hear is easier than telling them the truth.  Me not wanting to take tamoxifen and the horror and indignation felt by my family for not "doing whatever it takes" was an issue that was constantly argued about and cried over.  My own doctor is a very close family friend which is why I won't tell him what I am doing with my pills.  They don't understand and I am tired of trying to get them to understand. The cancer treatments are having a greater toll on my body than the cancer itself.  I've already been cut up, mutilated and put back together so that now I am just disfigured.  The chemotherapy made me want to crawl under a rock and stay there.  I felt horrible and looked just as I felt.  Oh, but that's not all...I also have to, everyday, swallow a pill so toxic that: In May 1995, the state's Carcinogen Identification Committee voted unanimously to add tamoxifen to its list.  And in 1996 the World Health Organization formally designated tamoxifen a human carcinogen.  Forget it, I am over it. I'm taking the total holistic road, vitamins, etc...and it is my body, my life and my choice.  Seriously, and I speak only for myself, the quality of my life which includes how I look and how I feel each day is more important to me than the length of my life.  It is also important to me that my family not worry and that we don't have this huge tension among us(big family-lots of tension). My decision to now refuse conventional treatment has been a huge problem with us especially since more than a few members of my family are doctors themselves.  Telling them that I am not taking the pills serves absolutely no purpose other than to upset them and I don't want to do that, they've already gone through enough pain with me.  So, my solution to this problem is to bend the truth.                                                              "A little inaccuracy saves a world of explanation"