Terrified of TAMOXIFEN

AquarianGoddess26

Greetings Ladies,

I am a 30 yr old young woman who was recently diagnosed with BC. I have had a lumpectomy, and the surgery revealed clear margins and no involved lymph nodes. I had not had radiation therapy yet, but plan to start next month. I am waiting for my Oncotype dx results, but not sure if they will mean much since I am terrified of taking Tamoxifen and undergoing Chemo Therapy. I am not only worried about the side effects but the long term health conditions that may follow. I plan to live a long healthy life and my Oncologist seems to think that medication is the answer. I welcome any feedback you may have whether you have taken, or chosen not to take Tamoxifen.

Blessings 

MariannaLaFrance

I had DCIS, 2.4 mm, and had clear margins on my excision. In fact, my DCIS was completely removed via my stereotactic biopsy.   I did 6.5 weeks of radiation afterwards, and I have opted not to take Tamoxifen. I had a 5% recurrance rate based on my situation, so I decided that I would not take the risks associated with Tamoxifen to bring my recurrance rate down to 2.5%.

I don't blame you for your fear of Tamoxifen, as it's a really potent drug, but you'll have to make the decision that is right for you. I would advise talking to women about their experiences with the drug, weigh your percentages (do all the research on Tamoxifen as well, what other risks it brings along with its benefits). For me, the tradeoff of cutting my risk in half, yet increasing my risk for uterine cancer and liver cancer didn't make sense.

Hope that helps. I know it's a hard choice to make.

AquarianGoddess26

Thanks MariannaHB. This is a very difficult decision. Much harder than deciding whether or not to have my son vaccinated, go figure  I will continue to research and try and find another Oncologist. Although, I am not sure that would make much of a difference either. They all seem very aggressive with the drugs. 

louishenry

Whoa!  The chances of uterine cancer and liver cancer are extremely low. I mean really low!! I  can't remember now, but I think I was very surprised when I read the potential side effects from advil!  The vast majority of us have had no problems with tamoxifen.

I understand that we all have a choice in our treatment. I would never judge someone on what they chose to do in their treatment. But, with tamoxifen, you could always try it, and if you really don't like it after a few weeks/ months, you could just get off. It's not as if you would get uterine cancer within a week of taking tamoxifen.

I did have some se's in the first few months. It's been three years now and I feel fine. It has made me feel a little more confident that my DCIS is behind me. The hot flashes were really no big deal. I have had no problems with libido and I lost 5 pounds the first year and kept it off.

It is a good drug that has been around a long time. It generally is fine for the majority of us. If you feel nervous or worried about your cancer coming back, it may help you feel like  you have done everything that you could to prevent it.

I'm not a pill pusher, but I needed to post to assure people that the most likely se's are hot flashes, not cancer. And God forbid, if uterine cancer is foubd, it's not as if it happens over night. One would realize that the lining of the uterus would be getting thick by getting tested.

Good luck and I hope the best for you!!

Gúa

I really understand how you feel.  I just started Tamoxifen 4 days ago.  I had already undergone a surgery, chemo and radation, and was not sure if I wanted to do 5 more years of therapy.  But after weighing in my options, I decided that it would be worth trying it, I can always quit if it will be horreble.

The thing is, I really want to be able to say, I tried everything, if the cancer comes back.

Wish you all the best

regards

Gua

1Athena1

Hello, AquarianGoddess,

I decided to stop Tamoxifen, but that is not the path I would recommend for others unless they are carbon-copies of me. It does have some potentially scary side effects, but the good news is that both blood clots and uterine cancer do no develop overnight, so you can be monitored carefully and kept safe.

I say give it a try, and the worst thing that can happen is that it makes you miserable and you stop taking it and end of story. Pills are not an all or nothing proposition - there are so many gradations. If the SEs get bad, you also have the option of going slowly or titrating down to 5mgs or 10mgs  (with your onc's blessing) and up again.

I had what were ultimately unacceptable SEs for me and I had another illness to take care of that the Tamoxifen was making worse, but you would be surprised at how varied experiences are. Some women have no SEs at all. One SE that many people complained about I never got  - bone pain. 

So I say it will absolutely not hurt to at least try it. There may be some real benefit from your bc. Good luck!

PS73

Hello ladies,

I have been on tamoxifen for eight months.  Not only was I terrified of going on it but I was very much against it.

Im not here to give you any stats or tell you to do it or not to do it, I just want to give some feedback on the drug.

I started tam once I regained my menstrual cycle and I wanted to make sure it wasn't a fluke and that I would have it two times before starting something that was going to mess w/ my hormones(was 35 at dx). I figured it was a trial and error thing.  After two months I gained weight and have continued to gain weight on this lovely drug.  I think I was netting out at 3lbs per week.  Fortunately that leveled off.  I have to work out constantly to maintain about a ten lb increase post chemo and hormone therapy.  I take tam with DIM which is supposed to help your liver metabolize all of the estrogen that is being displaced.  - this is theory mind you but I buy it.  The abstracts and panel tests are somewhere on this site.  I know I was big into the discussion on it. I guess that I am happy to say that besides the weight gain, I haven't had too too many side effects.  I have always had back problems and I think the estrogen loss is affecting my bones but there are supplements for that.   

Good luck whichever way you choose to go!

changes

ALL medications have side effects, and doctors have to warn you about potentially serious side effects. However, as someone has already said, the risk of serious side effects with Tamoxifen is pretty low. You have to balance out the risk of side effects against the risk of a recurrence of cancer. I've been on it 4 months, and it's been tolerable. I wish I did not have to take it, but I do. Keep in mind that people are more likely to post when they are having a problem with something, so you may be getting a misperception of how bad it will be. Also, your oncotype score PRESUMES that you take Tamoxifen for 5 years.

Good luck with your decision - Karen

Member_of_the_Club

You really don't know how it will be.  I was on tamoxifen for the full five years and did fine.  At least give it a shot, do everything you can to maximize your chances of being around to raise your son.

DawnRenee

Goddess.

The first six months after my diagnosis, I was so terrified & overwhelmed...the information out there is confusing to say the least. Make sure you realize that some of these women replying to you had DCIS. Which is not invasive & does not spread outside of the breast.

There are also ladies who have had a mastectomy.

Their risk of recurrence/metastasis can not be compared to yours. Overall, no-one's situation can be compared to yours & unfortunately, you are the only one who will know what is right for you & what choices you can live with in the future.

With that said, Tamoxifen was not even an consideration for me. There was no way, I was going to risk my heart, my eyesight, my bones or my sex life at 44 years old. I was just not ready for menopause.

Try very hard to understand the numbers they throw at you. The percentages are given in different aspects. Some are relative numbers. For instance;

Ladies assume that if my OncoDx was 6% & by not taking Tamoxifen for 5 years increases my risk of recurrence by 30%, I would have a 36% chance. Right?

Wrong.

It is 30% of 6%.

So, by foregoing the drug, my risk goes to 7.8%.

This is what my oncologist explained to me & none of this comes with guarantees. You have to decide what is more important to you. For me, it was quality of life. The quality of time I would have with my children. I didn't want to be 44 stuck in an old lady's body.

If, the cancer comes back in 2 years, 4 years, 6 years, 10 years. I traded feeling fantastic & days filled with playing football & carving pumpkins with my kids. I want them to remember me for who I am. Not sick & miserable.

I am rambling & I apologize.

Understand what the doctors are saying and that they have to suggest the standard of care.

nowords

Go to cancermath.net and enter the known data and see what the charts and graphs show - how each treatment will increase your life expectancy. It is just meant as a guideline but it may help you decide. Ultimately, are the feared and unknown potential side effects worse than the disease it treats?

 I am 50, very anti-drug and a somewhat jaded medical consumer, but I figured the potential benefits outweighed the current known risks for my specific diagnosis. If I were 80 I would have probably done nothing.

0000000

Hi,

I am having my lumpectomy tomorrow.  Since my diagnosis in September, I have read and read and read and from what I have read Tamoxifen sounds horrible.  I will lose a few pounds and excercize religiously to reduce my estrogen level but I will not suffer the side effects of this nasty drug.  I also am refusing radiation.  Good luck to you.  I'ts a personal decision but no therapy  should be undertaken just because the doctors say so.. look at what happened to all the women who took Hormone replacement therapy.. they got a more aggressive form of cancer and now the docs are saying it's not wise to take HRT.    I am 63 and never took hormone replacement therapy or birth control or any unnecessary medications. I know my cancer developed due to lots of stress in my life in the last year and I didn't maintain my excercize regimine or eat well.. won't make that mistake in the future.. everything I do will be designed to be good for ME!  I intend to make my own decisions about my treatment and if I hear "standard of care" one more time I will throw up.  

Good luck to you!

Elsie,

IDC 1cm, snb and lumpectomy.. no node involvement, ER and PR + and HER2-

btw,. I insisted my surgeon remove the biopsy needle track along with the lumpectomy as I am not planning to have radiation.   but I certainly didn't tell the surgeon that ..hehehe  , don't want him mad at me before surgery.

Member_of_the_Club

DawnRenee, I have to gently disagree with your description of tamoxifen.  Most women do not go into menopause while taking it (particularly as young as OP)  and it actually strengthens bones and lowers cholesterol (unlike AIs).  As for eyesight, I looked into that very carefully because I have a history of some bad vision problems and the side effects on the eyes are very rare.  Tamoxifen is a powerful drug -- cancer needs a powerful -- and it does have side effects, though they vary from woman to woman.  But the ones you list are largely not issues for woman on tamoxifen.

DawnRenee

Member~

It is my understanding that estrogen is responsible for us being females. Although men have some, this is our hormone that allows us to be female.

Body builders take Tamoxifen to block all estrogen, allowing them to be more masculine.

I could sell my Rx on the street.

Each woman is different, estrogen is depleted at menopause & we develop hot flashes, bad bones, bad hearts, bad eye sight. We grow old. Estrogen also protects our hearts.

I am sure there are women who take Tamoxifen & do well. I am very susceptible to drugs, not even able to take birth control pills due to intense morning sickness.

I was just explaining my choice. If women are not experiencing the side effects I listed, I apologize. The women I talk to are suffering most of them.

Hindsfeet

DawnRenee, I agree. Estrogen makes us female! What get's me is if the cancer is removed, and for most, nuked, so why tamoxifin? There's no cancer left in the breast so why do you need tamoxifin? Someone said for any stray cells that weren't killed off. Well, our immune system is always killing off stray cancer cells. Estrogen makes you healthier. I'm post menapausal...so I need all my natural hormones for overall health.

Member_of_the_Club

I have no problem with your choice, just want to throw out some facts.  Its AIs that bodybuilders abuse, not tamoxifen.  Tamoxifen does not block estrogen, you still have estrogen when you take tamoxifen.  It works by mimicking estrogen and binding to the estrogen receptors on the cancer cells, so they think they have fuel, but they don't so they die.  Because it mimics estrogen it can have estrogenic effects -- the effects of extra estrogen -- such as raising cholesterol and strengthening bones.

Body builders take AIs because they prevent the conversion of testosterone unto estrogen, and possibly leave the person with more testosterone.  I have to say, my sex life has been amazing since I started Arimidex and my theory is that I have a little extra testosterone.  All women have some, and its what they give some women with sexual dysfunctoin issues.

I am an a AI and I am a woman.  If there's no estrogen circulating in my body, I am still a woman. 

LJ13-2

It is not estrogen that makes you a woman, it is the presence of 2 X chromosomes.

However, the presence of high levels of estrogen IS what fuels 75% of breast cancers. 

The only logical reason NOT to take Tamoxifen (sorry, I originally posted "estrogen" here) if it is recommended by your oncologist is if the side effects are unbearable.

Member_of_the_Club

Also, don't men have some estrogen as well?

kira1234

Yes men have estrogen as well. It causes prostate cancer in men.

Suzybelle

I'm like MOTC - have been on Tamox. since Feb. of this year and have done fine with it.

 I find myself a wee bit more emotional, and I tire a little more easily, but I think alot of that is just recovering from a bmx.  I'm starting to do a lot better with that now.

And I have not morphed into a bodybuilder (not that there's anything wrong with that) yet, so it's all good. 

Like Gua, I want to minimize my risk of recurrence as much as possible.  And I'm at the doctor every 3 months, so I'm getting plenty monitored.

Whatever you decide, good luck to you!

DawnRenee

Member~

Firstly, I have no desire to debate. Believe me, I understand the idea of Tamoxifen. I understand receptors & tricking little cancer cells into thinking they've got a hold of estrogen with the Tamoxifen.

Tamoxifen also blocks the receptors in places you need estrogen. Hence, side effects that mimic menopause. Or old age. If you seriously believe that no woman are suffering ill effects from this drug...well, I just don't know what to say. There are countless threads here stating such.

Bodybuilders do take Tamoxifen.

http://bodybuilding.elitefitness.com/nolvadex-bodybuilding-tamoxifen-anabolic-steroid-cycle

When men have exceptionally high estrogen levels, they become feminine, as well as woman with high test levels becoming masculine. This is how they complete a sex change after surgery. They give the appropriate hormone to get the desired effect. Look like a girl or look like a man.

The amount of estrogen in our water supply, milk, plants`such as soy~should also to be considered.

As far as your sex drive increasing? Unless you had a higher source of testosterone coming from somewhere, I can't understand the significance of the comment.Your body just doesn't make more testosterone because it's estrogen is depleted or blocked. During testosterone therapy in women, for sexual dysfunction, estrogen is given first.

http://www.mayoclinic.com/health/testosterone-therapy/AN01390

Member_of_the_Club

I absolutely recognize that some women have bad side effects and said so in my earlier post.  So your comment "if you think no women are suffering ill effects from this drug," is just wrong.  I don't think that, never did and have never said so.

 I didn't know bodybuilders also abuse tamoxifen, but I also don't know why that matters. I was on steroids during chemo, so what?  My mother took steroids when she had brain cancer and it helped her significantly.  Why should I care that bodybuilders take them as well?

 As for my sex life, my belief is that the the Arimidex is preventing some of my testosterone from being converted into estrogen, as it did before, so I have more testosterone as a result.  This is in no way based on science since I realize other women on Arimidex have the opposite effect, and because I can't draw any conclusions based on one person, even myself.  But I do know that it is happening and I'm very pleased with it. 

Anonymous

<<<<

<<<<DawnRenee writes: Ladies assume that if my OncoDx was 6% & by not taking Tamoxifen for 5 years increases my risk of recurrence by 30%, I would have a 36% chance. Right?

Wrong.

It is 30% of 6%.

So, by foregoing the drug, my risk goes to 7.8%.>>>>

---------------

DawnRenee,

I'm so impressed that you know about the commonly used relative risk statistics making the advantage of Tamoxifen look bigger than the absolute risk statistsics!

Then, take it further.  Factor that these statistics are only addressing recurrence, not overall survival and you have an even smaller number.

We used to have a member here, Fairy, who was very smart about this.

DawnRenee

Member.

I am thrilled that you have a great sex drive. Mine is there, just nothing to do with it. I suppose my protecting it was all in vain

I apologize for my statement that upset you, I took your last post wrong. I understand women defending Tamoxifen. I do. And I understand all the women who try it & quit...or those like me who never fill the Rx...we all have our reasons.

When it comes down to it, I guess we never know. Some fight this full throttle & face it again & again. Some do minimal & it's gone. There is no rhyme or reason. I hate it.

My body builder statement was used to support the idea that blocking estrogen suppresses femininity. I was never suggesting that women taking it would turn into Hulk Hogan. Just that it was logical they would experience menopausal symptoms.

I have gained knowledge, strength & friendship from this site. I believe that when someone is newly diagnosed they are entitled to both sides of the story. The pros & the cons. Our differences is what makes us so special. In the end, we would stand together despite them.

Dawn.

Member_of_the_Club

The thing is when you equate femininity with estrogen you are unintentionally insulting those of us who are left with little or no estrogen because of breast cancer.  We're still women.  And after menopause -- no matter how each of us gets there -- we will all still be women.  In fact, our natural aging state is less and less estrogen, but we don't become less and less women.  It would be like saying a woman who has had a BMX is less feminine because she doesn't have breasts.  This disease takes a lot from many of us, but it doesn't take away our essential nature as women,

3monstmama

It is all a personal decision.  That said,  I am taking tamoxifen.  I started in August.  I haven't had any real side effects other than hot flashes. 

My oncologist was of the perspective that most of her patients don't have problems on tamoxifen so why not try it and see what happens.  I was of the perspective that I didn't want a reoccurance of stupidbreastcancer.  With that philosophy, I survived rads--which really scared me- and am surving tamoxifen.

In my life, I have known two women who died from breast cancer.  Both declined conventional treatment including things like rads and chemo and tamoxifen.   Having watched what their families went through, I couldn't risk anything that might put my family through what I know their families experienced.

I did my 6 month smashjob on the zapped boobie in September.  I also did the annual on the unzapped boobie.  Lucky me, I ended up with a stereotactic biopsy and a surgical biopsy on the "good" boobie.  GRRRRRRRRRR.  it has ended well enough [b9] but it did confirm there are precancerous cells in the "good" boobie and for me, it is nice to know the tamox is there helping to keep them at that stage.

As for what makes me a girl, its the double X not the stupid hormones. 

DawnRenee

Member, you are applying issues that I used to make my personal decisions to others. I in no way would challenge your choices. I can not explain my decisions without discussing my personal beliefs as far as estrogen is concerned.

Those of us who went without Tamoxifen are left to face post after post of the benefits of the drug. How is it any different for those who take it to be faced with posts about the side effects? We all have to deal with the pros & cons. I can not be held responsible for the fact that depleted estrogen causes menopause.

Again, I personally felt that I needed my estrogen. That blocking it would cause menopausal symptoms I was not willing to experience at 44. I was going through a divorce & dealing with all of this at the same time. Mastectomy, recon, drugs.

It was emotional & I was afraid I would feel sick & old. I was afraid I would be alone for what ever time I had left.

If for one second it appeared as though I was insinuating that you or any other ladies here are not women...than my communication skills are minimal. I am told continually that my choices were stupid, greedy, superficial. Well, maybe...but, I have to deal with the consequences. I had a customer tell me yesterday that I was retarded for not removing both breasts. "They are useless bags of fat, you don't need them".

Point? I defend my choices everyday. I stand by them, as you do yours.

I will now bow out of this thread, apparently nothing I have to say will be approved or seen as anything but an attack. I was just answering the question & explaining why I made said choice.

Have a good day.

Member_of_the_Club

Just for the record I don't argue with your decision not to take tamoxifen.  I haven't in my posts here, and i certainly would never call you any of those names, nor would I defend anyone who did.  I did have a strong visceral reaction to the way you said diminished estrogen means diminished femininity, that was all.

D4Hope

I was 47 when diagnosed and was already going through menapause. I feel taking tamoxifen increases the chance that I will be here for my children.  I have been on Tamoxifen for over a year and I still look and feel the same as I did before I started taking it. People still tell me I look ten years younger than I am. Of course everyone reacts differently to this drug so to each his own.

KEW

I've been on Tamoxifen for nearly two years.  I had an Oncotype score  of 15, so I didn't do chemo, especially since it was explained to me that the probable success of chemo (in highly er+ women) is that is puts women into chemopause.  Highly estrogen positive cells generally grow slowly, so they get missed by chemo, so to speak, since chemo attacks fast growing cells. It is the duration of being on Tamoxifen, or an AI that helps prevent recurrence or mets.  I also chose to have my ovaries out. I plan on being on Tamoxifen for 5 years and then 5 years on an AI, duration.  I am tired, but I work full time, in grad school and spend 16 hours a week in an internship, I'm also a single mother.  I cannot say if lack of estrogen has caused me to be more tired or my schedule.  It has not prevented me anything. I had night sweats and hot flashes for about a year, but every woman I know who has gone through menopause has had them as well.  My bones are great and so is my cholesterol--Tam protects these. I was worried about my eyes and contacted a researcher who focuses on Tamoxifen and eyes and he felt that the benefits outweigh the potential SE, but there can be some.  I'm 50 and people often think I'm in my early to middle 30's.  My skin is a little drier but I can take care of that.  I lost weight, and I've gained some of it back, but honestly, it is because I have been eating more and working out less, I can't blame the drug.  I just completed the Portland 1/2 Marathon. I was 48 when I was dx'd, and not even peri-menopausal, I was terrified of taking Tamoxifen.  I was worried I wouldn't feel like a woman, but I've found femminity and sexuality come from the mind as much as hormones. I had my ovaries out becuase I wanted the estrogen gone--it was not my friend.  Everyone has to make their own choice, but I've always stepped into the Tamoxifen discussion because I don't think it is OK to scare people.  Everyone will have a different response to any drug, you don't know until you try.  I encourage everyone to do their own research in peer reviewed journals, not at a .com address, and listen to the women on the board, but make your own decision.

Hi Member, I've not posted much lately, but it is good to see you.

Good health and happiness to all.

KEW 

changes

Hi,

Just wanted to point out that none of us knows what our side effects will be until we try it. I've actually LOST weight on Tamoxifen. I have been trying to eat healthier which I'm sure is part of it, but Tamoxifen seems to have zapped my appetite. As side effects go, that's one I can live with!