Tamoxifen????

slh42tlhp67 · December 2011

I have been diagnosed with DCIS Stage 0 and have had a lumpectomy and am nearly finished with radiation. The area of CA was less than 1 cm and was ER+. My next decision is Tamoxifen yes or no. I have done hours of research and my decision is (right now) no to Tamoxifen. In my opinion, the side effects are overwhelming. Has anyone here made this same decision?

DiDel · December 2011

I had the same concerns and so did not want to take it at all. The list of potential side effects is terrifying.

I had a mx of the right breast so I needed to protect lefty. My cancer was 95% ER+ so Tamoxifen just made good sense.

I emailed my Oncologist a list of my concerns and questions. I am guessing he gets that a lot. He sat down with me for 45 minutes and went over a study and explained the risk of the side effects and how rare most of the SEs really are. Remember they have to list everything possible.

I have been on Tamoxifen for almost two years (I am currently 45). So far no SEs at all. Well I would like to blame it for my weight gain but my onc says (are you sitting) that is was most likely ...middle age!! yes he actually said that..I coulda punch him. Anyway aside from irregular periods I have had zero problems. It does take your body some time to get used to and even then the worse problem I had was cramps. Nothing Aleve couldnt take care of. As my onc said...if you take it and have any problems ...you can always stop. I would at least do it for two years to protect yourself. Remember the goal...not to ever have to deal with BC again!! We ER+ gals should be thrilled to have a pill we can take to keep the cancer away. I personally think you should absolutely try it...stop if you are really feeling bad but I think you will see that your fears will be put to rest. Its not as bad as the packaging makes it sound.

Hang in there and PM me if you have any specific questions. Good luck with the rest of your treatments!! And Happy New Year!!

Diane

profbee · December 2011

Yeah, why not try? I've been on it only like a month and a half, and so far I don't have any SEs either.

ej01 · December 2011

I also declined tamox. Instead I am re-vamping my diet and making lifestyle changes to promote better hormone balance....more exercise, organic dairy, no plastics in the microwave, no pesticides, etc. Of course by BS says I should follow the proven science (tamox), but I have never been a big fan of taking medication unless absolutely neccessary, And, i understand that I need to be very diligent on my follow-ups to catch any reoccurances early.

I also just started reading the book by Dr Lee "What your doctor may not tell you about breast cancer." I am not too far into the book, but it certainly makes the case that tamox may not the best way to go. (from what I have read so far, i recommend it)

I think our doctors are conditioned to recommending tamox because that is their FDA approved tool to use and most are hesitant to deviate from standard recommendations. I sure wish there was as much research $ being put toward diet, exercise, lifestyle changes that could reduce recurrance risk as there is toward drug company products.

Beesie · December 2011

The benefits from Tamoxifen are different for each of us, we each have different health problems which can increase or decrease our concerns about the side effects & risks from taking Tamoxifen, and we each view risk differently. So it's difficult to compare one woman's decision to another's. This is particularly true for those with DCIS vs. those with invasive cancer; it's really an apples and oranges discussion.

Here's why. Tamoxifen provides 3 benefits:

1) It reduces the risk of local recurrence by approx. 45%. How much actual risk reduction benefit each of us gets depends on what our recurrence risk is before factoring in Tamoxifen. For someone who has a mastectomy for DCIS and has good margins, the risk of recurrence is only 1% - 2%. A 45% reduction in risk from Tamoxifen is therefore less than a 1 percentage point reduction; at most, it reduces recurrence risk from 2% to just over a 1%. For those who have a lumpectomy, if you had a small, single focus tumor, have good surgical margins and you've had radiation, your local recurrence risk might already be as low as 3% - 5%, so here again the 45% risk reduction benefit from Tamoxifen wouldn't be very large. But if you had narrow margins and an aggressive form of DCIS, your risk of recurrence even after radiation could be as high as 20%. A 45% reduction of that level of risk is quite meaningful. So to know if Tamoxifen will provide you with a significant benefit in your risk of local recurrence, you need to know what your recurrence risk is without Tamoxifen.

2) It reduces the risk of a distant recurrence (i.e. mets). This is very significant to those who have invasive cancer - for most, it's probably the most important factor in their decision - but there is no risk of mets with DCIS so this doesn't factor into the decision at all for those who have pure DCIS.

3) It protects against the development of a new BC in either breast (a new primary breast cancer that is unrelated to your current diagnosis). As with the first point, to understand what this means for you, you need to know what your risk is to develop a new cancer in either breast. It is generally assumed that if you've been diagnosed with BC one time, your risk to get it again is higher than that of the average woman. But you need to consider the specifics of your situation (your age, your family health history/genetic history, your personal health history) to know what this risk is. One important thing to keep in mind is that this risk stretches over your entire lifetime and in fact your annual risk to develop BC increases higher as you get older. Taking Tamoxifen for the next 5 years can offer protection for at least 10 years and maybe as long as 15 years (Tamoxifen's benefit remains for years after you take it) but the benefit won't last forever. So in determining how much risk reduction benefit you would get from Tamoxifen, you need to know what your risk is to develop a new BC (your oncologist should be able to tell you this) and you need to know how much of this risk you face over the next 10 - 15 years. Tamoxifen will be able to reduce this risk by about 45%.

I had a single mastectomy, so for me the first benefit (reduction of local recurrence risk) was very small. I did have a microinvasion so I do have a small risk of mets, but here again, my risk is very small which means the risk reduction benefit I'd get from Tamoxifen would also be very small. The greatest benefit I'd get would be protection of my remaining breast from a new occurance of BC. When I was diagnosed, my oncologist estimated that I had approx. a 22% chance of developing BC again over my remaining lifetime (to age 90; I was 49 at the time I was diagnosed). I estimated that at most 8% of my 22% risk would occur over the next 15 years. A 45% risk reduction from Tamoxifen would therefore be about 3.6%. That's a lot different than the rough calculation that many people do (incl.some irresponsible/lazy oncologists), which is to say that Tamox. reduces your risk by "about 50%" and with a 22% risk, you get an 11% benefit. I am fortunate that my oncologist took the time to explain this in more detail so that I understood the actual benefit that I'd get from Tamoxifen. I made the decision to pass on Tamoxifen - which was my oncologist's recommendation as well. However, if I'd had a lumpectomy and had anything more than about an 8% risk of local recurrence, that would have been enough, when added to the benefit of protecting against a new BC, to convince me to try Tamoxifen.

I hope this helps and makes sense.

slh42tlhp67 · December 2011

Many thanks to those who took the time to reply to my question regarding Tamoxifen. I appreciate all your information. I especially appreciate Beesie's explanation of her decision. That really helps put my situation in prospective and helps me enormously. Thanks again.

dsj · January 2012

I have a small risk of recurrence but was urged by my oncologist, primary care physician, and husband to try tamoxifen. I had severe hot flashes at first, but once they calmed down, no side-effects whatsoever. It's just another of the daily pills I take

CTMOM1234 · January 2012

ME --> lumpectomy + rads and passed on tamoxifen. Doing fine and am thankful.

It'll be 2 years ago next week that I had a lumpectomy for grade 2 dcis (~ 3 cm) and I also underwent radiation treatrments from March through April of 2010. Although hormonal positive, pre-menopausal, and in my 40s, it was only after a trace of idc was detected in my final lump. pathology report that my bs had me meet with an oncologist to discuss tamoxifen (as well as if I needed chemo, which I did not). He wasn't a fan of suggesting tamox, for purw dcis, I suppose.

I like facts without the sensationalism, and the onc. rationally discussed the potential pros and cons of tamoxifen with recurrence percentages for my particulars. I recall her saying that she was nearly 50-50 on my opting to do it or not, with the biggest benefit being the potential to reduce my chances of having a new bc in the opposite breast considering I'm in my 40s (and hence have a lot of years hopefully ahead of me). I truly do not remember the actual percentages (wonderful how time helps us forget some of this awfulness) but I believe for me it was something like going from a 5-6% risk to a 2-3% risk in my lump/rad breast if I went on taxomifen for 5 years.

Many find comfort in taking tamoxifen everyday for 5 years, and that peace of mind is priceless. For me, and this is such a personal decision, I knew that every little odd thing would make me wonder if it was the tamox. I'm so content with entering menopause whenever that is naturally. That may change, but there has not been a day in these past 2 years that I felt I made the wrong decision. We all do the best we can with the information we have and with our own feelings about uncertainties.

When I get an ache, I know it's "normal" and I also don't worry about my some of the less pleasant things potentially elevated by taking tamox.

brightshadow · January 2012

Thank you Beesie -- you anticipated my question.

I was told by my surgeon yesterday that the oncologist, with whom I have a consult on 1/9, will recommend that I take Tamoxifen -- even though my DCIS is ER-/PR- -- as a preventative measure to protect my remaining breast.

This made no sense to me since the original DCIS was ER-/PR-. Now that you've explained it, I'll know what questions to ask.

Having a history of mood disorders along with atypical reaction to meds (birth control pills made me depressed) makes me inclined to feel the risk is not worth the benefit in my case.

LWA · January 2012

I'm also hoping to avoid tamoxifen, as I've struggled with depression and when I was briefly on progesterone in the past year, I felt like throwing myself off the bridge pretty much immediately. (I had a surface-vein blood clot last year, as well, another thing that might make tamoxifen not good to use.)

Fortunately, my surgeon thinks my recurrence risk after lumpectomy and intraoperative radiation will be low enough that tamoxifen won't buy me that much more, but (as advised by smart people here), I will definitely discuss with at least two MOs before making a decision.

(My mother pointed out today that there may be some financial benefit to an MO who puts a patient on tamoxifen; that could be overly cynical and I hope would not be a factor, but might be something to keep in mind.)

As has been pointed out by others, one could also just try it and see how it goes. Some people have no SEs at all. But if the MOs I talk to approve of not using it, I'm going to leave it alone.

Linda

coraleliz · January 2012

Brightshadow-I don't understand why Tamox for you being ER-. Can you get another opinion. If there is reson for you to be on it, maybe a different onc can explain it to you/answer your questions better. I hear what your saying.. I flunked birth control pills also. I also did poorly on infertility drugs. My hormones just don't like being messed with. I started Tamox 2 1/2 months ago & so far it's not as bad as birth control pills. Some depression(weepiness). I'm not the angry lunatic I was on birth control. So for now I proceed with caution, but I'm ER+. Hope you get some answers soon.

CLC · January 2012

I had umx with dcis, low grade, er+, pr+. My onc felt I should take tamoxifen. Given that my risk of recurrence is near zero, my risk of mets from my diagnosed dcis is zero and my risk of new breast cancer over a lifetime is 28%, and I am highly sensitive to all medications and have a history of depression, I didn't want to. He asked me to go home and think about it for a month and come back. I asked him to make a strong case for it, because if I left to think about it for a month, I was sure I would decide against it. He made an intensely emotional case...(he said, imagine if I'd taken the tamoxifen a year earlier when I was dx with adh and I declined it, maybe I wouldn't have gotten dcis). I left then knowing that I would not take the tamoxifen. The best argument in my case was an emotional plea.

Now, if I had invasive cancer, I wouldv'e taken that tamoxifen. Dreaded it, hated it, but taken it. Maybe if I'd had any issues in my remaining breast, like adh, I would have taken it. But not with my scenario.

Many women say that they have no side effects. And my onc said I should try it and see if there were se's. But my real worry is that some of the se's are permanent problems...like endometrial cancer. I don't want to wait and see if I get that. So...I opted out.

Obviously, this is an intensely personal decision. It has to do with the science, the woman's actual medical history, her particular cancer, and her tolerance for risk. Thankfully, we do actually get to decide for ourselves and we are not forced to pick one way or the other. I wish all of you out there the best of luck with this very difficult decision...

cycle-path · January 2012

LWA: "(My mother pointed out today that there may be some financial benefit to an MO who puts a patient on tamoxifen; that could be overly cynical and I hope would not be a factor, but might be something to keep in mind.)"

I could be wrong, but I don't believe that's possible. Or at least not at all likely. Tamox is generic only -- there's no branded version because the original manufacturer stopped making it when the patent ran out. So I don't see how any doc can get a kickback or other benefit from prescribing Tamox.

However, having had a surface vein blood clot sounds like it could be a risk factor for you.

StephanieKay · January 2012

My OncoType Score was 8 so I had the option to take Tamoxifen or not. I took 20 mg for the first few months and experienced cognitive difficulties. When I told my oncologist what was going on, he told me that in about 30% of the women who take Tamoxifen, it acts like a 'stupid' pill. He took me off for two months while I completed some certification tests for work (failed on Tam/passed when off Tam). He put me back on 10 mg after I completed the tests. I have been on 10 mg for about 1 -1/2 years. I still have moments where I just kind of check out but not like it was. I want to discontinue as I am tired of being tired. I have a very healthy lifestyle and it is very frustrating how much fatigue I am experiencing. It seems the longer I am on Tamoxifen, the worse the fatigue gets. I will be visiting my Oncologist again in March. I am hoping since I will have two full years under my belt, that he will discontinue it. Still, a pill and temporary tiredness sure is better than cancer!

bojo · January 2012

I was DX with pure DCIS in 2005. 37 RADS, was put on Tamoxifen. I took it for 6 months stopped it too many SE's. MO was okay at time to let me stop said it was my decision. Fast forward 6 years it's back in my right breast but this time a small amount of IDC. I can't help but think if i stayed on if it would have come back. I know i can't think about "what ifs" but i do. So know i am waiting on Oncotype result to see if i need chemo.

pat01 · January 2012

Steph, I was really interested in your MO saying for 30% of women it acts like a stupid pill. I've been on it for 3 months, and that's me! I noticed marked memory decrease after I started taking tammi (20 mg). My MO and BS said they have not heard of tammi causing that, only chemo. At my next MO appt., I will discuss this with him. Does anyone have any research on this I can show him? He said I can go off if I want since my recurrence risk is low already, but somehow I just feel better taking something to try to prevent a recurrence. I might ask about taking 10 mg a day and see if that helps.

Pat

eileenr56 · January 2012

I had pure dcis in May 2010 with lumpectomy and rads. I decided to try tamoxifen and if I had any problems I would stop. I am post menopausal (years ago - early menopause), and I have had no side effects. Tamoxifen is given to post menopausal women with DCIS.

The doctor told me if you took the pill with no problem you will probably not have any problem with tamoxifen. At least with the scary stuff. I think younger pre menopausal women will have not flashes.

so it's been a year. so far so good. I just had my 18 month mammogram this morning and everything is clear. thank goodness.

Natters · January 2012

I'm a younger (pre-menopausal) woman on Tamox because of a higher risk of recurrence and new primary BC + low personal risk of the more rare but dangerous side effects.

I had no hot flashes for 2.5 months, then I had hot flashes for maybe 3 weeks, and then they just mysteriously went away. My period was late for the first time in my life right at the end of rads, when I was under a lot of other stress, but has since come. I haven't missed a single period so far. I'm taking this all as a sign that my body has adjusted well to this drug.

I've never taken a pill every day before (never been on The Pill or needed any other meds) so this is all new to me, but I've already gotten into the routine of just taking it right before bed. I plan to keep taking it every day for the next 5 years to help protect me for the next 10. Sometimes when I take it, I think about how it might help me avoid another surgery and radiation in my other breast. It may be the one thing that allows me to keep my breasts in the future - who knows? For me, it's definitely worth trying.

It's an important decision that should be made based on your very personal risk of recurrence and uterine cancer, and not because you read about a 100 different side effects you could potentially get on the Internet. Even when I was suffering from hot flashes, I reminded myself that they sure beat the numerous horrible side effects from chemo that one of my friends recently experienced. And I have a more than 5x average risk of invasive cancer than other women my age if I don't take Tamox, so the risk of future BMX and chemo loom large in my mind. As many others have pointed out, you can start taking it and see how you feel and make the decision to go off it at any time.

Tamoxifen????

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