Do you take Tamoxifen? Why/why not?

mom3band1g

My onc said it wasn't nec for me to take Tamoxifen and that I'd hate her if I took it!  I don't think I would have even if she wanted me to.  I had a double mast and did rads.  I did all I could.  If i had had a single she would have advised I take it to protect the native breast.  I was 39 at diagnosis....too young for menopause...it's bad enough without breasts.  Good luck.

DeeLJ

Im having a bmx with recon because it was that or rads with tamox. and the tamox side effects are not cool. Plus I would have to give up my mirena IUD which is the ONLY thing keeping my woman parts in line...and the risk of the increased bleeding and uterine cancer for me..when I already HAVE that risk..is not worth it. And also, I'd have to stop my zoloft as SSRI's block the effects of tamoxifen.

No tamox for me. Just surgery.

susana4565

Hello. I'm 45y/o and was diagnosed with estrogen+ DCIS, Grade 3 back in December after a lumpectomy. I decided to have the 6 1/2 week of radiation therapy and am now trying to make the decison on whether on not to take Tamoxifen. I've read that if you are premenopausal (which I am), uterine cancer is not a risk. That's a good thing, however, there's many other things to worry about. One is the possibility of developing cataracts or retinal damage as I only have one eye (the other is a prosthetic) and that for me is obviously a huge risk. Another thing I worry about are the risk of blood clots and stroke. I have poor blood circulation which I will increase very soon through exercise (am joining a gym in August and just walking til then) but my mother's side of the family also has a history of heart disease and my father's family has a history of strokes. In regards to the uterine cancer (incase I hit menopause within the 5yrs of taking the medication) I briefly thought of asking for a hysterectomy because I do not plan on having children and that would deplete the risk of uterine cancer. But all these other side effects make me wonder if taking Tamoxifen is really worth the risk. I read some places that it cuts the risk in half but that if you look at the numbers, it's all in the way they word things and percentage-wise it really only comes out to 2%-3% in reducing the risk of DCIS returning in the same or different breast (invasive or not). I will try to find out where I read this. In the meantime, anybody have thoughts on this?

AnneWisc

I've been kind of agonizing over this subject, myself.  I had lumpectomy + rads for a small area of DCIS (4 mm).  It was strongly ER+ and mildly PR+.  Got wide clean margins.  

I told the med onc I had strong fears of clots/stroke on account of I have low fitness level and am unable to exercise as much as I would like.  I have an incomplete spinal cord injury and can only walk with a walker, and have been having a hard time with exercise motivation and fatigue.  Med onc agreed that did put me at greater risk, and did not push the matter.

Now that I (just recently) finished rads, the deferred decision about tamoxifen is bothering me again.  I hate having to apply "the odds" of recurrence in my particular category, making a crap shoot or a horse race out of MY LIFE!  I guess it's the unlovely legacy of being - for the time being - a cancer survivor. 

cycle-path

I go back and forth on this. Here's one thought I often have, though. It's kinda hard to explain, but let me see if I can make it clear.

I don't want to minimize BC, but I think we sometimes overreact to it, especially DCIS. Like some other cancers, BC itself will not kill you, what kills you is metasticization to a more important organ.

Part of what Tamoxifen does is decrease the risk of the same cancer coming back in the same breast. I had pure DCIS, no invasion, and I'm not particularly worried about getting DCIS again. That's not to say I'm not going to be careful and vigilant about mammos and such, just that DCIS itself doesn't scare me.

It's also supposed to reduce the risk of a new cancer in the other breast, but at this point I think we're starting to talk about very small percentage risk reductions. And of course taking Tamoxifen increases risks of other things that are not too nice. So anyhow, I think I'm probably not going to take it.  

Although I'm not a big "natural health" person, I did find this article interesting. http://www.all-natural.com/tamox.html.

cycle-path

I was just reading something that Peppopat directed me to. It's in the NCCN guidelines for BC treatment. 

"Since a survival advantage [with Tamoxifen] has not been demonstrated, individual consideration of risks and benefits is important."

jjnscat52

I feel like my breast clinic is trying to push tamoxifen on me. I had DCIS , grade 3 lumpectomy and radiation. I don't want to take tamoxifen because of the risk of endometrial cancer. I have hormone negative status so they would be giving me tamoxifen for risk reduction

JamieB86

jjnscat52 - are you sure you are estrogen receptor negative? If so, tamoxifen would be of no benefit to you since it blocks the uptake of estrogen.

ETA - I am taking it with no side effects, also I stil get my monthy cycle so from what I've read, this lessens the change of endometrial cancer.

Pompeed

I tried it.  Couldn't function.

Threw the rest down the john. 

Makes no sense to me to be pretty much bed ridden and sacrifice the next five years of life in the hope that I will not have a recurrence later in life (I would not know one way or the other whether it was of any benefit or not) and live longer.  Poop on that.

Two oncologists, breast surgeon and internist are all upset.

Ah, well, moving on.

CTMOM1234

I do not take tamoxifen and it has been just over 3 years since diagnosis. All's well, thankfully, and I'm still pre-menopausal. It just came down to looking at my statistics --  "Tamoxifen has been shown to offer a 50 percent reduction in recurrence," but in my case that meant I went from a 4-5% rate to 2-3% rate (I also do not subscribe to taking a chemo-like drug for the potential benefit of reducing a new bc).

I sleep fine at night with my 95-96% chance of no recurrence and a ZERO percent chance of having any of the short-term or long-term potential side effects from taking 1800+ pills (365 days/yr times 5 yrs). If my recurrence percentages were higher, I might feel differently, and I am thankful that mine bc was caught early. 

Merlcat

I had a mastectomy of my right breast on 10/29/12 for dcis. 0/4 lymph nodes were involved and none of my breast tissue showed ANY micro invasion. My surgeon said, "see you next year for follow up" but suggested that I go to see to 'establish a relationship' with the medical oncologist ( adjudivant therapy). Although my dcis was both estrogen and progesterone positive, being a stroke survivor already ( had a massive stroke in my late 20s as a result of a car accident head trauma) I am WAY less than thrilled to even consider tamoxifin. BLECK!

1Athena1

Edited. Wrong forum - sorry.

Jaegergirl

No, I do not. After my BMX, no lymph node involvement, and testing negative for BRACA1, my oncologist felt the risks of taking Tamoxifen outweighed the benefits. I did some research and I'm ok with that decision. I may, at some point, get a second opinion, but for now, I ok with not.

Anna1968

I have been on Tamoxifen for 6 months with very few side effects... The worst was in the beginning and I have been getting a shot once a month for Zoladex.... To suppress my ovaries. Am thinking my slight weight gain is from that. Anyone have a problem from Zoladex? Am new to all of this.