decline taking tamoxifen despite onc's recommendation?

SecretAgentL · February 2009

Hello, Ladies--

It's been a while since I've been here, but I have a situation I'd love some advice on or to hear your personal experiences with.

I'm 31 and was diagnosed three years ago with an atypical papilloma (pre-malignant tumor) in my left breast. A few months after that, I had my first mammo which showed suspicious calcifications (a stereotactic biopsy showed that they were benign). Now I'm considered High Risk and see an oncologist every year and have already had 5 or 6 mammograms. I live in Pittsburgh, which has outstanding medical facilities, including the Hillman Cancer Center where I go for my appointments. I love my oncologist and feel I'm getting excellent care.

At my annual appointment yesterday, my oncologist told me he'd like me to go on Tamoxifen when I turn 35. I've read a bit about the drug ever since it was first mentioned to me three years ago, and truth-be-told, I'm not too thrilled about it. The side effects sound awful, and I am certainly not interested in the real possibility of going through early menopause. The kicker came when my oncologist said to me and my boyfriend (of 4 years) yesterday that if we want to have children, we need to consider doing that right away, because once you get on Tamoxifen, you shouldn't get pregnant because the risks are too great.

So, my dilemma: my gut is telling me NO TAMOXIFEN, let the chips fall where they may, because I'm already being watched like a hawk and if cancer shows up, I'd have a pretty good chance of beating it thanks to early detection. I don't want to risk having a stroke, having pre-mature menopause, getting cataracts or glaucoma, developing uterine cancer, etc. I realize the odds are slim, but I'm already an anomaly according to the doctors and nurses who've seen me because my situation is fairly rare (most women get atypical ductal hyperplasia if they get some for of "atypia"--mine as a lesion is fairly rare) and because I was so young when they found it. So I don't feel like being in that category again if I can help it. BUT, my oncologist, as well as my breast surgeon, has suggested that I go on it because I'm so high risk. They've already done the Gail Test on me, even though I'm not yet 35, because I've already been through two biopsies with one resulting in atypia. I scored fairly high, meaning I'm--you guessed it--high risk.

Has anyone here decided against Tamoxifen, despite her oncologist's strong suggestion of taking the drug?

I'm 31 and don't want to be dealing with this right now. And I certainly don't want to feel rushed into getting married and having children.

many thanks for your help,

Laura

roseg · February 2009

You shouldn't get pregneant while on tamoxifen, but it does not bring on early menopause. It might make your periods irregular but the hormone stuff keeps going. The drug just protects your breast cells from the effects of estrogen.

Not to sound like your mother, but if you want children you should be making plans to have them -- even absent a breast cancer risk. Fertility past 35 declines greatly. Just because most women don't go into menopause until they're 50 doesn't mean that they can easily concieve until then.

You're always free to not take your Oncologist's recommendations. He/She is just reading you the party line.

Anonymous · February 2009

Laura--I just finished 5 years of tamoxifen. While it does tend to mimic some of the symptoms of menopause (hot flashes, irregular periods), it does NOT put you into premature menopause. It does have some serious SEs (endometrial cancer and blood clots), but those are very rare, reportedly less than 1% (same for cataracts; tamox does NOT cause glaucoma). I was 46 when diagnosed with LCIS ( a non-invasive bc, stage 0) and already had my children, so my decision was much easier. I think if I were only 31 and wanted children, I would have a long discussion with my doctor about pregnancy, risks and benefits of preventative medication, ongoing screening methods, etc... before making any hard and fast decisions.

Anne

taraleec · February 2009

stagegirl22, I'm 39 (I know it's a late age to be considering another child, but I am) I had LCIS, complex sclerosing lesion(radial scar), intraductal hyperplasia & sclerosing adenosis when a lump was removed from my Lt breast (which had been there for 2 years already, I had severe cervical dysplasia and had surgeries for that and had let that lump go). My ONC strongly recommended tamox and radiation, since LCIS is usually multifocal and in both breasts. I went ahead with the radiation (my Grandmother had uterine cancer, my other Grandmother passed at an early age so we don't know about her) but because of SE's and because I want another child, I declined the Tamox. My GYN said the Tamox. WILL put me into menopause early. And since then, I've had a lumpectomy for a Rt lump and now there are 3 more lumps in Rt, MRI needs redone and my ONC recommends mastectomy. So yes, I still decline the Tamox. It has to be your decision, just wanted to let you know I've had some of the same thoughts as you. Good luck.

PSK07 · February 2009

Rose is correct - Tamoxifen does not put you into menopause. In fact, my onc was very, very clear about it - while I am taking tamoxifen I either use two kinds of non-hormonal BC (condoms+spermicide), get sterilized, or husband has the big V. You will continue to ovulate and if you become pregnant, the tamoxifen can seriously damage the fetus. That said, you can stop taking tamoxifen at any time and if you took it for 2 years, went off it long enough for it to clear your system, got preg, had baby...well, it happens.

There are side effects and there are risks. If I had issues with blood clots I wouldn't take it. It's really a matter of looking at your own risks and what tamoxifen can do for you. The younger you are, the less likely you are to get some of the most serious SEs (cancers, clots, strokes) associated with the drug.

Things change. Your onc wants you to consider taking it in 4 years. A lot can happen in 4 years. You may have a different onc who doesn't prescribe tamoxifen (the first onc I saw didn't.) You may have more things show up or not. You may or may not even have the same partner.

Taking charge of fertility while in your early 30's is probably a good idea, though. And I'd be asking the onc if s/he was offering to set up the college fund or else keep quiet.

You certainly have a lot to think about, and a lot of it is uncomfortable. Since I am the master procrastinator I would put the tamoxifen decision out of my mind for another couple of years, live as fully as I can now, keep up the monitoring, and think long and hard about children and timing.

I hope it gets easier.

decline taking tamoxifen despite onc's recommendation?

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