Anyone take Tamoxofin after BMX for DCIS?

longislandmom · October 2012

Hi. I have a question that's been on my mind lately. I was dx with DCIS, grade 3, ER+ in March. BMX in April. BS said no Tamoxofin necessary because of the BMX. But lately i've heard women in similar situations whose Docs have told them otherwise. Am interested to hear others' experiences and recommendations.

Beesie · October 2012

longislandmom,

The BS is absolutely correct. However since post-surgery treatment isn't a BS's area of expertise, you might want to also get an opinion from a medical oncologist. But I'd be shocked if an MO suggested that you take Tamoxifen after a BMX for DCIS.

Tamoxifen usually is not recommended after a bilateral mastectomy for DCIS (or any other pre-invasive condition or pre-cancerous condition). This is because the risk of a recurrence or new BC after a bilateral MX for DCIS usually is only about 1% - 2% (assuming adequate surgical margins). Tamoxifen can cut this risk by about 45%, but with such a low risk to begin with, the benefit from Tamoxifen is at most 1% (a 50% reduction of a 2% risk). Overall Tamoxifen is a very safe drug but like all drugs it comes with the risk of side effects. Most of the side effects from Tamoxifen affect quality of life and do not present serious health risks however there are a number of small but very serious possible health-related side effects. Depending on one's age and overall health, the risk of serious side effects from Tamoxifen can range from about 1% to about 3%.

What this means is that the risk of serious side effects from Tamoxifen, even though very low, can range fom 1% - 3%, whereas the benefit from Tamoxifen in terms of the reduction in BC risk will only be about 1% for someone who's had a BMX for DCIS. So by taking Tamoxifen you might actually be putting yourself at a greater overall health risk. This is why standard of care guidelines do not recommend Tamoxifen for those who've had a BMX for DCIS.

Obviously for those who've had a lumpectomy and have a greater recurrence and/or new BC risk, or for those who have invasive cancer and have a risk of mets, the benefit from Tamoxifen in terms of risk reduction can be quite different. For example, if someone who's had a lumpectomy has a recurrence risk of 10%, Tamox. can cut this risk to 5.5%. This benefit from Tamoxifen is greater than the 1% - 3% risk of serious side effects from taking Tamoxifen. This is why Tamoxifen is usually recommended to women who've had a lumpectomy for DCIS. Similarly, the fact that Tamoxifen can reduce the risk of mets is extremely significant to women who have invasive cancer, and that's why Tamox. is usually recommended to women who have invasive cancer, even if they've had a BMX (the risk of mets isn't affected or reduced by a BMX). The benefit vs. risk equation for Tamox. is completely different in these situations than it is for someone who's had a BMX for DCIS. For someone who's had a BMX for DCIS, the benefit of Tamox. is at best equal to the risk and might actually be outweighed by the risk.

Hope that makes sense.

cat24 · October 2012

I had a single mastectomy in January and need to have the other side done because of DCIS. I have been taking Tamoxifen and my BS said he wanted me to continue to do so.

Beesie · October 2012

cat, talk to a medical oncologist. Whether or not you should be taking Tamoxifen is not within a surgeon's area of expertise.

There are very few black and white decisions in breast cancer, but not needing Tamoxifen after a BMX for DCIS is one of the few. Because the benefit from Tamoxifen is so low, and because Tamoxifen comes with risks and side effects, your overall health is at greater risk by taking Tamoxifen than by not taking it.

longislandmom · October 2012

Thanks for the very helpful info, Beesie!

BLinthedesert · October 2012

There has been a lot of discussion about this at the recent ASCO (American Society of Clinical Oncology) meetings - there are (very few) physicians that are prescribing tamoxifen in younger DCIS patients even after BMX, many more are prescribing tamoxifen after unilateral MX (to protect against malignancy in remaining breast). Tamoxifen as a chemoprevention - who needs it? is still one of the most widely debated topics for risk reduction after early stage and noninvasive breast cancer, and other high risk women.

Beesie · October 2012

Anyone who's had BC one time is at higher risk to be diagnosed again, so it certainly makes sense to discuss Tamoxifen with someone who's had a single MX for DCIS. My oncologist recommended against Tamoxifen for me but we discussed it in length and then I went away to think about it - he would have prescribed it to me if I wanted it. After doing my own research, I decided that I agreed with him and I passed on taking Tamoxifen. But from a benefit vs. risk standpoint, certainly for many women it makes sense to take Tamox as a preventative to protect the remaining breast after a single mastectomy for DCIS.

For those who have a bilateral mastectomy for DCIS (with no invasive cancer present), unless they had narrow margins which significantly increase recurrence risk, I just don't see how Tamoxifen can be justified from an overall health perspective. I suppose with younger women some doctors may feel that their risks from Tamoxifen are very low, because they are young and healthy and therefore are less likely to have a stroke or develop blood clots or endometrial cancer or cataracts/vision problems, etc..... those are the more serious side effects from Tamoxifen. And someone who is young would have a higher risk of recurrence or a new cancer, even after a BMX. But with so little breast tissue left after a BMX, "higher risk" means 2% rather than 1%. So if Tamoxifen can cut the 2% risk to 1%, and only presents a 0.5% risk of serious side effects (rather than the 1% - 3% risk it might present to someone older), then the benefit vs. risk equation does work out in favor of Tamoxifen.

But that's when you have to factor in the less serious side effects of Tamoxifen, those that are annoyances rather than serious illnesses. About half of the women who take Tamoxifen endure some of these 'lifestyle' type side effects, including hot flashes, vaginal dryness, low libido, mood swings, and nausea....

The idea that a doctor would prescribe Tamoxifen in order to give someone a 1% reduction in breast cancer risk is inconceivable to me. That's not a statement against Tamoxifen - I think it's an important drug that benefits many women - but if your risk is only 2% to begin with, why in the world would you take a systemic drug that affects and changes your entire body? Breast cancer is scary and we all want to avoid a recurrence or new diagnosis, but we also have to consider our overall health and the impact to our bodies from the drugs that we take.

There certainly is a big debate as to whether women who have not had BC but are high risk should take Tamoxifen. "High risk" can be defined many different ways but generally it means women who have a risk level of over 0.5% per year or a lifetime risk that's greater than about 25%. If there is a debate over the benefits of Tamoxifen for these high risk women, how can Tamoxifen be considered for someone who's had a BXM for DCIS and who has a lifetime risk of 1% - 2%?

tiahill · October 2012

I was prescribed Taxocifen. I'm 33 and had DCIS with microinvasion and VERY little IDC. So little that the biopsy took it all. I had BMX one month ago. My case is a little different, and I believe Tamoxifen is warranted for me.

Beesie · October 2012

tiahill, yes, being Stage I (or higher) is different and it changes the risk/benefit equation for Tamoxifen. With any amount of IDC, the additional benefit of Tamoxifen reducing the risk of a distant recurrence (i.e. mets) kicks in. For most women, this benefit is the most important of all because ultimately mets is what everyone with breast cancer is trying to avoid. Even a very small reduction in the risk of mets is a significant benefit to most women. But for those who are Stage 0 and have pure DCIS, there is no risk of mets so there is no benefit from Tamoxifen in this area.

tlew · October 2012

Tiahill-we have the same exact situation. I had 1.5 mm idc removed during biopsy. And only left with .5 cm dcis after bmx.But my mo says no tamoxifen as the side effects outweighed the benefits. And i had a 2nd opinion from a different mo. he also didnt want to prescribe tamox. What were your measurements?

jill47 · October 2012

longislandmom: MO said no tamoxifen for this pre-menopausal 98% ER+ gal. MO said the risks outweigh the benefits so I'm on a 7 year plan of careful watching by my BS and/or MO. Ask your MO/BS what their long term plan is for you.

tiahill · October 2012

I think it was 1mm, not sure. All of it was confusing. I do know that I had multifocal DCIS with microcalcifications. Anyway, my cancer was 98% estrogen positive(hope that's correct lingo). Since I am so young, still producing a lot of estrogen, and my cancer loves estrogen so much, my onc recommended that I take tamoxifen.

longislandmom · October 2012

so interesting to see so many different responses. I have an appointment with my BS in a couple of weeks and will talk about long term follow-up. i think i'm just on the every 6 month feel-me-up program with some MRIs mixed in. but need to confirm. i have never seen a MO because my diagnosis was DCIS, i went right to BS and then PS. BTW...while not very young, (48), i'm not menopausal and am still a full fledged estrogen factory

jill47 · October 2012

longislandmom: Women with DCIS do have MO's. At my oncology center, it's standard cancer care to have one for all stages of bc not just invasive bc. My BS described my MO's role from the start is to assess risks not just pre-surgery but long term care too. For bc dx under 50 is considered "young"; so don't be surprised for the surveillance lasts for many years down the road.

longislandmom · October 2012

thanks, Jill47. i am thinking i will get a consult with an MO.

BLinthedesert · October 2012

Women have MOs after DCIS diagnosis if they are prescribed tamoxifen. Many of the rest of us get follow-ups from other team members (BS, RO, PCP ;-)). My radiation oncologist and breast surgeon trade off - I am seeing "someone" every 6 months. My BS tries to schedule his appointments around imaging - right now I will have a 6 month MRI only because I had a BRADS 3 in the opposite breast. After this month, I will get felt up every 6 months, imaging (diagnostic mammo) yearly. My RO said she will be seeing me for the rest of my life, my BS will likely discharge me after a year or two.

cinnamonsmiles · October 2012

I had DCIS and a BMX. My breast surgeon was supposed to keep track of me, but she left the area. I saw a medical oncologist for a second opinion and about a blood clotting disorder. I gave him a call, and he said, there is no reason that I need to see him, my primary could keep track of me. My primary said she doesn't feel comfortable watching out for me, so she says I should see a breast surgeon.

Anyone take Tamoxofin after BMX for DCIS?

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