DCIS, ER+, BMX, and Tamoxifen

cinnamonsmiles

I had DCIS that was hormone positive,  had a BMX for it. My breast surgeon wanted me to take Tamoxifen. I saw a very very good oncologist who is part of the UW-Madison teaching hospitals. He said since DCIS is only in the milk ducts and I had both breasts removed, that Tamoxifen would not really be needed.

What have your doctors/surgeons said about your hormone positive DCIS and tamoxifen after having BMX?

I am just curious.

crystalphm

I live in a small town, and had a small town doctor and onc. Ok, I did have pure DCIS, nothing else, and I had one breast removed with 8 clear lymph nodes.

I was told DCIS would not spread to my other breast, and the only reason for taking tamoxifen would be to protect my other breast from a possible cancer, which I had the same chance as anyone else to get.

We decided to not do the tax. but 20 months afterwards I had 3 places show up on a MRI in my remaining breast, and I had my breast removed. It was *not* cancer, the 3 places.

I am very curious too. In one thread I read about DCIS not being a real cancer....and in other threads I hear it spread to a breast none, but how can pure dcis spread after a double mastectomy?

Beesie

I had only a single mastectomy and my oncologist recommended against Tamox for me.  

I actually believe that it's irresponsible - in most cases - for a doctor to recommend Tamox. to someone who's had a BMX for DCIS because the risks and side effects from the treatment will usually outweigh the recurrence risk reduction that you'd get from Tamoxifen. The only exception is if you had very narrow margins or positive margins, in which case the local recurrence risk could be significantly higher than average and Tamoxifen would reduce this risk by about 45%.

Tamoxifen provides 3 benefits:

1) It reduces the risk of local recurrence by approx. 45%.  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 which means that at most, Tamox will reduce recurrence risk from 2% to just over a 1%.  

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).  For someone who's had a BMX, the risk of the development of a new BC is only 1% - 2% - so here again the maximum benefit/risk reduction is 1%.  Actually depending on your age, it can be considerably less than that, since the risk to develop a new BC is spread over the rest of your life whereas 5 years of Tamox will only provide protection, in terms of a 45% reduction in risk, for 10 - 15 years.  

On the other side of the equation, the risk of serious side effects from Tamoxifen ranges from about 1% to 4%, depending on your age and other health concerns that you may have.  The risk of quality of life side effects is significantly higher - I've read that about 50% to 60% of women experience some QOL side effects.  For those who have a high risk of recurrence or a risk of mets, the reduction in risk that Tamox will provide may be well worth the risk of side effects.  But for those who've had a BMX for DCIS and who face such a low risk of recurrence or the development of a new BC, taking Tamox in all likelihood will expose them to more risk (of serious and QOL side effects) than it will reduce (risk of recurrence/new BC).  

jbennett38

I also had pure DCIS in my left breast. It was ER+/PR+. I chose BMX which was done in July.  I have not been prescribed tamoxifen.  

dancetrancer

I initially had a dx of pure DCIS after BMX - no Tamox was recommended until we discovered I had close margins bilaterally.  Then is was recommended.    Recently, we discovered I had a small area of IDC, and Tamox has been strongly recommended.  I will start taking it very soon. 

distancerunner

I opted to take tamoxifen after BMX for DCIS due to a positive chest wall margin. I was uncomfortable to not do anything and my Onc told me that doctors debate about  radiation all the time. I did not want to have radiation. This is the decision I made for myself and have tolerated Tamox just fine and it's almost been two years.