Grueling Tamoxifen Decision with DCIS???

I've heard and read that the risk of recurrence or a new BC after a mastectomy for DCIS is in the range of 1% - 2%.  But even if it's 3%, taking Tamoxifen would reduce this risk to about 1.5%.  So that's the maximum benefit.  Is a reduction of local recurrence risk of 1.5 points worth it for you? 

A few considerations:

- Most local recurrences happen against the muscle near the chest wall or on the scar line.  With the removal of the breast tissue, the muscle in front of the chest wall is right up against the skin.  For those who have reconstruction with an implant, the implant is put behind the muscle, keeping the muscle in front, just behind the skin.  Because of this, local recurrences on the scar line or against the muscle near the chest wall usually are noticeable early on because they aren't hidden by breast tissue.

- Tamoxifen has some serious side effects.  Based on age and personal health history, some women are more prone to these conditions than others.  So depending on where you fall, your risk of serious side effects (stroke, deep vein thrombosis, uterine cancer and a few others) will likely be in the range of 1% to 3%.  Your oncologist should be able to provide more detail on this, specific to your risk level.

- In addition to the serious side effects, Tamoxifen has a number of quality of life side effects.  Some women don't experience these at all, some experience them only mildly, and other women are left miserable.  The studies I've seen suggest that overall, approx. 60% of women who take Tamoxifen experience some quality of life side effects.

That all gets me to my decision.  I had a lot (at least 7cm) of high grade DCIS with comedonecrosis.  My DCIS was multi-focal and multi-centric (in other words, my breast was full of it).  I had a single mastectomy only.  In talking to my oncologist, I expected him to recommend that I take Tamoxifen.  He did not.  He actually recommended against it, saying that he felt that for me, the benefits (in terms of BC and recurrence risk reduction) didn't warrant the risk of serious side effects and quality of life side effects.  I went away and thought about it for a while and researched it heavily.  I ended up agreeing.  For me the benefit of Tamoxifen would have been about a 1% benefit in terms of recurrence reduction and approx. a 4% reduction to my risk of getting a new BC (in my remaining breast).  I decided that this benefit was not enough for me.  I know however that many women, looking at those same numbers, would choose to take Tamoxifen.  So in the end, only you can decide what's right for you.

My Oncologist pulled up a website and entered my specific information then it told us my chance of recurrance was 1-2% and taking tamoxifen it would reduce my chances of a recurrance by 1/2 or 1%.  For me, I decided it was not worth the side effects and risks associated.  My Onc said no physician at our hospital/clinic would recommend it with my stats.  He said if his wife were in my shoes, he would not recommend she take it either.   He did say that if any time in the future I change my mind - I could.  It is now two years out and I am have not changed my mind.  Good luck with your decision.

I'm not up to the Tamoxifen decision-making stage - haven't even met with any oncologists yet. Just had lumpectomy and am scheduled April 7 for re-excision. However, I doubt I'll be able to take Tamoxifen because of a predisposition to clotting. I'll redo the bloodwork, and maybe it will look better, but if that's my situation, I think the decision's probably been made for me. I have mixed feelings of course: glad I can't take it; and sad that I don't have the option (if I don't). Best wishes with your decision.

Thanks, Catherine, for thinking of me! Glad you're feeling better about all the info flying around out there. For what it's worth, my neighbor had DCIS a few years ago, had a mastectomy on that side and no further treatment (no rad, no Tamox). That sounds like a perfectly reasonable course to me.

Just chiming in here--- I had DCIS and took tamox for 4 years, then quit. I feel so much better now. It's really a personal choice, and I have eliminated many other "toxin" sources in my life.

I had a lumpectomy for a 3cm by 3cm DCIS tumor. Had 6 weeks of radiation. Hated all the diagnostic "positioning" x-rays they did during the radiation. I will NOT take tamoxifen for risk reduction. The dangers of endometrial cancer, blood clots, cataracts, etc. do not make it worth it.