What to do!

I'm in the UK so things are a bit different.  Over here pure DCIS is not even tested for er/pr so tamoxifen is not offered under our NHS service.

I'm just on a 5 year follow up with a clinical exam and diagnostic mammogram yearly. xx

I had DCIS and a left side MX with implant reconstruction. I am not taking tamoxifen because the benefits for me would not out weigh the risk. I to am low risk, DCIS, no family history, and tested negative for BRCA. I have never even thought about removing my "healthy" breast, I just can't do it. I try and eat health, exercise, and I figure I will deal with whatever may happen in the future. For now I am just trying to live my life with this new body.

Sandra4611 I am not sure where your breast surgeon got the 5% risk of leukemia from, as I have researched Tamoxifen quite a bit before choosing to take it and NEVER seen a linkage between it and leukemia.   There are chemo drugs that can cause a type of leukemia (what happened to Robin Roberts), but that was not Tamoxifen.    If you can provide a source for that information, that would be great.   Also, it is impossible to remove all breast tissue (including ducts and lobules) during a mastectomy, so the risk of any type of breast cancer still exists, although it is vastly reduced.

In terms of severe or life-threatening side effects, Tamoxifen does carry a VERY slight risk of endometrial cancer (increases the chance from 1/1000 to 2/1000), as well as the possibility of blood clots of the legs or lung.     Other side-effects have more effect on quality of life and include hot flashes, weight gain, leg cramps and mild hair thinning, but those will go away once you stop the drug.

I did not have a mastectomy, did not have pure DCIS, and so am taking Tamoxifen, and honestly, I have had very little trouble tolerating it, which is true for most women.

I had a Umx for a number of reasons, not having to have rads was high on my list and I was fortunate, after my final Pathology was in, I had no invasion. I never considered removing my good breast and when my surgeon spoke to me about Tamox, I said I would prefer to forgo it, but if he thought it necessary, I would do it. He didn't try to convince me to take it.

I am almost 2 years out now and am happy with my decisions. 

Erm... interesting Crestie.  I'll phone the hospital and ask again as it is something that I would have liked to have known but I was just told DCIS wasn't tested.  I'll keep you posted. x

This is not a case of "agreeing to disagree".  This is a case of "what are the facts?"

Sandra, you have posted the "5% risk of leukemia from Tamoxifen" stat before, and I have requested that you to provide studies to support this.  You have not.  I can assure everyone that there are no studies that would support this. 

You say that the 5% represents "only a small percentage of cases" but there is nothing "only"
about a 5% risk. Relative to the rate of leukemia within the adult
population, and relative to the benefit that most women get from
Tamoxifen, a 5% risk would be HUGE.  Astronomical.  If there was a 5% risk of leukemia from Tamoxifen, then virtually no doctor would recommend Tamoxifen to any patient except those who had the highest risk of recurrence.

I have done a ton of reading up on Tamoxifen
side effects and I
don't recall ever seeing leukemia listed as a possible side effect. I'm
certain it was never listed as a significant side effect or risk.  I did a quick check again recently and the only place that I found a reference to
leukemia as a possible side effect was one report that mentioned that of
8,671 patients who took Tamoxifen, 5 had developed Acute Lymphocytic
Leukemia. That's 0.005%. Of those 5 patients, 3 had also had chemo; since
leukemia is a known side effect of chemo (although at much less than a
5% rate) it's more likely that the leukemia resulted from the chemo rather than from the Tamoxifen.

I appreciate that on this board people often say things
without providing any back-up or support or just saying "I heard this from my oncologist".  Usually, even if the facts are wrong, the implications are pretty harmless. But if
someone with an advanced, aggressive cancer reads this thread and believes that there is a 5% risk of
leukemia from Tamoxifen, it might lead her to pass on a treatment that
she really needs, one which could possibly even save her life. So I
think getting the facts right on something like this is pretty
important. It's not a matter of opinion. There are facts that either prove of disprove this statement.  Everything I've ever found disproves it.  Sandra, if you have facts that prove it, please provide these facts.

(By the way, I too got pages of hits when I Googled "Tamoxifen and Leukemia" but
every article I checked was talking about chemo and Leukemia. If the
word "Tamoxifen" was anywhere in the article, even if it not connected
to the discussion about Leukemia, the article would nevertheless come up
as a Google hit when you search on those two words.)

As for the risk of DCIS and LCIS being 0% after a BMX, that too is simply not true. The risk is very low, but there is always the possibility that some ductal or lobular tissue might remain again the chest wall or skin after a MX.  Rather than add to this very long post, I will simply provide this link to a current thread in the LCIS forum: biopsies show more LCIS 7 years after PBMs

nipi, sorry for taking your thread off track.  To your question, as you know from our PM exchange, I had a UMX and did not take Tamoxifen.  That was 9 years ago and I have had no new diagnosis since then. 

EDITED TO ADD:   "The number of new cases of leukemia was 13.0 per 100,000 men and women per year.... Approximately 1.4 percent of men and women will be diagnosed with
leukemia at some point during their lifetime, based on 2009-2011 data." SEER Stat Fact Sheets: Leukemia   If you read further down on the page, it notes that the '13.0 per 100,000' occurrence rate is an average for men and women combined, and for women the rate is actually 10.2 per 100,000.  

This puts the 5% risk number quoted above into perspective. A 5% risk of leukemia for women taking Tamoxifen would mean that out of every 100,000 women on Tamoxifen, 5,000 would develop leukemia. Even if we were to assume that this risk is spread over 25 years (since leukemia could take years to develop), it would still translate to 200 women (of the 100,000 who took Tamoxifen) being diagnosed with leukemia each year, vs. 10.2 women per 100,000 in the general (non-Tamoxifen taking) population. If this were happening, there would be outrage and Tamoxifen would be pulled off the market.

thank-you for clearing this  up Beesie!   In all my research of tamox (over the last 11 years), I have never, ever seen any mention of a link to leukemia.!  (Some chemo and radiation, however, may carry a very small risk (as what they feel happened in Robin Roberts situation, when she developed MDS);  but with cancer (and actually most every other disease), doctors have to balance the risks versus benefits of taking any medication. In most  situations, the high risk of skipping the chemo or radiation needed to treat the cancer  now, far outweighs the low risk of  developing another cancer (MDS, leukemia, etc) later in life.  And although the risk is significantly lowered after a BMX, you still can have DCIS or LCIS left in the remaining tissue, as pointed out by a recent poster just last week. (LCIS was found in her remaining tissue during a revision to "tweak" things)

Anne

blueice, I am sure there are thousands of women who did not take tamoxifen and survived more than ten years. Many women opt out of this drug, particularly with early stage and even more so with DCIS. Since I am post meno, I opted to take aromasin which is prescribed off label since the only approved hormone blocker for DCIS is tamoxifen right now although studies are done and soon AI's will likely be approved. Most women diagnosed with DCIS survive more than ten years, with or without rads and/or tamoxifen. Hope this allays your fears if you opted out.

Thanks for backing up my thought. It does allay my worries and fears somehow. 

Me too TB! I don't take it either, my Surgeon didn't push it.

My Mother had terrible SE's from it, but she had a different Dx to me.

Thanks for getting into this one Beesie! Good to see you again!

Hello Sarahlou, I am so pleased to hear how well you have done over the 16 years since you were Dx, but that was a frightening experience for you. 

I hope you don't mind me mentioning here, that your original Dx of DCIS would have become a Dx of IDC when there was an invasive component discovered. It is very common to have DCIS found along with an IDC. The reason I mention this is that we have lots of newly DX women who have pure DCIS  and they can get very confused when they see someone with a DCIS DX in their post and they are talking about Chemo and a stage other than stage 0, which is the only stage Pure DCIS can be, because it is a non invasive cancer, which is contained in the milk ducts. Once it has made the cellular changes and can break through the ducts, it is no longer DCIS, but Ivasive Ductal Carcinoma.  Also, chemo is never indicated for pure DCIS.

I don't mean to contradict you, just to allay the fears of others who may be confused by the Dx.

atanea---leukemia is a known risk of chemo and radiation; I have never heard of any link between leukemia and tamoxifen.

Anne