tamoxifin and endometrial cancer

Hi Dianinil,

I have no doubt that you mean well and those on tamoxifen should definitely be vigilant...but it might, in fact, be scary for women to read that the risk of uterine cancer is far higher than we've been told. And, the statement is not factually correct, which is why I had to question it.

The reason you've heard about so many cases of uterine cancer/problems after Tamoxifen is because once you yourself have an experience, you are more likely to hear from, and look for, those who have similar experiences. Just like someone coming to these boards might think that breast cancer is far more common than it actually is (although it sure is common) because everyone here has breast cancer. 

I agree with Britchick, everyone being offered tamoxifen should compare the potential risk to the potential benefit. For 100 women like me (stage 2B, ER+), tamoxifen will prevent about 12 breast cancer deaths. In exchange, it will cause .1 (that's point-one, or 1 in 1000) cases of probably-not-anywhere-near-fatal uterine cancer. So, the decision is obvious....

And if your onc isn't telling you about the potential side effects of the drugs, might be time to get a new onc! Mine gives me the rundown of every potential side effect of everything and sends me home with a card where it's all written out. Drugstores also provide this information when they fill your prescription.

Edited: to correct number of uterine cancer cases caused by tamoxifen. It's 1 in 1000. (The risk is 1 in 1000 for non-tamoxifen takers, and 2 in 1000 for tamoxifen takers, so cases *caused* by tamoxifen are 1 in 1000.)  

Hi TonLee,

I started having lower back pain approx. two months ago.  It seemed to appear overnight as it was almost like a spasm the first time I noticed it.  I thought it was from lifting a heavy suitcase for vacation, but it has not gone away and is now across my entire lower back.  I sit at a desk all day for work and drive one hour each way commuting so by the end of the day I am exhausted from the aching.  I walk every day and do stretching exercises and that helps, but overall it is difficult to live this way.

I had an ultrasound earlier this month after my gyn found on examination that I had an enlarged uterus and she was also concerned about endometrial thickening from the Tamoxifen.  My uterus is also tipped and with it being enlarged, apparently it is pressing on my lower back/kidneys. 

Results from the ultrasound show 'areas of concern'.  A biopsy was unsuccessful due to the retroverted uterus so now docs want to do a D&C.  I can't stand the pain anymore and am just going for the 'cure' - which to me is a hysterectomy.

Hope this helps?  If you have any other questions, etc., feel free to PM me. 

Between endometrial biopsy and transvaginal ultrasound, which is considered more accurate in monitoring for uterine cancer?  (Hey, I know the biopsy sound like the obvious choice, but they are only getting a small sample from a couple areas, so is one actually better than the other?)

Yes.  I've had one so far, after having been on Tamox. for about a year at that time.  His plan is to do them yearly.

I still have menstrual periods sporadically (perimenopausal) but they are not "spotting."  When I get them, it's the full blown menstrual tsunami, so I've gotten rid of the uterine lining myself a half dozen times since starting Tamox.

Is one of the procedures used more for pre-menopausal and one for menopausal, or does that not even matter?

Hi I thought I would add to this before I went on tamy I consutled my pre cancer gyn and asked for a ultrasound- she said "no". I then contacted the gyn doctors office where I had the braca and they said, Ok. In the middle of my cycle I was 8.6mm and I understand that can be normal. Had another UV on day 5 and it was 6mm.  I had one gyn who said I should have biopsy and contacted another who reviewed the data and said no.  All periods,..... are normal.

Anyway, review gyn stated that if I went on tammy she would not do anything unless I had a problem- did not believe in it.  Anyway, just got a new highly recommended name and I want to check them out.   My point is- it seems that each gyn has their opinions and I think we need to find one that works for us individually. Also I believe that the 1 or 2 out of 1,000 seems pretty low for the amount of women I have heard of with problems, and I wish there were more alternatives for women who are premenopausal.

britchick, thanks for all your great info. I had a question about your post about the risks. My understanding is that the risk of endometrial cancer is about 1% (absolute risk) while the 50% reduction in BC is a relative risk. i.e. if my risk of a cancer recurrence is 15%, then taking tamoxifen would reduce that risk to 7%. So it's 1% vs. 7%. Is my understanding right? 

Its hard to weight the numbers. i.e. I may be saving a 7% risk of BC, but taking on a 1% risk of endometrial cancer, 1% risk of blood clots, etc.  Sure hope my body uses the same calculator that the docs/scientists use. ha!  Is there any way to know whether I'd be in the 7% of women that would benefit vs. the 7% that would not, or for that matter, the 85% of women who would have no recurrence, regardless of taking Tamoxifen? I know of a test to see whether I'd be at higher risk for blot clots. 

Thanks Britchick for the info. Good to know about those other meds. Glad I don't have to worry about that (yet?)  I wish AIs were an option. I'm premenopausal (46) and I'm already at high risk for osteoperosis, so AIs don't look like they'll ever be an option. (though my MO said she wants to do another DEXA scan in a few years, since tamox supposedly helps with bones). Thanks for your input. BTW, I started another thread about possible tests to take before making a decision on tamoxifen. I listed the CYP2D6 there. Any others I should consider?

TonLee, do you have links to those studies or more info? i.e. are the tests completely off or is there a pattern? 

Hi again, I think that if my gyn offered me to do an annual bx (even though the pain was excrutiating) I would do it, but he won't, I asked him   Just to have peace of mind.  I would do a TVU and bx at six months interval.

Britchick, I was thinking of asking for the CA125 test bi-annually, does it make sense and is it accurate to rule out ovarian cancer, watched a show yesterday about it and it scared me.

TonLee, thanks a lot for that info. (I've got some reading to do)

elimar, thanks for the heads up on bone loss. Do you have links/leads to more info? I did a quick google search and the closest I could find was a study that showed some women don't get the "protection" benefit from tamox (but no mention of loss). thanks 

peggy_j, I cannot remember where I originally read about the bone loss, and after "totalling" my other computer I don't have the many bookmarks I once did.  BC.org gives out this info...

Tamoxifen tends to stabilize bone strength, but for the first year of taking it, pre-menopausal women may experience bone loss; post-menopausal women may have some bone fortification.

Here are a few sources.  The bone loss looks to be dependent on some other factors as well:

http://jco.ascopubs.org/content/24/4/675.short             

Older study, but not sure that a new conclusion has been reached???

http://www.ncbi.nlm.nih.gov/pubmed/8558225

Sorry, I'm not trying to thread-jack the subject away from the original topic.

They have probably have discussed both of these topics at least 25 times on the Bottle O' Tamoxifen thread already.  (I just do not have the fortitude to read thru' that giant, lengthy thread.)

Well said Comingto.

I have to say, last week I felt really bad...then I counted my Tamoxifen and realized I missed 9 days!!  I've been "back on" for a couple and whoa!  what a difference....I feel much better...I think my body produces excessive amounts of estrogen and it makes me feel horrible....I especially notice it now after chemopause...I think, for me, the Tamoxifen is gonna work out.

Of course now that I put that out there ...  lol

Elimar - on May 16th, I had a tvus and pelvic us. They cost me $1200. I am still in shock. I am having a biopsy on 6/8. I'll let you know what that is going to cost when I find out. ugh!

Hi Ladies!

This is all great information.

And great and even not so great to hear what we are all going through.

I am in Canada.  They do NO testing when you are on Tamox.  No TVU, no Endo Bx.  The only time they do is when warranted via some symtom. (heavy bleeding, pain etc)

My doc said that in the past she used to do Endo BX on her tamox patients all the time.  And that now a decision was made that it was not so much warranted unless there were symptoms.  She said that the risk is cleary low with Tamox causing Cancer.  Basically she said that thickening, polyps and etc are to be expected with Tamoxifen.

I have been on these boards for 3 years and have only known of 2 women to get uterine cancer.  Greatful for the low # but not greatful for those 2 women.

I am however, greatful for this post too...because I went to my doctor and told her 3 years on this stuff and I demand a check up.  Told her 1 lady in my support group (this post) got uterine cancer and I am stressing out!  Told her if she did not give me an Endo BX I will quit taking Tamox.

Sooo..she said call and make an appointment.

Sooo...after my next period I will go and have this done.

 It all goes back to taking control of your own situation.  We have to be aware of what is available to us...we have to educate ourselves on all of our options cause ultimately nobody is really going to do it for us.

I am so greatful to have found this site 3 years ago.  I think I would have lost it a long time ago with out it.

Hugs and thanks so much ladies.....Be Strong!!!!!

Kosh