Staring at my bottle of Tamoxifen

Hi Linda, I was wondering what you decided.  So you filled the prescription..that is one step further than I got!  I am sure there are studies out there about tamoxifen as a preventive tool but I think it would be hard to find a control group to compare it to since there are so many unknown variables with this disease like drinking, smoking, soy, babies, breastfeeding, gene pool et al.

I think you just need to listen to your gut and follow it.  Are the side effects worth the knowledge that you did everything you could to protect yourself?  Or...is the misery of the next few years (is it a 3 year course?) not worth the trade off? 

A fatalist would say that there is a predetermined fate for us anyhow - whether being in a plane crash at 30 or living to be 100.  So how much control do we actually have on the process, maybe very little. 

Being philosophic and not sure this is helpful, but more food for thought, I guess!  Hope someone out here can help.  I have read some threads about women who have taken tamoxifen but developed BC anyhow, but we probably won't read many out here about those who took it and are fine, they may not visit the board.

I have LCIS and ALH and ductal hyperplasia (not atypical hyperplasia), and I'm finishing up my last year (of 5 years) of tamoxifen.  I had 'warm' flashes the first few months I took it, and have had irregular vaginal bleeding and endometrial polyps (all benign), but I also had all these before I started tamoxifen.

Some people have a horrible time with tamoxifen, and some people have no side effects.  You can't tell what category you will be in, or if you will be something inbetween.

Remember, on any board, people are much more likely to post about side effects of a medication if they are having bad problems than if they are not. Most people who take a medication and have no side effects do not post about that experience.  There are very few medications, if any, that 100% of patients have a particular side effect.  I'm a hospital pharmacist, and one time someone called and told me never to dispense Dilaudid (an opiate) again because it made her pain worse.  I don't doubt her experience, but that is not the experience of most people.

I'm not trying to equate the two, but it is possible in some people with some situations to die of drinking too much water.

Luckily,one option is that you can start tamoxifen, and if you don't like it you can stop.   Some people find listing the risks in one column and benefits in another column, and comparing the two can helps with their decision.  Not everyone who takes tamoxifen will have strokes or get endometrial cancer, and not everyone who has ADH will get breast cancer. 

You have the power to decide.  Its up to you.  Only you can determine how the possibility of stroke or endometrial cancer would affect you.  Only you can determine how the possibility of breast cancer risk reduction would affect you.   Not everyone who takes tamoxifen gets a stroke or endometrial cancer; from what I've read, the incidence of stroke or endometrial cancer  is something like 1% or less.  And some people do have other side effects; I'm not trying to belittle them. We each need to decide what is best for us on our own journey.  My choice may not be your choice.  And that is how it should be.

My optometrist is very aware of my tamoxifen use and its possible effect on the eye.

But look at the order of magnitude risk in this 2006 study - the incidence was <1%.  Now different populations and studies may give different numbers, since you almost certainly didn't undergo chemotherapy. http://www.ncbi.nlm.nih.gov/pubmed/16369994 

In the 1998 NSABP study that compared tamoxifen to placebo for breast cancer prevention (which would be more of your situation), the rate of cataract development was 21.71/1000 women for  the placebo group, and 24.82/1000 for women in the tamoxifen group. (page 1379, bottom).http://jnci.oxfordjournals.org/content/90/18/1371.full.pdf  

So if you simply subtract the two incidences, you get an excess rate of about 3 excess incidences of cataracts per 1000 women for the women who take tamoxifen. That's a pretty low incidence in my book, but it may not be in yours.  We all have different feelings about what kinds of risks we want to take.

I don't know how you feel about this; its your body and your choice.  Many people in the US don't go blind from cataracts - many people have cataract surgery if they have significant cataracts.   

You may have a different medical situation too.  You may not be like the people in these studies.  But those are the best numbers I can come up with.

You would need to compare this risk to the risk of not taking tamoxifen or doing something different.  Its an individual choice.

I'm not alone!  I didn't know if there was a place for high risk women here.  I had two months of testing (mammogram, diagnostic mammogram, stereotactic biopsy and wire guided open excision biopsy).  I've been diagnosed with Atypical Lobular Hyperplasia and have been placed on Tamoxifen for five years.

So far, I've been on it for one month (on and off - more off than on).  My primary prescribed Effexor XR to help deal with the hot flashes and super huge surge in anxiety and depression (yay me!) Twelve days into the Effexor, I began to have esophageal spasms.  They occur in 2% of women who take this medication so I had to drop the Effexor.

I can deal with the hot flashes.  I can deal with the headaches I cannot deal with the increased anxiety and depression.  My breast surgeon doesn't seem interested in hearing my complaints. She says to take it up with my primary or gynecologist neither of which are familiar with prescribing any medication while I am on Tamoxifen and are hesitant to do anything.  So I battle the depression and anxiety and continue to suffer with incredibly heavy periods.

The breast surgeon said she didn't mind me taking a two-month break to address my other issues. I'm taking a four-month break and will wait until she and I talk in June. This doc is a big wig at Stanford and I'm grateful for her treating me but I feel broken now.....and have nowhere to turn. 

966666 

Hi Linda,

 I restarted the Tamoxifen on August 1st.  It's now the 15th and the raging anxiety is back and oddly enough, sheer exhaustion as well.

 I'm also taking Lexapro (10 mg.) in the hopes of warding off depression.  I don't know how I am going to handle five years of this when I can't even make it past the 1st month.