Just had mastectomy, do I really need to take Tamoxifen from now on?

RozHopkins said:

He Blueice

The dreaded Tamoxifen.......... Like you double masectomy on Tamoxifen three years because Estrogen Positive and pre menopausal.  My oncologists view was stay on it for ten years.  This is a new view as I think too many people get it back after five years in my opinion (as did my mum) and they appear to be trying to prolong it to that length of time.  BUT my oncologist is very proactive on keeping fit and eventually I could virtually not move and had to stop going to my beloved fun gym classes.  We tried other things and even though I know you must keep on the meds I have just come off everything to see how I feel for six month.  I didn't know if everything happening to me was side effects, normal aging stuff, Menopausal stuff, things that were old problems irritated further by blocking estrogen etc. 

 

Its a tough choice but yes it is the norm to take Tamoxifen after treatment if pre meno and Arimadex post meno if you can.  If you don't wish to take it you may have to battle to get your way, but it is your choice.

 

No I have not as far as I know had recurrence nor the several cancers Tamoxifen can cause but I am having a scan this week to check out ovaries due to a recent problem which could be them, uterus, bowel or just a nasty bug.  That the trouble we never know.

 

other ladies will be sure to be chatting to you. 

I had endometrial cancer - all on my own.  It was diagnosed 4 days before my bc diagnosis.  I was told by gyn oncologist is that it is not unusual for a woman to have both endometrial and breast cancers sometime in her life because the risk factors are the same (i.e., estrogen).  Tamoxifen adds another risk factor (because the uterus sees it as estrogen and goes through changes).  Women on Tamoxifen are monitored closely for endometrial thickening.  And it does happen.  You will need to take gyn follow-up seriously.  Ugh.

Only you and your oncologist can make this decision.  Maybe you could also have a consult with a gyn oncologist, particularly because of your gyn history.  How does this play into taking Tamoxifen?  How do you feel about having a hysterectomy?

I think knowledge is power and so understanding why it is an increased risk rather than simply "it's a risk factor" might be helpful to you in your decision.  Make these folks explain things to you, give you statistics, etc.  Don't do it just because it is recommended and don't not do it because so and so didn't do it and is just fine.  So and so can still get endometrial cancer and Tamoxifen doesn't always work for everyone and is more important in some instances than others.  This is all about you and your cancer and while no one can know anything for sure about your outcome, making decisions knowing all the facts is so much better than not knowing. 

Good luck,

Suzanne

I don't know if your old enough to take an aromatase inhibitor instead of tamoxifen (Arimidex, Femara and Aromasin).  

I started on Tamoxifen in 1995 as it was the only choice I was given.  Aromatase Inhibitors didn't come out until 1998 and Faslodex was around 2001, maybe.  I had a ct scan six months later for another reason but they did find that I had a thickening in the uterus.  In 1999, a tumor was found and I went on Arimidex, six week later, I began to bleed.  I had been in chemical menopause since the end of 1994 when I was doing chemo.  I went over 2 years bleeding and finally a D&C took care of the bleeding in the uterus.  It was do to polyps but the cells were changing.

It doesn't hurt to try Tamoxifen, just be aware that you should be followed by your gyn doc.

Best,

Doris

PS  You want to give yourself the best option of not having the cancer return, that is why you probably should consider a hormonal therapy.