Desparately Need Tamoxifen Advice

I am a 38 year old premenopausal woman diagnosed with Stage 2 invasive carcinoma & DCIS.  My pathology showed hormone receptors at 3+ for estrogen and 1+ for progesterone.  My nuclear grade was 3 and my mytosis was 1.  I had a bilaterial, skin sparing mastectomy on 12/8 and began my first of 6 rounds of chemo (ACT) yesterday.  I've been battling with the necessity for Tamoxifen after chemo.  I've read about the side effects and am not eager to potentially trade one cancer for another, not to mention early menopause and all of the other side effects.  My breast surgeon felt that because of the bilateral, Tamoxifen would not be necessary, but my Oncologist is insisting.  

My question is, is Tamoxifen necessary for me?  Are there alternatives for premenopausal women?  What are my acutal risks for reoccurance should I decline using Tamoxifen?

Help!

Gina

[CCF-RN,MSN-rf]

Dear Gina:  In a 1998 study of 18,000 women, tamoxifen improved survival in estrogen receptor positive women.  In node-negative women the difference in survival was 5.6% higher in those who took tamoxifen for 5 years.  Additionally, tamoxifen significantly reduces recurrence.  Tamoxifen is a selective estrogen receptor modulator which means it blocks estrogen in some areas and not others.  As a result, you may or may not experience menopause and, if you do, it could be temporary.  Your oncologist could better outline your risk of recurrence and the expected benefit from tamoxifen.  

[paulin]

Last January I was diagnosed with breast cancer stage 1 and no lymph nodes involved.  Had no chemo but 7 weeks of radiation.  I have been on Tamoxifen for 6 months now.  The first month after starting I had a normal period.  then the next month I had to go in and get a polyp removed from my uterus that I had since before my breast cancer, and after that I have not had a period since.  They say it's probably from the Tamoxifen but I have always had regular periods so this doesn't make too much sense to me. The first few months I had hot flashes day and night!  It was not fun but tolerable.  Then all of a sudden they stopped so they did a hormone check and found my estrogen levels very high which they think it was from some cysts they found on my ovaries.  The cysts went away and the hotflashes came back but not as bad.  I am 46 and not in menapause yet nor did I think I was close.  Tamoxifen has made my periods stop but like they say it's probably tempoary.  I was afraid I would feel a lot different but I don't.  Other than the hot flashes, everything else dosen't seem to have changed.  My personal advice is this...  Everytime I take the Tamoxifen it is like a security blanket for me  with this disease anything that you can take to help prevent reoccurance is worth it.  We are the lucky ones that at least they have a pill to help.  Once you go into menapause they will switch you to Arimidex which has a lot less side affects.  My doctor says the % of getting uterus cancer is so minimal that it is definitely worth taking it.  Also now that we have this disease we are being checked more regularly.  I would HIGHLY recommend taking it.  If by chance you don't do well on it you can always quit.  They say 2 years of Tamoxifen and 5 years on Arimidex is the best combination.  Hope this helps!  My thoughts and prayers are with you.  Hang in there, it will get better.

[Lizzy0827]

I'll second what the previous writer said! We are the lucky ones - I'm a 2 year survivor and was 90% positive for estrogen and 80% positive for progesteren. I have a friend who's daughter didn't like the tamoxifen and went off of it. Within 1 years she had a reoccurance. My gynecologist does and extra ultra sound to check for any negative effects of the tamoxifen, but says if you check it regularly the risk of ovarian cancer is minimal. The research says it all about the benefits of tamoxifen.

As for the side effects - they go away. I had miserable hot flashes and mood swings at first (I'm only 35 so also pre-menopausal). The doctor put me on Effexor, which cured the hot flashes, but killed my sex drive and added 25 pounds to my body. I recently went off of the Effexor and the hot flashes are minimal. Apparently once your body adjusts the side effects aren't as bad. I have fairly regular cycles now, but it wasn't until I'd been on the tamoxifen for almost 2 years that happened.

One bit of advise I'll give you - be careful of the Effexor. Going off of it is a small visit to hell. Mood swings, nausea, diahhrea and head and body aches. If you do a web search you'll find all sorts of info about Effexor withdrawals. On the other hand, it was easy compared to chemo.....

Good luck to you!

[Linda L]

Can any of you comment on the ovarian cysts?  I recently had a mastectomy and have been on tamoxifin (tamoxifen) for 3 months, my period ceased the second month/hot flashes for 1 month only.  I am 41 years old.  I thought I was on my way back to a normal life then they discovered I have a complex cyst on my right ovary.  I feel like I am going through hell all over again.  My breast surgeon has indicated there is no relation due to the fact I had DCIS, negative lymph nodes/stage zero.  Any comments are helpful.

[snuzee]

Hi, I am a breast cancer survivor almost 5 years.  I am 46, I have about 4-5 months left of Tamoxifen. I will be honest, when you hear "CANCER" regardless as to where, what, why or how, it sucks!  But so would a stroke, heart attack just to name a few.  Yes there is the possibility of getting cervical/uterine cancer.  As well as ovarian cancer. But if you're perimenopause then Tamoxifen is the drug that has shown the best results for those who still ovulate and have occassional periods such as myself.  One thing I would have liked to have known during or prior to chemo, and that was the fact that my ovaries did what they were suppose to do, and they got better.  WHAT?  Yes, I've always been a fertile mrtyle.  But talk about going into a depression right after the initial fear of getting the first period.  Talk about fear, that probably topped the charts for me.  Oh yes I noticed a few side effects of Tamoxifen, but those do mellow out.  But as far as not knowing when the next period would hit was still uncertain.  Keep up with regular check ups, when they do your blood work whether it is every three months or six months, be sure to ask for a CA-125.  This is the test for the ovaries.  Ovarian cancer has been a silent killer, but only because it isn't detected by a pap smear.  So everyone needs to ask for this test at least every year. It is covered by insurance, some doctors however seem to try and blow it off, but at who's expense?  Yes Tamoxifen doesn't work any longer than five years.  Some people who have gone into memopause earlier should change.  Why wait unless you're a rebel like myself.  In my case if I don't stop with the periods, then out go the ovaries.  Everything gives you cancer, but what cancer can't do:
Cancer can't cripple Love, it can't shatter Hope, it can't corrode Faith, it can't destroy Peace, it can't kill friendship, it can't suppress Memories, it can't silence Courage, it can't invade the Soul, it can't steal eternal Life, it can't conquer the Spirit...........

[Mollylew]

A related discussion, Tamoxifen and it's risks was started.