Who Here Took Tamoxifen?

I took tamoxifen for 5 years after the first BC, but they think the 2nd 8 years later was an independent event, because it had different characteristics. So it was not a reoccurrence.

I didn't bother to find out the receptor status of the 3rd, just had a bilateral.

I took tamoxifen for two years after my first diagnosis and stopped due to side effects. My reoccurance was this last october. two years after stopping the tamoxifen and it was an offshoot of the original cancer. chemo didnt kill it. Tamoxifen suppressed it for two years but once off the drugs its came back.

Hey Accidental,

   I just think that it kept it away for almost 5 yrs..Without it I would have had a recur much sooner..I guess my body just got use to the drug or built up a resistance to it after 5 yrs..I am strongly er and pr ++++++ and strongly her2 +++..My hormones were crazy out of control. I even got my period throuhout ALL of my chemo, all of my rads, and all of the yr on herc. I also got regular periods while on tamox...My periods only stopped after being on the lupron shots every month. When I started getting the lupron shots every three months I was getting break through bleeding, so onto the monthly shots..I think if I were to stop the lupron today, I would go right back to getting my periods, and I'm 47 now..My grandmother was still getting hers until she was in her late 50's., almost 60..My mother mid fifties, and being on tamox. My mother also had her recur at her 5 yr mark, just finishing tamox.. Who really knows, but as tough as tamox is to take some day, I think it is really important to take..Best wishes all KLynn

I've had cancer 3 times, but this is my first post to any forum.  First one - right breast - was stage 1 - had lump removed, all lymph nodes from under right arm removed, radiation and 5 yrs tamox,  This was about 15 years ago.  Had yearly mammograms which remained clear.  Until 2 years ago, when 3 tumors showed up on left breast, totalling nearly 5 CM.  Had several positive nodes so nodes removed left side.  Stage 3a.  Had lumps removed, radiation, and now on Arimidex.  Left surgical scar reopened after radiation and is still open - 1 year later.  Mamo in April 2008 was clear both sides.  Finally had a MRI in November which showed potential issue on right breast.  After an MRI-assisted biopsy, they confirmed cancer again (1 cm) - less than 2 years after last one. Have decided on bilateral Mast. in 3 weeks, with no reconstruction. 

Estrogen appears to be my issue also, as all 3 cancers have been ER+.  It's unclear if the cancer in the right breast was present all along, and perhaps missed by earlier scans.  I Have a supposedly unrelated condition with leiomyomas all over my body (Genetic condition) and a hysterectomy at age 28 due to fibroids.  The Arimidex has weakened my bone structure and a simple fall last January resulted in a broken wrist and broken knee cap.  Am on large dosage of Vitamin D.  Still working full time and feel reasonably good.  But this is getting old.  Looking forward to taking a vacation - even though the economy sucks, after 3 cancers, it's time to relax and enjoy life.  Luckily, my CAT and bone scans are clear, so no METS (yet).   At 59, I'm really glad my husband and I traveled a lot to wonderful places over the years.  If you wait until you retire, you're betting you'll be in great health, and I would have lost that bet. 

With no lymph nodes either arm, infection and lymphodema are continual risks.  Have had infections on left side twice in last year, one resulting in hospitalization.  Have stage 1 lymphodema, and will start wearing sleeves and gloves.  Do daily arm and left exercises, with weights.  Don't want it to get worse.  Haven't had blood pressure taken in either arm for nearly 2 years.  I have cysts on both ovaries that they will probably remove later in the spring.

 However, things could be a lot worse...I'll make it.....It's reasuring to see the posts of many women who have had Bilats as well as 2, 3, or even more bouts of cancer - spirits seem good and people keep on keeping on.  Glad to have found this site.  Good luck to you.

I took Tamoxifen after my first bout of BC after radiation and was on it for five years and cancer returned but in my other breast. This time it had spread to my lymph nodes so I had Chemo and radiation. The dr put me on Arimidex which I was on for three years. After eight years of being on drugs that suppressed my estrogen and made me have menopausal symptons (hot flashes, personality issues, etc) and taking other drugs for these side-effects, I took myself off all medications. I was diagnosed with BC for the 3rd time last fall. I don't think the cancer came back because I went off the drugs. I can't seem to make it past my fifth year mark but I'm hoping because I had a BLM this time, that I am through with breast cancer. Not sure if I would retake the drugs again. I am meeting with my oncologist in a few weeks and I sure hope he won't suggest taking drugs again. Anyone else have an opinion on this? 

I was diagnosed 2 years ago with cancer in left breast. Had a lumpectomy, clean margins and no nodal involvement, and radiation. Oncotype scores were low, no chemo. Was put on Tamoxifen. Had a hysterectomy later in the year and doctor switched me to Aromasin since I was technically then "menopausal". Just diagnosed again with 3 tumors in other breast. These are new, not a recurrence. Just had a double mastectomy and will begin chemo this week. Also had the test for the Breast Cancer Gene...NEGATIVE. What the hell happened?

Ingrid,

 Do you remember why you were given tamoxifen after a bilateral?  I didn't think they did that if you has DCIS....

I took Tamoxifen from 2/07 until 10/10 when I had a local recurrence in the same breast, same area.  I had a lumpectomy, rads and tamoxifen the first time.  This time I had a 20 weeks of chemo followed by bilateral mx, lat flap on cancer side since it had been radiated and now I'm on Armidex.  I hope I got it this time.  The worst part of it all is the worry and depression about it coming back.  Another interesting fact that I had was the first time my oncotypedx was only  a 9 so they told me chemo would be of no value yet this time they said chemo was  necessary.  Same kind of cancer both times, Pleomorphic ILC.  Also my mammogram on the day of dx was perfect.  I also had a PET scan which was perfect and a MRI that did detect it.  My BS is the one who found it.  Good luck!

Interesting to read everyone's experience with Tamoxifen.

I plan to address the drug more with my onc.  I'm hesitant to take it.  How much will it decrease my recurrence risk?  He told me it only works for 50% of the population (or something like that...)  That's a discouraging stat.

I'm in chemo now and had a period.  Great.  I have a feeling that is a bad sign. 

I was diagnosed with breast cancer in my left breast in 1999.  After chemo and radiation I took Tamoxifen for five years.  Now in April 2011 I was diagnosed with breast cancer in my right breast.  After testing, will have to do TCH chemo. 

Mrsbeasley38 - not sure who you were asking, but both times mine were found by mammo.  Both were too small to be felt

I took tamoxifen for3 years and Aromasin for 2 years.  I have a recurrence at 9.5 years; however, totally DCIS this time,  Oncologist believes the the tamoxifen and radiation probably "killed" the invasive cancer, but only suppressed the DCIS.   So I think the tamoxifen didn't "fail" for me; as it took care of the more dangerous cells.  While I am sorry I have a recurrence, I'm glad it's DCIS.