this is true. The tamoxifen sits on the estrogen receptors of the cells in our body and blocks the estrogen from being able to be used at the cellular level. This means the estrogen is trapped in the bloodstream. We keep making new estrogen (and the body may try to ramp things up since the estrogen isn't getting into the cells). Estrogen is metabolized in the liver and it can only clear so much at once. The result is high serum estrogen. Short of an oophorectomy or taking Lupron shots to shut down your ovaries so you can take an AI, tamoxifen is all we have to starve any remaining hormone positive breast cancer cells in women who are pre-menopausal.

On tamoxifen I had an awful rash (felt like a really bad yeast infection) on my torso, hundreds of little acne bumps and cystic acne on face and chest, stiff joints, memory issues (forgetting the next word in a sentence in the middle of a conversation type of memory issues), unbearably itchy eyes and finally a dvt and bilateral blood clots in my lungs. When I discontinued tamoxifen, the acne changed to more cystic and increased, had my period 3 times in 5.5 weeks, mood swings, bloating, decreased libido, exhaustion but difficulty sleeping, weight gain (10lbs in 1 week), and hair loss. Diagnosed with too much estrogen and that is what is causing these side effects. Dr said it was a waiting game and eventually it would normalize. I took tamoxifen for only 2.5 months. I stopped it 3 months ago and still experiencing side effects of high estrogen (though they are getting better slowly). I worry that any remaining cancer cells are gorging on the estrogen feast they now have access to. Hysterectomy is coming up and it can't get here fast enough

Thank you, bosombuddy for this article. Very informative. My onco wants me on Tamoxifen for 10 years.

Has anyone else ever had to find a new MO Doc? I am fed up with mine. I had a lumpectomy in July 2016 and rads in Sept-Nov 2016. I had very little trouble with the surgery or rads. Fatigue of course and burns on my skin. I did develop radiation pneumonitis but non symptomatic. They found a small area on my right lung and have done 2 CT scans, due for another in a month. Pulmonary team just wants to keep an eye on it. Through all of this I've been relatively ok, I mean as good as you might expect.

Then off to the MO for medication. Tamoxifen 20mg a day for 5 years. First 5 weeks no real side effects with the exception of hot flashes and night sweats. A little fatigued but not extreme. Week six, I began having severe GI Issues. Diarrhea for six weeks and no appetite. I dropped 30 lbs in 12 weeks. Since I have a history of GI problems I of course went to my GI doc. He ran all the usual tests and determined it must be just a extrene case of IBS. He prescribed anti spasm medication for IBS and said it should work itself out. 2 weeks later, although the diarrhea had subsided I was nauseated 24/7 and could barely eat. I was really fatigued and extremely disoriented, could not concentrate, which I chalked up to malnutrition and lack of sleep.

I began thinking, the only thing different is the new Tamoxifen medication. I consulted my MO and he ran a few other tests my GI had not and found nothing. He suggested I stop taking the Tamoxifen and see what happens. I did, and 3 weeks later I was my old self again. All symptoms completely disappeared. On my next visit with my MO he was surprised that it all cleared up as "these are not normal side effects of Tamoxifen". He was so sure Tamoxifen wasn't the culprit he wanted me to start back on it. I asked if a lower dose might be better and he stated no I can't lower the dose.

3 Weeks after restarting, the stomach issues returned. I began researching on line and indeed Nausea and other GI issues can be a side effect. Really? My MO said it was unusual and doubtful the Tamoxifen was contributing to my misery. After some suggestions from this community I found Teva brand use fillers and dyes that were gluten free and some people gleaned relief switching to this brand. I immediately had my pharmacy switch my brand and began taking the Teva brand. Guess what? No more GI issues!! I relayed this info to my MO and he responded, ok good.

Four weeks into taking the Teva brand I now have other side effects. Still hot flashes and night sweats but now a host of other issues. Extreme anxiety, agitation, and confusion. I am constantly on edge and can't sit still or concentrate. I asked my MO could this be due to the Tamoxifen? He said that his highly unlikely but let's reduce your dose to 10 mg. (WTH I asked months ago and he said no we can't reduce the dose?)

The anxiety got so bad I ended up in the ER last week thinking I was having a heart attack before I even began the 10Mg regimen. They kept me overnight and determine there were no heart or lung issues. I asked my MO if this increased anxiety could be the result of the Tamoxifen. He stated it was very unlikely and I should see my GP.

I saw my GP last Thursday and he said he was not sure why I was feeling this way and was probably just stressed and likely depressed. He prescribed Prozac. I had read Prozac was not good to use with Tamoxifen and told my MO what my GP prescribed. My MO responded, OK. I then told him really? Is Prozac ok to take with Tamoxifen? His answer, Shoot I wasn't thinking, no don't take Prozac. He then prescribed Effexor.

I now have 10mg Tamoxifen and a slow start of Effexor sitting in my medicine chest. 2 weeks off Tamoxifen now and my anxiety has reduced dramatically. Not before landing me in the ER with the "I think I'm having a heart attack" embarrassment.

All this leading back to my original question, is it time for a new MO? Do all MOs deny SEs that are out of the norm? I think I need to find one that believes these are side effects and will work with me to figure it out, not make me think I'm just losing my mind. How do you go about finding a new MO?

Bosombuddy
I'm not an expert and relatively new to this site myself. I came here after I began having issues after I started taking Tamoxifen. I was tired of my MO telling me my issues weren't related to taking Tamoxifen.

From what I've read: (copy and paste)

Tamoxifen may be prescribed in women with ductal carcinoma in situ (DCIS) who have completed surgery and radiation therapy. Tamoxifen may reduce the risk of invasive breast cancer.

Thanks Exercise Guru,

I am researching and trying to find one that specializes in BC. The one I have does it all as you say. Patronized is a good word for how he makes me feel. I at least need someone who believes there is a direct effect caused by the medication. Seriously, I'm off for 5 weeks and return to normal, go back on and the effects return. I'm no Dr. but that alone should prove there's a link.

Mylan is the first brand I was on that jacked my stomach all to heck. Teva, doesn't bother my stomach but now I'm batshit crazy. I'm glad the switch to Mylan worked for you. I agree it's necessary, but putting up with this is not an option when it's effecting my ability to work or function.

Hi everyone. We all deserve to be treated respectfully by any doctor. However a physician dealing with cancer should be especially compassionate. Yes a lot of MOs deny or minimize the SEs of anti hormone treatment. However it is possible to find one who is open to working with you. Just keep trying!

Lula...I understand what you are saying however IMO its not our responsibility to ask the questions a certain way! We have enough to worry about. A good doc should be able to answer appropriately no matter how we ask. Also a SE is a SE no matter if its directly or indirectly related to the drug. MOs should be able to identify them regardless and work with us to find a solution. Good luck to all navigating this complicated disease.

dtad- totally get what you're saying, however we have to remember that doctors are humans too. They have many idiosyncrasies just like everyone else. In fact, many of them were the awkward nerdy kid in school who didn't have much "regular" kid-type interaction. They were not the ones on the football or cheerleading teams, they were not at the "cool kid" parties in high school or college. For many of them their social skills are lacking. They are also very literal and are trained to think critically & clinically, and not in an out of the box manner. I work with doctors everyday and get to see the way they think, interact and work first hand. I realize we're the patient and they're the dr. But if you the patient recognize that sometimes you need to word things different to engage the Dr's thinking process in a different manner and you choose not to do it because you feel the Dr should just know this or do things a certain way there is only 1 person who loses out. It's like going to the dr, sitting on the exam table and when the Dr asks what Brings you in today, you respond with 'you're The Doctor, you tell me.' And in their world there is a difference between Side effects of the medication directly (allergic reaction, nausea, etc) and side effects that are the result of a chain reaction of events from the mechanism of action of the drug (high serum estrogen, acne, mood swings, etc). All I'm saying is remember That they are human too and that there is a gap in how the patient thinks and how her doctor thinks typically on all levels of the spectrum. And for the best care, we sometimes have to work a little more with each other's quirks

Lula...got it! Be well

CCS, well now you have. I lost 30 lbs in 3 months due to digestive issues and constant nausea. I changed brands and that helped the GI issues. However now I'm having extreme anxiety levels. At least that's all I can fathom they are. I too had a battery of tests because I literally thought I was having a heart attack. After no heart issues were found my GP put me on anti anxiety meds. I am NOT an anxious person. A week and a half later, off Tamoxifen for nearly 3 weeks I still have rapid heart beats, lightheadedness and get dizzy. I'm suddenly having bouts of weepyness as well. My brain is returning to normal which is nice but will be short lived. I'm heading out for a 4 day road trip vacation. Nearly postponed AGAIN, because I'm not feeling myself. However, I have canceled 4 work and 2 personal trips since these NOT SE's started. I need a taste of normalcy. Once I return I will restart the Tamoxifen at a lower dose and use the Effexor and say goodbye to my brain, ability to think rationally and problem solve. My work is really suffering but thankfully I have a caring and understanding boss.

Surgery and Rads went well and I thought "hey, I got this" I never realized the hormone therapy would put my life on hold for five years! Four more to go.

Hi everyone

I have been on tamoxifen for nearly a year now. I recently got hormonal blood tests done and estradiol is 1697 which is completely abnormal. They have now said to stop taking the tamoxifen and have referred me to another Dr to see about having my ovaries removed. I am terrified to think something else is going on. Thanks everyonr

Hi Diane

I had a pelvic ultrasound yesterday and waiting on results. I have decided I want my ovaries out that level of oestrogen is off the charts. Just wondering did anybody else have anything similar.

Sabina

Do AI's lower estrogen or do they just block receptors as Tamoxifen does?

Hi Bosombuddy

So stressful yes they requested bloods because I had a very small bleed, just once about 3 weeks ago. So of course when saw the level that high my oncologist said to stop taking it. So I think ovaries out and possibly uterus as well. Well if they have told me to stop taking it then it must be of concern to them. I have read though it can still work against cancer cells!!

Sabina