Changes during Tamoxifen
I've been on Tamoxifen for over a year now. My periods have been fairly regular, usually about every 5 weeks and I also tend to get pretty bad hot flashes at night. Usually a week or two before I get my period, the hot flashes stop, so I know that my period is on its way... and then they start up again pretty much the second my period comes.
About a month ago the hot flashes stopped, so I assumed I was getting a period... but it never came. It's now been a couple months without a period, and without hot flashes. Obviously not complaining, but just wondering if this happened to anyone else.. if your cycle changed throughout your time on Tamoxifen, and if your hot flashes disappeared for long periods? Just seems strange after being so consistent, so I'm wondering if this is normal for others.
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Bump
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my oncologist said that when on tamoxifen, 25% will continue with normal periods, 50% will be irregular, and 25% will stop altogether. I was in the irregular group. Sometimes I would get a period at 30 days, sometimes not until 60 days, and very very light. I did however, end up with large ruptured ovarian cysts after about 1.5 years on tamox, (apparently a very rare complication (<11%)), had a total hysterectomy and went thru immediate surgical menopause. So I always tell people to be sure and get a yearly transvaginal US while on tamox, to monitor the ovaries as well as the uterine lining.
Anne
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My periods stopped completely 5-6 months after being on Tamo - my oncologist gave me a 50% figure in chance of Tamo making me menopausal. I agree with awb to have at least gynecological exam. I started spotting and my PCP sent me to a gynecologist, who then took a uterine sample. I started going every year after that and the final year I was on Tamo, they attempted a transvaginal exam, but weren't able to because the walls were so thick. I went for a D & C at the hospital. Each time the uterine tests came back normal. My ovaries were never mentioned, so I guess I was lucky there.
Take care, Sherri
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Hello,
I started taking Tamoxifen in January 2014. My periods have been regular but shorter and lighter except for the last cycle which was 2.5 weeks late (I assumed this was due to a big life change, starting a full-time Masters course) and my lower abdomen was very painful and I was constipated at bit too. I know I have a very large cyst on my right overy. Since my last period, my tummy area has not gone back to normal, it feels very 'tight', bloated and I am constipated or going irregularly to the bathroom. I have an appointment with my gynecologist 9th December (impossible to get an appt sooner) and acupuncture on Monday. Last time I saw my gynecologist (Sept) he said it was perfectly normal to have cysts. Am a bit worried though as I don't feel good. What tests should I be asking for?
C.
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Hi,
I have a similar story to some of you. I started tamoxifen in January 2014. My periods have been pretty regular up until the last few. First I missed one all together, then the next two were a bit late, 35 days or so, and very, very light. Back in September, I had a transvaginal pelvic ultrasound which showed hemorrhagic cysts on both ovaries, and several uterine fibroids. My MO ordered a CA125 test, and some hormone tests. A few weeks later I met with my GYNO regarding the results, she said these findings were pretty common, and she was not worried. However, she is sending me for a 3 month follow up transvaginal ultrasound end of December, just to be sure the cysts haven't grown or anything, and just to make herself and all my doctors, and myself, feel more at ease. Another weird thing was my estradiol levels were quite abnormally high. She said she will discuss this with my MO, but she seemed to think in my case it may just be due to tamoxifen.
Ce3,
I hope you can get in to see your gyno sooner. If you call back and explain how concerning your symptoms are, and be sure to emphasize that you are a breast cancer patient, hopefully they will squeeze you in sooner. Or at the very least, you could ask the doctor to call you. Another thought, can you call your MO about it? Mine was very concerned about my gyno symptoms, and ordered the tests a gyno would normally order. He also works closely with my gynecologist. But definitely don't take no for an answer, especially if you are not feeling right.
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sherridl,
I recently finished my five yrs in July and have been having heavier periods and some spotting. I was wondering if you had similar issues and, if you did, how long they lasted. My gyne and onc say it's normal for irregularities to occur, but I would like to hear from one of the girls.Thanks!
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I've had irregular periods but I'm 50 and peri-menopausal, so who knows what part is tamox and what part is "the change." But my MO said that tamox can interfere with the "signalling." I think she means that we might still be ovulating but the signaling might be confused ( to tell the uterus to slough off the cells). i.e. use birth control!
My MO and gyno are definitely in the better safe than sorry camp, so if you have any unusual symptoms (such as pelvic bloating) be sure to let them know.
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anyone had a biopsy of the uterus wall due to thickening on tamox ?? What should I expect ?? My doctor said its a little painful.....I'm thinking if a doctor says that its gonna hurt like a bugger !!!! I also have an cyst on my ovary but doesn't hurt . I only had one period in 11 months after chemo but no other se !!!!
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Annika -- I had my first uterine biopsy in October and I won't lie -- I found that it hurt. Once it was over, I was just a bit crampy for the rest of the day -- not really in pain. If you can take anything before the biopsy to dull the pain, I would. -
Re the endometrial biopsy: I have had 3 of these done in the gyno's office due to endometrial thickening detected on an US. My experience may not be the norm, but I found these to be incredibly painful (though short lived.). The third time the dr even gave me a painkiller and Valium an hour ahead of the procedure, but they didn't have much of an effect. Dr speculated that the pain may have been due to the fact that I never ha a vaginal birth (had a c-section), so the cervix didn't dilate. We both decided that if I should ever need a biopsy again, we would do it under twilight anesthesia. However-- I have heard that most women tolerate the biopsy quite well.
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thank you ladies !!! I usually do better when I know what to expect !!! I'm pretty OK with pain but can't take painkillers .....will try to take motrin !!!
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I've been taking tamoxifen for a little over a year. I just recently have been getting headaches so of course I'm worried! Anyone suffer from headaches while on tamoxifen that started after taking the meds for a little bit?
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Debbiema - Yes!!!! My main SE is a head ache. I've been on tamoxifen since the beginning of September and the headaches started within a few days. At first they were bad, then seemed to get better, only to creep back up again. Tylenol, ibuprofen, or a combo of the two does not touch it. My maintenance Herceptin seems to make it worse for a few days. And it seems to get worse when I am about due to take my next pill. Although this is not a more common SE, it is one that the drug companies note, stating that it is more common SE for men. (I hadn't realized that men take the drug, and don't even want to go down the road of thinking about what this data says about my hormone levels...). Does anything help with your head aches?
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Hi formydaughter! Sometimes when I take advil the headache subsides a little, but it's like a pressure or squeezing in my head! May have to give the doc a call! Thanks for your feedback!!
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Debbiema - I hope that your MO helps and your head aches get better!
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Hi everyone. I've been taking tamoxifen since August. I finished chemo in May, and radiation in August. I haven't had a period since March. Lo and behold, I started my period today. Anyone else have their periods come back while taking tamoxifen?? I plan on contacting my onc this week, but just wondering if this is typical.
Thanks!
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L2girl,
I had similar symptoms like you while using tamoxifen. I had a cyst in my right ovary plus very high estradiol levels.
I have found out why sometimes the estradiol level is too high especially in premenopausal women. Since Tamoxifen stimulates the ovaries, it sometimes creates cysts in the ovaries. Women with cysts have a higher estradiol level than women without cysts. This is documented in this link:
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new2bc, thanks for that interesting link. That does sound very much like me: premenopausal and did not do chemo.
Btw, at my 3 mos follow-up tvus, it showed that while one of the cysts went away, 2 new even larger cysts appeared in its place! I have a feeling it will just continue on like this. I'm supposed to go back one more time to get rechecked, because it was "strongly suggested" by the radiologist, but my Gyno didn't seem too worried.
I am currently on a break from tamoxifen per my MO, but for a different reason. To find out if it is the source of my chronic pain issues.
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L2girl,
I did not do chemo either. My estradiol level was very high at least for a year. I did not know I had a cyst until it was time for my annual check up. But my estradiol level dropped from 400 to 10 in a matter of a month recently and I switched to Arimidex. I am 52 years old and officially in menopause. What chronic pain do you have?
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new2bc,
Well, regarding my chronic pain issues it might be easier to answer what doesn't hurt! But I have been doctoring for pain in my shoulder, upper back, lower back, hips, and tailbone for over 6 months, and have tried just about everything, so my MO said it very well could be due to tamoxifen, so he put me on a break from it to see if that is the cause.
BTW, do you think the reason your estradiol dropped so quickly was due to menopause?
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L2girl,
I think so. I did not have a period for a year but still had the hormone levels of premenopausal woman. Nobody can tell for sure. You might want to check your estradiol level and other hormone levels while you are off Tamoxifen to see if there is any change when Tamoxifen is out of your system. I hope your pains go away to put your mind at ease. Let me know after you check your hormone levels.
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thanks, new2bc,
My tamoxifen vacation is over in a few days, and unfortunately it did not produce the results I was hoping for. It does not seem to be the source of my chronic pain. I was so hoping it was the answer. So, I am pretty bummed about that.
I am curious to find out if it had any effects on the gyno issues, particularly the the ovarian cysts, when I go back for my ultrasound at the end of March. Although, by that time I'll have been back on it for awhile, so maybe won't notice anything different.
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L2girl - how long of a break did you take from the Tamoxifen
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bayou babe,
It has been nearly 6 weeks. I was supposed to be only for three weeks, but due to some extenuating circumstances, I asked my MO if I could stay off longer. But still no differnce at all. Back to th drawing board, I guess.Aargh!
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L2girl - I just sent you a pm
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L2, on kindle with strange auto correct. Didn't do T,but did the three AI' s. Totally body pain took months to disappear.
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good to know, sas-schatzi. Although I would think I'd feel at least some differnce by now, but if anything, I feel worse. How long had you been on those meds before stopping? I had barely been taking tamoxifen for a year.
And I'm on an iPad, also with really weird autocorrect, so it takes forever to type a a simple message. Some of the things it comes up with are pretty funny
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L2, Arimedex April till Dec. finger count eight months. 8 week washout. Femara about 6weeks. Aromasin maybe 1 1/2 years. Arimidex took post polio pain to fibromyalgia. The 18 pints of tenderness for fibro dx were all pretty much there with the post polio. But I never let them give me the fibro dx. Strange little pea sized bumps that were excruciating--in upper extremeties, appeared after awhile on Arimidex. The muscle/bone and joint pain went to way higher levels. Enough that I was on a Fentanyl patch Not sure how long it took to clear after Aromasin, but it did. Pain really changed when I was getting thyroid replacement after Thyroidectomy and radioactive Iodine. They recovery kind of overlapped. So, much going on I wasn't paying exact attention. Bottom line for me it was very long. Definitely heard of others just a few weeks. Not sure what's in the literature re:those that have long term effects. Your doc may be working with data that says the effects wear off quickly. Again no experience with T, but for me the AI's were not good. -
Hi there I am new to this site but not to tamoxifen, I was diagnosed in 2008 at the age of 46 and chemo threw me into the menopause, I am now in my 6th year of tamoxifen and have been having a brown watery discharge which comes and goes.. I have had a swab and vaginal scan which came back clear but my doctor can't explain the causes and I I am am worried, has anyone else had similar problems after extended use of tamoxifen
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Hi Beebeth, and welcome to our community. Take a look at this page on vaginal discharge as a side effect of Tamoxifen and other medications: Vaginal Discharge
Thinking of you!
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