Postmenopausal bleeding after stopping tamoxifen
I was diagnosed at age 47 and was on tamoxifen for just over 3 years, which I recently stopped. Was perimenopausal upon starting it and stayed that way for over a year. I'm 51 now and have not had a period for 25 months. Well, 3 days ago, I started what looks and is acting like a period. Was heavy for 2 days and is now getting a little bit lighter, but still going steadily. I'm thinking the uterine lining, which had built up a little, is possibly shedding now, can't believe it would be an ovulatory period at this point. Wondering if anybody else had a similar situation? I know that I have to call my Gyn soon and will probably need a biopsy. Am not really worried that it could be uterine cancer, as a sono 6 months ago just showed a slightly thick lining of 8mm and I believe these things are very slow growing.
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hmmmmm... did you ever get a hormone panel from your gyn to determine if you were menopausal ? I told my onco that Tamox is too hard for me and that I want to stop it. He refuses to look at my hormone panel from the gyn confirming that I am menopausal - he wants me on Zoladex, then AIs. I don't think I want to go that route. Are you doing DIM or anything else ?
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My last hormonal panel was done sometime in the past year (more than 6 months ago) by my Onc, and it showed estradiol of 33, which was just above the postmeno cutoff of 32 and below. My FSH and LH were not in the postmenopausal range and have never been, as I've had these tests a few times in the last 3 years. I was told that tamoxifen can somehow skew these results, but not given a good explanation for how or for what value the results would actually have in that case. I don't think the doctors really know either.
Anyway, my Onc recently decided that with 2 years of no period, he was satisfied that I was postmenopausal without doing any testing, and gave me a Rx for aromasin. I have not started it yet, am not happy about using an AI, and for now want to just get my body back to normal for awhile, mainly due to problems with insomnia and achiness. Don't know when I'll start that AI. I actually have been taking a supplement for the past 3 weeks which contains DIM, thinking that this will give me some protection while I'm not taking the prescribed antihormonals. I also have a stellar diet, eat tons of fruits and veggies, whole grains, nonhormonal dairy products, etc.. and exercise frequently throughout the week.
Maud, I don't blame you for not wanting to do zoladex and an AI. I would tend to think that that combo would be harder to tolerate than tamoxifen, but I know that some women do have a harder time on tamoxifen. Many of the symptoms I had on it could also be attributed to going through menopause at the same time, which is another reason I want to completely get it out of my system, to see what improvements I feel.
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"I don't think the doctors really know either" - you're absolutely right !
My gyno argues that I'm menopausal, he should know...., then the onco refuses to acknowledge that I am, I'm 55 for God's sake !! Anyhoo, I want to drop Tamox after two years, enough is enough, and have started a combo of DIM, CalciumDglucarate, grape seed extract.
Rgiuff, make sure your DIM does not contain patent BioResponse DIM, as it contains soy, I've seen many sisters here unknowingly taking it
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hi ladies, i guess that we are here reading & posting is great news. however i'm finding myself annoyed after everything now to have heavy, i mean heavy bleeding! diagnosed with breast cancer in oct. 10, chemo for 5 months & then followed up with herceptin, which i could not continue because of my ejection fraction. double mast. march 2011 with expanders. radiation june 2011 and then 2 weeks after radiation ended, i was hospitalized for an infection therefore, my expanders had to be removed! through this whole ordeal, i have been on & off tamoxifen. basicallly because of the side effects i was getting hot flashes, aches, weight gain... my onc. wanted me to stay on it. so after a year or less, i stopped taking it again about 5 months ago. the longest i've been off it. i'm going to be 44 in sept. & was told the chemo threw me into menopause. currently i have a paragurd iud in, non hormone kind. & have 3 large fibroids around my uterus. i was never a heavy bleeder when i did have my periods. it was about 3-4 days of spotting & that was it! now just 2 weeks ago i started spotting like my old period. well, 2 days ago the flood gates opened & i'm now bleeding through a super tampon plus a pad every hour and a half! the gyn wants me to go to emergency, really? what can they do other than bleed all over their bed & charge me my $250 insurance fee? i'm waiting it out for awhile until my gyno can see me cuz he wants to do an ultrasound & exam. i'm ready to throw in the towel with getting a full hysterectomy & be done with it all! after reading some posts, i feel pretty much normal, however every person has their unique secenario. just though i'd share & welcome any thoughts. thanks for listening.
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I finished my 5 years of Tamoxifen January of 2012. April I had 1 day of spotting and thought it odd and then this July I had a 4 day bleeding/spotting. I knew this wasn't right and called my primary doctor, she ordered an ultrasound and it came back with "thickening of the Uterus" and now I am scheduled to see a GYN. It's bugging me so I also called my oncologist to let them know whats going on.
I just got done reading some articles on studies and findings onthe risk of Tamoxifen and its cancerous effect on the uterine.
Now I wish I had never taken Tamoxifen.
I have been suffering from fatigue, weigt gain, blotting, pelvic pain, back pain, depression, muscle cramping in my legs, which magically went away within 2 months after ending tamoxifen. I kept reporting all these symptoms to both my primary and my oncologist, and for the last 2 years I felt that I wasn't being listened to.
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I started tamoxifen at age 49. I was in peri-menopause at the time. My periods were very irregular the first few years on tamoxifen--sometimes light, sometimes very heavy. After 18 months on tamoxifen my uterus had enlarged. I had numerous endometrial biopsies and TVUSs over the next few years. Everything looked fine. My last 2 years on tamoxifen I had no periods or spotting or anything. Shortly after my 54th birthday I finished up my 5 years of tamoxifen. Eight weeks after stopping I had ovulation-like symptoms: egg-white mucus discharge and my shriveled up lady parts plumped right up. I thought, "Surely I'm not ovulating?" Two weeks later I started bleeding, heavily. Of course, I called my GYN and she wants to schedule me for multiple appointments to see what's causing this. I am pretty sure it is going off the tamoxifen and my uterine lining finally having the chance to shed. I am probably not post-menopausal. However, I should be soon. So my concern, if all of her tests show nothing is wrong, is the following: should I get a hysterectomy as well as remove my ovaries so that I don't have to keep going through this? Also, from my research, I am probably a candidate for an abdominal hysterectomy with a vertical incision due to enlarged uterus and no vaginal delivery.
I had no chemo, only rads and tami. Who out there is in a similar situation? Have any of you had an abdominal hysterectomy with a vertical incision? From what I understand, that is the worst one to recover from.
I would greatly appreciate any and all input. Thanks!
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I am still taking tamoxifen, but I've had similar issues, no period for six months, then spotting for several months straight, then monsterous bleeding, then back to nothing for six more months. I've had all the tests, and since I am back to the spotting my onc thought I should call the gyn. Initially I thought if I have to have a general anethesia for a d&c we might as well take everything out. My gyn is agreeable. This weekend I had a chance to speak to my brother who is a gyn onc (I know, lucky, huh?). He gets all the BC ladies at their oncology group when they are having trouble with Tamoxifen. His opinion was if the uterus has been proven benign with a d&C, he would not recommend removal. In my case I do have a shaky family history and he recommends removal of my ovaries. I'm going to talk to my gyn next week. Here is my thought process 1. Determine whether or not I am post menopausal via the blood tests. 2. Go ahead with the d&C and hope everything is fine (which it should be, since the chances of uterine cancer are like 1.5%) 2. While they're there and IF I am still premeno, have them do an ooph.The ooph will accomplish two things - get the ovaries out in the event there is something going on with my family. And make me post meno so I can dump the tamoxifen and go on arimidex. My DB the doc said in the event that the d & C missed some nasty cells, arimidex is the med he uses to treat uterine cancer anyway. (Not really very good consolation!)
Now about the hysterectomy. DB said that there is really no need for robotic unless there is a presence of cancer, and if I do end up with a robotic hysterectomy I should make sure the doc has done a bunch of them. DB does about 150+ per year. Def only look at vaginal laproscopic surgery if it is possible.
While my initial inclination was to take it all out, I am a bit concerned about side effects like urinary incontinence, which DB said happens in a few cases, but can be corrected surgically.
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Farmerlucy,
Thanks for your reply. I am currently doing lots of research so that I will be well-informed when I go to my first appointment. I really don't think anything is wrong, but the process to determine that is lengthy. Been there; done that. I will certainly ask if I am a candidate for a vaginal hysterectomy. I know my GYN is not terribly familiar with women on tamoxifen. I did have a D&C in 2011 when I was first diagnosed with an enlarged uterus. Everything was fine. In fact, my ONC said he has never had a patient my age have uterine cancer, and he has been doing this a looong time. So I am fairly confident I do not have to worry about that.
Keep me posted on your situation and I will update as I find out more.
Tamoxifen: the gift that keeps on giving
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I'm in the process of scheduling another D&C/polypectomy. It will be my 3rd since starting Tamoxifen. Just over 18months left to get to 5yrs.
My GYN suggested "taking everything out".
My MO likes the idea.
(Both doctors are male, hmmmmm)
Now for my female doctors recommendations.
My Urologist "I wouldn't" "a D&C is a much more benign surgery". She went on to tell me that with a hysterectomy there is a 10% chance of a cystocele(the bladder drooping) & causing more problems(incontinence-probably can be fixed with yet another surgery).
My PCP, "I wouldn't" "a D&C is a much easier surgery"(Yeah, tell me about it, I've had plenty if you count all the one's related to all my miscarriages!)
My BS, "I wouldn't" "I'd keep getting D&Cs"
Perhaps the gender difference here is just a coincidence???
I'll keep getting D&Cs until pathology tells me I need to go the hysterectomy route. I just don't want to take the time out of my life right now to recover from a hysterectomy. With a D&C/polpectomy, I'm fine the next day. Although I might regret this path, if right before my 5years mark, I end up with endometrial CA or precancer(then there goes the uterus)
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yeah coraleliz - I think you're on the right path there.
LLN - I wanna give my gift back!
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Ladies,
Thanks for your input. These past few days have definitely been a return to pre-tamoxifen days and this has all the markings of a regular period. At my appointment next week I am going to request that my hormone levels be checked. I don't think I am post menopauseal yet. However, I have got to be close. I also have uterine fibroids. From what I undestand, these shrink after menopuse. Perhaps in six months I will be post-meno and the need for a hysterectomy and ooperectomy will no longer exist. I am sure my GYN is going to suggest another TVUS and perhaps an endometrial biopsy as well. If I could have a vaginal hysterectomy I might just say "do it!" However, I am much more reluctant to have an abdominal hysterectomy. So many questions and so many decisions to make.
Coraleliz, interesting responses by male vs female docs. Strangely enough, I once got opposing advice from my ONC(male) and his assistant(female). You would think they would be on the same page! I sometimes feel all of this conflicting advice is so that we make up our own minds and the docs don't have to feel responsible.
Farmerlucy, and here I thougt this year I would just have a few checkups and that would be it. I think I am going to have to start accepting the fact that once one is past 50 one is going to have some health issues each year. It is just part of life, cancer or no cancer! Very tough on my brain since I often think I'm still in my 30s. Ha!
Wishing everyone a great weekend!
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I was perimenopausal.when I started tamoxifen, and my periods gradually spaced out over months. I then went almost a year without one, then had 2 of them a month apart. I then went 2 years without a period, then had one a few months after I had stopped taking tamoxifen. I was 51 at the time. I had all the signs and symptoms of it being a period, and was absolutely sure that it was just my ovaries having one last encore. But my GYN insisted it could mean a problem and scheduled a D&C. She also suggested that women in my situation sometimes just had everything removed just to be safe. I told her absolutely not, let's see what the D&C shows. Everything turned out to be benign, I was told it was probably just excess lining shredding. But hysterectomy/oophorectomy was the last thing I would have thought to do. I've read that ovaries are valuable to keep even after menopause, as they do continue to put out small amounts of beneficial hormones. And being a nurse, I would avoid unnecessary surgeries at all costs due to the risks of adhesions and possible damage to nearby nerves and organs. I'm happy to keep my uterus as i do feel that it plays an important part in the big O. (Sorry if TMI) While I was on tamoxifen, i also had a thickened lining up to 10mm, which I was told was normal due to the tamoxifen. I also was told that I had a fibroid, which disappeared after menopause.
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Rgiuff,
Thanks for the additional information. My situation sounds so much like yours. I can't wait for my appointment tomorrow to see what their reaction is to all of this. Of course, my GYN doesn't deal much with patients on tamoxifen. In doing further research, I found that tamoxifen is actually used in some countries as an infertility drug because it increases ovulation dramatically. So, I'm thinking, if one is on tamoxifen starting in perimenopause and then continues it right around the time you might become postmenopausal, wouldn't it make sense that the tamoxifen is causing you to continue to ovulate? Then, after you go off it, you have to have a few final "flushings." In a lot of ways I just find all this fascinating. I will keep everyone posted on what's going on with me so that hopefully, it will help others who are in a similar situation.
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I just got back from my appointment with my GYN's nurse practitioner--also a breast cancer survivor, by the way. This is day 7 of my "period," so I still have a bit of spotting going on. She performed an exam, said my ovaries feel fine and my uterus doesn't feel enlarged, but does have fibroids, and my cervix looks great! She ordered blood work to determine hormone levels. Additionally, I will go in for a TVUS on March 10. Will get my hormone panel results at that time, as well. She seems to think it is going off tamoxifen that has caused the bleeding, but that checking everything out is a good idea.
Rgiuff,
I just reread all of your posts and am convinced I am on the same path as you. I do have a few questions for you, since you have now been off tamoxifen for a few years, according to the dates on the posts.
1. Was your first post-tamoxifen period pretty much like a normal period?
2. How many post-tamoxifen periods did you get? Just the one, or did you have more than one?
3. If you had more than one, how many and what were they like?
4. Did you have your hormone panel done again? If so, how many months after stopping tamoxifen did you get it and what were the results?
Thanks for any and all information. It's great to be able to compare notes.
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OK, livingLife, to answer your questions:
The first period after tamoxifen was also my last ever period, and it acted just like a normal period, started with heavy bleeding and then dwindled down over about 5 days total.
I did not have any hormone levels done after that. My hormone levels prior to stopping tamoxifen always showed that I was not quite completely postmenopausal yet, with FSH not terribly high and estradiol always just at the borderline. I got so depressed seeing the dwindling hormones, that i just stopped asking for the levels to be drawn. And GYN didn't believe in drawing them anyway, said that they go up and down throughout the day.
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rgiuff,
Thanks for the additional information. I have a feeling I am following right in your footsteps. It all just makes so much sense. Just wish "they" knew more about how tamoxifen really affects everyone so we could avoid all this unnecessary testing.
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I had my TVUS this afternoon and got the results of my hormone panel, as well. Hormones--all VERY postmenopausal! Thank you, tamoxifen! TVUS--lining still quite thick (17mm. I've had as thick as 23mm over the past few years.) So, it is a bit thinner than before. I still have my 4 larger fibroids (on past TVUS, as well) and also lots of tiny ones. Thank you, tamoxifen. My "period" started almost 3 weeks ago (about 10 weeks after stopping tamoxifen) and I am still spotting. Next step--endometrial biopsy. I've had many before and all have been clean. I am having the biopsy next week. Should have the results a week after the biopsy. Just wish there was more information about going off tamoxifen for women who were perimenopausal when they started and postmenopausal when they stopped.
I guess I'll just have to take this one step at a time!
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What I was wondering about is.......When I stop the Tamoxifen do I remain at an increased risk of endometrial cancer..........Will I need to schedule a GYN appt, to make sure I don't have any polyps or my lining isn't too thick, to coincide with stopping Tamoxifen? What happens if I have a polyp that just gets left there? I'll most certainly be postmenopausal(58yr). I'm definetly not going 10yrs on this stuff. I think the term "uterine toxicity" I see associated with Tamoxifen refers to me with all my polyp growing & need for D&Cs.
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coraleliz,
I am no expert, but if you've had polyps I would probably have a biopsy or two the first year you are off tamoxifen. Check with your ONC and GYN. If you've never had an endometrial biopsy, it's not too bad, just a bit of a hassle.
I have no polyps, just a thickened lining and lots of fibroids. I'm sure the biopsy will come back fine. My big concern is all of my fibroids and the constant spotting, bloating, cramping, and all the other "yuck" I feel. It would be nice to feel better.
I wish us both luck on this incredible journey.
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Coral - I asked my Gyn about that and she said the risk ends pretty much when I stop T. However being the skeptic I am I would have to get confirmation of that before I relied on it. I'm heading for a d&c and ooph as soon as they can get it scheduled. My doc said everything should calm down after that.0
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Livinglifenow-I've had endometrial biopsies & like you they weren't bad. What's been happening with me, is my lining builds up, I get crampy & PMSy. Then they find a polyp. I get a D&C done when the polyp is removed. My symptoms diminish greatly. Prior to starting Tamoxifen, I was concerned about my fibroids. So far they have behaved. I have one that's sometimes problematic, blocking the opening to my cervix
Farmerlucy- Sometimes I feel like I'm out in nowhere land with this GYN stuff. My PCP told me, that she's had over 80 patients on tamoxifen & none of them have had these GYN troubles. Although she did tell me that it's well documented in "the literature". I was stretching my GYN appts out to about once a year. The GYN told me to come back in 6-12 months. So I picked 12. Then he said to increase surveliance & come back in 6 months. Sure enough I had already grown another polyp by then. My thinking is it could have waited another 6months. Everything GYN wise has come back benign. I see the GYN next week for my postop(polypectomy/D&C) check. He's already called me to tell me that everything was B9. I hope he doesn't tell me to come back in 3 months! He said that I would keep growing polyps as long as I stay on Tamoxifen. I work at our local hospital & an gynocolgical oncologist operates every Monday. All the surgeries seem to be for endometrial cancer. They are usually women in their mid 50s-60s. As part of my job, I have to look at the surgery schedule. Can't help but wonder if they are former BC/tamoxifen patients. I've considered making an appt with her & asking her this. Or perhaps if I run into her at work? Good luck with your upcoming surgery. Just curious, how is the ooph suppose to help if it's the estrogenic effect of the Tamoxifen that causes these uterine problems? Will you be switched to an AI?
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Yep I'll move onto an AI. I was all set do do a full hyster/ooph until I talked to my brother who is a gyn onc. He sees all the BC ladies at his group with issues like us. He said if the uterus is proven benign with a D&C there is no reason to remove it. He said he would have done a ooph long ago for me due to family history. The ooph does two things for me - it eliminates the ovarian cancer risk and it allows me to move onto an AI. At 54 I doubt the loss of my ovaries is going to do much in the way of SE but you never know.
I don't want a long recovery nor do I want to increase the chance of things like incontinence issues with the hyster. DB also said in the very slight chance uterine cancer was missed in the D&C, aromasin is the drug of choice.
I had no idea that so few ladies have our SE. 1 in 80 - wow- we sure are lucky!
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Hi everyone. I am new to this thread. I am just wondering how common the polyps are for women on tamoxifen? I just had revision surgery for reconstruction last week. When I mentioned I had some symptoms to the ONC she sent me to the OB/GYN today. He did an ultrasound and believes there's a growth so I'm scheduled for a D&C next week. Ugh!! Does this seem to occur continually? I'm so tired of being a patient.... I was premenopausal before the DX so they will not let me go on an AI yet. Not sure what to do. Or even ask? Thanks for any thoughts.
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I have similar symptoms. They started around 10 months in. I don't know how common it is. It is a total pain. I'm ready for this part of my life to be over so I'm getting an ooph on top of the D&C.
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HELP! I'm so confused - getting potting after none for 5 years???? How can this be? I had everything taken out. Stopped Tamoxifen a couple months ago... Im scared to find out what this means. Thought I was done after five years of "torture"
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FisherFrek,
You say you are spotting after five years of nothing and a hysterectomy? That does seem a bit odd. Is the spotting enough to show up in big spots in your panties, or just teeny spots on toilet paper when you wipe? If it is only teeny spots on toilet paper, there is a chance it is a yeast infection. I had my first one while still on tamoxifen a few years ago. Since I was post menopausal, I assumed it was vagina dryness so I started using a vaginal moisturizer. This went on for eight months with spots of blood on my bathroom tissue. When the "dryness" started to creep up my butt crack, I visitd my GYN. It was a yeast infection. Since I had never had one before, I was clueless as to the signs. I got treated and have been fine ever since. It's worth a shot to have it checked out. Good luck!
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hi all. Had a D&C yesterday. Ob/Gyn removed polyps (2) and took biopsy of endometrium . No path report for a few weeks. I'm concerned about staying on tamoxifen. Ive only been on it for a year and a half. I was premenopausal when I started and then never had another period. God this is confusing to navigate through.
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Dnice - glad your procedure went ok. Wishing you only B9 results
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Thanks everyone. I'm sure all will be fine. Heading back to my PS for post op appt next week. Then I'll tackle this tamoxifen conundrum. Gosh this is like medical dominos. The med to fix one problem stirs up another.
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dnice- it shouldn't take "a few weeks" to get the pathology back. Maybe 2 days plus however long it takes for the doctor to call you. What I've found is that if they deliver babies, it takes longer because gyn patients aren't a priority. If you're concerned, you might want to call & let them know you're concerned.
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