Postmenopausal bleeding after stopping tamoxifen
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FarmerLucy,
Since my OB/GYN deals with only a few tamoxifen patients, I was wondering if your DB might be able to answer a question of mine.
I started tamoxifen at 49 (perimenopausal) and finished at 53 (post menopausal). Ten weeks after stopping tamoxifen I had a "period." A few weeks after the period (still spotting a bit), I had a TVUS which showed a lining of 17mm). My question: Is it normal to have a lining of 17 mm in this situation? I did have a biopsy taken last week and am awaiting the results. I have had two other in-office biopsies and a D&C since August of 2011--all B9. I don't expect any different results this time, but am concerned because the lining (which has measured up to 23mm on other TVUS), is still quite thick. Of course, I am still spotting (now day 32) verrrry lightly. I wonder, if this keeps up for a few months, will my lining finally thin out? Am I lucky, or what?
Of course, my OB/GYN has all of these other tests planned.
1. If I stop bleeding soon: wait a few months and do another TVUS to check on the thickness of lining. If lining is still thick, schedule a D&C.
2. If bleeding does not stop soon: schedule in in-office procedure where they fill the uterus with a liquid and look for polyps.
Of course, all of this could eventually lead to a hysterectomy anyway. I sometimes wonder if I should just have everything removed to avoid all of these tests and procedures. ARGH!
Thanks for listening.
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LLN - I'll ask him the next time I talk to him. I know what you mean. I hope it all settles down soon for you. Removing my breasts was an easy decision because it didn't impact anything besides the breasts, but to me a hysterectomy is a whole different story.
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FarmerLucy,
Thanks. I appreciate any information I can get regarding this complex decision.
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To those asking if you can get uterine cancer after stopping Tamoxifen the answer is yes. I was dx about 5 years after stopping T. I did not have full on bleeding but intermittent brown-pink discharge. Please do not ignore post menopausal bleeding. Get it checked out for sure. However I would go thru the diagnostics not just take everything out "just in case."
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Kareenie,
I have a question for you: Did you have a thickened lining all those years after stopping tamoxifen? If so, did you have any D & Cs to thin it out? And if yes to D & C, did the lining thicken up again? My big concern is my 17mm lining and whether or not it will thin out. I am 54 and post menopausal. I thought it would have thinned out by now, especially after my post tamoxifen "flush."
So nice to know so many ladies survive all of this confusion. Thanks for your input.
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Well, I just got the results of my endometrial biopsy from my GYN. Everything is fine. Of course, since I'm still spotting, we need to do another procedure. This will be an US with fluid so that they can see all of the lining and whether or not there are polyps. If there are polyps and the lining is still thick, then she will want to do a D&C. I am wondering if I should just skip the D&C and go straight to a hysterectomy. Mine would have to be abdominal, so that wouldn't be much fun. I am so tired of monitoring everything. I would appreciate any thoughts or advice from both points of view: keep monitoring OR hysterectomy?Thanks to all who respond.
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I'm hoping you ladies can help me out. I have been off Tamoxifen for about a year after being on it for 5 years. I mostly had no periods while on Tamox. About 6 months after I stopped, I had a light period, and 3 months later, a regular period. I am not worried, but my PCP and GYN are worried. They think I am post menopausal and now I'm bleeding. I think I was never post menopausal and am still menstruating, albeit not regularly. My uterine lining was 13mm, then 9mm, now 7mm. What do you think?
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adenacb,
It sounds like you have been getting ultrasounds to measure the thickness of your lining. I'm surprised your GYN hasn't suggested an endometrial biopsy. That would rule out uterine cancer. Do you spot between "periods"?
I am going in this Wednesday for an ultrasound with fluid to look for polyps and check the thickness again. I am still spotting, but only one teeny drop every second or third day. Who knows? I may be done with this now, since I haven't spotted for almost three days straight and am not feeling like my period is about to start anymore. Hope that's the case. I'm tired of all the confusion.
Let me know what you decide to do. I know how tiring it is to constantly be seeing doctors.
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LLN - I haven't talked to my brother yet (I thjnk I irritate him by hounding him with shop talk) however I did talk to my gyn today for my preop appt and I was able to ask her what the normal thickness of a post menopausal uterus is and she said around 5 mm.
Also FWIW my ooph / D&C is next tues and my gyn said I should be good to go the next day (but take it easy)and can drive as long as I'm not on pain meds.
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Yes farmerlucy, my ob/gyn said the lining should be 4mm. Mine was 12mm but I'm not quite post menopausal. I had a D&C several weeks ago. Path report was benign . Yay! I had no pain whatsoever and could have gone out the same evening. It was the anesthesia that made me sleepy for the afternoon. Post op checkup is next week. I hope all goes well for you. I'm not familiar with recuperation from an ooph. Wishing you the speediest recovery.
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Thanks dnice! Glad you are doing well.0
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farmerlucy,
Thanks for the info. I go in tomorrow for another US. This time with fluid to look for polyps. I will be curious to see if the lining is thinner. My GYN said that polyps could cause it to look thicker on a regular US, but it's really the polyps, not the lining. Craziness!
I didn't know you could have a D&C and an oop at the same time. Interesting to know. Hope all goes well. Keep us posted.
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Thanks LLN - Will do. I hadn't heard of it but it is a great solution for me so I asked and she said ok. It's a twofer!
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Well, ladies, I just had my US with fluid today to look for polyps. My GYN did find one--very small. My spotting stopped 7 days ago and the new reading on my lining is 4mm, down from 17mm (which was partly due to the polyp in the original TVUS that did not involve fluid and therefore could not spot polyps). So it sounds like I am definitely in the post menopuseal range for the thickness of my lining. Yay! That post menopausal "period" that I had 7 weeks ago was probably just a post tamoxifen shedding of the thickened lining. Since the spotting has stopped, I am certainly feeling better. Now more cramping and nausea.
Next steps:
If spotting starts up again--D&C
If nothing happens--US with fluid in 4-6 months to check on lining and polyps
Maybe I will miss the hysterectomy train.
So glad to have a place to share concerns and learn from all of you real experts who are in the trenches with me.
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Excellent news LLN! And very interesting too! Time to celebrate? It'll be tough 'splainin the reason for your celebration tho!
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Hi LivingLifeNow. Good news! Just curious what your GYN considers a small polyp that doesn't require treatment. I've always been told mine need to come out. My smallest one was 1cm.
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FarmerLucy,
Thanks for the virtual high five!
Coraleliz,
My GYN said that my polyp was in the mm range. I am still waiting for the official printed report. Since this was the first time they've ever seen any polyps, and it is only one, and my lining is now down to 4 mm, and I am off tamoxifen, and I am postmenopausal, I think she feels it is safe to let the polyp go because it will probably shrink in the next few months. (No more estrogen feeding those polyps and lining.) From what I've read of your previous posts, you are still on tamoxifen (lucky you), and have had polyps growing quite often. For that reason your doctor probably feels it best to take them out with D&Cs at this time. Wishing you luck with your last 18 months on tamoxifen. Can't wait till you're done.
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livinglifenow- thanks for the additional info. Since my surveillance has been increased to every 6months(was yearly), a 1cm polyp was found that wasn't causing bleeding(yet). I wondered if it could wait 1 year. My GYN said that there is a less than 5% chance that it would become cancerous but that it was best to remove it sooner than later.
Looks like your gyn issues are resolving. Great News!
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coraleliz,
Although it's a pain to keep going back every six months and getting D&Cs, you should probably continue until you are off the tamoxifen. Tamoxifen really increases the estrogen in your body which of course can grow polyps, fibroids, and thicken the lining.
I am so glad to finally be done with tamoxifen. I can't imagine those women who agreed to go on it for 10 years. In fact, some of the stuff I read about that study showed that 30 to 50% of the women quit before the ten years were up. Personally, I feel if I had stopped at 4 years I wouldn't have some of the issues that I'm having now. I think each of us has a different toxicity level regarding a specific drug, and I think mine was probably four years.
The reason I say this is because at four years and four months I went off tamoxifen for 24 days. Within three days the swelling in my body went down, my belly fat went away, my head felt better. It was amazing. So, I thought, I can do this another eight months. Then in December when I went off it for good at five years, I didn't have the same reaction. I felt like I was still on it. However, I am feeling somewhat better now. I sometimes wish I had stopped it completely at four years and four months. I had certainly considered it greatly. But, I'm a type A personality and simply had to finish what I started.
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Hello,
Sounds like spotting after stopping Tamoxifen is quite common. I was 42 at the time of my diagnosis, did chemo, had bilateral mastectomies and started Tamoxifen. I finished my 5 years of Tamoxifen at the end of November and even though my oncologist wanted to switch me to Ameridex for the next 5 years I decided to take a 3 month break and see how my body would feel. I have not had a period since my first chemo in August of 2009 and am 48 years old now. Everyone keeps telling me I am post menopausal but the blood test show that I am not completely there yet, however since I have not had a period in over 5 years docs insist I am post menopausal. During my 5 years on Tamoxifen I had yearly biopsies of the uterus and TVUS. My biopsies all came back normal (last one was in November 2014) and Ultasounds showed thickening of the uterus (15mm 2 years ago). Now 4 months after stopping Tamoxifen I still have not started Ameridex. On Thursday I started spotting, more like blood mixed with some kind of white mucus and what looks like little chunks falling in the toilet. Could this be a period or my uterus shedding ? Has anyone else Experienced This Before ?
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marie111,
I'm beginning to see a pattern with stopping tamoxifen. If you look at my previous posts in this forum, you will notice that my lining was quite thick too--17mm. It's now down to 4mm after my post tamoxifen "period." I did have spotting off and on for about 42 days after it initially started. Now it's all gone and I no longer have any cramping or nausea.
It sounds like you are experiencing the same thing. However, I'm sure all of your doctors will want to do further research. That's what they get paid the big bucks for.
Good luck with everything and keep us posted.
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Thanks LivingLife,
I saw my GYN yesterday and he simply fells that
my hormones are kicking back in and that I am having my period again. He is sending me for a blood test to check my hormone levels and as he says "prove that I am not menopausal" .... We shall see .... I asked him about doing a TVUS and he feels that is not necessary right now. I also called my ONC today and am waiting for her to call me back.
I guess that if my blood test show that I am menopausal, they will investigate further. If my hormone levels show that I am still peri-menopausal I will have to decide if I go back on Tamoxifen or not, I really don't want to .... I didn't have to many bad side effects while on it other then really bad hot flashes and some weight gain (more like bloating I think) but I was really looking forward to being drug free.
I am still bleeding - day 6 - it's not very much but enough to feel like a period. The question is, has anyone out there resumed regular periods after 5 years of Tamoxifen or is this just a one time deal to shed all that extra uterine lining ? And how long can I expect the bleeding to last before I start to worry
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FarmerLucy,
I've been thinking about you and wondering how your oop/D&C went. Are you up and about yet?
Wishing you a speedy recovery!
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LLN - it went well! Took about 90 minutes. No path yet but I'm assuming it is clear. I am a bit sore still but ready to get back to life. Thanks for thinking of me!
Ps I'm going to try the treadmill today.
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FarmerLucy,
Glad to hear you are doing well!
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YAY THANKS YES IT IS BLEEDING RELATED TO DRYNESS!
Thank you so much yes small spots - getting better. Im using some estrogen creme to see how that works.
Only think I'm worried about is my cancer was estrogen positive so I'm wondering if this creme if a good idea.
Supposed to try it for two weeks...
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hey farmer Lucy , just happy to hear you're finished with procedure. Hope all path news is good. Just finished D and C a few weeks back. It's tiring to go through all this med stuff but GOD we women are amazing. Wishing you the best.
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Thanks Dnice! Should get path tomorrow. Yeah we ARE awesome.
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Clear path report for me! Wahoo! Final path showed simple ovarian cyst and benign uterine polyps. I am very relieved. So long Tamoxifen. The ladies on this site gave excellent advice. You ladies are amazing! Muah!
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Great news, farmerlucy! And I agree that the ladies on this site give excellent advice. I get straighter answers here than I do from any of my doctors!
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